Looking at me, you would never realize that I have been caught in a horrible flare-up for more than 30 days. That’s why I guess Fibromyalgia is called an invisible illness. Those who live with invisible illnesses carry certain burdens that will not be visibly apparent sometimes even to those closest to them.
In the last 10 years that I have been living with FM, I can positively say that I have heard/seen the gamut of reactions about my life with pain……blatant disbelief, shock, encouragement, concern, feeling of being resigned, anger, frustration and finally impatience.
September is Pain Awareness Month and I thought a post on Invisible Burdens posed by chronic (and invisible) pain conditions such as FM can provide some insight and hopefully create some awareness on the complexity of chronic pain and the burdens it poses.
I worry about medical professionals invalidating my pain
I am always in limbo with FM – not healthy enough and not sick enough. It makes it difficult to explain to doctors about the myriad of symptoms. It took me a whole year and a half before I got an official diagnosis for FM in 2008 and it was still labelled as a “wastebasket condition.” Doctors have told me that “It’s all in my head,” “my pain is psychosomatic,” and several other insensitive comments. Some went as far to dismiss the side effects of FM meds such as Lyrica and Cymbalta that I was experiencing. So I became wary of talking to doctors about my pain but I finally saw one as my recent flare-up was severe.
This doctor was not only patient but also listened and understood the impact of those side effects on me. He said that there is yet another new FM medicine in the market called Savella but he is not going to prescribe that to me. Instead he discussed with me about alternative therapies that have worked in the past for me and put in referrals for the same. I came out of that appointment feeling light, relieved and smiling, despite the pain. Receiving validation for your pain makes me feel that my experience is finally taken seriously and being believed.
I struggle with pain everyday in different forms and take it one day at a time
Chronic FM pain is a real pain in the you-know-where and when it is visited by its old friends – migraines and depression, it gets even more difficult to deal with it all. But when when you are in fact not only experiencing overall body pain but also having a migraine attack and feeling depressed, things can get out of control real fast. Like I mentioned earlier in this post, this flare-up has been there for 30+ days and there are times (like today for instance) when I felt totally beat up and wanted to literally jump out of my skin.
But when you have duties to fulfill, you recognize your symptoms for what it is, keep an eye on it and do the best you can. And the best might be just getting through the basics today to going all out tomorrow. It all comes down to the choice of whether you want to do something today that you end up in bed or worse get a flare-up for the next week/month or so (OR) sit it out so that you can carry on with those daily and routine activities – lunches packed, homework checked etc.
I manage pain in a way that works for me
Not everyone chooses to take prescription meds for their pain because of several reasons. For instance, I was on a cocktail of them until I realized that they were doing me more harm than good and hence I quit ALL of them cold-turkey. I haven’t taken any FM prescription meds for more than 3 years and hence can feel the full-blown effects of FM pain.
On the same note, I do take painkillers to break the pain cycle despite the side effects. It often boils down to how much pain I can tolerate on a given day and time.
How I feel pain and manage it is unique to me based on my lifestyle, priorities and experiences and it will not be the same for everyone. And I don’t have to justify the way I manage pain.
I really cannot get over my pain or not think about it
My older son asked about my flare-up and I casually mentioned, “can you even believe that my flare-up has been going on for more than 20 days?” His matter of fact response, “Of course, I do. Why would someone lie about being in pain?” And then he followed up with, “just cos you are doing a lot of things doesn’t mean you are not in pain. Its just that you do it.”
If only I had a dollar for every time I heard in the last 10 years, “But I saw you doing x,y,z, so you must not be in pain,” or “will you ever say that you are without pain?” or “how can you be in pain when you are active? or “How can you be in pain ALL the time, maybe you should stop thinking about it,” “Maybe you should exercise more/try out a miracle cure/pray more/____________(Fill in whatever),” I would have had enough money to pay for both my Master’s degrees.
People have also come up to me and said: “But I saw you yesterday in XYZ,” or “You did XXX yesterday/last week but now you are saying you cannot do YYY, you are just using FM as an excuse” or something similar. This is the one thing that most people have trouble believing. They think I use my pain as an excuse when in reality I show up and do things despite my pain, and sometimes it hits me hard so that I have to scale back.
I know it is difficult for most of us to comprehend being in pain all the time but when your comments end up being insensitive, it not only hurts me, it majorly pisses me off because in addition to dealing with my pain, I now have to not only sugarcoat the truth but also justify my pain.
And do stop right there when you tell me that God only tests those who are strong or some nonsense like that. I know and firmly believe that God is not sitting up there, wherever there is, with a spreadsheet of things to hand out to the strongest.
Like my high school teacher told our class once: “if you don’t have anything good to say, just zip it.” You think your words are comforting but they are anything but and please spare me your oh-so-wise worldly knowledge.
It means that the pain is here to stay but it does not DEFINE who I am
Living with pain for 10 years is a lifestyle change. Not every disease with a diagnosis has a cure and FM is one of those but I have come to terms with it. I try to plan ahead but I also know that I might have to cancel or not be a part of it at the last minute. The planning helps me identify any possible hurdles, alternatives and look at every activity as a milestone. It helps me be in touch with the person I was and still am, highlighting those things I cherish and those that are unnecessary and helped me cut off all the unnecessary baggage – both emotionally and physically.
Remember every person with an invisible illness is actually fighting with a smile while dealing with invisible burdens – fighting to fall asleep when they are in fact wide awake, fighting to stay asleep when the pain wakes them up every couple of hours, fighting to wake up and get on with their day, fighting the pain every step of their way and finally fighting the most important fight – being their own advocates and creating awareness – Cos that’s who they are – warriors fighting their own battle and looking for just a bit of understanding and kindness ~ Lakshmi
People living with Fibromyalgia/Chronic Pain are always on the lookout for any triggers that can cause a full-blown flare-up. Despite being in pain 24/7/365, I try my best to manage pain in holistic ways -and avoiding mind-numbing (and potentially harmful) meds, lead a full and healthy (as healthy as one can be with FM and its multitude of associated conditions) and avoid like hell triggers that can lead to a flare.
M-W defines flare-up as
1: a sudden outburst or intensification
2: a sudden bursting (as of a smoldering fire) into flame or light
3: a sudden appearance or worsening of the symptoms of a disease or condition
Flare-ups like everything else can either be moderate or severe. The moderate ones, at least for me are similar to the pain I feel everyday with just some areas acting up – maybe just my shoulders or my back, will usually go away in a day or 3 and cause slight sleep disturbances. And most importantly, I can bounce back without feeling like someone took a bat to me and then ran me over with a truck.
Severe flare-ups are a combination of the 3 M-W definitions – intensified sensations of pain, sensitivity to light, sound and touch, paresthesia (severe burning feeling) of skin and worsened/heightened pain that completely overwhelms your senses, severe fatigue, loss of sleep due to the fact that it hurts even to lie down (ergo my late night/early morning blogging).
Any regular day, my pain levels are usually at 3 and moderate flare-ups can be anywhere between 5-7 but severe flareups literally chew you up and spit you out.
This particular flare-up has been an unwelcome guest in my body for at least the last 10 days and has in fact worsened since yesterday. My right side is mostly frozen and stiff and my pain is at at least a 50 on a scale of 1-10, 10 being the worst. I am functioning maybe on 4 – 5 hours of sleep since this flare-up and while I know that I NEED to get more sleep to reduce the pain, the heightened pain is not allowing me to rest and then I am severely exhausted and the cycle continues (chicken and egg story). I am just functioning on an as-needed basis but I can’t wait for this cycle to break.
Like everything associated with Fibromyalgia, I know that I cannot predict when this flare-up cycle will break but at least I have gotten smarter than I was when I was initially diagnosed with FM back in 2008 (It’s been 10 years already). I pace myself, have accepted my limitations, putting self-care before everything else, being kind to myself, accepting help when it is given, asking for help when I need it, keeping my nerves calm ,ignoring hurtful comments from people who don’t understand or get what I go through (just ‘cos I don’t look sick) and just living in the moment. All I know is “THIS TOO SHALL PASS.” And I am thankful to the wonderful support system I have in Guru, the boys and Rocky. They hold me up when I am down with pain and help me rise out of pain with their limitless patience, no matter how long it takes.
Until then, I am going to follow what Bohemian-Austrian poet and novelist Rainer Maria Rilke said
Just keep going – no feeling is final.
and of course maintain my weird sense of humor (according to Guru) and keep making fun of FM 😛
It was a chance I took and one that could have taken any direction but with the help and support of my family and my dearest friends, I am mostly med-free. I take pain killers when the pain becomes too much but no more mind-altering/numbing meds. This means that I feel ALL the symptoms especially the tremors, overactive nerves and mind that interfered with my already disturbed sleep schedule…..ergo increased pain and sometimes migraines. I desperately needed something to calm myself down and to help me fall asleep (I meditate but I am very fidgety and am unable to relax completely).
I stumbled upon an article in The NY Times on “The Health Benefits of Knitting” and how knitting helped people with pain. I started reading more, looked up tutorials, 101 to knitting and was finally convinced about taking up knitting as a therapy to manage my chronic pain. As luck would have it, there was a message from a neighbor in my NextDoor group that she has free yarn to give away. I went to her house thinking that I was going to get a few couple skeins but came away with 10-12 bags with several kinds of yarn. And the best part was I also got some basic knitting lessons from another neighbor who learnt that I was looking to learn knitting. She took the time (in peak Massachusetts winter during a storm) to come to my house and taught me the basic knit and purl over tea (another reason why I miss Acton-Boxborough).
I gave away most of them to the knitting group at Heller and then started looking for beginner projects that seemed simple and straightforward to me. Sheep and Stitch and Expression Fiber Arts helped me a lot with their wonderful tutorials and tips, not to mention beautiful patterns for beginner knitters like me. Thank you both!
It has been a year since I started knitting and you can say that I am addicted to it. I knit for at least 30 mins everyday and more on weekends. Knitting is very rhythmic and the repetitive nature of it is very soothing (and it has been helping with my sleep).
During a #FMFlare, the pain you feel, your sense of smell, sensitivity to light is heightened, your nerves are irritated and your body feels like it is on fire. It hurts to lie down on the bed…….so you are on edge and restless – the repetitive knit and purl calms your nerves and relaxes you. Your pain turns into something colorful and cozy.
I mostly still stick to basic patterns with knits and purls and make lots and lots of mistakes. I have been shying away from patterns due to my brain fog but I am working on that and hopefully will be able to manage something soon.
But in the meantime, I am going to keep casting on 🙂 one row at a time @ LaksKnits (P.S Thanks Divya for the name!)
Congratulations to the Blanchard Memorial Elementary Band on earning a Gold Medal award today, April 02, 2017 at #MICCA2017 Concert and Choral Festival!
MICCA stands for The Massachusetts Instrumental and Choral Conductors Association (MICCA) and and schools (mostly middle and high and very few elementary schools) from around the region participate in this annual festival.
As the band coordinator, I have been watching them work very hard, committing to extra rehearsals (pretty early in the morning), sectionals and daily practices at home since January of this year. And they were elated to hear from one of the Adjudicators, Mr. Al Dentino that they worked really well as a band and worked together in harmony.
All this appreciation would not have been possible without the hard work and efforts of the wonderful Mr.Christopher Baird, the Band Director (who is also the V’s tuba teacher) and Mr. Cesar Garde, the Percussion Director. Thank you so much.
They played 3 pieces – Success March, Echoes of the Civil War and Imperium.
Presenting the Blanchard Memorial Elementary Band at #MICCA2017
Vidyuth auditioned for the MMEA Eastern District Junior Music Festival and got selected to play in the Junior Concert Band, comprising of kids mostly in 7th and 8th grades. After just one-and-a-half days of rehearsal on March 3 and March 4, they put up a wonderful show on March 4 at 1.00 PM. Vidyuth had so much fun practicing his pieces at home, at the rehearsals and at the concert.
Thank you Mr.Baird for working with Vidyuth on his piece and for encouraging his progress. It means a lot to him.
And thanks to the wonderful music program and music educators in Acton-Boxborough school district.
Here are some photos and videos from the concert.
Videos from the MMEA Eastern District Jr.Concert Band 2017
Without music, life would be a mistake ~ Friedrich Nietzsche
Music education opens doors that help children pass from school into the world around them a world of work, culture, intellectual activity, and human involvement. The future of our nation depends on providing our children with a complete education that includes music ~ Gerald Ford
I don’t think I would have become President if it were not for my school music program. ~ President Bill Clinton
I always loved music; whoso has skill in this art is of good temperament, fitted for all things. We must teach music in schools; a schoolmaster ought to have skill in music, or I would not regard him. ~ Martin Luther
I encounter several foggy, bends in the roads I travel, everything seems so unclear, uncertain, obscure, confusing, overwhelming………..I can’t see anything past or beyond it.
But that’s the thing with a bend in the road and foggy views, right when everything seems hopeless and futile, the fog clears……lo, behold, I see the path, the wonderful view before me. All I had do was to turn the corner and persevere.
The prizes of life are at the end of each journey, not near the beginning; and it is not given to me to know how many steps are necessary in order to reach my goal. Failure I may still encounter at the thousandth step, yet success hides behind the next bend in the road. Never will I know how close it lies unless I turn the corner ~ Og Mandino
When you live with chronic pain, you learn to fake through it….you put on a smile or take on the Resting Pain Face. Very few know the actual pain you are in as they do not see you beyond your mask. Even during painful flares, the mask doesn’t come off cos there is always the reality of being judged or even shamed.
But then suddenly out of the blue, you get a message/an email/a phone call from someone who thought of you as they read about something/practiced a technique that worked for chronic pain. What makes this message special is that there is NO EXPECTATION or JUDGEMENT behind their suggestion, only their wish that there is a slight possibility that you might get better. And if you are skeptical/scared to try it, they don’t feel bad. They were merely passing on this information and understand that every person is different and that the technique/treatment might not work for you, but that they just wanted to let you know.
In a world of expectations and judgements, when one is made to feel guilty or even ashamed for one’s condition, these people are rare and I am glad to have the privilege of being your friend.
Thank you my friend(s) for your kindness and most importantly, your MINDFULNESS as that is what keeps me energized and helps me move on from the hurtful comments and judgements I receive from so many around me. Your words/actions might not have seemed big to you but to me, it made ALL the difference – it gave me more HOPE
I am tired and angry of the continuous curveballs that my health or the lack of it throws at me every single day. No matter what I do to manage it, something new creeps up and throws me off the loop again.
I am tired and angry of
the lack of sleep
going to bed with pain and waking up with more pain
the relentless fatigue
the brain fog/forgetfulness
the tight muscles
the havoc the meds have caused in me
the damage they continue to cause in me with new side effects/conditions
giving up everything I love cos I am unable to pursue/do them
all the limitations
explaining my symptoms to doctors to only have them look at me like I am a fool
listening to people telling me that I don’t look sick; The pain and the symptoms I have are due to age; At least you don’t have cancer or some other terminal condition
taking it one step at a time when all I want to do is run/sprint
putting on a brave/smiling face and fighting
NOT LETTING MYSELF FEEL TIRED & ANGRY
So tonight, I am going to let myself feel tired and angry that I have to deal with yet another health issue in addition to FM. Tonight, I am going to let myself feel hopeless, weak and be in denial. Tonight, I am just going to say “F*** you” to everything and just be.
And tomorrow, like how the sun always rises in the east, I will pick myself up again and carry on like today never happened…….cos that’s the only way I know.
When I’m stuck with a day that’s grey and lonely
I just stick up my chin and grin and say oh
The sun will come out tomorrow
So you got to hang on ’til tomorrow, come what may!
Tomorrow, tomorrow, I love you tomorrow
You’re always a day away
Tomorrow, tomorrow I love ya tomorrow
You’re always a day away …
September is Pain Awareness Month in the U.S. and I thought I would post some interesting facts you might not know about chronic pain in our country.
A Nation in Pain ~ The Facts
More than 100 million American adults struggle with chronic pain. This is more than those with diabetes, heart disease and cancer combined.
The most common causes of chronic pain are back and neck pain, arthritis, recurrent headaches, neurogenic (visible or explained) and psychogenic (not visible or explained) pain and cancer pain. (*see note below)
Chronic pain is the number one cause of disability in the U.S.
More than $600 billion dollars annually – the financial burden of chronic pain on our society.
People with chronic pain are twice as more likely to commit suicide, which equates to about 20,000 chronic pain sufferers taking their own lives every year. Surprisingly, they don’t do this because of…
This blog post by Emily Suess is great, I had to share. I think Resting Pain Face is real and I know I suffer from it, lol!
Like many with fibromyalgia, I have been trying to use meditation to encourage a state of calm in my life. And I should be honest with you, after a full summer of trying…I have not made it a habit yet. I did meditate every day for two weeks, but then I found reasons why I didn’t want to or couldn’t and now I am back to doing it only a few times a week. I am going to try doing it in the afternoon next, because the mornings are my productive time of day and there are so many other things that I would rather being doing.
I also found that chanting meditation works best for me. Guided meditation is to distracting, silence…
Invisible illnesses can indeed be more dangerous than visible ones. This recent article posted on the Huff Post, articulates how an increased risk of suicide, judgement and prejudice from others and finally, a lack of research funding, puts those of us with invisible illnesses in danger.
Amma, why don’t you come to all my baseball games?, Amma, why do you sometimes stay back in the room when we are on vacation? Amma, why did you sit out the hike after our kayaking trip?…………..these are some of the many varied but similar themed questions my boys ask me. My answer is always – maybe next time dear cos right now I am hurting/am in pain. My boys Vid and Vish are 12.5 and 10 and I recently realized, ironically while writing my last post on explaining FM symptoms, that it has been 10 years since I got my official FM diagnosis (of course the symptoms started much earlier)…….Which means my boys have always seen me in chronic pain and never knew me in my healthier days 😦
For the most part I have made my peace with FM pain, as in I know that the pain is a constant in my life and that I have to work around it but I really really HATE the feeling hat goes through my mind when I feel that I have failed them somehow as a parent. As parents, we always want to be there for our kids, for their every step, every milestone, every PTM meeting, every game, their highs and lows and most importantly, we want them to be kids for as long as they possibly can. What I absolutely HATE about FM is that my kids have had to grow up faster due to my ever present pain.
Yes, I can hear you my friends, that I am doing the best I can and that’s all I should do but it still kills me.
Now that they are older, they worry that I am in pain ALL the time, sometimes they feel hurt when their mom is unable to actively participate in certain things or when she loses her cool due to the pain and then feels miserable afterwards. But their questions have also changed – Vid and Vish wanted to know the duration of a flare-up and when I told them it can be multiple days or sometimes weeks, they felt so bad that they gave me a tight hug with tears in their eyes. They also needed more information so I showed them lots of photos online of how the pain feels, where the pain is and how it travels. To say that they were shocked and devastated would be an understatement.
This week, particularly has been really bad with a severe flare-up and I was talking to G about sweeping the living room as we had really dragged in a lot of dirt. G told me to leave it and that he will do it over the weekend. What I didn’t know at that time was Vid was listening in on that conversation. After lunch, I told the boys that I wanted to rest for a bit and when I came down, Vid had just finished sweeping the living room. He said in his matter-of-fact way that he heard me talking to G and that it was just something to wanted to do to ease the load off me. Similarly, Vish helped unload the dishes from the dishwasher and put them away. He has taken up the dishwasher unloading as his job. Can you imagine how I felt that evening?
There are lots of us who are taking it one day at a time with FM pain and we do, if I may say so, do a good job of taking care of our children, making sure that they have a semblance of a normal life. But when we get hit by a long and painful flare-up we have but no choice to put ourselves before them. And it is during those trying times, one has the opportunity to see the resilient, responsible, resourceful and the empathetic nature of their children.
Granted, there are times when I feel so overwhelmed that I feel like I messed it all up but I guess, all of us, whether we are ill or not feel that way. And I just have to let that feeling pass, like how I always wait for a flareup to end.
All I know is I will love my boys even when they mutter “MOM(while rolling their eyes at the same time),” try as much as I possibly can to do everything I can as their parent, be open with them about my health and answer their questions in the best possible way and just BE THERE for them always (even if they don’t want me to), just in case they need me for something……as I have learnt that
There is no such thing as a perfect parent. So just be a real one ~ Sue Atkins
Christmas lights in July 🙂 I can hear ya thinking…..what is she talkin about? It’s not even halloween yet and she is already thinking of Christmas….well I am not thinking of Christmas but the aches and pains that make me feel like someone has turned on the twinkly lights in my body.
And for the most part, I manage to go about my day in a somewhat normal way (as normal as it is for me) despite high levels of pain and fibro fog……. if you have just met me, you would never know that I am in pain, I do such a good job of faking how I feel, that I sometimes feel like I walk around with a mask. But when you add in the fatigue, it is a completely different and debilitating story and it is difficult to explain (even to myself) how I can feel tired ALL the time, even if I was in bed all day. At least with the christmas lights, you can imagine pain traveling all over your body but how do you explain the constant fatigue especially after a day of complete and total rest. And this is where the Carbon Bathtub analogy comes in…..What in the world is Carbon Bathtub you ask?
This spring (2016), I took an elective class called Climate Change, Global Governance and Justice at Heller where the concept of a “Carbon Bathtub” was introduced by Prof. Miheala Papa to explain the constant increase in CO2 emissions. The concept is used to illustrate that we are putting in more CO2 into the atmosphere faster than it can drain out of planet earth.
So applying the carbon ‘bathtub’ analogy to FM:
FAUCET = Sources of more pain and fatigue such as weather, stress, flare-up…..anything
DRAIN = My pain management strategies without the aid of any FM meds – walking, music, strengthening exercise, family time, Rocky time, and other new things
And here is my Fatigue ‘Bathtub’ theory: The speed at which my body accumulates pain and fatigue (as a faucet) is WAAAAY faster than it is able to drain the pain and fatigue with the aid of the strategies I use……..in short, my body is a better faucet than it is a drain.
You may wonder what I achieve by developing analogies…….believe me after 10 years or so of explaining (or trying to at least), it definitely helps to provide a visual and yet another approach of explaining this annoying, literally pain-in-everywhere condition/disease/illness to yourself and others…..cos
One good analogy is worth a three hour discussion ~ Dudley Field Malone
I needed this today…..
“Let whatever you do today be enough. Let go of the judgement you have about what you should be or could be doing, and today, allow yourself to simply be. Comparing yourself and your journey may be habitual, but it gets you nowhere. It makes you feel worse and it keeps you stuck.
“Let whatever you do today be enough. Let go of the judgement you have about what you should be or could be doing, and today, allow yourself to simply be.
Comparing yourself and your journey may be habitual, but it gets you nowhere. It makes you feel worse and it keeps you stuck. So stop fixating on where everyone else is, and start giving yourself permission to be exactly where you are.
Quiet the voice telling you to do more and be more, and trust that in this moment, who you are, where you are at, and what you are doing, is enough. You will get to where you need to be in your own time. Until then, breathe.
Breathe and be patient with yourself and your process. You are doing the best you can to cope and survive amid your struggles, and that’s all you can ask of yourself…
Congratulations to the Blanchard Memorial Elementary Band on earning a Gold Medal award today at #MICCA2016. The band has 4th, 5th and 6th graders and they competed against bands from middle school’s and junior high’s from around the region.
They have been working very hard since December 2015 and this was a great experience for them, in terms of not only participating in a well-known concert festival conducted by The Massachusetts Instrumental and Choral Conductors Association (MICCA) but also the experience of going up in front of professional conductors (who serve as adjudicators) and finally learning to work together in harmony. This was a key feedback and appreciation from one of the judges in the judges clinic after the performance.
They played 3 pieces – The Great Escape, A Song for Friends and The Dark Adventure. While The Great Escape and The Dark Adventure are dramatic pieces, Song for Friends is a melodious piece and it was for this piece the judge applauded them for working well together.
All this appreciation would not have been possible without the hard work and efforts of the wonderful Mr.Chris Baird, the Band Director (who is also the V’s trombone teacher) and Mr. Cesar Garde, the Percussion Director. Thank you so much.
Presenting the Blanchard Memorial Elementary Band at MICCA 2016
The many symptoms of fibromyalgia are real and we are more likely faking our wellness than our illness, to put you at ease. We are not seeking sympathy, just understanding. When I talk about support, I mean, don’t take it personally when I have to cancel plans, or can’t travel far to visit you. Don’t criticize or compare, I am doing the best I can. But most importantly, don’t buy in to the stigma. If you care about someone with fibromyalgia, educate yourself, it is the single most important thing you can do for them.
The social stigma of fibromyalgia is a hardship that all sufferers have to endure. It can come from doctors, coworkers, well-meaning friends and family. These people base their understanding on outdated medical information, stereotypes and an inability to see our pain. We are told we are lazy, over sensitive, weak, fakers, complainers, attention seekers and emotional. We are told that we should try harder, exercise more and improve our diets; that all of our symptoms are rooted in something we are doing wrong.
To say that fibromyalgia is not real, is completely outdated and ignorant. Historically a woman’s disease, it was originally labeled as an emotional disorder. You can still find this stigma hiding between the lines, implied all over the internet. It is 2016, this thought process is so insulting and demeaning that I want to get on a soap-box, but I won’t.
A great post from Periwinkle Pursuits on what a FM flare is.
Last week, I mentioned that I was flaring and I thought it might be helpful to explain what a flare is, for the readers who don’t know. A fibromyalgia flare is described as an increase in pain, fatigue and other symptoms, brought on by stress, illness or some other trigger.
Pain scales are designed to help patient and doctor get on the same page and can also be useful when trying to explain things to your family and friends. This is the scale given to me by my Rheumatologist. It is important to note that each fibromyalgia patient presents differently. My normal and flare pain levels may not be the same as someone else’s.
On a normal, non-flaring day, I am usually somewhere around a 3. Certain parts of my body hurt, but is not enough pain to stop me from doing things, as long as I have some time in the…
What better way to celebrate being FM meds free, side-effect free, somewhat withdrawal free……….by getting ink’d of course 🙂
Those who know me know my struggle with chronic FM pain and also how the cocktail of meds caused so many side effects that I was mostly numb….devoid of feelings. It was exactly a year ago, in Feb 2015, by sheer luck, that I went off those meds for 3 days when I was visiting my aunt. The visible absence of side effects and boy, that sure is a loooooong list, motivated me to talk to my doctor, who of course refused to listen to anything I had to say and tried to shrug it off. So with the help of Guru and Rekha, I decided to quit Cymbalta, cold-turkey. While it was not the best way when compared to tapering, I just could not take the side effects anymore.
Then…….the withdrawal begun (Read: Withdrawal 101). I can’t even begin to recount the symptoms, it was really extreme and visible. The pain was intense and the symptoms were all over the place – from dry mouth to sudden sweats, shaking to dizziness, mood swings to disorientation (that was actually the worst). I remember Guru saying that “it’s like someone has switched off the light within you…….you are fine one second and then you come crashing down and are totally off, unfocused, disoriented…name it, it is there“. What helped me though was talking to Guru and Rekha about what/how I am feeling, cuddling with my boys/ lying down with them when they go to bed, writing, exercising, yoga, sudarshan kriya, meditation and just existing.
Being unable to feel impacts you in so many ways, I can’t even begin to explain……..i still have moments when I try to think about something significant in my life and I just come up blank (be it names, what we did, where we went). I think that was the key…..the starting point. The pain is still there, intense most times but I know I am in pain and I can FEEL my emotions. I do not have any involuntary seizure like movements/ spasms or brain zaps, no nightmares/waking up screaming, no night sweats or hallucinations. However I still experience some kind of disorientation/slight memory impairment and have a lot of difficulty falling asleep (but that might be due to pain). I definitely could not have gotten the willpower or the motivation to go back to school again if I had not quit Cymbalta.
But now I am back in school again and just taking things as they come….there is no point stressing out over the unknown, when you don’t even know what is in store for the next moment. That doesn’t mean I don’t plan…..of course I do plan ahead to deal with the symptoms I have. I set reminders for self/draft up to-do lists that I can check off.
Every time I see a commercial on TV for a psychiatric drug or any drug for that matter, I feel so angry and sad even, when they list the side effects of a particular medicine. Guru and I have become very cautious with what meds we and the kids take, if we do have to take any and anytime someone, even a doctor, tells me about ‘a new medicine on the market,’ I just run so fast……All I can do and am doing is to do my bit in spreading the word.
Last time I got ink’d was in 2013 and I was just beginning to accept the pain and how it changed me as a person………I could not have gone through withdrawal and still be writing about this if not for the strength and support of my lovely kids, Vidu and Vish, my wonderful husband Guru, my amazing friend Rekha, my patient parents, bro and SIL – Kala and Raja (KR) and my bro and SIL (ramrats)……2 years forward, in Feb 2015, am rising out of pain, working on healing myself more and focusing on getting there eventually, no matter how long it takes.
O Captain! My Captain! our fearful trip is done;
The ship has weather’d every rack, the prize we sought is won;
The port is near, the bells I hear, the people all exulting,
While follow eyes the steady keel, the vessel grim and daring:
Want to know more about ill-effects of Cymbalta, withdrawal and FM in general? These links/groups will help
Weekends are always crazy and busy……esp. when we all end up sleeping in after a hectic week and a late and fun Friday night, not to mention my pain that keeps me awake. Today was no different, we woke up and it was a typical scene – G & I trying to hustle breakfast and cook lunch at the same time, while the V’s are going at 100 words a sec with all they need to do before the weekend is done – their assignments, 3D-model, materials to be scrounged for the said model, research to be done. And of course, there is the weekly grocery run.
Vidyuth has a “Stand Up” project fair on Feb 9, an interdisciplinary project in which students create a social awareness campaign for a cause they care about. He cause was “Stand against Animal Cruelty” and he chose to do stand up against cow slaughter for leather and other inhumane practices. He logged in and was telling me all these facts about top exporters/importers for key products made from leather. Then he was talking about the practices in dairy farming, looking at photos………commenting on how we (i.e. humans) take advantage of animals and then torture them etc.
Meanwhile, I was trying to multitask, processing all the things I had to finish over the weekend, planning for meals, assignments, etc. I lost patience at the facts that were thrown at me in random and snapped at Vidyuth to take notes and focus on the task at hand. I also said other things that were borderline rude, which I realized immediately after catching his hurt expression. I apologized to him and he said that he has never worked on anything like this, and that he was looking up to me for guidance. It just hit me hard that not only was I expecting him to do something that he was unfamiliar with but I had also issued instructions instead of SITTING DOWN with him and GUIDING and walking him through the steps – showing him the ropes. In short, I was being a jerk to him and thank god I caught myself from turning into a world-class one.
I then told him that I am going to be more understanding of what he needs (not what I think he needs) and that he can call me out anytime he catches me doing this and we identified a word that he can use so that I can remember this day and stop myself.
Vidyuth is an adolescent and is going through so many emotional changes that it sometimes feels like being on a rollercoaster. Yes, this is the first time I am experiencing this as a parent and believe me when I say that the sheer physical exhaustion with a newborn, toddler is a welcome and blissful stage when compared to the emotional and physical exhaustion with an adolescent. But I have gone through my own adolescence and so know how confusing it can be while this the FIRST time my child is going through this change and I can sense his confusion.
So this is my commitment to him: I am going to BE THERE, just there, for times when he needs a support or a boost or when he needs someone to lean on or listen to and for times when he doesn’t need me at all. I am going to be honest with him, guide him, not issue instructions. I only have 6 years before he leaves home and I OWE it to him to provide him with a home that is a haven, someplace he knows he can come to when things get tough, when he needs to chill, where he can be himself. I am not saying I won’t make mistakes, I definitely will but I also have today to remind me – the day I almost became a world-class jerk.
Here’s to yet another arduous yet rewarding parenting stage!
Hanging by the rooftop, in the bright sun, they seem like swords or magic wands to some, teardrop gemstones to another, a diamond shining in the sky………..but to me, they are just patiently waiting to melt and flow as water, reminding us that change is slow and might seem difficult but it always takes us forward.
What is reality? An icicle forming in fire ~ Dogen
I would like to think that I have a continuous love-affair with songs…so much so that I actually walk around with an original soundtrack in my mind 🙂 It might have been the music that got you hooked on to it in the first place but as time goes on…..some lyrics, even if they are in a language that you only partially understand, touch and stir the deepest recesses of your soul…..it makes you wanna fly, dance with abandon, sing with joy, be in love……..just BE!
As we prepare to enter another new year, another phase in our lives, let’s take some time to look back at the year gone by…..let’s thank for all the good memories, realize that the bad ones are stepping stones to help us emerge as a stronger and better individual.
Let’s choose love instead of hate…..and be at peace with ourselves and our surroundings.
Raindrops on leaves and branches transformed into shimmering crystals, crystals that remind you of twinkling and glittering christmas lights esp. when the sun hits it. It brightens you up, renews you from inside even if only for a fleeting moment. ‘Cos raindrops are just that, fleeting just like our moments and hence so much dear.
What does identity mean to you and how is it defined? Is it defined by your gender, age, sexual preference, educational and professional qualifications/roles, your personal beliefs or causes you might advocate for or the many hats you wear during the course of a day? Is it a combination of all of the above – a multidimensional one or does it not comprise of any of the above? It might even be a particular way in which you view yourself and the way in which you would like the society to view yourself.
For instance, the graphic above is all the various facets of my identity – a mix / a combination of all of these and if you notice closely, the language I speak, my beliefs and the issues I am passionate about and the ones I got through my parents such as my gender, my language, my nationality, and lest I forget – religion and class makes up this hodgepodge.
Now I know what many of you are thinking: where you are going with this girl? Is it not enough that you have signed up for a grad school, now why do you have to go and confuse yourself with a quest for your identity? As if your life is not complicated enough 🙂 Well, let me give you a little background and maybe then it will be clear.
As many of you might know, I am back in school @ The Heller School for Social Policy and Management, Brandeis University, pursuing a MA in Sustainable International Development (SID). Now Heller is a pretty diverse school and when I say diverse, it really is. For instance, the class of 2017 alone has students from more than 37 countries. So as part of orientation, we went through an Anti-Oppression Workshop and talked about the “Intersectionality of Identity.” Short of going into a lecture on this topic, basically what we discussed was that our identities are not unidimensional but is actually very complicated and sometimes even vague. During the discussion, a peer from India raised the following question:
We are all referring to identity as a picture of how we view ourselves and most of them seem like choices one makes but what if my identity is based on the social (and sometimes) economic class I was born. Or how if I am undergoing hardship just cos of my fixed identity – say my nationality? I had no say in this identity but now I am stuck with it? How about if I do not want this identity? How do I get out? Or what if I do not want ANY identity?
Can you imagine the silence in the room then? I mean, we all realize at some level the difficulties that one undergoes based on nationality, religion or class. But how many of us ever thought about not wanting to be identified based on our nationality or class or religion? Yes, there are definitely a handful when compared to our fathers and forefathers but it is still not a lot when you look at it in a social context. For instance, yes I have faced difficulties due to my gender and the many gender-specific roles that come with it. But there is no way to not want this identity. For instance, I cannot NOT want to be a woman. Now imagine the same when you are identified with a certain class or belief system.
It was clearly apparent that our views were being challenged or questioned even and I think all of us are at a stage where our focus should not only be on self-identities but should be on understanding or at least making a sincere effort to at least consider (not understand) the complex identities that are not our own, that belong to “others,”who might seem alien to us. The “other”can be someone of a different gender, sexual orientation, religion/class/ethnicity, even skin color and anything else that is not the dominant religion/gender etc. etc. Once we are able to make sense of this dichotomy, will we then be truly diverse and can make an attempt to answer the larger question:
How you choose to show up in the world despite all these self-impositions (or oppressions) and how you choose to view the “other” ?
Well I do hope I get a plausible understanding of this question in these 2 years here at Heller. But in the meantime, let me know if you have any thoughts or theories that might help answer these burning questions.
I leave you with this quote from Simone de Beauvoir, a writer and philosopher and her thoughts on the “other”gender – how the society views women as the “other”of man. That women are viewed as the “other”itself is incomprehensible. Imagine how it will be when you add the layers of race, religion, class and ethnicity.
Thus humanity is male and man defines woman not in herself but as relative to him; she is not regarded as an autonomous being… She is defined and differentiated with reference to man and not he with reference to her; she is the incidental, the inessential as opposed to the essential. He is the Subject, he is the Absolute – she is the Other.’ – Simone de Beauvoir, The Second Sex.
They can keep their heaven. When I die, I’d sooner go to middle Earth ~ George R R Martin.
True that! South Island is made up of truly mesmerizing sights, sights that one would have read in their books filled with magical wardrobes and mirrors. Vast plains – in various shades of green and sometimes brown, flanked by snow-capped mountains, not to mention sheep sprinkled throughout like white arisi mittai (vintage candy that we all enjoyed as kids) lakes that are icy blue and rainbows guiding your way……..you would think you have stumbled into a magical, mystical land. That’s South Island or Middle-Earth for you.
Our initial plan was to do a 10 day, all-driving road trip from Auckland, covering Hokitika, Punakaiki, Invercargill and Dunedin. But we dropped it and chose to fly in and out of Auckland as (1) we wanted to spend more time at Auckland with Rathi (or Rats), Ram and Mo-boy 🙂 and (2) winter had already set in NZ so we had less daylight, not to mention torrential downpours and a lot more distance to cover. Our 6-day South Island road trip(May 4, 2015 – May 9, 2015), mostly along the West Coast looked something like this: Auckland > Christchurch >Greymouth via Arthur’s Pass National Park > Franz Josepf & Fox Glaciers, Lake Matheson > Haast > Haast Pass via Mount Aspiring National Park > Wanaka >Te Anau > Milford Sound > Queenstown > Auckland – We covered close to 1500 kms in 6 days.
P.S. Eating out in New Zealand is pretty expensive so we had packed basic necessities like bread, cereal cheese, jam etc. and threw together quick and easy meals. After we were done for the day, we stopped for milk, topped up the essentials, and also picked up some munchies. We typically packed breakfast (toast with jam or cheese) and depending on the itinerary for the day, packed either lunch or cooked dinner or had lunch or dinner outside. As it was mostly wet and cold outside, we made sure we stopped for some hot chocolate and pie/muffin etc. as a treat for the boys (and for us too).
Christchurch to Greymouth
Attractions: Arthur’s Pass, Pancake Rocks, Paparoa National Park at Punakaiki
We flew into Christchurch from Auckland and before I move forward with the trip a/c, I should say that I was delighted by the Air New Zealand safety video even though I have never watched LOTR/ The Hobbit trilogy
The minute you get out of Christchurch, the awesomeness (yup, Kung Fu Panda was on when I wrote this 🙂 ) begins at every turn and stop and you can’t but wonder if you are in an alternate reality where the air is crisp, the surroundings pristine and almost unreal. Our drive to Greymouth via Arthur’s Pass National Park was just something out of a postcard.
One good thing and I guess a bad thing too is the beauty of this country moves you so much that you literally don’t have any words. So if I seem to be repeating myself with words like awestruck, awed, bewitched….please bear with me ‘cos that’s exactly how I felt. Even now – almost 2 months since, whenever I tried to write about this trip, all I got were vivid images and very few words. So I might end up doing just that, share my experiences through my lens rather than my words.
It takes around 40 minutes or so to reach Punakaiki from Greymouth and Pancake Rocks is right at the edge of the West Coast along the Great Coast Road. You gotta give it to the Kiwi’s for their commitment to conserve and preserve existing natural resources. Short of going into a geology lesson on limestone formations, the effect of seawater along with lime-rich fragments of dead sea creatures, mud and clay led to these rock formations that resemble stacked pancakes, ergo Pancake Rocks. It is a easy 20-30 minute walk and we were lucky enough to watch the sun go down.
We stayed at the Top 10 Holiday Park in Greymouth and the kids got a kick out of seeing a small home for their hotel. Even though it was just 6.30 PM, it got really dark and a quick scout of the town didn’t turn up with enticing food choices for vegetarians so we decided to eat in. We also saw on the news that there was a mild earthquake in Wanaka (our destination for the 3rd day) and the Haast Pass was closed due to heavy rains. So we went to bed hoping that we don’t encounter any such difficulties.
Day 2 – Greymouth to Haast
Attractions: Lake Mapourika, Lake Ianthe, Franz Josef Glacier, Fox Glacier. Stopover at Whataroa Town for Coffee, Lake Matheson
It started out as a clear enough day and we were able to take in Lake Mapourika and the icy blue Lake Ianthe with our mouths wide open 🙂 We started having intermittent rains on our way to Franz Josef Glacier and even when we pulled into the parking lot. We suited up and began the hike to Peter’s Pool and by some miracle the rains stopped and we were treated to one of the most spectacular views in the world (Also see Awestruck @ Peter’s Pool).
I have only read about glaciers and this is the first time I am seeing one close up. The hike is through a nature trail and opens up into a rocky path over the river bed. You really do feel like a teeny-tiny ant when you come into the view of the glacier. There were warning signs of glacial landscape changes, leading to sudden flow of water and information boards on the fast(er) retreat of the glacier over the year.
It was like the sky was waiting for us to finish our walk cos the moment we reached our van, it started pouring. We had our packed lunch in the van and set out to Fox Glacier. As it was raining quite heavily and was also overcast, we did the short walk to the glacier but had to be content with the not-so-clear views. That said, the kids and I had a lot of fun walking in the rain 🙂 We were freezing by the time we reach Whataroa and stayed in the cafe until our feet were warm and toasty and our stomachs full with warm scone and delish hot chocolate.
The overcast sky played spoilsport again when we reached Lake Matheson as well and the friendly lady in the tourist center warned us of a storm so we decided to drive to Haast as soon as possible. The rain started picking up momentum and by the time we reached Haast, it was in full form. And boy, were we glad we started towards Haast when we did as the shops close down between 5.30 – 6.00 pm in winter. After a quick but hot and satisfying meal, we retired to the sound of rain and wind whisting through the trees.
Day 3 – Haast to Wanaka via Haast Pass
Attractions: Haast Pass, Fantail Falls, Devil’s Flat, Mount Aspiring National Park, Makarora, Lake Hawea, Puzzling World, Wanaka
I woke up to the same sound I went to bed listening to. And since it was daytime, I looked out and what do I see – crazy rains, swaying trees, crazier wind whooshing through the trees. What a sight it was and we ended up driving via Haast Pass in torrential rains, nothing like I have ever seen before.
We could not go on the walk to Roaring Billy Falls but could see Fantails Falls from the road. The rains eased when we reached Devil’s Flat and the scenery changed in a blink of an eye. We basked in the scenic glory of Mount Aspiring National Park, chasing rainbows along the way, watching Lake Hawea with our mouths open and finally reached the outskirts of Wanaka, where we came upon weirdly stacked buildings with colorful roofs and the boys decided that they HAD to see Puzzling World.
If optical illusions interest you, if mazes thrill you, then this place is a must see. The kids had a lot of fun esp. in the maze and we were all happy when we drove towards Wanaka.
Let me tell you, Downtown Wanaka is straight out of an urban planner’s dream, esp. one who loves ped-bike friendly and walkable cities/towns. We had a hearty lunch that comprised of falafel wraps from this amazing greek shop and finger-lickin custom-made veggie burgers at BoaBoa Food Company. I was itching to explore this wonderful place on my own but had to check in. After lunch, we checked into Aspiring Motel (after Mount Aspiring) and I immediately grabbed my camera and walked around the town to my heart’s content. The people were very friendly and answered my questions patiently. I was content browsing the stores, walking by the active storefronts, just existing. If I had to pick any town/city in this world to move to, it would be Wanaka. I was sad that we had to leave the very next day to Te Anau.
Day 4 – Wanaka to Te Anau via Queenstown
Attractions: Blue Pools, Makarora, Wilson Bay, Scenic Drive on Glenorchy Road
We backtracked to Makarora to do the Blue Pools Walk and by God, it was a sunny day and day filled with rainbows and scenic drives. Boy, were we in for a surprise when we went on the walk. The rains from the previous day had turned the Blue Pools into…..emerald green. What a sight it was.
On our way to Glenorchy, we stopped at Wilson Bay for lunch and drove for about an hour on Glenorchy Road before deciding to turn around and head towards Te Anau via Queenstown. We stopped in Queenstown to pick up essentials and reached Te Anau around 6.30 PM. It was by far one of the coldest nights in our trip. We stayed in a Bach aka a vacation home. We had to retire early as we had a long early morning drive towards Milford Sound.
Day 5 – Te Anau to Fiordland National Park, Piopiotahi (Milford Sound) Marine Reserve and Thereabouts to Queenstown
Attractions: Fiordland National Park, Piopiotahi (Milford Sound), Mirror Lake
One of those days where my words failed me. I thoroughly enjoyed this day and was simply awestruck esp. when we entered the mouth of the fiord to Tasman Sea. Tall mountain faces lined with moss and multiple waterfalls cascading along its sides, Milford Sound is truly breath-taking place. When we started towards Milford, the day was foggy and cleared enough for the cruise but when we got off, it got muggy again and started raining, forcing cruise operators to cancel their tours. So I guess we really were lucky.
Rains again played spoilsport when we reached Mirror Lake. The lake was disturbed, obviously due to continuous rainfall. Apparently, the reflection of Earl Mountains are breathtaking. Another day, another time 🙂
We reached Queenstown around 6.30 pm and were happy to put our feet up and watch some telly, the kids that is.
Day 6 – Queenstown
I should say that we really did have Lady Luck smiling upon us. When we reached the Shotover Jet place, the operator said that he will not be able to take us out if the drizzle turns into a downpour. You should have seen our faces, it was like someone stole our candy. But after a 20 minute wait, the operator decided that he could take us and man what a thrill 🙂 The temperature is biting cold at that speed and I mean really biting so we were completely bundled up from head to toe. It was a fun ride and the moment we stepped off the boat, it started pouring again and they stopped all rides for that morning. So like I said Lady Luck was really with us.
After lunch, Rats and I chose to putter around the hotel while G and Ram took the boys on the Gondola, the Luge Rides and some ice cream. Our trip was coming to a close and by chance we happened upon the Chicos Bar and Grill in Queenstown Square. The place was amazing, the service fantastic and the food and drinks simply mind blowing. Like Wanaka, I would loved to spend an extra day or two in Queenstown.
We flew back to Auckland from Queenstown. Even though all of us felt that the trip got over way too soon to our liking, we were also looking forward to going back to Auckland to see Mo-bear 🙂
This brings us to the end of the short yet sweet trip to South Island. New Zealand is simply a traveller’s dream destination with its mountains, lakes and glaciers, green fields and hiking trails, colorful rainbows and ever friendly Kiwis. Until next time, its Haere Ra from Lakshmi, Guru, Vidyuth and Vishruth.
A flash of brown behind all that green….as they wait patiently for their turn, like many others before them and many more after them. After all, change is inevitable and will bring it with something new, something green and something fresh.
Every leaf speaks bliss to me…..fluttering from an autumn tree ~Emily Bronte
A short and gentle walk from the parking lot (not more than 25 minutes round trip), clicking away pics and WOW, you walk into a quiet and peaceful clearing and presented with what has to be one of the most spectacular views in the world,straight out of a postcard.
Peter’s pool is a small kettle lake or hole with amazing views of the surrounding ranges – Mt.Moltke and Mt.Roon and the icy blue Franz Josef Glacier. Even though the day was rainy and mostly wet, we were lucky enough when the clouds cleared and we could witness nature in all its glory.
Definitely one of the top moments in my life where I realized my insignificance in the whole scheme of things.
We cannot see our reflection in running water. It is only in still water that we can see. ~Taoist Proverb
Nothing to do with one’s psychology, Asclepias physocarpa is the botanical name for what is commonly known as the “Swan Plant”in NZ. This ‘behind-the-scenes‘ plant acts as a host to
(a) Swantail Caterpillar
(b) Monarch Caterpillar
(c) Swallowtail Caterpillar
(e) None of the above
If you got misled by the name and thought Swantail Caterpillar, you are wrong 🙂 BTW, there is no such caterpillar by that name 😛
The Swan Plant is not native to NZ and is typically grown in home gardens. It acts as a host (read: FOOD) to the Monarch Caterpillar and brings color and life to your garden. I was lucky enough to get this shot with one of the Monarch caterpillar in Rathi (my SIL’s) neighbor’s garden.
Update: Also saw a bunch of cocoons and caterpillars at Rathi’s aunt’s. According to Rathi, I should be able to sight some Monarch butterflies.
Fingers crossed I will be able to see some Monarch butterflies flitting around in these gardens before I leave NZ 🙂
No one but YOU knows how hard you work, how many hrs you put in behind the scenes, so rely on YOURSELF for approval, not the outside world. ~Unknown
You must learn to hush the demons that whisper, “No one wants to read this. This has already been said. Your voice doesn’t matter.”In the rare moments when the voices finally hush, you might hear the angels singing. ~Margaret Feinberg
Across the lonely beach we flit,
One little sandpiper and I;
And fast I gather, bit by bit,
The scattered driftwood, bleached and dry.
The wild waves reach their hands for it,
The wild wind raves, the tide runs high,
As up and down the beach we flit–
One little sandpiper and I. ~Celia Thaxter
1.50 pm: Madam, can you send me a recent picture of your child to circulate? One question that every parent dreads hearing and one that is certain to shave 10 years, if not more, from one’s lifetime.
[Imagine a time lapse of events until 1.00 PM] Dawn like any other day, sunny and bright, Vidu and Vish enjoying their summer break by sleeping in 🙂 mom-me getting ready for work after cuddling with them………traffic snarling on the roads, reports to review, research to do, emails to respond, calls to take, tea time and lunch time conversations – your usual Monday back to work.
1.05 PM: Call from Vidyuth, my older one: Amma, Vishruth went out to play around 9.30-10.00 am w/o having breakfast or lunch and paati (i.e his grandma, G’s mom) wanted me to look for him. I have been looking for him in all the houses that he usually plays for the last couple of hours but he is not anywhere. And he didn’t play with me today as well so i haven’t seen him since 10.30 am or so.
Me: Ok, I will call the parents and will call you back (He was not there in the usual places and another kid’s mom was also looking for him and that Vidyuth had already asked her).
1.10 PM: Call to Vidyuth: Vidyuth, can you please check in Person X, Y and Z’s house and let me know?
1.25 PM: Call from Vidyuth: Amma, he is not here, even the other kid’s brother is searching for him.
1.30 – 1.50 PM: Frantic call to G, to other friends, and finally asked Vidyuth to go to the security office at the apartment and I called at the same time to explain the situation. In the meantime, G has already left for home as his workplace is relatively closer. He also asks me to stay put.
The dreaded question……
1.50 PM: Madam, can you send me a recent picture of your child to circulate?1.55 PM – 2.50 PM: Fingers shaking, literally I WhatsApp the photo of Vishruth, send an email to the online group for the apartment about Vishruth and his friend and then realize that there is no way in hell I am staying put so I catch an auto and ask him to storm home while several scenarios are running in my head – Are these two boys hurt somewhere in the apartment and no one has noticed them? has someone managed to slip past the security and take these kids out of the apartment or hid them somewhere in the dark basement? Did I explain safety protocols clearly to Vishruth? Should I quit work, maybe that will make it better. And several other scenarios, a lot of them guilt-inducing….if I am a good mom/ parent….. I can’t even begin to explain 😦 I
n the meantime I called G and Rekha again and they, along with the apartment security are searching frantically for them, have not yet found them and are also looking at CCTV footage of the entry/exit points at the gate and at each block (there are 10 blocks and 387 apartments in total). Finally at 2.53 PM, the security staff spotted these boys entering a block and not exit.
2.53 PM: After playing a game of indoor lobby cricket, these 2 boys and one more, finally get bored and decide to come down.
2.55 PM: G calls me and says, “yes we found the boys.” The way I felt and am sure G and Vidyuth did too (along with all the others who searched for him) can’t be put in words. To give you a glimpse of how I felt when I saw Vishruth, I wanted to hug him tightly, throttle him in a gentle way, laugh, scream and cry at the same time. Vidyuth went through a lot too as he was the one holding the fort for his grandparents when hell was breaking loose and we are still en route to our home. This is the first time Vishruth has ever played for 5 and a half hours straight without checking in with us or even coming in for food/snacks/water. I am not sure what he thought, whether he lost track of time or if he thought he is fine as long as he is within the complex somewhere. All I know is this – I will gladly walk through any fire of hell several time over than go through this. Cos I just realized again
“Making the decision to have and raise a child – it is momentous. It is to decide forever to have your heart go walking around outside your body. ” ― Elizabeth Stone
While I am grateful that I didn’t have to go through the gut-wrenching suffering, my heart goes out to those parents when their child goes missing. My prayers are with you and I really hope that your heart comes back to you soon.
Its 9.00 PM now, my kids are playing, fighting and giggling and there is a lot of noise in the house but I would take the noise over the eerie silence any day and tonight I am going to lie down with both my boys, braving myself to handle their kicks 🙂 and hugging them tightly and talking something or the other until they finally fall asleep (or I do).
I love you both Vidu and Vish and I hope to God that you don’t shave off or add another 10 years off my (or ur dad’s) lifetime….I don’t think we are wo(man) enough to stomach it 🙂
Hmmmm……this certainly takes the cake on the “most difficult topic” I have written about. There are so many players involved and despite all my efforts, I will end up using some of my own life experiences to highlight something and that might (will) end up hurting people inadvertently. But since it is an issue that is close to my heart, I am diving into this headfirst with a disclaimer:
இந்த படைப்பில் வரும் கதாபாத்திரங்கள், பெயர்கள் யாவும் கற்பனையே, யாரையும் குறிப்பிடுவன அல்ல
All characters appearing in this work are fictitious 🙂 Any resemblance to real persons, living or dead, is purely coincidental.
Also, this post draws from my own experiences and observations of my Indian female counterparts.
Last week I was browsing through a tamil magazine and came upon the “questions to the editor”column. A reader had asked this question:
கேள்வி: ஒரு பெண்ணிற்கு எது மிக உயர்வானது – மனைவியாக இருப்பதா அல்லது தாயாக இருப்பதா ?
(Question: According to a woman – is being a wife worthy or being a mom?
ஆசிரியர் பதில்: ஒரு ஆணை நாம் எப்போதுமே முதலில் ஆணாக தான் பார்க்கிறோம். அப்படி இருக்க ஏன் ஒரு பெண்ணை மட்டும் ஒரு தாயாகவோ அல்லது மனைவியாகவோ மட்டும் பார்க்கிறோம். இந்த பார்வை மாற வேண்டும். ஒரு பெண்ணை பெண்ணாக பாருங்கள்!
(Editor’s Answer: We see a man as ONLY a man. Then why do we view women as either a mother or a wife. This has to change. View a woman as a woman and not as a role)
What an apt and a valid response!
Imagine how many men (in the context of friends) we would have met in the last 8 hours or so – how did we think of them – did we think of them as Arun, Aravind, Abby, Ani, Yogi, Hari or did we think of them as so-and-so’s husband/boyfriend/partner or so-and-so’s dad? Now flip the other side of the coin – think about the women (again friends) we met in the last 24 hours – how did we view them? Did we view them as Rekha, Deepa, Maria, Silja, Reba, Vidya or did we look at them as so-and-so’s wife or so-and-so’s mom? I know that you know that I know the answer to this question 🙂 While this might seem funny at the outset, that’s all that the Indian society is willing to see us as – as someone’s someone – it can be anything – wife, mother, DIL, daughter, sister, SIL etc etc. It’s as if we(men) do not exist outside of these roles and our success is only measured by the way she handles these roles.
From a time a girl is born, she is the குடும்ப குத்துவிளக்கு, her family’s pride is dependent upon her behavior, (diametrically opposite to the ‘boys will be boys’ claim) and she has to embody a balance of both modern and traditional behavior, i.e. she has to score good grades, in fact more than the boys while learning and performing household chores (that boys are typically exempt from). Very few households engage children of both sexes in chores (Mine was one such house). She can go to a co-educational school but should limit her conversations with boys to only studies. She can dress up in jeans and tops but also has to be comfortable in a saree. She can focus on her career but has to settle down (meaning get married) before she gets (and looks) old. Old is a relative term – some parents consider 20 to be too old. Most importantly, she is given all the freedom in choosing this “perfect life partner” from the 2-3 choices (READ: Photographs) that is deemed apt by her family. Her mistakes reflect badly on her family which will in turn impact her marriage prospects or will end her getting scolded by her in-laws.
Some typical conversations (mostly one-sided) along these lines:
Scene 1– At Home
Parents – Kanna, we are looking for a suitable match for you.
Girl: But, but, what about my dreams, my aims?
Parents, in a firmer tone – See you are already old (she was just 22), if you get married at 24, imagine when will you have kids. Plus women look old faster……….அதுஅதுநடக்கறவயசிலநடந்தாதான்நல்லது (meaning things should happen at the right age). Who is stopping you from working or studying – you get married first and then you can get study, work, have a career. We will not stop you but being a wife and starting a family is more important than a career. I got married when I was 21 and had both my kids by the time I was 24.
Scene 2 – @meetings with prospective grooms, their parents – several times over and over again and again….and again…..and again
Q: Do you know singing, why don’t you sing a song?
(Mental monologue, sometimes not): I can sing but i won’t (or) starts singing “ஊதா கலர் ரிப்பன் உனக்கு யாரு அப்பன் ” ((The person with a purple ribbon, who is ur dad and who is your mom – tell me so that I can salute them both 😀 ) – just to irritate the hell out of the boy and his folks or something similarly sarcastic 😛
Q: What are your plans after getting married? Can you cook different cuisines, my mom cooks really well? Can you make round chapattis?
My plans are (1)my plans and (2) to not get married now and (3) they definitely do not include you, about that cooking….err…..like you, I also worked very hard in architecture school and that’s why I came in the Top 3.I know how to make a circle with a compass and cooking was not a part of my curriculum in school. Why don’t you just hire a cook if all you want is to eat?
DRUMROLL, please for the grand SLAMMER
we don’t believe in taking dowry (but you will have to give diamond earrings to your daughter, and other X,Y,Z things) if this alliance goes through
Let’s call a spade a spade, but if this isn’t dowry, I am the Queen of Utopia
A boy’s mom actually asked me in front of everyone if I liked her son just 5 minutes after I met him.
I politely (i.e. as politely as I can) conveyed that it is better for my parents to discuss about the same as her son is going to tell her (and not me) if he liked me or not.
She said that I am an ARROGANT GIRL (of course if it was a guy, oh, he is so humble and respectful towards his parents)
After marriage, whether she choses to work outside the home or not, she is still expected (without any ramp up time) to run the house i.e. cook, clean, attend to her family round the clock. And if for some reason she chooses to not work, she is introduced as “My wife so and so, she is just a housewife, sitting at home, doing nothing.” I have heard a lot of my friends say this about themselves and every time I list everything that they do around the house, they shrug it off and say that it is their duty.
Now, let’s bring in the perspective of our fellow working women. In the WhatsApp group of Class of 2000, there was this woman who constantly kept putting down other women as they were not, according to her, working or doing meaningful work. She actually said and I quote this, “working outside and managing teams is very difficult, of course I don’t expect you to understand, you are just a housewife.” And of course, there is another school of thought, where working women are chided and ridiculed for going out of their house when their primary duty is taking care of their house… “Oh I don’t know how you can work, I simply cannot neglecting my home and children.” These kind of comments also touch on having a life outside of their family – including night outs, meeting friends, traveling for work etc.
Uh…..are you actually telling me that I am not worth something or can’t understand stuff cos I do chose not to work outside my house or that I am neglecting my home and kids just cos I choose to work outside of my home/ meet my friends for drinks/ travel alone for some well-earned me time/ volunteer or simply engaging in something to preserve my sanity. What’s up with this attitude? I mean if women from the same generation look down on other women’s choices about their work and life, how can we expect women from an older generation – moms, MILs, and your well-meaning neighborhood aunt to understand this? And how can we expect men to understand our perspective?
So is a man really looking for – what is his perspective?
He wants a modern yet traditional wife, someone who is well educated, can hold intelligent discussions about politics and “World Peace.” These supposedly modern men like their partner to be professionally qualified (not just any degree will do), don’t mind them working (mind being the key word, as if someone gave them the right), but is in reality looking for someone subservient, someone to take care of him (as if he is a baby), his house, his parents, his kids, whip up delicious meals, just short of fetching his paper, pipe and slippers 😦 See it’s all HIS and not THEIRs. And breathing space….what breathing space?
We had invited this person home for lunch when we were still in the US. He was working in a huge corporate in India. He actually told that he doesn’t prefer hiring women as employers have to be careful about their work timings, ensure their safety when they work late. Then these women get married, get pregnant and have to be given leave. I just ripped him apart. Why? Cos I was hired by a wonderful firm when I was…….8 months pregnant and being pregnant didn’t affect me, my work and my employer in any way. But this guy, it was like talking to a rock. The videoclip below is from a movie “Kanda Naal Mudhal.” One of the characters is trying to irritate the female lead by telling her how useless he thinks women are at the workplace. Though this scene was meant to bring about a couple of laughs, it is actually the reality in most Indian workplaces.
When we moved back to India and I started working, the kind of unnecessary comments I would hear made me cringe. For about 18 months or so, G and I worked in the same org and I used to leave home early so that I can be back home in a reasonable time (READ: before homework and dinner). Every time G used to drop off my lunch at my desk, I would hear some unnecessary comment from my manager at that time. At one time, a male co-worker and I both injured our backs at almost the same time. He gave the male co-worker time off immediately as according to him he is a primary caretaker, breadwinner of the family and needs to get rest to get back to his noble duties. Whereas, I had to finish my assignments for an event before going out on leave. If I colored/ cut my hair or dressed in western wear (i.e. skirts), this specimen who was the manager’s pet used to mention casually that “Ï am lucky as G allows it.” He even had an acronym for someone like me – DING – dual income group, that too with years of experience in the US, am just working for time pass. Only when I mentioned inappropriate and the dreaded H word, did the manager ask him to keep quiet as I obviously cannot “take a joke.” He was a typical Indian male employer with the mindset that the woman (and her pay) is only secondary to that of a man and her place is at home. He could not handle someone who was both a pre-baby Miranda and a Charlotte. Most men want a a contented mom and homemaker like Charlotte or a pre-baby Miranda if they want to move ahead in their career. God forbid if a woman tries to to be both.
I see well-educated, ambitious women with their eyes and hearts full of dreams being forced quit their jobs, to stay back home by their husbands, cos “how can the children be left in a, GASP….daycare. It is very important to have a full time parental presence.” If parental presence is the only requirement, why can’t the husband stay back? I mean, he is also a parent. The woman is then forced to quit her job and she ends up being dissatisfied and resentful. Or when these men want to move elsewhere either for his career growth or his commitments or after his retirement, they just expect the wife to pack up and move. No consideration whatsoever about how it impacts these women, their lives, the friendships they have formed over the years and most importantly, their career. It’s like they are invisible and their efforts are not even acknowledged. Then these men go into their workplace and then pretend to work towards GENDER EQUALITY in THE WORKPLACE (!!!).
Men have always seen the women in their house as a role-player, mom, sister, grandmom, as someone who was comfortable being in a subservient role but never as a person. Very few realize the difficulties the womenfolk from their families had to undergo. Even if their mom was working outside their house, they still were the primary caregiver without anyone to lean in. They still had to serve coffee to their husband who came home tired from work (when she would have just entered the house as well) and immediately start cooking dinner.
Very few women like my mum, for instance, had someone to lean in. My dad would not expect her to make coffee or anything. In fact, as he always reached home early, he would make not only coffee but also start prep for dinner. And if my mom’s schedule is very hectic, he would just finish dinner and keep food for her in the hot pack. He never expected her or asked her to be the parental presence at home when he went out foraging for food 🙂 no caveman attitude there. He took on that role, the parent who got the kids ready for school, who drops and picks them up, who attended PTMs and so on. He also never got frazzled if he had to be alone with us. He stepped back (and didn’t have any regrets) so that my mom can advance in her career. Their’s was a partnership in the truest sense. But he was the exception and not the rule.
As for me, I have always had G to lean in/ focus on my career cos he pitches at home. I even lean in on my kids. But every single time someone meets us both and come to know that I am working, they always, always ask me (and never Guru) how I manage work-life balance. Even if they ask Guru, it is how I manage my home and work or that how great a person he is that he can handle things at home when his wife is traveling or taking time off for herself 🙂 We both juggle multiple things and both of us step back/forward as the need arises. And of course there were some times where I had to step back monumentally (it was, at least for me), with major moves, even though I took with step back my eyes-wide-open with no coercions. G is aware and respects me for this decision as he was able to attend to his priorities then. We still play the step back-forward game (I call this game, cos then it makes it fun) and while it’s not without difficulties, we are able to do it cos I have him to lean in and he has me to lean in. I also know of other couples who lean in to each other and while this is not a big percentage, it is still a positive indicator of things to come.
But leaning in is not only about men and women, it is also about other fellow women. As I mentioned earlier, if women cannot understand and allow other women to lean in, how can we expect a man to do the same? Let’s look at this conversation between 2 women, several times during the course of the day or when they have an opportunity to meet.
Snippets from several conversations between 2 women (not verbatim) :
Person 1: I just wish that a woman didn’t have to always step back in her career due to family responsibilities and expectations.
Person 2: See career and all is important but everything comes secondary in front of family. Family, i.e. husband and kids are a woman’s world and should be her only focus and that is the societal norm as well
Person 1: My family is very important to me but for me my identity as a person i.e. who I am, what I do outside these roles, as my own person, including being a meaningful professional is equally important. Both these need to be in balance for me. And we forget that we are the society not some random person named society.
Person 2: You are not lacking anything in life – you have a wonderful husband, lovely kids, you own a home, your husband makes good money and you also have a job. This “being your own person” is all just for show.
Person 1: (Baffled) Okay, let’s agree to disagree.
End of Conversation.
Person 2 in this conversation was and is still a very successful career woman, who fought against inequalities and stood successfully in a predominantly male dominated field. But she still thinks that a woman’s role as a wife and mother should come first. Not that there is anything wrong in her viewpoint but she is unable to accept Person 1’s point of view and also thinks that it is wrong to think like that. Is this cos of stereotyping women into roles or traditions, whether they make sense or not.
There are very few workplaces in India that can call themselves Gender – Friendly and I am really lucky to be working in one of them while having someone to lean in. Several others are apparently working towards such initiatives as is evidenced by the articles in the newspaper about workplace initiatives and committees working towards gender equality.But as I mentioned earlier, in these people are not from an alien planet but from our homes, our gender-unfriendly/unequal homes. If they don’t believe in gender-equality in their own homes, how are they expected to bring about this change in their workplaces? Cos bringing about change involves empathy and a basic effort to understand the co-worker’s needs and struggles. Without these qualities, this initiative would then be a hogwash and a mere tick in your checklist.
It’s not enough to send out an email a year to friends and family about international women’s day and then objectify them continuously. It’s not enough to just have workplace initiatives. It’s not enough to just lament about the lack of women in mid-level and high-level roles and the female brain drain. It’s not just enough to blame the organizations cos they are run by people from our homes. Let’s start leaning in and be a change agent to bring everyone, everyone from your families to this discussion, so that we not only have gender-friendly workplaces but also gender-friendly homes and countries! A gender-friendly home makes a gender-friendly workplace 🙂
“The more women help one another, the more we help ourselves. Acting like a coalition truly does produce results. Any coalition of support must also include men, many of whom care about gender inequality as much as women do.” ― Sheryl Sandberg, Lean In: Women, Work, and the Will to Lead
Featured image from: http://www.bigwordsblog.com/wp-content/uploads/2013/12/Women-at-work.jpg
As she was walking with her other classmates towards the bus stop to get the connection to her hostel, she saw the rowdy gang, all drunk with colored powder (Holi like) in their hand. Her college was celebrating something known as “Bus Day,” which was a free pass for boys to behave as obnoxious as they can. When these boys saw this group of girls, they started walking towards the girls to throw the powder on them. He targeted her, this particular girl, just cos he hated her guts and cornered her. He then proceeded to grope her in broad daylight in front of several people, including her classmates, all under the pretext of throwing the holi powder on her and actually told her that he wanted to “teach her a lesson.” He then smirked at her with a “now, what can you do?”and walked away.
Then……around 6-7 months back, 1st year of college
She was just 16 when she moved to a new town to pursue her Bachelors. The town she went to study was a small town, very different from the metro she grew up in. Girls were expected to be “like girls,” whatever that meant. She found it all strange as she had been brought up to speak up her mind, to listen to her conscience, to stand against wrong practices (read: RAGGING) and on her own too, she was very ethical, fiercely independent and had a streak of carelessness and a kind of disregard for authority that came only because of age and seniority. She believed that respect had to be earned and was not something that one was entitled to.
Typical to any college atmosphere in the mid 1990’s, seniors visited her classrooms under the pretext of “getting-to-know-you” when all they wanted to do was rag their juniors (I got ragged so I will rag you attitude). They perceived her as unnecessarily bold, arrogant, egoistic (and a whole other choice of lovely names). She didn’t fit any image of a “typical”girl that they had. They often questioned her if she was putting on a show esp. when other girls from similar metros were not like her. They were also baffled by the way she used to talk to them, as if they were friends rather than seniors whom she had to fear and of course respect. And the ones that got over it are still good friends with her, even after 20 odd years.
There was this particular character in her college, 2 years senior to her and from a different department. He considered himself to be some kind of walking,talking (even singing) encyclopedia of how girls should behave. He was crass, obnoxious and he came to know about this girl from his fellow classmates and peers and how they came to like her friendly and casual attitude. From then on he made it his life’s mission to irritate the hell out of her by the way he looked and talked to her. He would never even worry that teaching staff were around and wouldn’t relent even after his classmate(s) intervened.
His comments and looks would make her squirm but she never gave in and put her head down. Instead she met him head-on and their argument escalated to such an extent that he could not stand it and had actually told one of his classmates with whom she was friends, that she will get her comeuppance soon.
Present Day……after the ugly groping session
She could not sleep even after taking a shower to wash the feel of his hands. She felt like kambili poochis (or worms) were all over her body. She woke up a mess, with bloodshot eyes and with no one to talk to. Against the advice of some of her classmates, who felt that she was blowing this out of proportion, she went to her Department Head and described in detail what had happened. She even broke down a couple of times. She then went about her regular routine, all the while feeling ugly and violated, when some classmates of his came and screamed at her for bringing about disciplinary action against him. According to them, it was her bold attitude and disrespectful behavior that ticked him off and forced him to do something like this. And he was also under the influence so she should just consider this as tit for tat and leave it, instead of trying to spoil his life. They simply didn’t understand what it meant to be violated as they also felt that she was “asking for it.” When she asked them how they would feel if she were to poke them around with a sharp object or if someone were to behave in a similar way with the women in their family, they became quiet.
Its not as though she was a stranger to physical violation. Anyone girl from India, who uses public transportation can attest to this fact. But then a call of help or a physical reaction such as slapping or kneeing him you-know-where would draw the attention of fellow passengers and the conductor and the perpetrator would be shamed. But in this case, it was as though he had planned it. Even though she was not in good terms with him, she did not think that he would do something like this. She did not have the support or understanding of anyone (and she didn’t tell her parents as they would worry unnecessarily) and literally everyone turned a blind eye as they all felt it was her fault. And since he had to undergo some kind of disciplinary action, every time they crossed paths (he still had a year left), he would literally burn her with his eyes. It made it very difficult for her to see him day after day around campus as most of them knew what had transpired and were waiting in suspense to see if something else, an ugly argument or confrontation would ensue. He was at fault but she was the one who felt ashamed. But at that point, she just didn’t gave a F***and figured the best medicine is to be herself, her supposedly arrogant and egoistic self.
Her Final Year
She was humming a song, walking towards the college, when she heard her name being called. It was the same guy, who was visiting the college to clear his arrears. Still wary of him, she looked at him with a question in her eyes and he said, “I am really sorry for misbehaving with you. Please forget all that happened and forgive me.”
Little did he know she had already forgiven him so that she could move on but it was difficult to forget it as all one needs is a small reminder to remember how it felt to be violated, no matter what way. It is something that one cannot erase from their minds.
Just remember, No one asks for it!
“I became what I am today at the age of twelve, on a frigid overcast day in the winter of 1975. I remember the precise moment, crouching behind a crumbling mud wall, peeking into the alley near the frozen creek. That was a long time ago, but it’s wrong what they say about the past, I’ve learned, about how you can bury it. Because the past claws its way out. Looking back now, I realize I have been peeking into that deserted alley for the last twenty-six years.” ˜ Khaled Hosseini, The Kite Runner
Your baby telling him HE HAS A CRUSH ON A GIRL 🙂 🙂 You are happy that he trusts you enough to talk about it to you (all the while freaking out – my baby is growing up, he is growing up too fast, too soon)
Staying up all night talking to Guru
Going out for an impromptu dinner with Guru that turns out to be the most wonderful date you have been to with him
Feeling the warmth of Guru as I curl up beside him
Waking up late and rushing to the kitchen only to find Guru has already gotten the kids ready to school 🙂
Realizing how blessed you are to have a roof over your head and to have a family that loves you a lot!!
………….and so much more
Here’s to joyous and joyful moments!!!
Featured image from https://psychconnection.files.wordpress.com/2014/06/happiness-is.jpg
Watched Anegan yesterday and I must say for a non-Dhanush fan, I liked the slick screenplay, songs, the constant back and forth between various time periods, be it past life memories or an over-active imagination in play. The comedy was light and to the point and the almost-climax when Dhanush mimicks Karthik, நா மெர்சலாயிட்டேன் பா 😛 . Loosely translated, Naa Mersalaayitten means “I am hooked.”Supposedly North Madras (and not Chennai ) lingo.
Wondering about the title, read on.
Whether it was intentional or not, the director highlights, almost casually, the pill-popping culture of the current generation to reduce stress, and the unethical and greedy nature of SOME healthcare providers to write prescriptions and procedures that actually cause more harm than good. In fact the movie shows that the doctor and the person she is in cahoots with, i.e. the head of the video gaming company are aware of the harmful side effects of a pill – illegal dopamine in this case which include hallucination, insomnia other severe impacts to one’s mind and finally death. The company head actually uses these hallucinations in his video games and goes as far as to incorporate the death of his employee in his video game. However the poor employees believe in their cool employer who they think looks out for them and in fact pays for all their meds so that they are always alert (!!) and out of stress. In one word, they are HOOKED (hence the title). And of course we have all seen and heard several such incidents on and off screen, where people in limelight, celebrities, athletes – established and upcoming and around us have been affected in several ways due to prescription drugs, the supposed ONE STEP solution for all your maladies. I have been on the receiving end of high(er) dosages of prescription drugs from several doctors. Its as if these meds were samples one would hand out at a farmer’s market.
I was caught off guard with all the side effects and gave them up cold turkey, i.e. UNHOOK myself from these meds abruptly one fine day. Of course I didn’t even realize that the term cold turkey applied to me. After all I was leading a very peaceful and relatively healthy life, didn’t have any addictions (if you don’t count books) that I had to do go cold turkey – I mean, I don’t smoke, I drink maybe 10 times in a year, I exercise regularly and I don’t EVER do drugs. Or as I realized on that fine day, I was taking prescription meds that were worse than recreational drugs and that both the side effects and the withdrawal effects have the power to bring one down to their knees. The more I read, understand and actually experience it, the more frustrated and angry I get at healthcare providers. And the more people I talk to, I find that they have also experienced this apathy from their docs. If someone with information at their reach is experiencing this, imagine the plight of those who blindly trust their healthcare provider? I use the term healthcare provider here as it denotes a whole industry, YUP, that is the term.
So I ask, Why are you all hell bent on being pill pushers and making us pill poppers? It’s not like they are Jalapeño Poppers (See, now you have made me crave for those addictive little suckers and I will be going to bed dreaming about them) When did you morph from someone we trust our life with to someone we have to run away from? Well, for now I don’t have any concrete answers as I am also finding my way and working on flushing out the sludge from within me. But I thought I will share this video that highlights the sad but cold truth of the way the healthcare industry works. And if this is the state in the US, imagine the severity in India, where the regulations are not stringent and corruption is rampant in all walks of life.
Think and think hard before you go on any medical regimen that prescribes harmful drugs rather than proscribing them.
To quote Morpheus, “I am trying to free your mind, Neo. But I can only show you the door. You’re the one that has to walk through it.” (and embrace the painful but at least real reality).
Update on October 18, 2015: Its exactly 8 months since I quit Cymbalta cold-turkey but I still experience some withdrawal symptoms but I think I am better off w/o the meds than I was with them. You don’t realize how numb you can become until you get off that pill and I can’t even begin to express how I felt (or didn’t feel) when I was on Cymbalta. I have my coping methods and it works well for the most part. What is truly puzzling is the way Eli-Lily and the other BIG pharma companies have been able to get away with whatever they are doing, despite the many reports out there (Also read: The Withdrawal I Experienced After Quitting Cymbalta Was Worse Than My Depression).
Never ever in these last couple of years that I been stuck at the beginning of my blogpost, unsure of how and where to begin……okay let me start with the title – I initially thought that “Sucker Punch(ed)” would be an apt title but realized that sucker punch indicates a sudden, typically a spontaneous, spur-of-the-moment move. The more I thought about what I am experiencing and the reasons behind it, “Blindsided” seemed appropriate cos I have been caught unawares with severe, not to mention detrimental results, all because I had faith – faith that medical providers try their best to do ensure that their patients do not suffer hurt or damage due to their careless attitude. A lot of med providers I know of take the time to treat you like a person and not merely as someone with a hospital ID number but sadly there are several others who are on the other side and have a GOD complex that they constantly look down at you and don’t even pretend to make the effort of listening to you.
Most of you who know me and/or read my posts know that I have been living with chronic FM and my daily efforts to ensure that I manage FM and not the other way around. I actually thought I was managing my pain really well with yoga, meditation, mindful behavior, self awareness and of course the supposedly small dosage of Cymbalta – a “Serotonin–norepinephrine reuptake inhibitor” (whew, that is a mouthful) or a SNRI pill (a step above an SSRI), that according to my doctor will break the pain cycle and (thank the heavens and the amazing pharma company) rid me of this condition. Of course, me being me, immediately googled it and found that in addition to being prescribed for FM, it was prescribed for a variety of other conditions, including severe depression. But I was not depressed and the side effects were more than a mile-long. When I pointed this out to the doctor, she said that I have already exhausted all the other options, i.e. your good old muscle relaxants with pain killers, anticonvulsants, TCAs so this is the only course of action that will help me break the cycle and that the side effects are practically nothing when compared to the benefits. And of course she was the trained professional and I was, by that time , around 8 years or so, desperate enough for a fix. Little did I know or realize that I was merely an human experiment and the FUN had just begun !!
I was prescribed the SNRI sometime in June and I was already meditating, was on a regular fitness routine, being aware, and generally at peace with myself and my surroundings. But then I started noticing symptoms that interfered with my day-to-day life. When I brought them to the attention of the doctor, she just doubled the dosage which made me see red. So I just kept at the original dosage, while exploring other alternative methods including giving myself the gift of The Art of Silence. Then came the triple WHAMMY – (1) forgetfulness/feeling disoriented/blanking out; (2) having abnormal dreams and nightmares and waking up screaming almost every night – being aware that I am in a nightmare but unable to get out of it; (3) feeling unusually restless/down/lost and agitated all of a sudden with my thoughts bordering on anger and sometimes negative/thoughts of suicide (cue your big pharma ad here). Thinking back, I guess I was lucky that I was able to recognize the mental disturbance for what it was – crappy side effects! I contacted the doctor again and all she said was to keep going on the same dosage as it must be some other thing. She just refused to listen.
Then as luck would have it, I went to Chennai for the weekend (Feb 7 & 8, 2015) but forgot to carry my meds (and couldn’t get the same in Chennai as well). So inadvertently, I went off the meds for a couple of days and into what is known as “WITHDRAWAL,” and got the scare of my life. This time however, instead of going to the doctor, I first talked it over with Guru and Rekha, my best friend as I was really worried and scared. I also needed someone around me to know that the meds, the lovely SNRI I was on with the little extra added norapenephrine inhibbitor is screwing up my mind that much nicer. And of course, the articles online just cemented my belief.
I met with the doctor on Friday, Feb 13, 2015 and pissed is the only decent way to describe the way I felt. I had printed out and marked the list of symptoms I had and other articles. I also told her that I am feeling intense pain, like a dam broke down. She didn’t even look at the article, let alone remember the dosage changes she had prescribed. She actually had the ****ing gall to say that Cymbalta doesn’t have any withdrawal symptoms, that I might be on another medicine (when I was not) or maybe I was having some other condition and that’s why I was feeling the way I did or maybe I am letting something else influence me/imagining things in my mind. She shrugged me off and tried to increase the dosage and add other meds. I was so angry not to mention hurt that she would not even listen to what I have to say and just walked out of her office and then she was like, “maybe we should try reducing the dosage and try therapy.” Guru was stunned to see me walk out pissed cos I am usually not that way. Once we got out, I told him “No more doctors, no more meds, I would much rather experience everything in full force rather than go through this shit of being dependent on a medicine and treated like a walking and talking experiment.”
SNRI’s and SSRI’s are categorized by the FDA with the strongest levels of lethality and allowed by law……cigarettes carry same warning as Cymbalta. I would never have voluntarily and knowingly taken such a risk. I don’t want to put the blame on anyone but on me as it was my fault to be on a cocktail of drugs with Cymbalta taking the cake.
I am OFF Cymbalta for 12 days now and while the pain is intense with some sudden mood changes, the nightmares and night sweats have reduced and my severe eye dryness/dry mouth has almost disappeared. As for the other symptoms, I am keeping a close eye on myself, am extremely aware of what I am feeling – physically and emotionally.
I am not ranting or whining about Cymbalta or any other prescription drug with such severe effects but wish that I had advance warning about both the side effects and withdrawal symptoms and proper suggestions to ease the symptoms. Why do doctors treat patients like this? Are they not aware of these side effects and withdrawal symptoms? Are they not allowed to tell us? Whatever the answer, I chose life (and pain), to listen to and feel everything in my mind and body- be it good or bad, to be the best person, mother, partner, friend to myself, to my kids, to Guru, to my friends and family over zombie-like behaviour, over the devil that is Cymbalta.
If we were abandoned…if abandonment is an issue for us…the way to start healing is to stop abandoning ourselves. We need to unlearn that. We do that by, in baby steps, learning to trust ourselves. We do it by paying attention to our feelings and never ignoring what we know is right for ourselves. This is a practice since we’ve forgotten or never known how to do it.
find those little abandoned children within and be with them
It’s been an active practice for a long while, but this little status update was inspired by listening to Teal Swan who articulated it so that I could see what it was I was doing and then articulate it for myself and the Facebook page.
The thing that strikes me most about this is the idea that we must be true to…
Printed with the permission of the author who retains copyright. (first posted on Beyond Meds last year)
You can’t heal what you don’t feel
Can you imagine a life without one of your five senses? Maybe, but it certainly isn’t something you would joyfully embrace. Even if having all five senses means you sometimes see, smell, hear, touch, or taste things that elicit a negative reaction, you understand the gift of having all five far eclipses those unpleasant moments.
Being human comes with the ability to experience life in many different ways, through a body, a brain, and a spirit. You may not always think so, but your emotional range is also a gift. Though you will face negative feelings on and off throughout your life, you probably would not give up the ability to feel simply because, sometimes, emotions are…
Snippets from a conversation between a bus driver and a lady:
Lady: Sir, my daughter is traveling from Chennai to Bangalore alone. Please drive carefully and make sure she gets down safe.
Driver: Seri madam.
The daughter in question is not a child or a young woman, mind you but an adult, who is independent and has traveled at all times of the day and night alone…..yes, its YOURS TRULY 🙂
Was visiting the folks this past weekend and had a relaxing time visiting my aunt, being exclusively pampered between mum and dad (kids and G were in Bangalore so I had some much needed tim off and had my folks ALL to myself 🙂 When they are busy playing grandparents, they hardly even look at me so yes, I was very glad about this short trip.
When I was doing my Bachelors in Madurai and visiting home for the holidays, my mom always used to get agitated and upset and yell at me for no reason when it was time for me to leave. Initially, I used to feel very bad and used to yell back at her but then as time passed I realized that she was yelling at me not because she was angry at me but because she was sad that I was leaving home. Once I identified the root, I talked it over to my mom and we found other ways to channelize her feelings (and we lived happily ever after :P…couldn’t resist, hehe). The 2 days I spent at my folks, I felt like I had come through a time machine. Maybe it was because I was w/o the kids and G, my mum probably saw me as a kid, a young girl or even a single woman but not as a grown woman.
Guess what! As much as the conversation between my mom and the driver (and of course the amused look he was giving me) made me want to dig myself into the ground (complete with the eye rolling and mortified expression), it was nice to be treated like a kid. It was wonderful to be taken care of, tucked into bed, patted and cuddled and even fed 🙂
I guess being a parent never stops…..and thank you amma and appa for loving me the way you do, despite all my shortcomings, my annoying behaviors and even when I was at my worst, unlovable self. Thank you for the great and wonderful memories and for the music in my life. I loved being a kid!
A few days back, I happened to watch Bangalore Days, a Malayalam movie that was released sometime last year. I really loved the movie, the characterizations and how one could relate to them, in one relationship plane or another. Of course there was something that bothered me but I couldn’t put my finger on it. So I went about my regular routine and then suddenly I had my “AHA” moment.
One of the protagonists, RJ Sarah (Parvathy) lives in the Yelahanka area in Bangalore and is a paraplegic who moves around with the assistance of a wheelchair. She uses the KIA – airport bound BMTC buses to and fro to work and home and gives motivational talks to school kids, meets friends out for coffee and is pretty much on her own. Pretty unbelievable, isn’t it? That too in Bangalore? Where you wonder, this Bangalore, these wonderful neighborhoods they show in the movie is, where someone disabled is able to move around on their own, when to cross a road, you have to hold your breath and do some moonwalks, coupled with a dash and a jump across the street, making you wish you had one of those invisible strings that just propelled you from one end of the street to another.
Yeah, yeah, I hear what you are thinking. Hey Laks, it is a movie, the person who played RJ Sarah is actually not a paraplegic and she had to use the wheelchair only in some shots. In most cases, she is only using it as a chair. And did they not have a scene where Aju (Dulquer) watches Sarah waiting patiently in the bus stop, after a couple of buses don’t stop and then jumps in front of the KIA bus so that Sarah can get in? Did that scene not depict the insensitivity of the drivers? Yes, I agree but this scene was just the tip of the iceberg, the one that topples the Titanic.
As a public transit user and a person who tries to walk everywhere, the realist (and the cynic) in me knows that how difficult it is for someone to get around in Bangalore. Drivers of both public transit and private vehicles are not sensitized enough to think about other road users. They think that they rule the road and this influences their driving practices. Our existing infrastructure only encourages and fuels these unsafe and insensitive driving practices. And if I find it extremely frustrating and annoying, imagine the plight of someone who needs assistance. I am not only talking about the physically challenged but also kids, young parents with kids, bags and strollers, older people with several issues in their legs, and someone who is temporarily injured.
Even in areas where there is some infrastructure, such as sidewalks, you can observe the issues with safe access – the rampant encroachment by our wonderful 2-wheelers and people who use it as parking spaces and of course the amazing design. In most instances, sidewalks are nothing but covered stormwater drains. And I am not even going to start talking about disabled friendly-access provisions in our public infrastructure and our buildings – both public and private. Several campaigns, articles and research highlight the lack of safe access in Bangalore (I have highlighted some key research and articles at the end of the post) and also present solutions and interventions to address these problems. A Times of India article from 1998 highlights the lack of safe and universal access to pedestrians and sidewalk users, including those needing wheelchair assistance. Its more a decade and a half and the state of infrastructure and attitude of our fellow road users is not any better.If anything, it is worse and it’s like we do not matter and we don’t exist.
I went around Bangalore, armed with my camera to document the issues that prevent safe access in Bangalore. Since a picture is worth a 1000 words, and I have several, here is my proof:
Boulevard of Broken Walks
Set to the Tunes of Boulevard of Broken Dreams (Green Day)
I walk (or try to) a busy road
If one can actually call it a road
With several bumps and holes
I find it frustrating to walk smoothly
I walk this busy street
With vehicles and encroachments galore
Where the biker swears at me
When he is on the wrong side of the road
I try to walk along
The light pole that comes out of nowhere
The open drains with the cover nowhere in sight
The almost jump that I have to make
To get down from the sidewalk
The sharp rocks that poke me
I am not even going to sing about the other sorts of horrors that I face
Sometimes I wish someone out there will see these issues
‘Til then I walk frustrated
As someone who works in this space and who has lost a dear friend to the lack of safe access, I am able to observe the positive changes, however insignificant towards improving safe access. But we still have a really long way to go. I also understand that we constantly compare our infrastructure with that of the developed countries, USA for instance. As Madhav Pai(@madpai) pointed out at the launch of Safe Access Manual on Saturday, January 31st, we forget that the USA also grappled with these issues in the 1950’s/60’s and 70’s, as highlighted in Jane Jacobs ‘s, The Death and Life of Great American Cities. And it took them a long time to get over these issues and to embrace safe and sustainable mobility. Of course, we have the advantage of learning from their mistakes and design and plan for safe movement and access rather than quick movement but until we esp. decision makers – the implementors, the regulators and the facilitators, remember that “everyone is a pedestrian and we all walk“, there is no solution in sight. As Gil Penalosa says, “provide the infrastructure to access and fully enjoy public spaces, and they will come.”
Another word for commonplace, dull, routine and something that lacks excitement, a pedestrian life is what most people are scared of, maybe because of the fear of falling into a rut and losing their identity or themselves in the bigger picture, whatever it may be. But I agree with Miss Chetwode-Talbot (yes, I am channelizing Ewan 🙂 and his charming Scottish lilt when he calls the vision of bringing salmon fishing to the Yemen…..a doolally enterprise ) that we are indeed lucky to have a pedestrian life, a routine life, as predictable as salmon leaping upstream.
Cos you see, its this routine that acts as a constant variable and provides us with the necessary patience and faith so that we can experiment with and experience several independent variables. These constants can be anything from a pay check, to bills, packing lunches, work timings, even taking your meds or anyone from your friends, spouse, kids………the patience, the persistence and the faith that these seemingly dull constants teach one can be likened to fishing, I guess, not that I would know anything about it 🙂
“How many hours do you fish before you catch something? Is that a good use of your time for a facts and figures man? But you persist, in the wind and the rain and the cold. With such poor odds of success, why? Because you are a man of faith and, in the end, you are are rewarded for your faith and constancy with a fish.”
The only other thing I can even think of equating fishing to is meditating. While attempting to meditate, one has to often sit quietly (or at least try to) and try to empty or quiet their mind. In this fast paced world, who wants to quiet their mind? Who has the time to quiet their mind?
And the moment we close our eyes, all thoughts, some from “long long ago, so long ago, no one knows how long ago,” come rushing in and it takes several minutes, sometimes hours or even days of effort before we can quiet our mind. But we still believe, we still persist, and we are consistent despite all the aches and pains, stresses the daily life begins, amidst all the loud and distracting outer and inner noise. Why do we do it? Because we have faith and in the end, be it 20 minutes or 20 hours or 20 days , we are actually rewarded with the ability to switch off our stresses at will and be aware, at a conscious level. Aware of what and what is the actual reward, you ask. Being aware of your thoughts, your pains,your dreams and your ever fluctuating moods. For instance, if you are aware that when you become angry, you lose complete control of your thoughts and words, then being aware of this might help you direct that excess energy into something you like to do rather than spewing out something that will hurt others.
Faith is not necessarily associated to any religion, or practise even. It is just a belief, that despite all the science, the theories that makes me a cynic and prevents me from taking the first step (small or big, depending on the perspective). Faith might be your practice or culture of never refusing water to the thirsty or sharing a small piece of chocolate with everyone else (for a kid it is a big thing). It might even be your belief in the fellow human being that enables you to make good friends, friends for life, no matter how many times you have been betrayed by someone else. It helps you forgive your known past, take risks to try out something new in the unknown future, all the while enabling you to live your present. Faith is that which enables you keep swimming despite all the pain that you undergo daily.
Faith enables you to hope, to love and to trust your instincts. And now faith has put this idea in me to try fishing, pretend to, that is ….sitting (or standing) blissfully, staring into space, with water around you, with a beer in hand, what’s not to like.
In the words of Sheikh Muhammed and Dr. Alfred Jones,
Seems like I just held you in my arms! I call you a lion, probably cos you remind me of one 🙂 So strong and fiercely protective of your brother, daddy’s pet, probably the only child in the world that I know of who woke up crying ‘Appa,’ trouble maker, rule breaker, heart stealer, one who is not scared of speaking his mind, non-stop giggler, Mr.Small, our lil Hamster :)…..the list goes on.