A Cultured Life…

…stumbling through life with two beautiful daughters – often tripping, sometimes running!!

Falling down a rabbit hole, and how

After ten months in a what seemed a windowless space, I am gingerly making my way towards the proverbial light at the end of the tunnel. What awaits at the fringes of the light roils my brain but I am determined to persevere. You see, I have no choice.

Ten months ago, I was diagnosed with Multiple Sclerosis.
This is my coming out moment
This is my story, through the MS lens
A telling of everyday battles
A rendition of of the everyday amazement that MS brings
Basking in the new addition to my repertoire – ‘newly diagnosed’ (About Me)

But I get ahead of myself.
How did I get here?

01/29/17: It started out as a harmless Sunday, an afternoon walk on a surprisingly balmy afternoon and ended with a trip to the ER with two fractures in my left foot. I left the ER wobbly on crutches, sorry for myself and trying to mentally climb the stairs to my second floor apartment.

By the 5-week mark, I was beset with painful tingling and numbness. In between working from home and navigating crutches, yet grateful for my limbs, I turned to googling my symptoms. While the google prognosis was hopeful, in the next couple of weeks, my fingers turned to claws and I had to peel and unpeel my fingers around a coffee cup.

By the 7-week mark, the tingling and numbness was driving me crazy. Showers which were previously a challenge in an able bodied bathroom, now filled me with terror. Opening a bottle of shampoo, applying it to my hair, was agonizing. I realize now that our water consumption must have gone up two fold because I could no more be sure if the conditioner was completely washed off.

A 6am call to my orthopaedic’s after work line confirmed what a distant part of my brain already knew – I needed a neurologist.

Even with the best insurance employment could buy, the first appointment was three weeks out. In a panicked state, I made appointment with whoever had availability. Thus began my consults with four neurologists.

From my first, DrA – Many lab tests, two MRIs, weekly B12 shots. I also went in for a steroid infusion. At this time, I had no inkling of what was down the road. However, during the office visits, in that empty space while you wait for the doctor, I would look around the room and take in the books and magazines on display. However, my eyes kept being drawn to an MS book on display. I think after the many office visits, my subconscious and brain were forming their own connections, even as i fought to keep it down.

I will never forget the moment I heard my diagnosis, the second week of April. I felt a scream erupting my throat and could only croak “I want my husband”. husband was waiting outside, catching up on work calls, no idea how things were already changing around us. Once he held me, I burst into tears. That was when I heard the sentence that scarred my soul – ” Don’t worry – you will not die of MS, you might more easily be hit by a bicycle or car”.

I wanted to be hugged, be held tight, told that everything would be alright.

I hated her for that – but along the way and in these few months, I have come to understand what she meant. Don’t kill the messenger, right? 🙂

My second, DrB – my plan B at a facility close by (Pun unintended!) because my Plan A choice was out of county. He was kind, efficient and spent time talking to me and doing a solid clinical exam. I am on the treatment plan recommended by him and would have been happy to stay with him.

My third, DrC – The ‘Expert’, a God in the MS field in my part of the world. By the time I went to my appointment with DrC, I had been fitted into DrD’s schedule (Neurologist #4) who was my Plan A from above. So this was just a checking of the boxes because of the appointment was got and my deductible met. I loved the man – the confidence, the experience, the Can Do personality which is exactly what i needed. Best of all, Neurologist #4, DrD and he are collaborators and seemed to have a mentor-mentee relationship. He promised to get a note over to DrD about this consult (which he did)!!

The last on the list, my current DrC is young and already a leader in MS treatments. He deserves a post all of his own and for purposes of this post, I am happy to have been 4th time lucky.

I have heard that people go through changes with their doctors, either because they overlooked, neglected, or reduced to just another one walking through the door. I want to think that I have found my match (medically:))

Is this what dating feels like in the age of BharatMatrimony, eHarmony, Match, Tinder, et al?

Now for the real work-

I am reading, no devouring, the material out there and boy does it exist!! I need to keep a written list of sites that I should frequent because my bookmarks list is an ungodly mess!!

I am also seriously researching CAM therapies (Complementary and Alternative Medicine) – I hate pills you see. I have quite a collection on my counter but these are non-symptomatic pills (I might have just coined the phrase !)

I love Essential Oils! Have invested in a variety of oils and a Diffuser.

Essential oil

I hold my children tighter, I cherish my husband more than before

I have made peace with the fact that my hands many never come back to pre-MS state. I miss the sense of touch—

Girding up for interesting times ahead. I take encouragement from many wonderful souls who have been grappling, dealing MS far longer than I have. I have come to the somber realization that if I have harbored a desire to do anything, I should do it NOW

I will quote William Henry Davies in his poem Leisure ” What is this life if, full of care, We have no time to stand and stare.”

My time to stand and stare is now.

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Spring forward!!

Once again I wearily toss the covers away from my face and peer at the digital green numbers. 3.30 AM stares back at me. the next instant, I sat up, my brain registering 4.40 AM and i have never been happier for Daylight Savings Time (DST)

One less hour spent willing my brain and body to sleep, while I resist the urge to walk over to the kitchen and take my prescription pain medicine. The prescription does say ‘As Needed’ to side-step any thought provoking yes/no decision clauses.

Out of nowhere, I began experiencing a shoulder pain and in four months went from a twinge to all out dysfunction.  Back to my favorite Ortho who said it could be Adhesive Capsulitis. An inflammation of the sac covering the ball and socket joint of the shoulder. The kicker – Spontaneously!

I needn’t have have hit my shoulder, yanked hard on something, twisted my shoulder – to get this. Then again, I could have done any of these and I just don’t remember.

As much as I hate to admit, the human body does show the ravages of time. Of course, ever since the MS diagnosis, my understanding of body and health is turned on its head. I remember reading somewhere that the body loses 30,000- 40000 skin cells ever minute. All other body parts are also going through this shedding process, at different speeds, even as I type!! I am wondering about other unseen parts on a similar trajectory.

Mentally peering telescopically inwards, my mind is distracted from the pain meds. After one week on the opioid-group of meds, my taste buds are shot, my insides are on a 24-hour rollercoaster, and the exit pathways have shut down.

I am grateful for the one-hour early dawn and the humdrum routine which awaits.

Today, I will do a Risk-Reward analysis of a 6-hour sleep with the aforementioned side effects (in addition to all the conditions in scary literature which accompanies the medication) OR a two hour sleep cycle with perhaps more time to write😊

 

 

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A pack of Jim-Jam and I

The packet on my desk...

The packet on my desk…

It did not occur to me that a mere packet of jam cookies could evoke such strong emotions.

It was the first trip to the grocery store since returning after dropping my second (and last!) child at school. A routine shopping trip, fighting jetlag and trying hard to get back into the groove and trying even harder to NOT think of a home without the kids – living with you!!

It was odd to walk into the cereal aisle and not reach out for the largest box of chocos that I could lay my hands on. At supersonic speed my brain was reliving the innumerable time when I had combed this aisle for every variation of chocos possible – Stars and Planets, Choco Duets, Chocolate Chocos and so on. As a mom on their Facebook page said, “My shopping cart always had a Chocos!!” And I was proud of it!

This time, the shelves were stocked to the ceiling with boxes of Chocos and I did not reach out for them. I had half a box sitting in my shelf and no one to eat it! I briefly crossed paths with the thought that I did not have to buy this sugared cereal till the next summer visit by the student. I chalked that up to one more sign that I am an empty nester.

Pushing my cart filled with kitchen staples such as whole grains, I came across jams and spreads. This is another section I dearly love. I have spent many anxious minutes debating over the pros and cons of a 200gm Nutella (bonus – the glass jar can be used as a handy drinking vessel) and the 400 gm Nutella (in my opinion too big and too lacks nutritive value in large doses) The same decision paralysis would apply to the beloved Kissan Mixed fruit jam (a staple from my childhood as well!), the de riguer of the simple Peanut Butter Jelly sandwich.

These I walked past as well, that list of signs growing in my head.

The next aisle to evoke some serious thought was the shampoos and conditioners. We went from a home of three women, with varying hair lengths to one with a close cropped style. This meant that the existing supply of S and C would service innumerable pea sized drops. Feminine hygiene products did not feel much love either – One quick pick up and was off to the cash registers.

Several items were being quickly being added to my list of signs. Please keep this list in mind as you get to the end of article, if you do!!

The unifying thread across this grocery store trip was the size of my purchases. I picked up a packet of Maggi where earlier I would have picked up two, even three. All flours and other staples were cut by half. Never mind that my bill at the end of it all was still four figures; in my mind, I had, sadly, not picked up the staples on my shopping list.

Back home and putting things away, the full import of my shopping trips-to-be, nay my new life, hit me and hit me hard. Like the proverbial straw which broke the camel’s back, all it took was a packet of Jim-Jams to allow the tears to pour out. I went item by item over my list of things – meant to keep me over the edge and that is exactly what happened

This specific packet had lain in the corner of my pantry unit, a forgotten vestige to time that has only recently passed by me. This Jim-Jam, “A crisp biscuit sandwich with thick Vanilla cream, topped with a dollop of Jam, kissed with sugar crystals,” is a receptacle of my momhood woven into kitchen and food memories. I cannot look at another one of these without thinking about my two dearly beloveds, cozying up with Jim-Jams a glass of milk for a midnight snack.

With this episode, I have banished my jet lag. I am in uncharted territory. I am now on a cautious look-out for other innocuous items which MAY have the potential to open the floodgates.

Oh the life of an empty-nester~~

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mommy (or daddy!!) thoughts…..

Today started out as a weirdly difficult/sad/moody day for no particular reason. Read this piece on parenting by Charles Blow in the NYT http://www.nytimes.com/2013/11/07/opinion/blow-the-passion-of-parenting.html?hp&rref=opinion and promptly burst into tears at the office!! Just what i needed – a soul cleaning good cry. One line which stuck long after is “….parenting was a lot like giving a hug: It’s all about love and pressure and there is no one way to do it.”

I am in second college application phase of my life and am not quite ready to look in the eye at what’s next.  Thank god for #NABLOPOMO – I have found my outlet!!!

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After the smoke and guns….

While all of Boston celebrates the end to last weeks madness, I am sitting somewhere far away in India. The finish line looks farther than ever before to me. Now it has become a frightful place to be. Reading a news article about the London Marathon 2013 held this sunday, one of the runners asked his family to stay away from the finish line.
Sadly, I feel the same way.

I am a runner, desperate to get back to running. But I find myself constrained. I make excuses for not running, my body is recuperating, I need to give it time and such. But I can’t bring myself to run.

I need to see Aditi, hold her close, for a long time. I need to give my thanks that I am living to tell a happy story. For this, I will have to wait another two months.

Only then, perhaps, I can tie my laces once again – plod my way through the last 3 kms (could be a 5K, a 10K or a 42.09K :))

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The Boston Marathon and my child

I have this huge stone in the pit of my stomach right now. All day I have been alternating between a hole in my stomach and a stone to fill it.
A moment of great joy, immense pride is now forever wrapped up in fear and grief and misgiving.
Aditi would have never been at the Boston Marathon 2013 medical tent if it was not for me.
I am the one who took to running first, in a family of avid sports watchers.
I have forever painted srinivas and Aditi and swati with the running infectiousness that only an insanely happy runner can.
I have tried to protect her from the real and imagined bad thoughts.
I have tried to protect her from now and future mistakes
How do I protect her from wanting to do something because it would make her mom happy?

This the reason she was at that medical tent- because it was her second time volunteering, because mom would be so proud once again, because for now this would be closest mom would get to the Marathon course.

How do I protect her??

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What do Clementi & Ravi mean to me?

The guilty verdict of Dharun Ravi in the University of Rutgers Webcam spying case hit me hard.

  • University
  • Freshman
  • Dorm
  • Room mate
  • Facebook
  • Twitter
  • connected 24/7

Aditi my 18-year old freshman is all of this. But she is a 1ooo miles away from home and there is no end to the things I worry about. Letting my first baby to go to the US for undergrad studies was the hardest thing I have ever done. September 2011 – All of us flew down to the US to drop Aditi off at University. Many $$$, much advice and many tears later, she was in her new home and we were ready to go home to India. Our sage advice (both necessary and unwanted) revolved around the importance of regular eating habits, regular bed times, partying, some bit on boys and the ground rules for Skyping at designated times of the week.

According to published reports, Dharun Ravi, 18 set up a video camera in his dorm room and briefly filmed his gay room mate, Tyler Clementi, also 20,  in a tryst with a 30 year old man he met on an internet site. A few days later, Dharun set up the webcam for a second recording and proceeded to tweet about the ‘viewing party’. The second viewing never happened because Clementi found and turned off the camera. A few days later Clementi jumped off the George Washington bridge after posting to his FB account. At that very momet, Dharun posted an apology on Clementi’s wall.

All this in the first three weeks of school!!

Of the many pieces i have read, this one from the The New Yorker struck a nerve – there does not seem to be much hate or malice on either side. Just teenage stuff with tragic consequences.

As a mom, I try to imagine every moment that that both the boys went through. Tyler – Shy, just come out, testing his independence; Dharun – the brash, tech savvy, eager to score points with his peers. I try to leave the legalese to the experts.  What comes out is the mean-ness that only teenagers are capable of; that feeling of invincibility and the feeling that the internet is their oyster. I truly believe that youngsters today do and do not recognize the power of this explosive online world. ‘Kony 2012’ and ‘Tyler – Ravi’ are two extremes in this spectrum.

I know Aditi is an avid Facebooker, connected closely to her younger sister and friends she has had for much of her 18 years. I have gently pointed out the pitfalls of too much public showings and impression I want to think that she is fairly sensible about social media and friendships in general. What I was not prepared for was the realization that sensibility is not going to help in the explosive online world of personal branding which is viral and absolutely boundary-less.

­­­­I know that I have raised independent children. But nothing prepared me for these new fears that I need to confront. I am emailing Aditi articles, comments – anything that will give her bits and pieces of the jigsaw puzzle. I hope she will draw the correct thoughts from two lives irrevocably destroyed. I want her to recognize the dangers and the pitfalls of the world we live in today along with the ease and fun. But most of all, I hope she will know that her parents are there for her, always.

The hardest part of parenting is waiting – while work in progress.

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What Rahul Dravid showed me about Swati…

On March 9, 2012, Rahul Dravid threw the entire cricketing world and a nation into a frenzy by announcing his retirement “from International cricket and domestic as well.”

There have been reams written about this man – his humility, his graciousness, his erudition, his technique. I am not qualified to write about his cricketing record, but Rahul Dravid has given me an insightful peep into my 15-year old daughter Swati.

Since moving back to India in 2004, my daughters Aditi and Swati have taken to sport, especially Cricket and Tennis in a big way. Every match, every series telecast on TV was devoured by the girls. It was all I could do to lay down the law that said we would only watch matches when India played; the rest would have to be followed on the news and the internet. It was in 2009 that I learnt of an old classmate who was now the editor of Cricinfo. During one of our conversations, I learnt that he was a good friend of Rahul Dravid and that Dravid was visiting his Bangalore office. I arranged for Swati to visit the Cricinfo offices and meet him. Speechless and spellbound, Swati had her picture taken with both Sambit and Rahul and said not more than two sentences during the time she was there.

At that time, I treated this incident as famous person sighting and figured it would just pass on. As time wore on I was pleasantly surprised when Swati began exhibiting an interest in writing. In the days since that meeting, I got to know that Swati was already a Sambit loyalist. Sambit and Rahul together was a whole different story.

In her reactions and affections for Rahul Dravid, I recognize her ability to see behind the glamour and the glitz. I see her recognize the flinty determination on his face and the stoicism that Rahul has displayed on the pitch in YouTube videos of his grand matches. I have read Rahul Dravid crafted his game with a phenomenal individual effort.  You could see this determination in his face; it was not just an effortless waving of the bat. I see this determination in the way Swati has addressed her Achilles Heel in Math and can’t help but wonder if somewhere, somehow, this is where her determination comes from.  As she soaks in the hundreds of articles she reads about Rahul Dravid, she recognizes the grandeur and the simplicity of a man who epitomizes a gentleman and contrasts him with people who now bear the mantle in Indian cricket.

As parents we are painfully aware that children are a Work-in –Progress. We wonder who they will be when they grow up and hope that they embody the best in you as well as the very best they can ever be. Swati is only 15 but her awareness of life through Cricket has been a remarkable journey for me and I feel as though I am watching from the sidelines. She has celebrated the losses of the Indian team and cried through their lows. I know that the recent England and Australian tours were somewhat of a watershed and portend huge changes for Indian cricket. I listen to her musings and sense that she has a far greater understanding of the game than I do.

Something tells me that we have raised a girl who bats a straight bat. My hope and prayer for her is that the qualities she has been reading about and perhaps writing in her blog are the ones that she will keep uppermost as she goes through life. Not just for herself but also for those that she chooses to keep in her orbit.

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Now the knee….

A torn hip ligament, a broken elbow, a torn shoulder, now the knee. I am not sure what comes to mind on reading this litany, but I have just about had it!! Since April 2010, I have been dealing with all of the above, in the order given. Just as I thought the shoulder was healing, and perhaps, just perhaps I could get back to running, I found myself hobbling on one foot, unable to bear any weight on my right leg.

My right knee was killing me.

My friend and fertility specialist, Dr Madhuri suggested an Ortho that I could go see. The ortho, Dr. Sudhir Pai gave me the welcome news that all six ligaments are in good condition. Hallelujah This meant I could run whenever my shoulder felt it could handle the running. The cause of the pain is calcification behind the patella (commonly known as the knee cap). The patella is the single most important bone in the leg connected to all kinds of ligaments and muscles in the back and front of the leg and plays a huge role in walking, running, jumping, skipping, climbing, bending or carries a heavy load. The presciption: Simple exercises to strengthen the quadriceps which are the four muscles on the front of the thighs.

All this while – the my brain maze is just thinking about running. I want to get back to running – the 4.30 am alarm, the pounding of the pavement, the soft trails under my feet, the sweat soaking my shirt, the camaraderie of my running group, the unabashed gluttony at breakfast.

I have missed it. All of it.

 

wake the pounding of the pavement

I was

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I am really doing this!!!

I want to write.  Any number of variations and years after I first thought these words, my words will see the light of the day. One and a half months after another new year vow my blog is up and running. There is a crazy lightness of being and I feel the words tumbling out.

It has been six months since my daughter, Aditi, began Freshman year at Boston University. I am still not completely used to this altered state at home – three of us instead of four. We have startlingly different ways of dealing with Aditi’s absence.  My husband Srini goes about with usual abandon, knowing full well that I will tell him something, anything about Aditi that he craves so badly. My 15-year old, Swati has suddenly taken on the mantle of an only child and I think it has now lost its novelty. I find myself overly solicitous, going in to check on her like three times in 30 minutes. I have always known that my two girls are different from each other.

How different and how difficult – I am realizing today.

I miss the follow up notes after an exam. I miss the expression of relief when there is a break between exams. I miss the dissection of the q-paper after work.

I am reminded of a paragraph I came across many years ago. I don’t remember the context or the magazine or book or the author.  “A mother does not love her children equally. She loves them differently”

I happy when S said that a topic that I insisted she study,  did actually come for her test. That is the closest she will come to expressing herself.  She wants me to leave her alone to unwind with another reading of Harry Potter. She will never know how difficult it is for me to leave her alone. I want to baby her!1.

They are just 18 and 15 and I think they still need me.  I KNOW they need me. What I do not know is how to hold on tight enough that they don’t lose their way and yet let them explore the world and themselves

This is it for my first post. I did not mean for this to be sad – contemplative, yes. I hope in the coming days I can talk about all that makes me happy.

 

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