Elaine In India

Oh the revolving door that is my room. My back still feels fine after the procedure yesterday but I am exhausted. All I want is a nap. 30 minutes to recharge and allow my baby stem cells to do their growing and healing. Not a chance. If the door is not opening my room phone is ringing. I am not even the intended contact nor is anyone in my room at the time of the call. By late afternoon I am done. Either I start screaming at the top of my lungs or run away. My mom and I choose the latter. One of our favorite markets is lit for Diwali with strings of lights and decorations. We wonder around the market and return to the hospital for dinner. As the natural light fades riding down the streets in a tuk tuk become like driving through neighborhoods in the states looking at Christmas lights. The major difference — in India lights are hung vertically like a waterfall. I needed the break and the lights are a most pleasant surprise after an overwhelming day. I have been here for Diwali before but I was not well enough to go out and see the lights. Now I am.

I’m headed back for more treatment. This time on my terms not out of desperation, or doctor or even parent direction.

I approached my parents. I contacted Dr. Shroff on my own. I chose the flights. For the first time I set the trip in motion.

Packing for my return I reminisce on all that brought me to India the first time. 7 years seems like long ago. At the time I was so young, Dr. Shroff had my parents wait until I was 18 to bring me to India (Dr. Shroff now takes patients younger than 18). I still remember the news as the best birthday present ever. My Lyme ravaged body was catching up to my already deteriorated brain. I could barely speak. I could not read or write. Fatigue and pain were constant. Ripping bartonella pain was taking away my ability to walk even the short distance to the bathroom. Treatment efforts had become ineffective. The pain medications covered a fraction of my pain, a fact I tried to hide.

Back then Dr. Shroff had her patients stop all medications before undergoing her stem cell treatments. I could not go without medications at home but for stem cells I stopped everything. This meant going off cold turkey for most of the necessary prescriptions. I would not recommend doing this then or now. I was incredibly fortunate that I did not suffer any withdraw effects. At least none that could be deciphered through my Lyme symptoms.
I went to India in a wheelchair. And although I could walk some I returned home in a wheelchair after 3 months of treatment. Medications that had stopped working to treatment my condition were becoming effective again. However, within 3 months of returning home to the states I was in need of more stem cells treatment. This came much earlier than expected but again my mom and I made the journey to India with me in a wheelchair.
I made the same journey two more times. My last stint left me with an able body and mind ready to relearn how to live.
Stem cells heal damage. They must be taught to live to flourish.

I spent the next years learning and relearning how to live. Sometimes I fell down sometimes I moved mountains. I was able to return to school. Though I was by no means out of the woods and healed, I had an immune system ready and willing to work for me.

My brain raced with all of the new knowledge. It over fired leading to new challenges.
Treating bartonella left me with CIDP.
And over this last year my adrenals became ineffective. Adrenal insufficiency made me dependent on steroids to remain able to function.
Yet I still managed to move out and live with some assistance but growing in independence.

And this is where I now sit on my apartment floor packing my last few items in preparation to leave for India once again.

Like chicken on the grill, my head sears with pain.  Only 20 minutes into my studies and the pain begins.  Slowly at first it intensifies with the passing of time.  Stopping now will not stop the burn.  Usually this pain comes after I study or focus for long periods of time never during.  I’m stuck none of the problems make sense it’s either my brain or the book, one is wrong and I’m guessing it’s me as the math problems swirl circles in my brain. The chicken continues to sear.

In this moment I want to give up, throw it all away and just let what I have gotten back be enough. If every time you tried to remember or focus for long amounts of time you got a burning headache wouldn’t you just want to leave well enough alone?

I can’t I’m so close. My high school proficiency test is in a week, so onward I must press. I can’t stop, it’s hard enough looking at a book and relearning something you know you already know but can’t remember. I want to know what I know.

I cry in frustration. The tears fall on my book. Tears have become my response to frustration, I guess in most instances these past few years pain has caused or accompanied my frustrations.

I dry my eyes after a pep talk from my mom and though she urges my to stop for the day I go back to my algebra book, skipping the problem that was sending me in circles.  My head feeling like it’s moved onto grilling a mix of vegetables.  for days with no apparent end in sight.

As I continued to regain my health and add more back into my life I find some things are harder than they once seemed.  I am a learner, new knowledge always fascinated me and giving up going to school in order to take care of my body was one of the most difficult parts of my life to let go of.

School was all I knew, being a student what else do you know when you get sick at 13?

When I was fist getting ill I went to school, pressing through because it was important to me.  I am driven. If I really pushed myself I could continue to go to school though at a high cost.  My health deteriorated more and more, homework took longer and longer to complete and my parents assistance became a constant. I had worked myself through fatigue, pains, and non-existent short-term memory. It was only at my doctor’s urging that I stopped schooling in hopes of stopping my health’s decline.  Otherwise, had my doctor not released me, I surely would have continued down this road of only making myself more sick.  I continued to learn on my own while sick but, in the back of my mind, getting back to school was my goal.

Years later with the help of various treatments and stem cells I am once again able to try going back to school.  Unlike the few times (once each year virtually) I thought I was well enough to try again, this time I truly am.  I am starting with one art class.  So far playing with metal and fire is going just dandy.  Along with this class, I am also studying and taking assessments, this is where the pain in my head starts.  A friend earning her teaching credential needed someone to do learning assessments on.  I am her case study.  It is great practice for the upcoming tests I will be taking and I can see the areas I may need to work on more after being sick for such an extended period of time.  These assessments are long and cover all the basics in math, English, reading, science, etc.  However I have not been able to access what I learned prior to being sick in years.

IT HURTS TO THINK. Literally. I get a headache after each session that lasts for hours. All of the pathways that weren’t used for so long now burn with use. We split up the tests into1 hour chunks instead of the 2+ hours all at once. I feel my brain sting after.

You know when people say don’t think too hard, you’ll hurt your head, well mine hurts and I’m not thinking that hard.  Oh does it hurt, and yet it’s worth it.  Lyme shook up my brain, strewing its contents about and locking it away.  Now I have the rusty keys and I have the ability to unlock what has been in my head for years.  My writing is back, reading too, spelling is coming, and math is hard work.  Math makes my head hurt the most.  Algebra, find x and y hmmm… I know this stuff.  I recognize what to do but just can’t quite remember.  Everything I do takes longer than it used to but I can do it with a little practice.

It is time to leave again, back home to the states.  Dr. Geeta says she hopes I return for a visit, and by visit she means just to play, not for treatment. She wants me to spend a year living my life and free from the Lyme centered one I have lived in these past years.  I do believe I am getting better and have seen vast improvements but I still have a ways to go.  I read with ease, I am able to write and remember.  I have my short-term memory back. My speech is back and I say exactly what I want to say and more.  I have more energy and am getting my independence back too.  It is true though that, much of my further recovery is up to me, continuing physical therapy and doing things that exercise my brain as well getting out in the world.  There is still that little part of me that says not just yet.  It hasn’t even been a year that I have felt this well, let alone six months and I was sick for so long, seven years.  That part of me knows healing takes time.

I see don’t speak too soon written all over my mom’s face when she hears Dr. Geeta say visit with such confidence.  My mom too is unsure.  I am her baby and she wants to be sure, absolutely sure.  Lyme has so many ups and downs with lots of trick up its sleeve.  And she knows as well as I that the ultimate test is if I can return to school and stay healthy.  School has been where I crash the hardest.  I over do it, I am learning not to.   But I push myself, and when I push my body stresses and my health declines.  It is a cycle I have dealt with since I started getting sick.  There is just something inside that drives me and it took my doctor telling me that I would only keep getting sicker if I didn’t stop school for me to see.  With clearance I have tried several times to attend school over the years but I just didn’t have the health.  Now I do, and that is where I will see just how healthy, well, and truly recovered I really am.

I am on the road though, the road to recovery this much I know.   As I leave India I am as equally divided, as I was when this third trip began.  I miss my family and friends, and pets back home.  But I have an Indian family and friends here too.  A piece of my heart always stays here in India when I leave.  India is the place of my rebirth of sorts.  I feel I have been given such a gift, there are no words to describe, just look at me, the smile on my face says it all.  I gave a present to Dr. Geeta and the hospital too.  Nothing is as great a gift as the one I received here, though my present is what the stem cells restored to me, my heart and my soul, and my freedom of expression.

My very first trip I made a promise to Dr. Geeta.  She had heard I had a passion for art and had enjoyed painting, though I hadn’t been able to paint in some time. Dr. Geeta told me she wanted me to paint something for the hospital during my visit and she would hang it up on the wall.  I used to feel an ease with painting that had gone as the Lyme crept into my brain.  Mixing colors was so hard.  I would spend so much time mixing that the paint would dry before I could use it.  And then there were the tremors in my hands, I couldn’t make straight lines and it was so hard to even hold the brush.  I was too sick to paint that first visit.  In fact I couldn’t paint my second visit either.  This third trip though was the difference. One day, when I was out at a market with my mom, we found an art shop.  I got brushes, paints, and a big canvas.  In between physio sessions or in the afternoon when it was too hot to go out, I would sit in bed and paint.  For the first time in years it came with ease and felt like the brush was an extension of me.  I kept my painting a secret.  The sisters saw it only after my last procedure when I worked on it while lying in bed, that was it.  I showed Dr. Geeta my unfinished painting this last day. I wanted to see her face when she saw it.  Shock, surprise and a big smile ran across her face. I think she thought I had forgotten. I did well, Dr. Geeta had not heard any rumblings of my painting, a pleasant surprise.  After that I went right back to my room to paint, I had only a few hours before the flight.  I was determined. I was not leaving without finishing this painting!  I did finish and left it on Dr. Geeta’s desk. I said my goodbyes.  Before we rushed off to the airport, one of the doctors took a picture of me holding my painting.  A red dahlia, from a picture I took on a walk with my dog, one day back in California.  The bright color made me smile.  My promise I kept.