Sunday, September 11, 2011

Getting to this Place

I have been in a wheelchair for 3 years. I kept thinking I would make a miraculous turn around in a few months, and laughed when I picked up my disability sticker, which was good for 3 years. 2011 seemed like a very long way off, and surely, surely, I thought to myself, I would never be sitting down then? I suppose life never turns out how we planned, and that's okay. I know one day I will be walking, and have decided to take life one day at a time, the only way it comes.

It happened so quickly. At the end of January '08, I was climbing up mountains in the snow and running around. The beginning of February brought a month of bronchitis/pneumonia, from which I never really recovered. I dragged myself from doctors office to doctors office,and  walking slower and slower through the coordinators, getting up with more effort. The hours I spent at school were becoming shorter by the day, until by the end of April, I had to admit out loud that I couldn't do this anymore. That I had to become a full-time patient. I didn't realize that would be the end of my life as I had known it, that ever careful plan would drift away, and that it would be years until I could look back on my life and take in all that had happened. I still thought I suffered from something easily fixable, and that the wheelchair was very temporary, until I started treatment for whatever I had. We even borrowed a wheelchair from the Red Cross (although it was more than a year before we ever returned it).

Eventually we decided that the stubborn Canadian doctors could never face the fact that I suffered from Lyme disease. I feel certain that their inaction would have killed me, or condemned me to the life of a vegetable. Around this time, I began to forget more and more things, until, after a very high fever, I could no longer remember anything short-term. Still, I remember nothing that has happened since June 2008, although I always pepper my family and friends for questions about my life, and write extensive notes.

Our first stop was several doctors Seattle, one who's information and training was limited, which put my life in danger. The other ended up preserving my life, and making it possible for my family to travel to California, to see another doctor. I was very ill, nearly out of my mind with the pain and terrible herxing (violent reaction caused by the die-off of Lyme bacteria). Torture. It was finally decided that I needed to be seen by someone with the most experience, a pediatrician in New Haven, CT, with decades of success treating the sickest kids. We ended up living in CT for 9 months while I was in treatment, a combination of supplements, oral antibiotics and daily IV's. But this is not the place to get into this journey in depth. I write a blog about my struggles and triumphs with Lyme disease and co-infections, called Bite Me. My goal has always been to inspire I am home now, still ill and still in treatment, but I would like to focus this blog on looking forward, on becoming well.

Around mid-July, we traveled to California so I could have the controversial Liberation therapy, which unblocks jugular veins in your neck, returning blood-flow to your body and brain. The procedure was designed for MS patients, but a handful of Lymies have also had great luck with it, which makes sense as MS and Lyme share many similar symptoms; some could argue that MS is just misdiagnosed Lyme disease, but that discussion is for another time. Immediately after then procedure, I noticed the pressure in my head, like a constant head-cold, was gone. As I was getting dressed to leave a few hours later, I noticed that I could feel my legs, something I hadn't even realized I hadn't been feeling for years. It is easier to walk when you know what your legs are doing, and easier to think when the pressure is lifted.

When we got back home, Mum and I were discussing what I can do now that strength is hesitantly returning to my legs. I am an avid spinner (hand-spinning yarn, like the miller's daughter in Rumpelstiltskin), and since the procedure, I noticed I can spin faster and longer, which translates into more delicious yarn sooner! In a stroke of inspiration I suggested I might be able to do chair yoga. Even saying those words out loud was a big deal for me, as usually I spend all my standing time transferring chair to nearby chair. I had taken a leap, and with those words spilling from my lips, I felt a rush of a little something people like to call 'hope'. But when you are feeling hope from the inside, it feels much more wonderful than any word you could put in print, than any phrase you could turn with ease, or any image you could conjure with a magic wand or brush.

I began my search for chair yoga teachers. Victoria isn't that small a city, but we are known as the capital of the 'newly weds, the nearly dead's, and the flower beds'. I found a few people who used to teach chair yoga, or offered it for seniors, but neither of these options worked out. I stumbled across a note offering a chair yoga teaching certificate, which happened 2+ years ago. I thought it would be asking for too much that years later, Michelle still taught chair yoga. Fingers crossed, I emailed her, explaining my health situation, and my eagerness to give yoga a try. To my intense happiness, Michelle was also excited to find someone who wanted yoga therapy, and immediately agreed to teach me. It was a series of unlikely coincidences that just might put me back on my feet.

I committed to 3 months, even before we met. I am one of those people that once I put my mind to something, I achieve the goal. I put all of myself into my aspirations, no matter how ridiculous they sound to outsiders. You just have to visualize yourself completing the task effortlessly, and calmly, and miraculously it happens. The first step to overcoming any obstacle is to tell yourself that you can do anything.

When I told my family that I wanted to graduate high school with the rest of my year, after missing a year and a half of school due to sever illness, I know they wanted to support me, but found this idea unrealistic, although they were kind enough not to doubt me aloud. I had 9 months to complete 12 courses, the minimum I would need to graduate. I graduated with honors in June, 2010, and attended my schools prom in style!

So I am going to set myself some loose goals that I hope to achieve through yoga therapy. The way Lyme disease, Babesia and Bartonella have lay siege to my body is very complicated. I can't force my body to heal of course, but am hoping that yoga will help me improve in all areas, particularly my sleep issues, walking difficulty (ataxia), pain and extreme sensitivity, chest pain, shortness of breath, anxiety, and bridge the disconnect between my mind and body. Even a very small improvement in some of these areas would be wonderful! Michelle herself started down her yoga journey to cure her insomnia, at age 9. Her story is pretty inspiring, and her attitude and positivity uplifting. I am so grateful to be working with the lovely Barb, Michelle, and Tessa 3 times a week. The journey to health has begun. Take a deep breath...are you ready to join me?


  1. Nicole you are such an amazing woman! You are an incredible writer and an inspiration to EVERYONE! I am with you a hundered and 175%! Thank you for this wonderful window into your incredibly challenging yet inspiring life!
    Love Jessica

  2. OMG my first comment...and from the lovely jessica...i am so lucky to have a friend like you. you made my day!! i miss you SOOOO much :(. thanks for supporting me have no idea how wonderful that feels for me!! <3

  3. Nicole, you are such an inspiration! I just know that if you continue with this positive attitude you will be walking soon! I wish you the best and agree that yoga is a wonderful place to start to connect the mind, body, and soul :-)