Thursday, January 1, 2015

A New Year

I don’t really go for sappy sentimentality but I do like the power of reflection, reflecting as an impetus for learning and changing. 2014 was a rough ride to say the least. It was the most difficult year for me health-wise and I felt like I was perpetually trying to claw my way out of quicksand. 2014 was a re-play of the nightmare of 2011: bizarre symptoms that only got worse and worse, trying desperately to hold onto a career and some normalcy, constant tears and heartbreak, low after low. But I don’t want to think in those terms anymore. 2014 also brought gifts that I never expected and wouldn’t trade for anything.

This was the year that I essentially “came out” with my illness and started to be comfortable talking to people about it and even feeling empowered by what I’ve survived. Starting this blog in February was a catalyst for this. As I look back through the posts, the chaos and desperation is palpable in almost all of them but I tried to use writing to regain some power over my life and to understand that chaos. It allowed me to stand in the eye of the storm and sometimes even laugh at the absurdity of it. I had been thinking about starting a blog for awhile but resisted taking the plunge. This has helped me be able to externalize my experience to try to make it useful and educational for others. I’ve also met some great fellow Spoonies along the way.

This is the year I became comfortable with the term “disabled.” I put off getting a cane, then the walker, and then the wheelchair as long as possible. I didn’t want people to see me for what I truly am. Now, I don’t care anymore. I’m more than happy to take my wheelchair or use an electric cart. They mean being able to leave the house safely and comfortably. They also have the added bonus of wearing less sensible shoes and using mobility aids as an accessory, like the glitter cane my husband made me . You also get VIP parking wherever you go when you’re disabled. There has to be a perk somehow.

Glitter cane!

I’ve been reclaiming some things I lost over the last few years. When I was ill, working, and resisting my illness, I was an empty shell of a person. I had no energy for anyone or anything. I was living in a perpetual state of terror, maintaining a calm exterior and an interior in profound disarray. Not living. Only surviving. Living a double life. Now I’ve been reading more, watching endless history documentaries about Neolithic Britain, and trying to write and play more music. It’s nice to have other interests besides working.
2014 was filled with strange enhanced interrogation medical testing, including getting stabbed with needles repeatedly, doing a balance test designed for NASA, and having hot air blown in my ears. Some people can talk about their adventures in travelling over the year, but I wonder how many of them have had a doctor say to them, "Ok. Now it's going to feel like you're peeing." Now, this is how to party.

I have made some progress toward a diagnosis. We know I have some kind of neuromuscular autoimmune disease that is likely Myasthenia Gravis but my doctor is hesitant to provide the official diagnosis. I'm trying to get comfortable continuing to live in the grey area. The plot twists of this medical story just keep getting more and more strange. Even without an official diagnosis, they started treating it and I can do more than I could a few months ago, including doing some sort of exercise every day. I hope to keep up the momentum of that success this year.

Since I’m home-bound now most of the time and creating a permanent indentation in my couch, I really savor moments spent with family, friends, my husband. I am more present than I’ve ever been in my life and that has given me real joy. I’ve stopped taking on things I am not physically able to do with the idea that “things will just eventually get better and I’ll be able to do it” and instead started thinking about living a life within my physical limitations. The process of attaining these gifts was brutal but in many ways it was worth it.

The best gift 2014 gave me by far is acceptance. I spent a lot of energy the last few years hiding my illness, feeling shame and guilt, and fighting it. This had a predictable outcome of only making me worse. I am no longer fighting it so hard and resisting every change and every low. I truly learned how to get over it. I no longer feel the need to explain, apologize, or justify, even with my doctors. I no longer have the energy to do this anymore and it is emancipating as hell. I am what I am so take it or leave it. I want to scream from the mountaintop “Screw it! Whatever! I don’t care!” Then sip some tea and go back to lying down.

I don’t have any resolutions, just a few goals. I really hope to reclaim some of my independence that I have lost over the last year (including driving), conjure more creative output (maybe even some recording), and keep working toward acceptance. (And maybe, just maybe make more progress with diagnoses). I hope to get back to being in tune with the world again. 

I hope that you are also able to celebrate everything you have overcome and achieved this year and I wish you all the best in attaining your goals. I wish you good health, lots of rest, tons of chocolate, and genuine joy.

Thanks for being part of this journey :)

This song by one of my favorite artists perfectly sums up my year. Not sure how Tori Amos managed to tell my story way back in 2007.

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