Sunday, 12 May 2013

Shadows and light

MS is scary stuff. You can build up a wall of science and research to hide behind, equip yourself with the newest disease-modifying drugs, a good diet, and exercise, and try to safeguard yourself with objectivity, but when faced with MS symptoms, it's still scary shit.
The disease itself is terrifying - knowing my body is chewing on its own brain and spine isn't exactly comforting. Then I look at the available treatments and the lists of side effects make me want to curl into a tiny ball…around a frosty beverage…and take a nap. As much as I try to keep a positive attitude about having MS, sometimes an MS moment breaks that confidence and all that fear comes rushing in.
To paraphrase a well known MS advocate, we talk about "lesions", and "myelin", and "white matter", and "gray matter", but when you pull back all of the clinical terminology, you're left with "holes in your brain". Seriously people, there are holes in my fricken' brain! WTF?
One of the first anatomy lessons you learn as a kid in school is that your brain is the control centre - it's the CEO, the CIO, and the COO all in one. It's where we store our knowledge and where we safely tuck our personalities. Knowing that an unknown entity can eat away at the very root of what makes me me is disconcerting.
Once you receive a diagnosis, your career can be extinguished, your relationships can be dashed, and your dreams and expectations? Good luck maintaining those! Your initial annoying symptoms become a looming harbinger of what may come. 
So, how do people not crumble under the mountain of MS worries? Well, just like the course of MS in each person, our reactions differ as well. Some people run like the wind from the doctor's office, leaving behind all documents and results that may suggest there's Something Big wrong. They ostrich their heads into the sand and pretend everything is Just Fine. Like with everything, some people turn to religion. Others immerse themselves in science. The remainder balance it out with a little knowledge of the realities and try to just keep swimming.
All of us learn to take it as it comes. We develop a dark humour about it - injections, death, disease. We start fundraising to raise awareness or maybe to make ourselves feel like we're Doing Something. Anything. We become "People with MS" - a tangentially-connected motley crew who can nod knowingly when people talk about pitting or fatigue. We even have a fancy little abbreviation - PwMS. We adapt. Sometimes we flourish. We find ways to work with the changing circumstances. We develop ways to tell our friends and families that we can't do things because we're really fucking tired, as hard as it can be to admit sometimes. I tell Nance I'm out of spoons when I'm getting to the end of my energy for shopping. Those potentially extinguished careers, relationships and dreams? Handle them with care. We learn to communicate and adapt or we lose what's important.
Mercifully, the anticipation of what is to come is worse than the reality. My last MRI went swimmingly. The initial numbness I had went away. I'm still just me.
I was laid off not long after being diagnosed. The fear of never finding work again was very real but here I am with deadlines and responsibilities. That said, if anyone knows of technical editor/SME contracts, drop me a line. The freedom from the day in/day out allowed me to rediscover the person that I am. I have tried to connect or reconnect with parts of my personality that those holes have not touched. Note: I am not a great artist, but I have tried.  
If I knew when I was 20 that I'd near 40 with multiple sclerosis, I'd have been horrified. The idea that some day I may need a wheelchair scares the dickens out of me but then I see this kid racing up and down the road daily - zooming along in his wheelchair - off to buy lettuce and milk and whatever he needs. Sometimes things that burden us can also enlighten us and free us. Don't get me wrong, I don't think every dark cloud has that platinum lining, but some of them do. 
I've never understood the religious concept of being reborn but I do feel like the older I get, the more I drop all pretense at superficiality and end up saying, doing, and writing more truthful things. Maybe pretense is something that's falling out of those holes. I have found a greater understanding of who I am and I am honestly quite embarrassed by the unimportant things I used to worry or care about. 
I'm still afraid and pissed off when faced with MS symptoms but I'm still here and I think I'm developing a better me.

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