Of MCS and Taking Back
As I explained to someone recently, my life since getting sick seems to have yearly themes. Maybe it always has and I am only now aware of the themes because the MCS makes so many things so much more obvious. Either way, I have themes and I have been thinking about them of late.
The year before I was diagnosed was the year of the “almost-flue” because I would get flue-like symptoms on a near monthly basis, cycle through feeling miserable, feel better for a bit, never get quite sick enough to merit an intervention or make any sense to my doctor, and then the whole thing would start over again.
The first year after I was diagnosed I spent sleeping, watching dvds of my favorite sci-fi shows and sleeping, pretty much in that order. I did start working on the dolls, though to tell you the truth, I have no idea in hind sight how the heck I managed that. I had no energy, no mental capacity and nothing resembling health. I still managed to produce the first five Oshun dolls and the first nine Oya dolls. The human mind and body are very odd.
Year two was all about learning new boundaries. This was the year I really got it that I couldn’t go places. The year before I had been doing a lot of dumb stuff like going to museums and movies and the Home Depot and getting sick. Dumb. Year two I owned up to the fact that all of those places were toxic to me and if I wanted to ever feel even remotely healthy again, I had to stop going to them. I had to accept – and not very gracefully at first I can tell you – that I couldn’t be around a lot of people. Movie theaters are deadly places when you have MCS and I am a huge fan of movies. That was a terrible blow. But realizing I couldn’t go to a museum or see a show again – that hurt like nothing I had ever felt before. I discovered the boundaries of my world and they were a whole lot tighter than I ever imagined.
Discovering those boundaries lead to the anger that was year three and coming face to face with the word “disability” and the reality of being disabled. I spent a lot of time that year wanting my old life back, even though there were plenty of things about it I didn’t like. I had been looking for a change – this just wasn’t the change I had wanted. Mmm… something about be careful what you wish for – you will get it? I had asked the Gods and the Universe for change, and I thought I had been careful in how I had asked and what I had asked for. Getting sick instead meant that I was feeling a whole lot of betrayal as well as anger. That was a really tough year.
So now here I am at year four (with apologies to the person I was talking to recently to whom I said I hadn’t named year four…oops…looks like I missed some time in there, sorry) and its looking like this year may well turn out to be about reclaiming my life.
When I first got sick it felt as though my life was over. There was this crushing weight of both “how could this happen?” and “This will never end”. Over time I’ve become more accustom to the weight of both of those feelings. Now I can ask “will this end?” rather than assume it won’t. Medical technology being what it is, anything is possible. And really, human nature being what it is, anything is possible.
I am in a better place today than I was four years ago. I still live inside a tightly restricted set of boundaries and I still react to the most insane things, but I am better. I can feel the difference, and I have to hold on to that. So, “end” can be a question now instead of an absolute. At the same time, I have been feeling very limited, very trapped by my illness and the restrictions it puts on my life. It had come to seem like options were something other people got to explore. So when people asked me what I wanted for my birthday, or Yule or my husband asked me what I wanted for an anniversary present, I generally shrugged and said “whatever” or pointed them at something cute and shiny that was easy and safe. I didn’t dare ask for anything real. All that changed this April when my husband asked what I wanted for my birthday and I answered, almost without hesitation that I wanted to go see a particular singer in concert. Now on the one hand, this means nothing – it can’t happen. The concerts are an ocean away, which means getting on an airplane – with a crowd of people and their toxic chemicals and are being held in large halls with more people than any doctor is going to allow me to even look at, let alone be near. So no, I’m not going to get to go. But even a month prior it would never have occurred to me to ask. It would never have occurred to me that I should consider the possibility of trying to go, as far fetched as the whole scheme would be. In that one moment I took a part of my life back from my illness.
I can tell you, a month later, I still have NO idea what to do with this information. It rattles around in my head and amazes me. My friends and I have joked about getting me a shiny pink hazmat suit so I can go to concerts and back to Disneyland and do lots of the other things I want to do. It’s totally absurd, and yet… not.
Somehow, someway, in all of this, I have to find ways to live my life.
Back at the start of the year, a friend of mine said to me that “the MCS can’t take much more away from you at this point. So, what do you choose for yourself now?” Those simple words blew me away. Because they are true. This illness has taken the bulk of what it can take from me. What do I choose for myself now? What do I take back? What do I take forward? That I think is the question I will be chewing on all year long.
Tags: healing, health, mcs, personal growth
