I think the worst part of having this restrictive disability is feeling useless. I am lucky enough to have survived the other horrible parts like the phase where I thought I was going crazy, the stage where I believed doctors who labeled me with somatoform disorder, and the many times where I explained this illness to my friends. I got through all that and more importantly, a lot of physical recovery. I have come out the other side and created a life for myself that is pretty darn good. But it is limited; I have not been able to work outside my home since 1997.
This was, obviously, not the plan. Nobody plans for an invisible debilitating chronic illness, just like nobody expects the Spanish Inquisition. The plan, all those years ago, was to teach high school physics. I was working on my PhD in the field and had used tutoring as an income for years before I got sick. So I knew teaching was something I was good at it and enjoyed. I had planned for the years it would take to pay back my school loans, the travel I would do before I had kids, the time I would take off from work to be home with these imaginary kids, and more. I really thought I would be so in control, I could dictate the exact years this all happened. None of that happened. You can read what did happen in my backstory.
I survived an awful MCS health crisis and here I am 17 years later, with two children and some carefully planned travel under my belt. But still no paycheck. However, I had a very healthy 2014 summer and my kids are old enough now that I thought I might ease my toes into the workplace water. After repeated failures (hitting my head against a brick wall type failures) I knew better than to go looking for a full time teaching job. In fact, each time I have started the certification process over the past 13 years, some major health crisis has come up, and now the whole idea feels jinxed. But I thought if I could slowly, over the next few years, build up a tutoring business, then I would still have some flexibility and be in charge of my schedule if my health became a problem. I live in a small community and have volunteered at the elementary school for years so I only had to mention it to a few other moms before my starter roster was filled with kids. Here’s where I went too big; I tried to work at our local community center rather than in my home. The center is about a half mile away from my home so it’s easy to get to. Families who don’t know me personally will still find the center a safe neutral spot to meet. The center is willing to not charge me for room rental and instead I will do some extra volunteer work for them. It’s all so good except that the excercise room is close to the room available for my tutoring. The outgassing rubber from most gym equipment is one of my worst triggers. Six months ago I would have been too cautious to even try walking past it, but I have had so many little exposure victories that I gave it a try. Like I had forgotten everything I ever learned about limbic kindling and sensitization.
You know the drill, at first I just had a little headache and some foggy brain. Then I noticed I was exhausted and achy the next day. Then my eyes became inflamed and then I realized I had been living with heart palpitations for two straight weeks. But I was still not willing to give up the dream, something I have even written about before in Lingering Denial, and apparently will never learn. Last week, I wore my mask into the center for the first time. I took it off in the room to actually work with the kids but I wore it everywhere else. So it was the first time I explained my situation to the receptionist and the assistant who unlocks my room for me everytime. They were lovely; they offered to make sure the kids get to me so I don’t have to keep walking past the bad room with each new kid. They showed me the emergency exit that I can use to leave when I am done so there is one less bad walk by. Yet even with these measures in place, at my last tutoring session I lost my voice before I could finish teaching the kid how to do greatest common factors. Duh. Possibly my mushy exposed brain has not been problem solving at its top potential because the correct solution is to NOT work in the community center whose indoor air quality makes me ill.
It seems like an obvious decision; stop working there. It also seems like one with little consequence; I was only working with three students and they could come to my house instead. But for a while there it had felt so very good to think to myself, “ I am going to work today. I am leaving my house and going out into the world and I will have a positive impact on somebody’s life.” That simple notion was so powerfully enticing that it was hard work to give it up. I began with a good cry. Even though I don’t cry very often, I am a firm believer in Isak Dinesen’s quote “The cure for anything is salt water – sweat, tears, or the sea.” Then I wrote a very maudlin journal entry which I will now share with you. “I just wish that I would give up. I mean obviously what I really wish is that I could work and travel. That’s what I want. But if not that, I wish I would just stop trying because the disappointment is exhausting. Every setback is physically a drain, yes, but also eats away at whatever little ego I’ve got left. There is just less of me every time.”
That was my pity party. I usually get bored with it fairly quickly and move on. If my sister Friday were here she would shout, in the style of Sherlock Holmes as played by Benedict Cumberbatch “Dull. Tedious. Leaving!”, and she would be right. I have left self pity and moved onto anger now. In fact, I’d like to use a little word coined my niece, I feel pissapointed. I have also hugged my kids and walked my beach and complained to my incredibly patient husband and I feel like maybe there is more of me again. That allowed me to take some action. I talked to the families of my tutoring students and they will happily come to my house. I talked to the community center staff and let them know that while I appreciate their help, the indoor air quality will not work for me and that means it is dangerous for the kids there too. I have made a list of potential tutoring workplaces in town that I will check out in a few weeks when my health has stabilised. You know this drill too; we get up, dust ourselves off, and try again in a different direction.