Five Years

Five years ago today, I began my work at Advocacy for Patients with Chronic Illness, Inc. I had already incorporated and gotten the tax exemption, but I hadn't told my partners or committed to doing this work full time until March 5, 2005.

I don't know what I was thinking. First, I know I thought it would be easier to get grant money to do what I do. After all, these services are so badly needed and nobody else is doing this -- there had to be foundations that would fund us. Wrong.

I thought I would partner with disease specific organizations like the Crohn's & Colitis Foundation of America, that they would include me and support me. Wrong again. Indeed, they had me train them thinking we would be working together, but I'm a schmuck and they won that round.

I knew there would be a huge need for my services, but I had no idea how bad the need would be. I had no idea how desperate people were. I knew things were hard for me -- the occasional insurance appeal, increasing premiums, employers giving me a hard time because I was sick -- but I never imagined the brutality so many people with chronic illnesses live with. Children -- sick children sent to truancy court! I had no idea.

I thought I could find answers, and although most of the time I do, there are problems for which there are no answers, and they are heart-breaking.

I do not feel accomplished after five years. I feel beaten down and exhausted and impotent. Yes, I do more than most people do. I do a lot. But I don't do enough. I can't There are too many people for whom there are no answers. There are too many people who just need money -- the one thing that's hardest to find.

I thought by now I'd have hired a second lawyer. I do have an assistant, thank goodness, but we don't have a second lawyer and won't any time soon. There's no money.

The world is too hard a place for people like me. I don't feel like celebrating today. I feel like going to bed and staying there for a long time.

I've been doing this for five years, but I'm completely fried. I can't bear the thought of another five. The fatigue overwhelms what should be a sense of accomplishment. I fight for every $50 donation. For foundations, we're either too small or we do work nationally or we're not really legal services because we don't go to court, or we're not in the health care category because we aren't care providers. Because we are unique, we are largely unfunded. Never mind the 1500 cases a year we resolve. That's not big enough for some of the larger foundations to invest in.

Sometimes I feel proud, but not today. Today, I just feel tired. How on earth can i keep this up? Finding answers for people for whom there are no answers other than a little of my time and my undying respect. Raising money in $5 or $50 increments. Begging for help, whether for my organization or for one of our clients. I don't know how much longer I can do this. And of course, with my disabilties, I have no other options.

So today is not a day I celebrate. Today is a day when tears come because I can't figure out where I'm going to get the energy or the money to do this tomorrow. Jennifer