Tuesday, September 21, 2010

Weight Part 11

A week ago, I came to the realization that I don't want to work this hard any more. And that saying that out loud is scary. That was sort of as far as I got before I had to shut down the whole line of thought and wait until I saw Ellen again today.

In the meantime, I've looked at housing prices in Vermont and New Hampshire, while also knowing that there is no way I have the energy to pack up and move myself again. I looked at flights to go see my friend Jan in Florida but there weren't any non-stop flights, and I couldn't figure out dates, so I bagged it. I fantasized a lot about how I would do things differently if I could start over again -- I'd stay at the Attorney General's Office, have a pension, have vacation time, and have a really interesting job that would stay at the office when I left. And I ran numbers to see how long I could go without working at all, even thinking for the first time about whether I could get disability (which I couldn't right now since on paper I'm actually in pretty good shape except for the 15 prescription meds I have to take every day). I've felt sad and trapped and confused and angry, and I haven't really understood why.

There simply is no middle ground in my life. I want to be rescued, but that's long gone -- perhaps I should have been helped more when I was younger, but now I'm a 53 year old woman and nobody's going to rescue me. I'm angry that nobody -- the Advocacy for Patients Board, my father, a handsome stranger -- will bail me out of this fix I'm in.

And when I get angry, I go to the other extreme -- not only do I not want to be rescued, but I become fiercely independent and must do everything all on my own. I take the anger that comes from feeling like I'm totally alone in this and use it as energy to wall off the rest of the world and feel trapped because I have to do it all alone.

I don't seem to get that there's a middle-ground between being rescued and doing things completely on my own. Like asking for help, getting people to agree to take steps that would make things better, and then counting on them to follow through. If I could ask for help, I could never really rely on it. Nobody ever comes through the way they say they will, right? That's been my experience.

But the truth is that I have a problem. Advocacy for Patients has a problem. We've grown as much as we can grow and have me do everything on my own. I no longer can do all the work. I can't raise the money and give the speeches and work the cases and write the books and manage this blog and the Facebook page and master health reform and comment on regulations and be a presence in Connecticut public policy and do the accounting and payroll and ... and ... and .... I can't do it. But really, I don't want to drive myself into the ground, either. I want to swim for an hour instead of 1/2 hour. I want to have energy to have dinner with friends. I want a life.

And really, I'm so strung out and exhausted that I also can't figure it all out. Can we afford to move and hire Nicole full-time? That means raising somewhere between $60 and 80,000 more next year than we did this year and last. I have no reason to believe that I am capable of doing that. I'm not sure if anybody could do that for this organization. We need another "angel," another sponsor who loves us like Mike McCready and his wife do. I've written a zillion grants. It's just not happening. We aren't legal services because we don't go to court, we aren't health care because we don't have a clinical component, we are too small for the national foundations, we are too national for the Connecticut foundations -- we just don't fit the regular categories. If we moved to the Law School as I'd like to do, we'd seem bigger to funders and that would help, I think. But I don't know where to get another $60,000. Around this time of year, I feel lucky if we meet our annual budget. This year, we had the NIH grant and a grant to build our IVIg Patient Resource Center, but that's not going to happen again next year. We do hope to get another grant to follow up on our NIH study, but who knows how long that will take? Next year feels even more daunting than this one, and that's without an extra load of debt.

So we can move -- I'm pretty sure we can afford that -- and I can keep having student interns (hopefully). I can even probably afford a part-time law student like Nicole is now. But can I afford Nicole full-time? I promised her an answer after Saturday's Board meeting, and so I have to figure this out.

But I think this is what Ellen was trying to tell me today: I don't have to figure it out alone. While some of the Board are pretty certainly not going to help raise money, there is the amazing Laura T., who may be the only thing standing between me and a total nervous breakdown!!! She's a marketing whiz and she has a ton of ideas. I feel funny about leaning so heavily on her, but I think she'd smack me if she heard me say that. The rest of the Board should figure out some way to help, too.

The worst thing that happens is that I pull back. I stop writing comments on regulations and other things that I feel are important, but not essential to providing services to the people who need us. And we stay in my house. And I keep recruiting law students as interns so at least there's somebody to go to the library for me.

But this is the wrong answer. It can't be either I get some help or I do it alone. Doing it alone has to be ruled out as an option. I think that's what Ellen was trying to tell me today. I need help. Nobody runs an organization of this size alone. I am already doing too much, and I am paying such a price for it that I can't even decide when to take a vacation because I'm too tired to decide anything. Forget the big rescue; forget doing it alone. Laura's supposed to be chairing a marketing committee. How about figuring out who else is on that committee and making them do some work too?

I'm fried, and I don't have any answers and I'm tired of thinking. I'm going to figure this out, but not today. Step one, though, must be asking for help. I know I can't do it alone. And please -- I don't need ideas. The last thing I need is a longer list of things to do. I need help.

Anybody want to join the Advocacy for Patients Board?!!! Jennifer


  1. Wish I wasn't so far away from you - would love to give you a bear hug! in real life - have a cyber ((((HUG)))) until I can give you one irl again.

  2. Darling Jen....you have the weight of the world on you...I can hardly breathe reading this, yet you live it.
    If you had one day for you, what would that fantasy day look like for you?
    It is how I began transforming my life. I was too overwhelmed, feeling too stuck to even begin to think...the human tsunami of my life just continued to wash over me...until someone asked me, "what is your dream day? what would that look like to you?"
    And then I made that one day a reality.
    I am sure I will not be able to figure out how to post this, save anonymously...but you know it's me :) xoPatti

  3. Thanks, Pat. I think I would need to spend a couple/few weeks in bed resting up before I could think about a dream day that involved anything other than sleep! J