I used to love to enthrall my history students with tales of the Assyrians. They would flay their victims while they were alive and parade them in cages to the next village on their map of conquest in order to frighten their adversaries into submission. It’s horrible, of course, but so many thousands of years removed that to speak of it in dramatic and compelling ways added to the suspense and engaged my always skeptical history audience.
My career was always the most important thing to me. From the days of a child playing “business woman” with my Barbie case, to actually working as a professional I enjoyed every moment–even the maddening ones. The schedule, structure, and promise of new projects made me happy as a clam. My enthusiasm was often interpreted by the old guard as aggressive and adversarial, but that really never mattered to me. If I was given a mandate I made it so. And I made it well.
When I started my position as Curator of Manuscripts and University Archivist at Columbia University’s Rare Book & Manuscript Library in October of 2006, I was taken back at first by the scale of the projects that were ahead of me. But I had the unique and enviable position of remaking the operations of one of the nations largest manuscript repositories and bringing it into the 21st century. Along with a team of competent professionals I was able to do this and it remained perhaps the happiest eight years of my life (counting the two previous years as University Archivist). Ten years of promise and downright fun. Hard and demanding work that brought about the best and the worst in me at times. But I did it.
I had ten years worth of plans and projects floating about in my head when cancer struck in 2012. At first it seemed like I would be able to manage it, but pain from bone tumors and the malaise that came from medications affected everything about me. My memory was shot. Sometimes the drugs for the back pain made me feel like I had been smoking pot during school lunch period and decisions were hard to make. Then I had so much pain that I needed to take time away. Lots of time. I fought so hard for a year to come back. My vindictive boss was trying to dump me, but I persevered in part because I knew if I were to go on disability, I had one more year until my birthday to do it. Perhaps others didn’t see it, but it felt as if I was clawing up a mountain with my fingertips. I cried, worked in pain, and tried as hard as a could. However, in December of 2014 I realized that I couldn’t do it anymore. And I accessed the generous disability insurance from my employer (and working on the government end, too).
The loss of a 25 year career in special collections and teaching has torn at my very soul. I thought I could be alright with it and move along, find other things to keep me busy, but it hasn’t been that easy. I miss the influence I had. I mourn the outlet for creative energies that are always flowing in my brain. I miss the schedule, the travel, and the satisfaction of a job well done. Oh, and how I miss my students! In a very real sense I lost my sense of self.
One of my friends who is in a similar position told me once that what frustrates her is not being needed. She could sing or sleep all day and no one would notice or care. And that is how I feel. Useless. Like the bag of clothes pins I have and no line on which to pin them.
Friends have left as well. There seems to be a two year limit on friendship when you have a chronic condition like this. I don’t know why, but with former colleagues I’m sure they don’t know what to say, since the biggest topic we talked about was work related. But, believe me, I wouldn’t have spent my time with them had I not thought they were great people to begin with. I’d love to hear stories about the workplace. I understand in a real way, but it would be a way to feel connected again.
I’ve seen the eye rolls when I tell people I’m not the person I used to be. Well, how would they know. I’ve lost 50 pounds and I look completely normal. I look great! But the fact is that I am not. Fuck you, man. I lost weight by not eating, no planned intent. And I’m jealous of these “lifers” who can work, raise their kids, jump back and forth shopping and whatever. When is it my turn to feel okay enough to do stuff like this? Yet, I know it’s not easy for them either. Whether it’s numbness of their chest walls, medication side effects, etc., they don’t have it easy. It just looks that way. In point of fact, we’re on the same lousy trajectory, just in different ways.
And disability really sucks. When it’s super hot I have to stay in because of my hydration issues–can’t seem to stay hydrated since I was diagnosed with renal insufficiency on top of this fucking cancer. When I have a lot of pain in my back I can’t really go anywhere, so it’s in the apartment with my feline buddies. I read, color, write, knit, and watch movies, but my brain feels like mush and without real purpose I feel defeated.
I’d love to spend every day in a museum, but I’m often just too tired or my stamina is just low. I think the time I felt most defeated was when I was hit by vomiting the water I had drunk just minutes before in front of a grade school when kids were coming to class. That sucked. Oh, and now I’m anemic. Fucking anemic. Another pill. Another reason for malaise and feeling less than normal. Oy veh. Nothing is like it was.
Disability has left me feeling skinned alive. All of my professional talents and desires have been stripped from my very person; from my very soul. It’s horrifying. And it’s gotten to the point that I have to seek out help to try and come to terms with this overwhelming loss. For it is a profound loss, a death if you will. And I don’t know if I can ever accept that this productive, rich, and enjoyable part of my life that I treasured so much is gone forever.
I envy anyone who is on disability and enjoying it. I don’t think I ever shall, not when I know that there was so much more I could have achieved and contributed. Not when I’ve been flayed professionally for all to see.