The paperwork is in. Fifty pages compiled by four people and faxed to two insurance companies. Disability. I didn’t want to do it. Indeed, for two years I fought hard to crawl my way back to who I was.
I can hardly function in the morning. I wake up at 5:00 am to take pain my medication, then go back to bed as it works its magic. When I walk up the bloody hill to Broadway, I can feel the hole in my sacrum. My right hip burns, making walking really cumbersome at times. I have pain in my groin that makes sitting, getting up, and walking very difficult and painful. Sometimes one or more symptoms take a vacation and I take advantage of that day, but after functioning for one day, I am usually down for the next two. I need a cane most days and I feel very self-conscious of it. When I would return to the office, I walked slow and after a few trips to the stacks sometimes I could hardly walk. I often closed the door and just cried. Over the course of 27 months, there was only one week where I worked five consecutive days. Defeated.
I tried working from home one or two days a week, but the nature of my position made that very difficult. I could no longer teach–which truly broke my heart. Plus, if pain was bad on a particular day, I was unable to function. My colleagues were upset. I anticipated that, though not the indifference I faced when I tried to transition back into the office in September. The fact was, I was no longer needed. It’s funny how the first 12 months of a cancer diagnosis, some people are really supportive, even those on the margins. If you’re still alive after that point, you become the background noise of life. They may still care. but concern is replaced by anger. One colleague basically told me that I had to earn back her respect. I was floored, though I didn’t show it. I understood the frustration of being down one staff member, but I had to earn back her respect? I didn’t steal anything, undermine a colleague, or sideswipe anyone to advance. Because of what cancer did to me, I had to earn back her respect. I was really hurt. And I had just bought a new suit.
The reality in all of this is that cancer isn’t killing me–my scans are relatively stable. I have no organ progression or failure. Instead it has begun to disable me through pain. And the first casualty? My professional life. A life that has, for twenty years, been 90% of my personal identity. Who I am.
Meanwhile, radiation stabilized the sacrum and L4, with some lasting damage that is painful. But at least scans are stable on the whole. In August the primary tumor in my breast–that had shrunk from 4 cm to just under 1 cm–began to grow again. But this time it expressed itself as a lump that was protruding instead of growing inward. As the lump grew over five months it changed colors. As I write this, the tumor fits into the palm of my hand and turned from a light pink to a dark red/purple. The skin is stretched so tight, it looks as if it will burst.
My oncologist and me had observed this growth for four months. Finally a new form of treatment was chosen: Faslodex. It looks as if things may have improved since the lump no longer hurts, but it has affected the pain level. Not as bad as Letrozole (the joint killer). Instead it is a low-level systemic pain that exacerbates the lumbar/sacral pain.
After the New Year, I wrote to inform my supervisor and closest colleague that I would have to go on disability. It was very difficult, but I began to look at this as an opportunity to move in a different direction. Spend more time with advocacy and do some serious writing. While all of this is true, the optimistic view to a new future was cover for the real intense grief that I was trying to deny.
Yesterday I met with the oncologist and a social worker to talk about the final paperwork before it was faxed. The social worker asked me about my work. “What did you do?” And I proudly told her that “I was the University Archivist at Big University.” And then I started to sob.
Was. I was.
I worked all of my life for the opportunity that I secured ten years ago. I went to college about 8 years after my friends had gone. I always felt like I was behind, and to that end I worked twice as hard to succeed. I worked two and three jobs to pay for tuition and still maintained a 3.8 GPA. Between ability and luck, I secured positions at influential institutions and worked with some of the most talented exhibit designers and archivists in the business. Eventually I moved to New York and secured my dream job. After two years I was promoted and worked 50-60 hours a week. The repository was loaded with talent, rare books, papers, and records. But it was stuck in the 1960s. My mandate was to bring it into the 21st century. Along with a great staff, I did it. I wasn’t liked by some because of it, but I had been hired to do a job and I did it.
Twenty years of experience as a professional archivist and educator. A job for which I was thankful and privileged to have. A job where I made a lasting difference.
My career. Gone. I was.
Sure, I’ll survive. If all goes well, I have disability insurance that will provide well for me until retirement age. But I’ll have to move back to the Philadelphia area since it is way cheaper than New York City. I’ll keep my physicians, so I’ll travel to NYC every month. I’ll become more involved in advocacy, do some serious writing, and travel. However, I imagine there will always be a void that will never be filled.
I was. Was.
