The First Year

(October 1988 to December 1989) What a whirlwind the hospital had been. People scurrying everywhere. Nurses in and out. A constant cascade of roommates who came in the middle of the night and disappeared within days.  Then nothing when they withdrew the IV needle and quickly discharged me.

Back home to an upper flat. How will I manage the stairs? Will I ever be able to get out of here and get back to my life? It was now October. The weather was changing and so had my life. I’d called the University and took an incomplete in all my classes.

I was scheduled for a five day dose of oral prednisone and told this would keep me weak. And it sure did. Each day I’d wake to the same weakness. I could barely make it from my bedroom to the living room couch. From there, huddled under my quilt, I’d look out the window onto Fredrick Street two blocks from the UWM Union. Students walked by to and from class all day. No one saw me. No one knew I saw them. It was like I didn’t even exist.

Friends and family had called and were there to help with various things like laundry and grocery shopping. But the rest was up to me. I was sharing this flat with a stranger. I’d just moved in the month before to this apartment very near the UWM campus and then went to the hospital. My roommate was disabled so she was around all the time. At least I wasn’t completely alone.

Once the oral prednisone was done I began to feel stronger. Finally I decided to give it a try. The first day I walked down the stairs and out the door. I stood on the front porch for a few minutes. Back upstairs. Exhausted. The next day, the same path only this time I went down to the sidewalk. Next day, I walked to the corner which qualifies as half a block. Next day around the block. The next week I walked ten blocks.

Each day my strength improved and it felt like a miracle. Too good to be true. I stood in awe, not believing that I’d walked all the way from my apartment to the classroom building across campus. By the first of the year I was back in class with a full load as well as working on making up my incompletes. I returned to work and class and thought I’d “recovered.”

That spring, the symptoms started again. I’d been overdoing it. Too cocky about my recovery. I took another leave from work and continued with studies. By summer, I finally quit the job and took a loan so I could finish school. I referred myself to the Division of Vocational Rehabilitation.

I had to present them with proof that a master’s degree would open doors to administrative positions which were desk jobs. I knew I needed to have a sedentary job away from the physical hustle and bustle of most social work case management positions.

Each Sunday I scoured the papers and cut out all the jobs that were administrative and that required a master’s degree. This effort was successful and the DVR paid for my last semester of tuition and books; then when I graduated and got a new job they gave me a generous clothing allowance.

I graduated on schedule in two years flat, ending 1989 with a master’s degree, a new job and hopes for a new life. By this time I was in full remission. Each day I’d wake and first thing, I’d take a full inventory of my body. I’d check what kind of symptoms I had, did I feel tired or rested. Then I’d plan my day. Memories of those dreary days in the hospital and trapped at home right after discharge began to fade.

But I knew it wasn’t over. The journey was just beginning. I was determined to have as normal a life as possible. But I also knew I had to take care of myself. That daily inventory continued and I had to make many adjustments. Instead of going to work and then out in the evening, I’d plan outings on weekends. Stay within reasonable parameters, I told myself over and over.

This whole experience put life in perspective. What’s really important? What battles are worth fighting? When it comes right down to it, believe me, there weren’t many that are worth it. And it really made sense to think of one day at a time.  In January, 1990  I began a new job with a new perspective. And I fully accepted that I had to drag this chronic illness wherever I was going.

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