My Life Affected By Disability

 

So here I was. Twenty-five, mother of two, newly divorced in a new location, a big city. I had little money, no job, no work clothes, no work experience except as a wife and mother, and a college degree -- almost. My parents said I could move in with them, but I did not think that would work out. I did not want to be dependent and I did not want to be a burden. It was time to start fresh.

I found a job as a bank teller. Not too much money, but the hours were good for the boys. They were accustomed to having me around all the time. I did not want them to be suddenly thrust into full-time day care. Being a bank teller meant I had regular hours, no overtime, and two early days each week. This would work for now.

I called the dean of the School of Communications at the University of Texas where I was oh-so-close to graduating before my husband and I moved. Yes, he remembered me and was familiar with my work. I had completed all of the major requirements, so I could finish my degree by taking only a few correspondence courses.

We had our fresh start:

• * Banking for me, Greenville Christian Child Care Center for the boys early in the day.
• * Chores, family time, exploring the city and swimming, a lot of swimming -- this was Texas, and it was hot -- in the afternoon and evening.
• * My study time when the boys were in bed.
• * Visits to my parents every month - they lived only 100 miles away - and the boys could stat sometimes.

Yes, this would work for now.

The boys got older, as boys tend to do, growing from toddlers to kids. I finished my degree. My graduation ceremony was opening the mail the day I received my diploma. It was time to get a real job.

The real job came, I bought a small house, boys had scouts, soccer leagues, and other growing up stuff. Then I bought a bigger house with the idea that I would stay there at least until both boys graduated from high school. There was no hurry to leave after that, but I could when I had a place to go. I entered the University of Texas at Dallas to get a Master's in marketing. We could study together, and maybe graduate at the same time. I always tried to get the boys to think about their future. What did they want to do? What did they need to do to be prepared? I tried to expose them to many different experiences to help them find interests. My goal was to get them started. After that, I would decide about the rest of my future.

We had been independent and a burden to no one.  We had fun, had troubles, worked hard, were lazy, went anywhere, any time we wanted to go. But then the rules changed.

As we were growing up together, through jobs and sports and school and moving, little episodes interrupted us for short periods. I had problems with walking, weakness, vision, but they were short episodes, and then they went away. I had medical tests, but no answers. When the problem was gone, there was no problem, and we continued with our lives.

The episodes became more frequent and more serious. I finally found the right doctor. Actually, a physical therapist saw me walk, and she took me to the doctor who gave my episodes a name - multiple sclerosis. I went to work every day with my cane and my new condition. As my MS symptoms evolved from an episodic nuisance to full-blown disability, the idea of remaining independent did not clarify so much as wither. A co-worker asked me how long I planned to work. I really hadn't planned to stop. But things were different now.

I could no longer climb the stairs, but the boys were almost out of school anyway. I sold the house and moved into a small rental house. I telecommuted as long as I could before taking a disability retirement.

Disability is an undeniable part of my everyday life. How have I been affected?

First, I have to remember how lucky I am. Although MS kept visiting in my adult life, it did not stop me from working until my boys were able to care for themselves. I am lucky that it was not a sudden drastic change from ability to disability; it eased into my life allowing me to adjust to each new restriction. I am lucky that my good friend was with me when I realized I could no longer live alone, so I have a friend, a sweetheart, who is my caregiver. I am lucky to have had the chances I already had.

There are many things I can no longer do, but I am learning there are some things I can still do. As I travel along my learning journey, I am disappointed with failures and delighted with successes. There are successes; not many, but they are there. I have learned I can still do some things, but it takes longer and more effort. I am still learning about possibilities.

I started fresh before; surely I can do it again.  There are new restrictions and difficulties, but there were problems before. I have learned to accept help; I need to learn to ask for help. I find I can still smile and laugh and love.