Posted by: gljcm2 | June 10, 2001

The Roller Coaster Ride of Disabilities

Disabilities come in many forms – physical, mental, emotional, psychological – but no matter the form they take, they affect every aspect of a person’s life.

HHT is a blood vessel disorder, one that can worsen with age as has been the case for me. I worked happily for 20 years before it finally impacted my life so strongly that I was unable to work. Because the bleeding from HHT causes severe anemia, the individual experiences growing fatigue over a period of time. As they become more and more unable to complete the tasks they normally would, or deal with the daily decisions and interactions that at one time were just part of every day activities, it is very easy to feel a real sense of frustration. This can eventually lead to strong feelings of depression, although in the case of anemics, possible depression is not supposed to be treated until 6 months of iron therapy has taken place. The symptoms of anemia and depression are so similar an effort is made to address the anemia first. However, just the inability to function as required is enough to leave the average person feeling very depressed, although this may not be in a clinical sense.

And thus began my roller coaster ride. One morning I went to school, having felt progressively tired for weeks. That afternoon a single incident occured which proved to be my breaking point. I met with my principal at the break and told him “I couldn’t do this anymore”. Of course I did not mean “forever”… just that I knew I was no longer being the teacher I had to be, to feel good in my classroom. This was a very painful time for me, as teaching had long been my biggest passion.

I left school that day believing I would be back after the weekend. Because it was Thanksgiving, I would have a total of five days off — surely enough to be back on my feet. But, no, the wild ride had begun and I soon learned that I could not even begin to consider returning after the weekend. I was too exhausted in every part of my body. A few days later though I had a good day… one where I immediately thought, “YES, I can go back to work on Monday”… and thus began a cycle of weeks, that turned into months, whereby I believed I was ready to return to my classroom only to find that the feeling of strength lasted a day at most.

The emotional ups and downs at this time in the newly disabled person’s life are devastating. If the desire to return to work is there, the slightest improvement lends a hope that can be dashed very quickly. My initial week of being off turned into a total of 6 months and even when I returned it was only on a part time basis. But I felt wonderful again, back in my niche. Back where I knew I belonged! And I continued to function for almost a year before I found myself off work once again. Two surgeries had not improved my situation; in fact, I felt at times they had made me worse. My last one in June of 99 was done when I was extremely anemic and by the time the summer was over, I was no better. As a result school started without me in September.

When one first goes off on sick leave, there is a belief and a hope they will be back soon. The second time, one is more aware of reality. While you know more of what to expect, the realization that your recovery didn’t last hangs over your head. The fall term at school that year was a very difficult one for me. I could not enter the school without dissolving into tears. Speaking with staff was important to me and yet, I felt guilty for my emotions which seemed to hang out all over. My life at home consisted of sleeping, going on the computer and more sleeping. There seemed to be no purpose.. nothing that could give me the energy that I had once had. We had ruled out any further laser surgeries — my condition seemed worse after them. And there were no other alternatives!

Finally in October after much rest, I decided to volunteer for a crisis line. The training while exhausting was exciting and in an area that I was most interested in learning about. Sessions on protocol, domestic violence, suicide, mental illness, sexual assault, and addictions were held to prepare us to work on an distress/crisis phone line. It was my first foray being out with people I’d not known before and my first opportunity to learn something new that I could use to help other people since going off work.

I began working for the crisis line in December, 1999 and it was the perfect fit for me. Calls were answered at home, allowing me to sleep between calls so long as I could wake quickly and “make sense”. We were expected to take a total of two twelve hour shifts per month, but I was soon asking if I could take a few more. I was feeling alive again. I had contact with people. I was doing something worthwhile. And those conversations with people in need left me so aware of how very fortunate I was! A little reality check on a regular basis was great therapy!

And it soon became my lifeline!

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