Image by [myki] via Flickr
As part of the Social Security disability paperwork I needed to complete last month, I reviewed my old calendars to get the dates of previous medical appointments. I noticed that, in previous years, I managed to get out of the house more then than I do currently. Reviewing my calendars turned out to be a graphic reminder of the fact that to go out more, I need help.
Up until October 2008, I had that extra help from my youngest sister who lives a mile from my house. As a student, she had more free time and a much more flexible schedule than my husband who works full time or my best friend who lives 45 minutes away from me. The main assistance she provided me was transportation to and from appointments and outings. From the looks of my old calendars, I really relied on her to take me to a lot of places, including medical appointments, support sessions and social activities.
I can clearly see the things I had to give up when she decided she could not help me anymore. I needed to give up the monthly fibromyalgia and chronic pain support group that was outside my comfortable driving distance. I had to give up the monthly book group I enjoyed but felt too drained afterward to be able to safely drive home. I had to accept that I could only manage at most two outings in a good week and only if they were 1) in the afternoon, 2) within my comfortable driving radius and 3) at least one day apart from each other.
In considering transportation alternatives, I also realized that part of what helped me do these extra things was the immediacy of her help. My sister waited with me when she drove me to these activities and was ready to leave when I was done. Not so with para-transit. I have to be ready earlier and wait around longer to get my ride to and from my appointments. Sitting for long periods of time waiting, enduring a bumpy ride in a poorly air-conditioned vehicle and the stress of wondering if they are going to show up on time (or at all) was too much for me. After trying this a few times, I came to the conclusion that this doesn't work for me.
Better to drive myself in my own comfortable, air-conditioned car than rely on para-transit. I can escape back home to a reclined chair or bed much more quickly if I drive myself. And at least I can lay down and rest in my car if I am too tired to drive home right away...
I won't lie. I do miss the days I got around much more. I also know that I must live in the present and deal with the cards currently in my hand. My sister made a decision to stop helping me and my only choice was to accept her decision and move on. Like a lot of things about living with chronic illness, there is nothing I can do to change things that are out of my control. Which makes me think of a Don Henley song, The Boys of Summer and these lyrics:
A little voice inside my head said,
"Don't look back, you can never look back."
I thought I knew what love was--
What did I know?
Those days are gone forever;
I should just let them go, but...
If only my Social Security check could really pay for all the help I truly need to be my most functional in my life with chronic illness. Because what I really need is the funds to pay for a personal assistant. Sadly, I know this is not going to happen anytime soon.
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