Monday, June 23, 2008


The first person I knew to use a scooter was Mrs. C. at my high school, who retired early from medical necessity right before I was to have taken her courses. But she taught me and a few others after school for a few years, tutoring us as part of a literary team we were on. Under her guidance, I fell in love with the poems of Emily Dickinson and William Blake, among others. We read the Glass Menagerie together, a Tennessee Williams play about a grumpy "crippled" girl. Neither of us had much response to that. Mrs. C. knew about my hip fracture and slow recovery from osteoporosis issues, and she told me about contracting a very severe form of painful arthritis early in college. She would go write poetry by herself in an isolated spot, and I can still picture her doing this. Mrs. C.'s joints and body were deformed by arthritis, and she clearly experienced a lot of pain. My hours with her were short but ever so meaningful, and I hoped she knew how much it meant. I didn't know many people with physical disabilities then, and she was a mentor in more than one way.

The neck fusion is healing up nicely, I can stop wearing the neck brace, and I can drive, which takes care to make sure I turn fully in each direction and pay close attention. Thank goodness for the rear backup camera. Although I don't rely on it alone, it sure helps.

When I say that people with disabilities/health problems shouldn't be praised for progress or recovery that is mostly out of their control, that doesn't mean not celebrating the recovery, the remission, the regain of function. Those should be celebrated. Celebrate with me. But not behind my back, as one acquaintance said to a friend, "that's great! she's not having to use the scooter!" The rheumatologic issues are not something I have control over, and ascribing "success" or "defeating illness" to my efforts and personal responsibility means that I am also responsible for my "failures."

Similarly, why do we praise people for beating cancer? I am certain that research probably shows faith, a positive attitude, and similar psychologic characteristics may be correlated with better recovery, but you have to admit, few are going to beat cancer without surgery and chemo. And there are plenty of good people who die with cancer.

I'd say praise the effort and not the person, but sometimes effort does not produce the desired result but backfires. Sometimes rest is needed instead for recovery. And I have this to add to my vocal critics, those who have berated me and made comparisons between me and people they know with similar and generally milder conditions. Criticism is never an aid to recovery. Celebrate with me when that's possible, support me in my need. I am not someone who gives in. I am someone who does what I need to do to live. I truly don't understand people's upset, even anger, that I use the scooter. I did everything I could, and then I had a choice. Stay home, or use a scooter.

My sacroiliitis is beginning to return at a low level. Right now I celebrate that it's at a low level and doesn't interfere with continuing to increase my activity level. For now I celebrate. But I'm not a failure when body betrays me.


Elizabeth McClung said...

I'll celebrate with you! I'm glad the neck is healing! I am glad you have returning of function! I am glad that the insurance people have return to thier den to brood.

By the by, a study showed that happy positive people who focused thier energy on "Beating cancer" has the EXACT same chances overall as sarcastic individuals who used the F-word and did not join in group activities. I cannot tell you how much that study brightened my day!

It makes me angry that critics exist, but I know when you are visually disabled, everyone has an opinion. Have you got your copy of Spontanous Healing yet? Lets have a bonfire!

FridaWrites said...

Well, fuck, I need a copy of that study! As one of my friends always says, "the body, it is against us."

Spontaneous Healing I didn't know about, sounds like good fodder for Spontaneous Combustion. I did know about Louise Hay's work when I did training to support women in labor--complete blame-the-victim for unbalanced chakras mentality.

Wheelchair Dancer said...

Raising a glass over here! YAY!

I am really not sure what do or say about this. We have a really weird culture around healing. Barbara Ehrenreich wrote a really good essay about the culture of breast cancer and positiive attitude and how people wanted her only to be positive and happy and how she felt like she had bad attitude all the time. Me? I like her attitude.

so YEAH! Kick back. Raise a fist tot he insurance people and enjoy your body.


FridaWrites said...

I looked up Ehrenreich's essay and read that earlier this evening--thank you for letting me know about it. It was odd how people just expected her to go with the flow, not to raise any questions or express any anger. It's almost like breast cancer has become trendy, though I'm a bit afraid to say that.

rickismom said...

I can not comment about positiveness and healing. But as a person dealing with several major issues (a child with DS who I have to FIGHT tooth and nail for her rights.... several court cases...., and a spouse with severe mental health problems) I have this to offer. And this is what I tell new parents of kids with special needs:
1. Be honest. Don't say, G-d I've always waited to have a kid that will use use 60% of the monthly budget.. Be Honest. Say it hurts at times. Say you wish it could be different. Cause if you can't acknowledge that anger and pain, you will never move past it.
2. THEN work on being positive. If you are already in the deep water, you might as well swim. Bring out good endomorphins. But this will only work if you have first expressed the negative and acknowledged it....

And let me add a "cheers" to your celebration.

FridaWrites said...

Good suggestions--too often we're asked to bypass Step #1, and--wait a minute--it does hurt! It is difficult!