Monday, May 07, 2007

Disability and prayers

Hmmmm. I’ve been reading some of the sites listed over at Dancing Through Doorways – about disability, particularly autism. One site was particularly disturbing: Autism: Getting the Truth Out. Disturbing in the sense that I don’t know many autistic people and that I am so ignorant of their circumstances. I saw a segment on television some time ago about an autistic musician, probably on 60 Minutes, and was impressed by his musical ability. I didn’t think much about the rest of his life. But, then we never think much about the rest of anyone’s life, do we?

While the articles on another site seemed dated, one by an adult who had been in the closet (of autism) for most of her life struck me personally. She talked about high functioning and how she learned to talk about her disability in ways that did not alarm people or provoke pity. She has incorporated their expectations and their acceptable mannerisms into herself until she felt she no longer knew who she was.

Many of us do that. And, many of us have disabilities that we cover well or deny. That denial will get you in the end.

I’ve had respiratory problems all my life. I lived much of my life as a high functioning respiratory disabled person. There, I’ve said it. I am and have long been disabled. I’ve lost many jobs because I got sick and couldn’t get well in their set length of time. I’ve worked in states where discrimination is difficult to prove, especially when you deny to yourself that you are disabled.

Right now, I’m a low-functioning respiratorily disabled person. A good diagnosis on Friday and an extended weight loss program may bring me back to medium-functioning. May.

I am not obviously disabled. People do not shun me. Employers would hire me, but they would also let me go when the extended illness came. I am bright and loved (what blessings), and I have all the physical things that I need in life (more blessings). I do not have self-esteem. I have to pretend that I will get well, when the truth is that I don’t know if I will ever be better than now. Perhaps. The Friday procedure should tell us something.

What I have to accept is that I am disabled. Ten years ago my pastor, with whom I shared an office, said that I should apply for disability. I was horrified. I wasn’t disabled. I was just sick and I would be well again. Untrue. I got better, but I never regained all my strength of body or immune system. Last week a friend suggested that I apply for disability. I was silent, not wanting to hurt her feelings because she is disabled as a result of an auto accident. I didn’t feel that I was disabled. Not me. I can do it. I will get well. Untrue. I will never be well. I may get lots better, especially if I lose weight, but I am respiratorily disabled and I will continue to be for the rest of my life.

That’s so hard to accept. It’s not my vision of self. Just as the autistic woman said that others’ visions of herself was not her vision. My vision doesn’t fit others’ visions either; I’m in denial big time.

Perhaps some of my adventurousness during my earlier years was in part due to the fact that I knew I had to live it all as quickly as I could. Someday I wouldn’t be able to do those things. Someday I might be stuck inside just because the wind is blowing hard.

My communication with God slides among three perspectives – prayers for others, pity for myself and gratitude. Drop in an occasional amazement, and there you have it. God and I had a talk the other night about my weight. I heard in my heart that I’m not ready yet, and I heard in my heart that I haven’t developed the discipline that losing the weight would take. It wasn’t going away by itself. God would help, but I had to do my part, and I wasn’t doing anything except feeling pitiful. (Twelve steps programs would say, “Margaret, you have to act as if..”)

Same with respiratory problems. I wasn’t doing everything I could to alleviate the symptoms. I could do better. And, I have done better on that, Thanks be to God. I take my medicine, I use my inhalers, I stay out of the wind, I use dust masks (awful things – make your nose run), and I still feel sorry for myself.

I can’t get out of this rut. So, readers, I need some prayers – for depression, for hope, for a significant outcome of the Friday bronchoscopy, for the courage to go to Weight Watchers, for a way out of this rut that I can and will take. I have so much good in my life; I want to get out of this pity me scheme, look reality (if it exists) in the face, and go on with what I can do. Thanks.


Nina said...

Dear one, you have my prayers. I just opened "Practicing Resurrection," which came today (Wormwood's Doxy recommended it) and came across a passage in which a woman at a retreat told the group about the motto over the door of a hospital where she had been treated for depression:

"Non est vivere sed valerie vita,"

which means,

"Not only to live, but to live valorously."

I think that is what you are working toward doing. I'll try, too.

Cynthia said...

Yes, great book. The title is from a great poem by Wendell Berry, "Manifesto: Mad Farmer Liberation Front".

My prayers and my support are with you.

Rory said...

You certainly have my prayers.

Best of luck with Friday's test.

A friend of mine is fond of saying "Everyone ends up with a disability if they live long enough."

Cecilia said...

You are in my prayers friend. I think this post is important-- there is great honesty here as well as depth of feeling. This is a hard thing, there is no getting around that fact. But you are dealing honestly into it. 12-steppers also place a high, high value on honesty.

Peace, friend. And good luck. And prayers.

Pax, C.

Dave said...

I thought you might get some use out of reading The Spoon Theory (PDF).

episcopalifem said...


All my prayers are going out to you.

You are officially on the list, dear one.

While I agree that we are all disabled in one way or another, it's totally different to deal with the reality of an outward disability then with the idea that you are disabled somehow.

Wormwood's Doxy said...

Sharecropper--you are in my prayers as well, especially as you head for Friday.

Please let us know what the doctor says...

June Butler said...

Margaret, you are on my regular prayer list.

I will pray for hope in the midst of hopelessness, my dear friend.

Dr Laura Marie Grimes said...

Hi, I came over from Nina's place.

Congratulations on your courage to speak hard truths and do the work to claim to fuller life and joy for deserve it.

I am praying for you and rejoicing in your good news about the bronchoscopy, the weight loss, and the reclaiming of memories through your trip to Bermuda.

Have been taking some similar steps myself: coming out as bi (won't have much external effect as I am and will remain in a faithful marriage with a man, but is healing and empowering). And returning to Adult Children of Alcoholics meetings.

Please take gentle care of yourself.