Scoliosis: no one notices if you never walk away

When I say I have scoliosis people nod as if they know what it is. I can always tell the way someone looks at me if they really know what this is or think I am making a mountain out of a molehill. I hate whiners, myself, so I try not to mention this condition to anyone as it sounds wimpy to me. Having scoliosis means your spine is crooked and many of us end out having surgery somewhere along the path of life. Some of us do almost anything to avoid it and I fall in the latter category. The curve in my spine is so severe that some doctors believe it may be compressing my heart and compromising my lung function. I think they may be right about my heart as it has always been tender but my lungs seem just fine to me. Most of my life no one noticed this “deformity” as the surgeons tend to call it but I have always know it was there. It is a struggle between my spine and my spirit, a constant fight,  I have to put a lot of work into this fight to keep ahead of the curve, so to speak. It is , at times, entertaining particularly when shopping anda saleslady will tug and tug at the fabric of a dress in a vain attempt to make it fall evenly from my shoulders. I am grateful for my sturdy body that has carried me  this far in life but I find now that I must lie down each afternoon for an hour to let the law of gravity do its thing. I couldn’t have a job where I had to stand all day as after 15 minutes of standing I am exhausted. This morning I started to take a look at the list of things I had to keep in mind now because of my spine and I smiled wryly at myself. This list was growing longer as I got older but I had neglected to take a look at how my life was being affected by my disability. I met a young man not long ago who is the head of a lab at U C San Francisco and he researches spine abnormalities as well as tissue growth often using stem cell research as a basis to his work. He promised me that within 5 years there would be an intervention for scoliosis in utero which made me really happy. I think one of the hardest things for a parent i to see is their child inheriting something that will cause problems in their life. I watched a child of mine suffer through scoliosis surgery and occasional pain and wished I could do it for her. I felt guilty she had this condition. I think every parent feels this.  

When I read that Walter Chronkite had died this week I was inexplicably sad for a long time. I felt as if he was a good father for many  in this country anda very wise man. The calmness of his approach to even the worst news was reassuring to us all. I remember meeting him once and was surprised at his genuine interest in my life and his great sense of humor. I think Sundays are sad days for many of us. They represent the end and the beginning. No one feels as safe as we used to and no one knows how to get this feeling back. I think for me it is through connections with friends. Today I went for a hike with some old friends who are becoming better friends and I felt blessed to be with them in the peace of the California afternoon with the sun in the trees and the lake water glistening around the trail. Lake trails are like a natural labyrinth as a walk around lakes gives you a sense of completeness and finality. At the end you go home and have a bite to eat and feel as if the day has been worthwhile and the best thing about the experience is that is is free!

 Scoliosis

 At fourteen someone noticed I wasn’t normal.

My mother took me to New York.

I wore a blue suit and stockings with flats.

It was raining.

We went to a small townhouse with expensive steps

And there we met a serious doctor who had five and one half minutes for us.

She will never have normal children, he said

There are a lot of things that can be done

Why not come back in a few weeks for a brace,

These deformities are interesting to work on.

 

My mother drove us home in her rapid small car

Whistling in and out of highways.

Her pointy toe tapping the accelerator in two-fourths time.

She said, “Look!

When we got home, his bill is here already.

He must have sent it before he even met us.

You look all right to me.”

She had never seen me naked.

As a matter of fact, no one had.

 

Later, at 34, a doctor held up my spine X-Ray to a light box.

An invertebrate, let’s fix it, he said.

Instead I offered up my daughter.

8 hours later she’s straight.

Unconscious, sliced, chopped, hammered, over and over

they made her normal.

Rodded her up, steeled her vertebrae, stole bone from hip to use as glue.

If you leave her alone, she won’t breathe by the time she’s 30.

They told me.

 

I am fifty-four and I am breathing.

I am breathing like I never breathed before.

Filling my Hawaiian sounding air sac lungs.

My spine so twisted my ribs compress my heart.

I knew there must be a reason it seemed so sensitive to pressure.

One Comment on “Scoliosis: no one notices if you never walk away

  1. i was born with one side of my body longer that the other so i have a leg a little shorter than the other, cause of this problem i walked with a limp and had to get leg surgery along with having issues with my knee. having this disability , although minor, it gave me another as i got older….i as well have scoliosis and i may not have it as severe as you but i am in the same boat. when people look at me, they can tell i am different when they look at the way i sit or stand. and when i am sitting and leaning forward you can see my spin is crooked through my shirt even. its difficult with every day life sometimes since people can be so cruel, especially in school kids often make fun of you. i remember my freshman year in cheerleading i went to camp and after the second night my room mate told me that the rest of the team was taking about how i was weird and that i sat funny compared to everyone else i went home after camp and ever since then i was always trying to sit normal and force myself to hold my back in a normal position that was hurting my back so bad that by the end of the day i didn’t want to do anything but lay down cause my back would hurt so bad. doing so actually made my back worse, and in one year i went from a 10 degree curve to a 30. i am currently still at 30 degrees but i have to keep up on check ups to make sure it doesn’t move, and my doctor said i have to get surgery if it gets worse. i am still young and i have a ways to go on dealing with this disability and i am going to stay strong and i give all my support to every other girl and boy out there that has to deal with this.

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