There is a name that will last longer than my maiden name. I will wear it longer than I use my married name, even if I wear this wedding band into the grave. That word will describe me longer than, wife, friend, daughter-in-law, social worker, or college graduate. There is a term that has bobbed and weaved its way after me through life so far and it will doggedly trott after me for a long time to come. That is the title of cripple.
Now I know that term is no longer socially acceptable. A crude way of expressing disability, but it is the truth I must face daily. Cripple is a title I defiantly refused to wear through my adolescence and early adulthood. Yet somehow, it has snuck up on me and whether I want to wear it or not, the reality of that word now enclothes my every waking moment.
A moment seared in memory is walking into the Shriner's Hospital for Crippled Children for the first time as a patient. I walked in a healthy thirteen year old girl and walked out a cripple. With the handy aid of a disembodied-human-spine-on-a-stick I was told that a) you have severe idiopathic scoliosis b) it's really bad c) you are beyond the hope of therapies or bracing (small inward cheer about the no braces part) d) if this spinal curvature continues your lungs and heart will be crushed and you will die. um. thanks. and ta-da! : e) we have you scheduled next month for spinal fusion surgery with a side order of metal rod placement. enjoy.
I immediately got sick to my stomach.
One month and two weeks in the hospital later I was wheeled out of that same hospital four inches taller. Yes, four inches. And hit my head on the roof of our car. I didn't fit into my life anymore. Getting out of ben was my greatest solo achievement. Gradually I did. My amazing, wonderful body grew and accomodated the changes forced upon it. I forgot that other people can twist or bend. I got freakishley good at using my toes to delicately extract items from the floor. Socks, towels, cherry stems. I can nab 'em all.
I have amazing posture.
Just ask my mom.
Strangers stop and compliment me.
I lived the next 12 years brazenly, stubbornly in the face of my limitations. High ropes adventure courses, ski hills, overseas trips, dance teams, yoga class, working in an urban emergency room. You could not have stopped me if you tried.
But it took a poop-covered four year to take me down. To make a long story short, I worked in a psychiatric hospital. Worked in the past tense, that tension is past. One abused and scared four-year old made a mess in his pants and then, in the course of trying to change him, make a mess of me. So I got stopped in my tracks. And that old title caught up with me. I'm a cripple once again.
While my days revolve around doctor's appointments, pain medications, physical therapy, phone calls to providers and case managers, and picking out which frowning face on the pain scale I am today. These do not totally define me. My life, breath, existence does not rise and set in my back pain. I am so much more. And while I do not have the life, the activities, abilities I once had, the title of cripple is only a small part of my whole life. One small patch in the work and beauty of this quilt.
Now I know that term is no longer socially acceptable. A crude way of expressing disability, but it is the truth I must face daily. Cripple is a title I defiantly refused to wear through my adolescence and early adulthood. Yet somehow, it has snuck up on me and whether I want to wear it or not, the reality of that word now enclothes my every waking moment.
A moment seared in memory is walking into the Shriner's Hospital for Crippled Children for the first time as a patient. I walked in a healthy thirteen year old girl and walked out a cripple. With the handy aid of a disembodied-human-spine-on-a-stick I was told that a) you have severe idiopathic scoliosis b) it's really bad c) you are beyond the hope of therapies or bracing (small inward cheer about the no braces part) d) if this spinal curvature continues your lungs and heart will be crushed and you will die. um. thanks. and ta-da! : e) we have you scheduled next month for spinal fusion surgery with a side order of metal rod placement. enjoy.
I immediately got sick to my stomach.
One month and two weeks in the hospital later I was wheeled out of that same hospital four inches taller. Yes, four inches. And hit my head on the roof of our car. I didn't fit into my life anymore. Getting out of ben was my greatest solo achievement. Gradually I did. My amazing, wonderful body grew and accomodated the changes forced upon it. I forgot that other people can twist or bend. I got freakishley good at using my toes to delicately extract items from the floor. Socks, towels, cherry stems. I can nab 'em all.
I have amazing posture.
Just ask my mom.
Strangers stop and compliment me.
I lived the next 12 years brazenly, stubbornly in the face of my limitations. High ropes adventure courses, ski hills, overseas trips, dance teams, yoga class, working in an urban emergency room. You could not have stopped me if you tried.
But it took a poop-covered four year to take me down. To make a long story short, I worked in a psychiatric hospital. Worked in the past tense, that tension is past. One abused and scared four-year old made a mess in his pants and then, in the course of trying to change him, make a mess of me. So I got stopped in my tracks. And that old title caught up with me. I'm a cripple once again.
While my days revolve around doctor's appointments, pain medications, physical therapy, phone calls to providers and case managers, and picking out which frowning face on the pain scale I am today. These do not totally define me. My life, breath, existence does not rise and set in my back pain. I am so much more. And while I do not have the life, the activities, abilities I once had, the title of cripple is only a small part of my whole life. One small patch in the work and beauty of this quilt.
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