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I Am Not My Disability

I Am Not My Disability

Despite being a diabetic paraplegic, I view myself as a healthy person. Why?


I don’t think of myself as a “sick person.” I think of myself as someone strong and healthy, someone who can get by with very little sleep. I think of myself as someone who is careful about what I eat and that I always make the healthier choice.

But the truth, when I face it, paints a very different picture.

Twenty-one years ago, due to doctors’ negligence following an epidural during birth, I became paralyzed from the waist down and was forced to re-think my life in an instant. Within ten days I lived through a traumatic birth, major spinal surgery and a transfer to re-hab for an undefined although clearly long time. I was forced to find someone to take in my new born son and to help my husband look after my five other children, the oldest of whom was barely six and a half.

I became very sensitive to labels, assertively correcting anyone who referred to my “illness” insisting that what I had was a disability and I was not sick.

I was right, but in the long run I was also wrong.

Paralysis and its sedentary lifestyle bring along with it a veritable shopping list of possible and probable ills.

During my next pregnancy, I developed gestational diabetes. Because I was not sufficiently active, it morphed into a pre-diabetic condition which sneakily, silently turned into Type II adult-onset Diabetes. Paraplegics can no longer feel or control their sphincters so anti-bacterial bladder medication and antispasmodics entered my life.

I was now at-risk so I was given statins, blood thinners and cholesterol lowering medications as well.

I take 17 different medicines every day and that doesn’t include vitamins. The list of foods that I have to avoid is longer than that of the foods I can eat. I suffer from intestinal disorders, diabetes and bladder ‘issues’. I am supposed to prick my finger 4-5 times a day to check my blood sugar and I use the bathroom according to a schedule instead of a natural feeling. My eyes are puffy and my legs swell up, my hands are painful and become numb easily when I am writing, typing or driving. Many days I cannot get out of bed because of pain, upset stomach, bladder infections or just having had a ‘bad night’. I often cancel plans with friends and family or miss out on events and celebrations.

Yet I continue to hold onto this view of myself as a healthy person. Why?

I have a disability and I also have illnesses, but I am NOT the disability, nor am I the illness.

I think of myself as a healthy person because it is what gives me the courage and strength to go on with my life, not just living but living to its fullest.

I believe that 9/10s of healing is attitude (read Bernie Siegel’s books). Norman Cousins believed that the right attitude amid lots of laughter could heal a person of almost any of his woes. I cannot deny the diabetes, the bladder infections, the recurrent stomach and digestive issues. I cannot ignore the breath-stealing pain in my hands, wrists and stomach, but I can look myself in the eye and say, “I am a healthy person!”

I’ve had two children since becoming disabled. I’ve studied psychology and life coaching and created courses for others with disabilities to become peer counselors. I started a dance troupe for women in wheelchairs. I’ve opened my home to friends, family and strangers, hosting sheva brachot dinners, lecture series and a safe haven for individuals with disabilities and their families.

I have a disability and I also have illnesses, but I am NOT the disability, nor am I the illness. I am a woman, healthy in my mind, in my attitude, in my approach to life. And if I cannot get out of bed today because of pain or other issues, well thank God tomorrow is another day!

June 10, 2017

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Visitor Comments: 14

(13) Sarah, June 25, 2017 5:57 PM

for Dina Leah - dystonia is not an illness

Dina Leah, you have a muscular-skeleto disorder - dystonia - not an illness. It is challenging, but the medical profession can assist in making life easier. Work with physiotherapists for the best outcomes. Possibly also appropriate muscle relaxant injections administered by skilled practitioners may help.

I would recommend - from personal experience - regular physiotherapy exercises for all who have physical challenges - whether from accident or birth. Going as flat out as possible keeps the circulation going and makes the most of muscles.

(12) Elaine Hochman, June 21, 2017 11:47 PM

Wow Wow Wow
You are truly a living example of "The cup is half full."
Though you are doing a tremendous job and handling your tests, I wish that you will have a complete recovery.
Thanks for the unbelievable article.
איזה הוא עשיר השומח בחלקו

(11) David Block, June 19, 2017 1:51 AM

I am a legally blind filmmaker

I read your story. I am legally blind. When I became a documentary producer/director over 25 years ago, people wanted to know what a half blind guy was doing in this visual business. Luckily, I ignored peoples' discouragement. I leanred to embrace my supposed short comings. For example, I named my website - I did that to get noticed. I'm currently making a documentary about wheelchair users who dance with able bodied partners. Here's the link with more info. (I made a different wheelchair dance film a few years ago).
Please review and thank you for your post. David Block

Michele, August 29, 2017 3:51 PM

I know your sisters!

Hi. When you reached out to me I was touched. I have been dancing (not ballroom) with a standing partner (most recently my daughter) for almost six years; I love the trailer and hope to see your film one day. Today I just realized that I have known your sisters from Camp Ramah for years!! Small world.

(10) Dina Leah, June 17, 2017 11:34 PM

Thank you for your inspiration

I've had more than one disability, & I've let them define me as disabled. Your attitude has given me a new perspective. Thank God I'm no longer in need of a wheelchair & use my walker occasionally with a cane. Part of my problem has been no definitive diagnosis. I do have severe scoliosis, but doctors were saying it's all in my head. Then, once I was able to walk with intense physical therapy (still can't work), I developed eye, facial & neck spasms which affect my reading & writing. They are forms of a rare disease called Dystonia. I ended up depressed & feeling sorry for myself. I'm dependent on my current husband. Not lucky to have more than one child due to hysterectomy for severe fibroids. Now I'm in my 60s & I feel life has passed me by. I've had anger towards Hashem & myself. Your attitude has given me hope. For some reason Hashem has given us our disabilities as challenges. Reading how you have chosen not to let it define who you are is so refreshing. I too would be interested in a blog or other writing. I definitely need the chizuk you have shown me. Thank you for putting it all in a new light. "I am not my disability. I am more that that". May Hashem continue to bless you.

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