Disability..seen or unseen, that's the question!

I've had Crohn's since 16, diagnosed incorrectly, almost died from meds I was allergic to and spent half my life in hospitals. So, I became a nurse. Logical, right?

Forty two years of Crohn's, surviving and refusing any surgeries, I moved to a state I waited 35 years to be in. Then it happened! It was strange throbbing pain in my foot. Then swelling and marbled coloring began. Then the pain was so horrid I was unable to lay down or get any relief from any script, up day and night, crying. After misdiagnosis two times, gangrene set in and it was too late for treatment, although a fine hospital I was transported to at 2am, tried. My leg was amputated to save my life.

Leg or death...easy choice?

Not really. I'm a nurse so not much demand for one legged ones. It was a long haul, lots of rehab, pain and trauma. My mind hadn't wrapped around my loss, not my leg loss, but my career loss. You see, I never let Crohn's define me nor stop me. I married (a few times) had 5 beautiful children, went to college, then stopped a few times and kept returning, worked my butt off two jobs mostly while going to school and still raising kids solo.

See the pattern? Nothing held me down or back.. for long. I'm no superhero, just super stubborn and determined. So after a year in the hospital and rehab, Crohn's kicked in. Trauma from the amputation traumatized my body, so Crohn's didn't want to be left out. I got thru a coma, and learning how an amputee lives.

Living with an invisible disease

Now, a whole new dilemma began. Crohn's is an invisible disease. Nobody can look at you and know...she has Crohn's. I never informed any employer or co-worker of my bowel disease. It was my secret, my hidden disability. I spent a lot of time in hospitals, every three months for many years, pre- biologic times. Many excuses were made. Nobody knew my big secret, not even at school. I would not eat anything until classes were over and then I went home, ate well and spent time in my bathroom or awake in pain.

Now, my leg amputation was and is a very different scenario. The first 5 months, I had 1/2 a leg, visible to the world. No prosthetic could be worn yet. I was imprisoned in my wheelchair, needed help in and out of my house, my car (any car) and caring for my disabled child. So many things I was now unable to do, like go to the beach, ride a bike, and get around on foot. Mostly, I couldn't work, as a nurse or at all. It took 2 years to mourn those huge differences in my everyday life.

I hated the stares, especially from able bodied people who didn't realize I saw their pity or confusion. Kids stared too. Being wheeled, lifted and helped all day long was torture for an independent woman, a nurse. The helper now needed to be helped. Hard pill to swallow.

I hated the stares, the wheelchair, asking for help, having my 2 grown kids constantly needing to assist me. I couldn't reach places I never thought about or fit through certain places or even leave my own house. I worked hard, learned how to use my prosthetic and finally no more wheelchair. I got so good at it, wearing jeans to cover my fake leg, nobody knew I had one. I had an invisible disability again and it felt good. However, I still was unable to do things I never thought about before. I couldn't climb a ladder or step stool, drive a clutch, go to the beach, ride a bike, run, feel the grass on bare feet or wear certain shoes.

I was clearly disabled.

Visibly Disabled vs Invisible Disabled

My point is, with Crohn's, I never felt "disabled"...annoyed, disrupted, temporarily held back and pained, but never disabled. Now, that was different. With Crohn's, I still did everything and anything I chose; now I had limitations. I hated that word. It was hard to deal with and depression took hold. I hate being dependent but for some things I was. I hated not being able to do something I wanted to, yet there were things I could not do.

So, now, 40+ years of being non disabled, I was disabled. Just saying that word bothered me, made me feel less than, incompetent. A whole new feeling, a whole new world.
So today, it's four years since my new world began and it won't be ending. My new leg (#4) is great and gets me around nicely, but I'm still a disabled person with a visible disability that is difficult to hide. My hydraulic foot makes me feel a bit robotic, and I still can't feel the grass or sand with my foot and I still can't drive a clutch, ride a bike nor run. Maybe in time, I can do those things, with technology and practice, but I've changed. I doubt I'll be working as a nurse, but I have career choices, new training to use my 37 years of experiences and knowledge. But I realized I liked my anonymous standing in the disability world, fooling most.

I guess you could say, I preferred Crohn's over an amputation. There's one thing in common; they are both disabilities, technically, legally and by societal views. But hidden, it's much easier to deal with. My only reminder is my pain and my strict diet. No restrictions when no flares. But my leg, that's a forever, everyday reminder. Every time my leg is off, I see it, feel it, know it to be true. So, inconclusive, I definitely prefer unseen, my secret disability that allowed me to carry on, be me, do what I loved my whole life. My next chapter in life is coming to realization and acceptance of my new life. And it ain't easy.
But I'm learning how. My new life..leg 3

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