Paul's Heart

Life As A Dad, And A Survivor

Handicapped… Or Handicapable

Three months following my open heart surgery, caused by damage from radiation therapy for my Hodgkin’s Lymphoma decades ago, I took the family to the New Jersey shore for a weekend getaway as part of my recovery before returning back to work. We were going to take our children to the amusement pier for the evening. My daughters are fond of carousels. In fact, I have photos of my daughters on every carousel they have ever ridden. With both girls under the age of five, both their mother and I rode with them.

As we approached the entrance gate to the ride, there was the measuring stick for children who rode solo without their parents to make sure they were tall enough and next to that was a white placard. On the placard was a huge red circle with a heart shaped symbol and a big line drawn through it.

In my younger days, I operated rides in our local amusement park, so the “heart condition” sign should not have been a shock to me. I know the adrenaline rush that occurs with a ride, so I was not anticipating riding on any kind of thrill ride. I was prepared for that. But this was a carousel, the tamest of rides.

Now I know the likelihood of any cardiac event taking place on a carousel, but seeing the cardiac warning sign hit me like a slap to the face. My heart sank. Was it possible that I was never going to get to do one of the things that I truly enjoyed in life, riding amusement rides with my daughters?

Six years later, unless you happen to catch me with my shirt off, which does not happen often in public, to look at me, you will never notice anything wrong with me just by looking at me. I do a very good job at hiding the late side effects that I deal with, so good, that even my doctors get fooled that I have actually been diagnosed with cardiac disease, pulmonary disease, muscular-skeletal issues, immunity issues. But they will all confirm, those diagnosis do exist. So seeing over a dozen specialist at one of the top hospitals in the country, Memorial Sloan Kettering, I have a label that is buried deep inside my conscience. I am disabled, handicapped, like it or not.

My doctors agree that I do not appear the typical Hodgkin’s survivor. From the day of my cancer diagnosis to today, I have never thought of myself anything less than a fully functional human being. True, I may not have the strength, ability, agility, flexibility, that I once had, that the average healthy person may have, but I am still fully functional. I do not consider myself handicapped, I will not even use the word. But I am learning to accept the word “handicapable.” With restrictions, dictated by my doctors, I am a fully functional human being.

I do have a handicap parking placard for my car, but it rarely is used except in situation of extreme heat and humidity (difficult for breathing) or if I happen to be carrying something heavy. Other than that, you will never see me use it. As an employee, I put in an eight hour day taking the same breaks as others who have nothing wrong with them. The truth is, I do not know if anyone else is dealing with any health issue, just as with my appearance, most have no idea about me.

I remain a good employee, committed to my efforts in any task that I take on. Unfortunately, to the dismay of my doctors and loved ones, I am too hard on myself to allow anyone to help me with physical challenges. As a cancer survivor, especially one dealing with late effects like me, we carry enough on our consciences without having the burden placed on us, that we feel we have to rely on others for assistance. At least that is how I feel.

Unfortunately, my body does not show that mercy to me. If I do happen to push too hard, it has a very rude way of letting me know that I have done too much, like when I had to have my open heart surgery, or two battles with septic and double pneumonia. I have learned more to listen to my body. Sure, sometimes my coworkers do not like that, some may even feel that I do not do my share. But I would challenge anyone to wear my size 9 1/2 shoes for just one day.

I do not look for pity. I have given up looking for understanding. But I do know the difference. I am not handicapped. I am handicapable.

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