Growing up, my dad taught me several things:
- ALWAYS make sure the ladder is secure before climbing onto the roof. If you DO find yourself in a free fall, try “tuck and roll.”
- Installing an ironing board that folds down to sit over the toilet in the laundry room is a bad idea, even if the room is super small (it took ONE pant leg in the toilet to make him take that thing down).
- Stuff your face when in the orchard picking apples.
- There is nothing better than a dog.
- You get what you pay for. Buy quality.
- There are a lot of schmucks out there (“You know. Ronald Reagan. President. Actor. Schmuck.” That’s a direct quote. I do not feel strongly about Reagan one way or the other.).
- Adding red wine to chicken will turn it purple (not an issue, since I don’t eat meat, but knowledge is power!).
- Driving a speedboat onto the beach like a maniac, will, indeed, get rid of SOME barnacles on its hull.
- Wooden roller coasters are the best kind.
- If you find yourself in the drugstore with odd implements in your hair because you let your kid play hairdresser and she didn’t take them all out before you left the house…just roll with it (it was a butterfly barrette, ok? It was pretty.).
Above all, though, what I learned from my dad was the power of humor and the importance of hope. Growing up, my dad was the consummate ladies man and bad boy. He was an all-star baseball player, a black belt in Tae Kwon Do and a chronic flirt with a penchant for numbers.
Appearances can be deceiving, though. He was deaf, he had juvenile onset (Type I) diabetes and later, he would find out that he had Friedrich’s ataxia, a disease that erodes the cerebellum. Eventually, this would rob him of his ability to walk, and the dexterity that allowed him to take a car engine apart and put it back together (he could build ANYTHING). When my dad passed away, he was blind from diabetes complications, profoundly deaf and confined to a wheelchair. He was on dialysis from kidney failure (another diabetes complication) and he was hospitalized again and again as infections and other complications wracked his body.
I write this not to make you pity him, but I tell his story so that people can understand how truly amazing it was that he had not lost hope. Hope that his life would improve. Hope that he would be able to rejoin society. Hope for his children.
For the last few years of his life, communication was exceedingly difficult. He was trapped in his body- he couldn’t hear, but he had plenty to say. When we first realized he was going blind and would no longer be able to read lips or see sign language, I had to think fast. When I was a child we played a game before bed time where he would trace letters and words on my back. So, I told his girlfriend (he was in FL, I was in RI at the time) about our game and told her to give it a try. She called me later that day and reported back that she started tracing out the letters of my name on his back, and he started to cry when he realized what she was doing. He remembered.
It was our game that became his lifeline. Other than “two taps for yes and one for no,” every sentence was painstakingly spelled out on his back. At the time of his death, he was learning morse code, hopeful that this would make communication easier, and that he would be able to travel with a companion (his own Annie Sullivan, if you will). He had turned down my offer of a kidney if we were a match, but was hopeful that dialysis would continue to work. He talked about the future. He still laughed and joked. Often, he’d poke fun of himself. Sometimes he would tease me (mostly about my love life and shoe obsession). Sometimes he’d tell stories of his youth (he was an incredible story teller and very very funny). I would rest my head on his shoulder or if we were sitting on the floor, on his knee so that he could feel me laughing as he spoke. Towards the end, it felt as though he was cataloging his life- getting the stories out while he still could and making sure his history would carry on.
It does carry on. Even though it’s been six years since I’ve heard his voice, his laugh, or gotten one of his really really great hugs, it is always, always with me. I watched my dad die. I sat and held his hand with my brother holding the other. I was with him when he went out of this world like he was with me when I came into it. It changed me irrevocably. I lost 80 pounds and turned my life around. I take better care of myself. I take chances. Every single day, I am thankful I can see, I can walk, run, do a cartwheel, ice skate, ski, play volleyball, walk on the beach, and so many other countless things. When I complain about the small stuff, I try to remember my dad- quick-witted and sharp minded as ever, but trapped in a body that didn’t work, and how he refused to quit. He refused to accept that this was the hand he had been dealt. He had his rough moments, but he handled it with humor and he even handled it with optimism, when optimism was hard to come by.
So, yeah. Maybe I had a bad day. That’s ok. It’s relative, really. It’s ok to wallow for a bit, but sooner, rather than later, I know to pick myself up and dust myself off. I have to believe that things will get better. I have to try not to sweat the small stuff. How can I not? After all, I AM my father’s daughter. Happy Father’s Day.