Today, my mother sent me a video of my father at his rehab appointment. For the purposes of my mother’s request for privacy, I cannot go into this video’s content, but it shows the work ethic of a man who is not giving up in his recovery.
As mentioned in the “About Me” section, my father is 5 years out from a massive double stroke and craniectomy/cranioplasty (a procedure repeated twice). Whether religious or not, there is a major blessing that God, or whomever high, provided to my father. My father has never looked at himself, ever, as someone who is disabled.
Some more background about my Dad…
My father grew up 85-90% deaf. He had an illness that robbed him of hearing when he was a toddler. No one knew till he was in the 2nd or 3rd grade that he was deaf. The nuns at the catholic school he attended noticed my dad’s inability to pay attention, struggling grade performance and continual “behavior” issues. Back then in the 50’s, the resources for my father were limited. My grandmother, his mother, refused to put him into a special school. She is still to this day a hard-working, gritty, single mom of 3 children, and a spit-fire of a woman. At the time, the school administrators thought my dad’s apparent disability would render him unintelligent and she should consider institutionalizing him. She disagreed and raised cane.
My dad was an athlete, had decent grades, and graduated from high school and an engineering program. He help build and design many of the roads, bridges and infrastructure in the Philadelphia area. My father’s biggest pet peeve growing up was going to class on the weekend. Other kids could play on the weekends, but he rode the train from his home and walked to the Philadelphia School for the Deaf. To function in a hearing world, the school offered the deaf a way to communicate and effectively learn. But he didn’t learn sign language. He learned to read lips.
He was impressed by his teacher. She was a non-signing deaf woman who had a very successful career and functioned flawlessly in a hearing world. She never saw the need to sign. The world was speaking to her and she spoke back.
During the Vietnam war, my dad was drafted but due to his hearing, was refused at the physical. Some days, my dad wishes he was able to fight because several of his friends never came home. And for those who did, many of them have hearing issues now like him.
When his stroke happened, insurance covered only so many occupational, physical and speech therapy sessions. As long as he was making progression, insurance paid. Then a few years ago, therapy stopped. A tribunal of specialists determined he wasn’t progressing any further. So it was left to the family to continue treatment at home. And we did our best.
My father is an avid cyclist. And a few months prior to his stroke, he had purchased his dream racing bike that he planned to make the 1100 mile trek to my home in Florida on. Knowing his bike sits in the garage, his hope is still there to ride.
For me, when my dad was hooked up to life support after his stroke, I had to reflect on his end of life wishes we had discussed at the dinner table only a year or so prior. He never wanted to be a burden on the family and if he couldn’t have his regular life and ride his beloved bicycle or ski the slopes of Wyoming, I needed to be able to let him go. At the time of life support, he had come in and out of consciousness and was able to communicate in writing full cognitive sentences that flowed and made sense. So we made the decision that he was still there and he was able to fight.
And even though its been 5 years, he still continues to fight. We’ve been blessed with the ability to research rehabilitation specialists and programs across America. One of the top in the country is Moss Rehab in North Philadelphia. They have taken my dad into their stroke study and have worked with him for almost 2 years. They do things there that no one else does. They believe in you when insurance doesn’t.
I’ve never met the team at Moss, but my mother cannot stop complimenting them and sending progress videos to myself and family that aren’t close by. Tears stream down my face as I see my dad try and try and try. At his 50th High School Reunion this past October, I was his date for the Homecoming Game. As I wheeled him onto the field and perched him at the 50 yard line marquee he shouted, “I’m still alive!”
When I want to give up, all I need to do is think of my dad. He would never let me give up and I will never let him give up. He’s my motivation for this blog, this journey to help others, and to never let anyone label you. So if you are facing the situation of insurance cutting coverage, doctors giving up, and the feeling of the world is against you, DON’T GIVE UP. Ask questions, research the illness or situation you are in. Medical studies cover health costs and transportation. Apply! You never know what things you can do, until you can believe in yourself and have a team behind you that believes in you too.
Love and Compassion,