Wednesday, July 24, 2013
Living With A Disabled Person
When I met my husband 7 years ago, he was a young healthy man in the prime of his life. He worked hard as an airplane mechanic. His job involved a lot of heavy lifting and manual labor. When he was 18 he was in a horrific car accident in Japan. He hit a telephone pole and was stuck in the car for 7 hours with a compound fracture to his left leg. Luckily he was the only one majorly injured in the crash. He spent 6 months in a hospital on a morphine drip. They grafted the vein in his left calf to repair the ruptured artery in his leg. After much time and rehabilitation he was finally able to walk again. At that time, he was approached by a social worker who wanted to sign him up for disability. No one thought he would ever live a normal life again. But Sean said no. He, like me, grew up in a conservative household and were taught the value of hard work and not taking from the government. Both Sean and I have held steady jobs since we were legal to work. We both paid our way through life, not relying on handouts from others. (although my parents paid for my school and let me live at home while I was in college and I will be forever grateful to them for that) Sean amazed everyone. He went to aronotics school and received 2 associated degrees and passed his FAA exam and became a licensed airplane mechanic. His motivation was the tragic death of his mother in a plane crash when he was only 13. The crash was caused by a mechanic not doing his job right, and Sean wanted to do what he could to make sure that didn't happen on his watch. In fact while in school for being a mechanic they showed crash videos, and one day it was a video of the crash his mother died in. He had to leave the room. Things were great for a couple of years. Then his back starting hurting. He ignored it and kept on working. Then there was an accident while he was working on a plane in Louisiana. The exact spot where the vein was grafted and a skin graft was put in its place was ruptured. He came back to Texas and spent months at the wound doctor and hours a week sitting in a hyperberic chamber. Did he give up? No, he went back to work. This time for Boeing here in San Antonio. But, he couldn't escape his pain. After everything that he had been through and overcame he knew he could no longer work on airplanes. So we made a plan. He would work part time odd jobs and go back to school to get a bachelors degree and become a special education teacher and a coach. But things just kept getting worse. His back just gave out on him. He went to a specialist and learned that he has severe arthritis. The doctor said his back looked like swiss cheese. So he had a neuro transmitter implanted in his back. Basically metal leads are inserted into his spine which connect to a battery implanted in his butt cheek. The idea is that you feel vibrations instead of pain. We had high hopes, but it didn't work for Sean. Then Sean had his first DVT. A DVT is basically a blood clot. The first time Sean had a cluster of 5. After hospitalization we took him to a hematologist and learned that he has not one but two rare genetic mutations that cause blood clots. He was put on blood thinners and his whole life had to change. He has to be super careful not to fall or cut himself. When he is traveling he has to stand up and walk around at least every two hours. Later Sean would be hospitalized for more blood clots. The worst was when two of them traveled to each lung causing what is called a Pulmonary Embolism. We almost left the hospital when a nurse noticed his oxygen levels were a bit too low. So before they let him leave they did a CT scan of his lungs and we weren't going anywhere. At the same time that Sean's body was falling apart on him, he became more and more depressed and moody. I remember it like yesterday. The best way to describe it was like always having to walk on egg shells. Where had the funny full of life man I had fallen in love with gone? In a short amount of time he lost his grandfather, an uncle and a very close family friend. He was devastated and there was nothing I could do but be there for him. It was after his grandfather passed that Sean had a full blown breakdown and we learned that he was Bipolar type II. Now we had a debilitating back injury, a leg wound that would not heal, a one in a million blood disorder called Thrombophilia and bi-polar. That is when we gave in and applied for disability. It took almost 2 years and countless denials, but Sean was finally approved and declared disabled by a judge who said he should have been approved the first time he applied. Sean is committed to doing anything he can to get better. He has lost 40 lbs. He continues to go to school to pursue a teaching degree. So what is it like to live with a disabled person? I won't lie, there were moments when I wanted to run away. Not from Sean, I love Sean with all my heart, but from the stress and the constant bad situations. But, I never left. I never ran. And I am so grateful I didn't. For every challenge that Sean has, he has ten things that are wonderful. His smile. His kindness. His sense of humor. His strength. His honesty. His love. Last week I pulled a muscle in my back and could hardly sleep for 3 nights. It was torture. Totally awful. No matter how I laid I could not find a position I wasn't in pain. And I realized, that this is what every night is like for Sean. He barely sleeps and I can understand why. Imagine going from a healthy hard working man, to a life of pain. It truly puts my petty complaints into perspective. I am so grateful for the seven plus years that Sean has been in my life. We have held hands through all the struggles that life brought us, and we came out stronger on the other side. I know no matter what, that he will always be by my side supporting me. I would not trade our life together for anything or anyone in the world. I believe that things are going to get better. Sean will keep working hard on getting healthy. Someday he will get that teaching degree and he can get off of disability and go back to work. In the mean time, I am proud to support him. I am proud to be his partner. I admire him so much for his strength and courage. And I am grateful that I get to call him the love of my life.