My Story: Teenage Years
Shortly, after beginning my 8th grade year in California, I found out that I would be missing much of that year in order to have scoliosis surgery done on my back. I had the surgery on December 5th, 1990. The surgery, involved placing two titanium rods (Herrington Rods) along my spine to straighten out a severe curve that had developed fairly abruptly. At the same time I had surgery on my heel cords, that would prevent my ankles from curving inward. Both scoliosis and the curving of ankles are problems that frequently occur with DMD. After the surgery was complete I acquired a sepsis infection (a hospital born infection), I wouldn't be a allowed to leave the hospital until the infection cleared up. Unfortunately, it didn't clear up for almost a month and I ended up having to spend Christmas and New Year's Day in the hospital. Fortunately, my family and friends of ours brought Christmas dinner to the hospital cafeteria, to make the holiday as normal as possible in that situation. Once I got out of the hospital (January 6th) I ended up being stuck in bed for several months and had to be home schooled for the rest of the 8th-grade.
After being stuck in bed for nearly half a year (and through the entire Persian Gulf War, from Desert Shield through Desert Storm, all thanks to my 13 inch television and CNN) I was finally beginning my freshman year at Benicia High School. I made friends, joined a few clubs, got involved in float building for our annual Homecoming Parade, and had fun (Oh yeah, I learned a few things too. I say a few because, well......... it was California).
My next big obstacle came somewhere around my 15th birthday. The neurologist (Dr. M., as I will refer to him in order to avoid hostility) for the MDA Clinic at California Pacific Medical Center in San Francisco (formerly S. F. Children's Hospital) told me that because of my decreasing lung capacity I would need some sort of assisted ventilation. He told me that there were two "options:" to undergo a tracheostomy (basically, a hole in the throat with a ventilator attached) or to wear a mask over my nose, attached to a ventilator, but only at night. I use the term options extremely loosely, because Dr. M. definitely favored the former option over the latter. I immediately responded that I would prefer the noninvasive method (mask, etc.). I knew I didn't want to go under the knife, risk infections, and be permanently attached to a machine. Dr. M. told me that I didn't need to decide right away, to think about it and let him know when I came back in 6 months.
During my next Clinic visit I told Dr. M. that I was going to go with the noninvasive ventilation. He strongly objected and insisted that a tracheostomy was the best way to go, even though he had given me another option. I told him that I had made up my mind and definitely did not want a tracheostomy. He even went so far as talking to my mom in private and trying to convince her that he knew what was best for me and I just didn't understand. My mom told him that it was my life and my decision, that I had to live with it and she would not force me to do anything. Finally, after another visit Dr. M. said, "I have to respect your decision." Not that he wanted to respect it, but HAD to respect it. I never wanted his approval and ended up not getting it. Oh well.
Well, I made it through my junior year at Benicia High School before having to move again, this time back to New Jersey. I did, however, get to the Benicia High School Junior/Senior Prom with my friend Isabel, it was a lot of fun. I finally graduated from Middletown High School South in 1995, after spending one-year there. I say, "You've got to roll with the punches."
