Note: At the end of this post are links to previous posts about my lung disease. I’ll keep these links at the end of each subsequent post, or figure out how to add a Table Of Contents.
Having the pulmonary rehab program is good in a number of respects. One of the most important to me is the return to a type of regimen that while not a work schedule, at least requires planning, execution, and determination, as has all my previous work efforts.
In other words, I get to feel like I am accomplishing something. These blog posts allow me to mix in a communication and social aspect for a more rounded yet abstract version of my old workplaces.
And like any good work experience, you get time off. Thursday’s time off was spent with my brother, Tommy.
Tommy turned 41 Thursday. A happy 41. I still look as him as my little brother and look out for him the same way. However, he is his own caring, loving, expressive, stubborn, knowledgeable, and unique person. Despite all the shit that life threw his way, his medical problems and his disappointments, he has achieved the greatest of human achievements. He loves life and takes it as it comes. He loves what he loves and in turn returns that love uniquely and wonderfully. And he loves people.
Along the way, Tommy has always been attracted to people who he listens to and hears on TV. He likes outgoing, funny, and accessible people. He likes people with a rhythm and a cadence to both their work and their lives. I’ve mentioned previously his love of Gene Hart, who was the VOICE OF THE PHILADELPHIA FLYERS for so many years and of the music of BARRY MANILOW, which played an important part in his ability to communicate and share.
In recent years, he discovered KELLY RIPA. He started to watch her when he was on dialysis. He had four hours to kill, and between romancing and charming the nursing staff and making friends with the other patients, he watched Kelly while he got better, got a transplant, and went on to continue his happy life.
I always try to take him up to NYC for the day to see LIVE WITH REGIS AND KELLY on his birthday. We had to skip last year because of my illness, but I determined that it would not stop us this year. I disappointed him last year, never again. Especially since he can sense my own problems and needs a break from them as well.
Of course, I still had reservations. This would be a fairly long drive for me at an early hour, at least without yet understanding my limits. This would also require me to realize that I had Tommy’s well-being and happiness in my hands as well. The good thing was that the studio was not far from where we parked, so while there would be exertion, it wasn’t a long foot journey in a distant city.
And it would be me with my tank in a public venue that I hadn’t used it before. I did go to a Phillies game this year as well as a SONGS IN THE POCKET concert at World Café Live and an Elton John concert in March. However, much of my use of the tank has been in shopping and other activities, and while I felt a little self-conscious, I could still blend in. For this trip, I wasn’t sure how different it would feel.
We left at 3:30AM and got to the studios by 6:15. The hardest part of the walk was the incline out of the parking garage, but once we were on level ground, pacing was easier. In addition, Tommy watched me like a hawk.
We went to a Starbucks across the street to pee. Yep, basic needs still exist. Then we got in line. The doors themselves would not open for another hour or so, and a gentleman in line graciously offered to hold our spot if we wanted to sit in the Starbucks. So Tommy and I milked our bagels for a time and then got back in line.
I felt pretty good, even though the exertion wasn’t extreme. I also felt less self-conscious that I thought I would. The only time I would feel that was when people would kindly offer me a place to sit or some extra help.
That is my main worry of being disabled. There are times when I will need the help but I do not want to attract extra help simply because someone sees the hose in my nose. I appreciate it, but I really don’t want special treatment beyond my limitations. I just want to be one of many and the only uniqueness I want is because of something creative about me and not because of my limitations. Yep, I will need assistance going forward but I also just want to be like you.
We had VIP tickets thanks to the help of WABC in New York City. That meant that while waiting to get into the studio, we were allowed to sit in a closed off area. That was very welcome to our tootsies.
It wasn’t welcome to my wallet as it was next to a kiosk selling REGIS AND KELLY souvenirs. A T-shirt, pen, bag, and key chain later (the hats were too small), Tommy had some more birthday presents.
We went into the studio. As we went in, Michael Gelman, the producer of the show, walked by. Tommy is not bashful. He shouted “Hey, Michael, hello!” and stuck out his hand for a shake. Michael smiled at him and shook his hand, returning the hello. To show how Tommy views everyone as familiar friends, Tommy remembers Michael saying “Hello, Tommy”. Suffice it to say that Michael doesn’t know Tommy’s name, but that is the way Tommy sees it and that is the way I accept it.
The show started and the hosts walked out. Kelly saw Tommy in the studio and snuck a wave to him while the cameras were on. During the first commercial break, she came over to him and wished him his annual happy birthday. She planted a kiss in his cheek and he melted. He of course asked for a picture and she of course said yes. Despite the time constraints, she always make a little time for Tommy, just as she did when Tommy would go up to see tapings of HOPE AND FAITH.
Of course, he also asked about his other love, FAITH FORD. While he loves Kelly, HOPE AND FAITH is always on his mind, and Kelly and Faith are inseparable to him.
He loved the show, and even loved Snooki. We were fortunate to be able to see them tape some segments for some future shows. I was fortunate enough to, for at least one day, provide what Tommy wanted in spite of any of my new physical limitation.
We drove back home, stopping for Tommy’s favorite NJTurnpike meal, ARTHUR TREACHERS FISH AND CHIPS, mainly for the hush puppies. We also stopped and met one of my favorite Phillies fans, MRS. PHANATIC. Later that night, I got my own special treat and met Vance Worley of the Philadelphia Phillies.
Going forward is still a work in progress. But for this one day, I was determined to control my problems, not let them control me, all for Tommy.
In all, any extra physical effort created by my lung disease was mitigated by Tommy’s happiness. That can make you forget the world’s troubles, let alone your own.
PREVIOUS PULMONARY POSTS:
Pulmonary Rehab Tales 8/10/11
Pulmonary Rehab 101: 1 Of the Future
Tomorrow Starts The Next Phase: Pulmonary Rehab And Education
Expecting Expectation, Getting Ramblings
Those Three Words