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Friday, November 20, 2009

This and That

It has been a long few months for me, between working on my master's thesis and dealing with some serious cardiac issues. As a result, I never wrote some of the entries I had intended to write never. So I'd like to take this opportunity to update my readers on some of the goings-on in Winheld's World.

I visited with my friend and former neighbor, Branden, in mid-August. Despite his physical disability, he has now lived independently for more than two years, and I wanted to check out his place. Though he is several years younger than I am, we got to know each other when we used to share paratransit rides.

After being on a long waiting list, he was able to move out of his parents' home into an affordable, fully accessible apartment (see photos) in a housing development for people with physical disabilities in Philadelphia. Living on my own is something I have always hoped to do. But beside the fact that there is such a shortage of affordable accessible housing in general, it would be a bit more challenging for me because I require nursing care and cannot be left on my own. Still, I was encouraged to see that there are options out there. Meanwhile, I plan on visiting Branden again -- the guy has a fully stocked refrigerator!

In early October, I attended an engagement party for my friends Sarah and Vinny. Sarah and I have known each other since 7th grade. Sarah was the new girl in school that year and practically every guy, including yours truly, had a crush on her! I was pretty shy around girls in those day, but because she lived around the corner, I always made sure to pass by her house in case she was around. Over the years, we have remained good friends. Not only did she come up with the title for my book, but she is also the subject of a humorous anecdote in the book. So it was really wonderful to be in attendance at her engagement party. I've gotten to know Vinny over the past few years and we always seem to hit it off well. July seems like a long time away, but I hope with all of my heart that I will be there to watch them walk down the aisle together.

Finally, in recent weeks, there has been a changing of the guard with my caregivers. First, I lost my long-time evening attendant, who moved out of the area. Then, one of my nurses, who was not only a good nurse but was also available on Saturday evenings so I could get out and socialize with friends, quit in a squabble with my nursing agency.

The details really don't matter. But the point is that in the course of two weeks, I lost two really good caregivers to whom I had grown close. I'm not one to hold a grudge. I appreciate all that my nurses and aides do for me and when it is time for them to move on, I always wish them luck and hope they stay in touch.

The good news is that where one road ends another one begins. My other aide who works in the morning recommended a friend to fill my evening hours and she turned out to be extremely pleasant and dedicated. As for Saturday evenings, a new nurse that had recently come aboard offered to take those hours. I immediately agreed in light of the fact that she is an excellent nurse and we get along well. It helps that we are fairly close in age and she is also a rabid Phillies fan like I am.

Of course, training new staff requires some energy and patience on my part and unfortunately, as I have grown weaker in recent years, it has become a little more difficult. In the end, however, it's always good to see some fresh faces, especially if they are good caregivers.

Thursday, November 19, 2009

For Your Listening Pleasure

I borrowed my nurse's Simon and Garfunkel CD this week and I haven't been able to stop playing it! The music is like an old friend you haven't seen in many years but whose company you always enjoy.

"Mrs. Robinson" used to be my favorite Simon and Garfunkel song, but "The Boxer," seen above, has replaced it as my favorite. The lyrics seem to speak to the inner boxer in all of us, still fighting the good fight when everyone else thinks you're down for the count. My inner boxer is alive and well. Is yours?

Sunday, November 15, 2009

Biggest Losers

Every year, my friend Rob and I get together to watch an Eagles game -- and every year, the Eagles manage to lose, whether it be on an incredible 63-yard field goal with two seconds left or simply with an uninspired loss. Since Rob and I are such a lousy combination, we decided to get together this year with our mutual friend Marc. Turns out that we are all losers together, as the Eagles fell behind the San Diego Chargers early and were never able to recover.

But it wasn't all bad. After all, you can never beat chicken wings and cheesesteaks! Seems that in my old age, I have become quite the eater. And it was a lot of fun spending some time with my old buddies. Whenever we get together and talk sports, it's as if we are teenagers all over again, as we recount the games and players of our youth. We also had the opportunity to do something all Philadelphia fans are very good at: complain when our team stinks. But when we were growing up, the thought of seeing the Phillies win the World Series, let alone the Eagles playing in multiple NFC Championship games, was pie in the sky. Things have certainly changed on the local sports scene since then, but true friendship is always a constant. However, if you want the Eagles to win, don't let the three of us watch together!

Friday, November 13, 2009

Defibrillator Dude

Since starting this blogging thing three years ago, I have met some very interesting people. Scott Sands certainly qualifies as one. Some of you reading this already know Scott, who is 43 and also blogs about living with Duchenne muscular dystrophy at Scott Sands Alive. I have learned a lot from him, from fighting for the care I need to learning how to look fashionable with a tracheostomy. Plus, it gives me hope to know that you can live into your 40s with DMD at a time when, sadly, guys with DMD are typically only living into their mid-20s at most. Scott has helped me through some tough times, usually by giving me a (virtual) kick in the ass! He also wrote a very nice review of my book.

If you haven't paid a visit, Scott Sands Alive is a must read. People think I'm funny, but Scott is hilarious. He also pulls no punches about this life that he and I and countless others live. It is a life that was in jeopardy for Scott this week, when he experienced some frightening cardiac symptoms.

As I can tell you first-hand, you can be the toughest S.O.B. in the world (and Scott is) but when it's your heart, it's a scary thing! The good news is that Scott is now an official Defibrillator Dude, having undergone successful surgery this morning to implant a defibrillator in his chest. Sounds like he will be back to blogging very soon.

Welcome to the club, my friend. May your heartbeat be regular and your shocks be few!

Tuesday, November 10, 2009

Just a Little Bit Further

After submitting the first draft of my master's thesis a little more than a week ago, I received feedback from my advisor that was positive, but nonetheless indicated that I had some work to do. With a week to make the necessary revisions, I thought it would be no big deal.

But as last week wore on, it began to sink in just how much things had changed for me since I began my master's program in urban studies back in September of 2000. Gone was the strength and energy that had once allowed me to push everything else aside and complete my work, no matter how long it took to get things just right. Now, I have to be more vigilant about my health, which takes away from the time that I have to work. Even when I have the time, my energy often betrays me, thanks to my weak DMD heart and the medications I take to sustain it. And after getting shocked 18 times by my internal defibrillator on one very scary night in July, I had to make sure that I did not allow myself to get too stressed out! So I tried to work at a slower pace, taking frequent breaks. It was highly frustrating, but I knew that (like Red in the clip above from my all-time favorite movie, "The Shawshank Redemption") if I had come this far, I could come just a little bit further.

By yesterday, with a deadline looming and on the verge of exhaustion, nothing was going to stop me. And, if only for a moment, I was able recapture some of my old magic, pushing myself every time I wanted to take a break. Just after midnight, I submitted my paper. We'll see what happens, but it sure was nice to visit with my old self and to know he is still within me and I can channel him from time to time!

UPDATE: My advisor was paper now goes to the rest of my thesis committee for review...