My Brother Tommy On His 43rd Birthday..Stop Growing Up So Fast

I have been hearing about August 11th 2013 from my younger brother Tommy since August 12th 2012.

That was the day after his 42nd birthday. Yep, Tommy loves his birthdays not only because he is the center of attention (not that he isn’t the other 364 days of the year) but because the attention comes from so many people who know and love him..

I wrote a bit about him on his 41st birthday and you can find that blog post here…

BIRTHDAY WISHES 2011

Plus, take three minutes and give a listen to Tommy at Busch Gardens Williamsburg. As you will find out, the music of Barry Manilow has meant so much to him as he has grown and dealt with all his life issues. We went to Williamsburg in 1991 and he wanted to do the Karaoke Studio that was there. He picked this Barry Manilow song, sang it totally from memory and frankly, knocked it the hell out of the park. This is personally so amazing and beautiful to me…

Tommy Hickman singing I MADE IT THROUGH THE RAIN by Barry Manilow

And if you are so inclined, you can wish him a Happy Birthday on his Facebook page here…

TOMMY’S FACEBOOK PAGE

He will be paying more attention to his Facebook page since we bought him his own Samsung Galaxy Tab3 Tablet. He won’t have to wait for a computer any longer and he definitely won’t wait.

Tommy means so much to me. He is both my brother and my joy. He is the reason that I laugh, cry, get mad, get glad, worry, smile, celebrate, dance, laugh, and love. He has been through so much in his life, so many medical issues that have affected his development and almost took him away from us. So much challenge and yet all he gives back is love.

Instead of gushing on, I’m just going to post some of my favorite pictures of him. Indulge me as I shed a happy tear watching my forever brother grow up.

adijultombaby

Tommy at about 1 year old, I am about 15 and my sister Julie (who still wears that coat) is about 7. You have to love my fine hair and my fine loud shirt.


There is more to read. Just click here.

Pulmonary Tales: “Air” Travel

I love to travel. I cannot afford to do it much, and a lot of my past travel has either been by plane for video store industry functions, or by car for many vacations. I love to fly, even as the flights and airlines have become more and more crappy.

However, because I also love the journey as much as the destination, I also love to go by car. First, you actually see places you never have before, even if it is from the speed of an Interstate. Second, you control the journey, from departure to detour to final arrival. Third, you control the environment and atmosphere, listening to music or radio that you want to hear, talking with others in the vehicle, stopping and looking around to get local flavor along the way.

Maybe strangely, I like to drive the entire distance, making stops every couple of hours. I also love late night driving on an Interstate. No rush, no large volume of traffic, and the night seems to dull the rumble of traffic to a tolerable volume.

I’ve driven to Orlando and other Florida cities many times, with an overnight in the South Carolina areas. I know all the silly “South Of The Border” billboards, some of the better places to eat that don’t smack of “tourist trap” and many of the local snacks that you pick up to fuel the journey. I have driven to Atlanta from Philly once straight through, no overnights, in order to take my Dad down to see his sister who was gravelly ill. Because I drove, I saw some wonderful small towns that looked just like Mayberry. I saw kudzu for the first time. And, I ate at a couple of wonderful local places with real food.

Recently, travel has been much rarer, mainly because of the loss of work and my lung disease. This has restricted me financially and physically, plus my layoff and retirement from the home video industry took away all of the business reasons for me to travel. A couple of trips to New York City to take my brother Tommy Hickman up to see his friend Kelly Ripa on “LIVE WITH REGIS AND KELLY” for his birthday and a couple of trips to Central PA to see my Dunder Mifflin Infinity friends (Yeah, I’m nuts about NBC’s THE OFFICE, a well).

As a person (I really hate the word “patient” since I am still a person) with Interstitial Lung Disease, I now have to make choices tempering my desire with my reality. As a person with Interstitial Lung Disease, I also have to find the info I need in order to travel as smartly and comfortably as possible. There is so much I have to learn about my ILD, and sadly, so little actually real life support info out there. I get great care from my team of doctors at the Penn/Perleman Lung Center and at Lankenau Hospital, but finding people with my illness and my needs is tough to do. ILD/NSIP is not one of the lung diseases that are the subject of a lot of public talk, as is COPD, lung cancer, or asthma.
That means I have to dig for info.

Next year, my niece, Julie, is getting married in Disney World in October. She and her fiancée are Disney freaks (Like Uncle, like niece). I intend to be there. I would not miss this for anything. However, now the journey turns from leisure to medical necessity.

The following year, my nephew Shawn is getting married there. Runs in the family!

As much as it is convenient to fly, I do not know if I can fly or if the airlines could accommodate my needs, if any. Knowing the changes in cabin pressure and altitude, there are dangers to myself that may not be there for a healthy person. The air pressure alone could fail to provide sufficient oxygen for me, even though I do not need oxygen when I am seated or simply standing. Any sudden change could be catastrophic for me. In addition, the length of the flight can be a concern,

The airport environment itself should not be a problem, since I can arrange a cart ride to the gate, and can also be diligent in arriving early for check in. However, besides the flight, I also need to transport oxygen tanks for use while I am away. Since I would be in a theme park environment, this would require a supply that might equal 1 tank a day.

Airlines do not allow you to bring your own oxygen. That means that if I needed it in flight, I would need to arrange with the airline for the oxygen supply, and this is an additional cost. There is no guarantee that I could be approved for a rechargeable portable oxygen concentrator.

To prepare for the possibility of the flight, I would need to undergo testing that would include tolerating simulated altitude changes and pressures. I would need to make sure that my lungs can handle the oxygen gas exchanges and other lung functions without any danger. I would need to make sure that I am comfortable and confident in my abilities.

Or I could drive.

While I still do not know exactly how long distance auto travel will affect me, it does have my advantages. Anything I require goes in the car, as well as luggage that might cost me $50 or more to check on a flight. My in car and out of car meals are real meals, not snacks. I may sit in a traffic jam, but I won’t get stuck on a tarmac. The in-car entertainment beats inflight hands down. I have room for my butt in the seat and no one will recline their seat back into my knees. Bathrooms along the way will be bigger than a broom closet and my poop and pee will not be blue iced and maybe dropped on an unsuspecting town along the way.

I leave when I want. I control my time, I control my arrival, I control my journey.

And if a medical emergency due to my lung disease occurs, I can get help without panicking and inconveniencing a flight nor having to wait until we land. That means a lot, especially since I still have a lot to learn about my disease. It’s a brave new world, and yes, a bit scary. However, I can see as much of the world as this disease will let me, or I can always wonder what it would be like to travel again.

In this case, I’d much rather do than dream.

And Alec Baldwin can ride shotgun and play WORDS WITH FRIENDS as much as he wants.

Birthday Wishes And Pulmonary Dreams 8/11/11

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