Pulmonary Tales: Crazy In A Birthday Way


Crazy In A Birthday Way

On Dec. 6th, 1955, at 8:31 PM, a crazy guy came into this world. He probably came out blowing raspberries, but out he came anyway. The same year, this crazy guy’s favorite animated film LADY AND THE TRAMP was released and the original DISNEYLAND opened for the first time.

In 1955:
* Marian Anderson become the first black singer to perform at NYC’s Metropolitan Opera
* The game of SCRABBLE made it’s debut
* Ray Kroc opens his first McDonald’s
* BLACKBOARD JUNGLE opens in theaters, causing an rock and roll uproar
* The WARSAW TREATY is signed
* THE $64,000 QUESTION premieres on ABC
* GUNSMOKE begins its run on CBS
* JAMES DEAN is killed in a car crash
* OKLAHOMA is the first 70MM film shown in theaters
* ROSA PARKS refuses to give up her seat to a white person on a city bus in Montgomery, AL and is arrested.

56 years later, I love, admire, and respect those things and a lot more from 1955.

CRAZY IN A WAY THAT NO ONE ELSE COULD BE is a line from my favorite Barry Manilow song ”ALL THE TIME”. Yep, I love Manilow music. I’ve been a Fanilow ever since my little brother Tommy started to love his music and respond to the rhythms and the words. This song is the story of someone who has always been blind to what he has. He constantly searches without stopping to see that he may already have what he needs. He is crazy in his own unique rhythms and thoughts and actions. He is not nuts but just too driven to stop for a second.

As I battle this Interstitial Lung Disease and work to delay the inevitable for as many years as possible, I also am “crazy in a way that no one else could be”. I’m still crazy in my dreams and expectations, but this craziness is not tempered with reality. Reality intrudes all too often. Reality must be obeyed. However, “crazy in a way” people will always challenge reality, sometimes successfully, sometimes not. But challenge they will, and always will.

As this disease progresses, it is crazy in a way to think that something that will eventually get progressively worse can be turned into a positive. It is crazy in a way to think that something that physically disables your ability to do some basic daily things can be held at bay by exerting yourself as much as possible. It is crazy in a way to dream of doing what you used to do or what you were once capable of with your oxygen buddy now tagging along. It is crazy to think of and mourn the loss of the past without using that to drive your future as far as you can.

And it is crazy to want to sit and mope on your 56th birthday but you do it anyway. ALL THE TIME is about missed opportunities, missed connections, missed chances and missed craziness. But it is not about regretting them, it is about embracing them and moving on. That is what today is like for me. Missing what I had and could have had. Embracing my dreams and not letting my crazy in a way reality hold me back from trying.

It is a daily struggle turning 56 when you don’t know how much farther you will count. It is crazy to hope to find 10, 20, 30, or more fingers and toes to count as high as you can dream. It is crazy in a way to think you can tackle your own personal Everest going forward. But it is crazy in an irresponsible way not to remember the outpouring of love and support from family and friends both near and far. Just a check of my Facebook and Twitter feeds will show you how crazy in a way it is to have such treasured people along with my on my journey.


Today I had a good checkup with my primary care doctor and on Monday I see my lung specialist at Penn Lung Center to see how our crazy in a way method of attack on this disease is going. I still have my maintenance workouts twice a week and Bryn Mawr Hospital. Thanks to a good friend, I am going to tackle my crazy in a way fear of large crowds while wearing my oxygen by going to the PHILADELPHIA FLYERS game on Saturday.

If you want to read more about my lung disease, check out this link from the MAYO CLINIC.

Mayo Clinic Interstitial Lung Disease Info

I am turning my attention to developing a support network among other ILD patients so we can share our crazy in a way life. There are so few out there for my disease and frankly very little real world knowledge of it.

And I am going to try to enjoy my birthday in my own crazy in a way method. That will involve family and friends.

in a wonderful way, that ain’t so crazy, is it?

Born on Dec. 6th: Judd Apatow, Larry Bowa, Dave Brubeck, Tom Hulce, Joyce Kilmer, Agnes Morehead, Baby Face Nelson, Randy Rhoads, Ryan White, and Steven Wright, among others

ALL THE TIME by Barry Manilow.

All the time I thought there’s only me
Crazy in a way that no one else could be
I would have given everything I own
If someone would have said “you’re not alone”

All the time I thought that I was wrong
Wanting to be me but needing to belong
If I’d’ve just believed in all I had
If someone would have said “you’re not so bad”

CHORUS
All the time, all the wasted time
All the years waiting for a sign
To think I had it all
All the time

All the time I thought there’s only me
Crazy in a way that no one else could be
I can’t believe that you were somewhere, too
Thinking all the time there’s only you

All the time, all the wasted time
All the years waiting for a sign
To think we had it all
All the time

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Expecting Expectations, Getting Ramblings

The item pictured to the left is a portable oxygen tank.

It is my friend. It is my constant companion now when I am out. It is the bane of my existence and the reason for same.

It is no different than millions of others that are needed by millions of people. It may not always look like this. It may be a brace, a wheelchair, a replacement limb, or hundreds of other assist devices.

But this is mine, and it is personal, and it carries my expectations.

Expectations are a funny thing. They can be realistic, yet what defines realistic? Is being “realistic” simply staying within safe parameters? Does having unrealistic expectations mean that they cannot be achieved, or that you simply are afraid to try.

When I joined Twitter(and Facebook), I had varying expectations. I wanted Twitter to allow me to connect with others who might find me interesting enough to think to hire me. I wanted to keep in some sort of contact with my past acquaintances and industry , to try to find a way back into my home for 27 years. I wanted to experience others and to possibly learn.

However, my expectations at the beginning kept me guarded as to who I really was and overly worried about how who I was would be perceived. Those who knew me recognized me, but those who didn’t were approached cautiously.

Essentially I tried to become visible, yet remain anonymous. I expected the same from others.  My expectations were sorely misjudged. I have found that those who I meet on Twitter and Facebook have been some of the most supportive, fun, and caring people yet.

Yet, while I have my expectations, they have theirs, and sometimes, they collide. I follow a lot of sports bloggers, and my expectations of them were of a fun brotherhood with a shared passion. Instead, I found great writers who sometimes seem to expect to be seen as the “go-to” source.  I’ve also seen this degenerate into mean spiritedness and denigration of blogger by blogger, blogger by sportswriter, sportswriter by blogger, et al.

My expectations for one big happy family of sports lovers had to be modified into individual expectations of each writer.

The same goes for my expectations of the rest of my friends on there, and wonderfully, I can say that I’ve developed a very entertaining and comfortable set of friends on there. Some have become very close to me over the last year.

Back to my oxygen tank. I expect we will be inseparable for a long time, at least while outside. I have no idea what to expect about my condition going forward. I choose to set my expectations so that I will always strive to maximize my limits and that I will remain useful and vibrant, even without being able to do work like I used to.

However, I expect to always secretly hate the oxygen tank, if only because it always talks first. Just like a silly hat, people notice it before almost anything else. That means my past method of introducing myself, with a handshake or a “Hello, how are you?” has been compromised by this thing in my nose and on my shoulder.

Even walking in public, it will draw glances, which I do not want. No, a child will not think I am an astronaut. They will ask mommy or daddy in a whisper what this is. It is unavoidable, and I don’t expect to ever shake that feeling.

However, my expectations in public, past that initial stare, is that you see me as you see anyone. Except for a true physical barrier, don’t treat me any different. Treat me as a friend, a customer, a neighbor, a seat mate, a person.

Yes, my life is vastly different now. Money is extremely tight, living costs means that I move into my sisters house, and some dreams and expectations of what I could have accomplished and where I could have traveled in the next  ten years and beyond have to be greatly altered.

However, my expectation is that I will live that life to the fullest, surrounded my great friends , like many of you. And my family.

My final expectation is that on Wednesday, when I finally turn in the key to the apartment, and say good bye to over 7 years of memories with my Dad there, I will break down and bawl. I expect to finally feel the emptiness of the situation, the unavoidable nature that it has to end.

I will be a wreck.

However, my expectations are that life will go on, that I will eventually be comfortable in my new home, and that friends now will remain friends forever. And that what I shared with my Dad with be present in every one of you that I know.

That quarter pictured after this post is the last thing my Dad really worried about. He dropped it as he stumbled backwards and hit his head on Nov. 30, 2010. Even as the bump on his head grew, he attempted to reach down to pick it up. At that moment, that quarter meant the future to him.

It has remained right there since then. It will be the last item I take from the apartment.

I expect that it will always be with me, and that Dad will always make it more valuable than gold to me.

365. Your indulgence, Please.

Your indulgence, please.

365.

A full year. A long time, and yet, one of the shortest times when too much happens.

For the uninitiated, it has been 365 days since I was informed that my services were no longer needed at my previous job, my home for 9 years . It was not performance related, but they decided that they didn’t need what I brought to the table. Fair enough. I beg to differ, but it’s not my company anymore, and it doesn’t look like the company I knew anyway. More power to them.

I’ve spent the year missing the friends much more than the job, even though I loved my job (and frankly, was the fucking best at it). Yep, I miss my industry choice of 27 years, which is not even looking the same anymore.

In that time, I’ve engaged in the new pastime of millions, looking for a job when there aren’t any.

I’ve lived on half of my past income, and made necessary cuts, changes, and actions to try to get to a manageable level.

I’ve improved my mobility by getting my knees replaced, something that was needed for a long time.

I’ve then had my mobility slightly hampered by a lung issue that we are still exploring as to origination (Not a smoker).

And here I am.

365.

Tomorrow marks 366, and as my sister (and I) hope, I finally move past this. Probably not.

Because, again, friends are missed most. Because of my bad habit of throwing myself into my work, most of my friendships were centered around the workplace. I’ve met some great (and not so great) people there. However, once the common workplace bond was cut, those friendships fell to a very few, but a very appreciated group of people, who I won’t name here, but they know who they are.

In retrospect, no surprise there. They have their jobs to do and less in common with me now, and that is fine. Some have very little in common with me, but we were acquaintances, not friends anyway, so no problem.

However, I have found tremendous comfort, support, and yes friendship in other places, many that surprised me. These people are not coming to visit in person every day. However, I talk with them through the magic of Twitter, Facebook, e-mail, and even that old fashioned phone. However, they are amazing to talk with, accomplished in their own fields, fascinating in their own experiences, and understanding in their wisdom. They have common experiences to myself, and when I am most down, they gently remind me that others are in similar straits, too, but I am not alone.

My wish is to meet and hug everyone of them in person, and yes, there are too many to name and maybe hug, but I may go on a hugging tour one day. A few deserve special thanks.

Of course, my family, especially my sister Julie, leads the list. I need to do a separate blog post to introduce you to her.

My friends from DunderMifflinInfinity , a silly virtual workplace for fans of the NBC show THE OFFICE. I’ve been on it for three years, heading a “branch” in Allentown, and doing things that are fun and frustrating. This was my first experience with the role playing phenomenon.

However, I can truly say that I’ve made some spectacular friends there, friends that read my feelings and moods, and help me work them out. I’ve met many of them over the last three years, and delightful doesn’t begin to describe them.

At the end of this post, I’ve included something that I’ve never shared, a video that they did for me earlier this year when I was really struggling with feelings. I’ll shout out to Casavon, Puckaroo, DJKW418, TheSouthernDandy, Butterfly, Jasania, RabbiJack, MikeKrisza, BigMacDaddy, JanetLizz, LindaLooLoo, TheOfficeScribe, Jossie, Alica, BoredBrenda and the others from Allentown.

Dabaum, Feef, JimAndCyndi, MaryBurham, Konamouse and others from other DMI Branches have been so important to me as well. And yes, I know them so well by their screen names, but trust my their support and my love back is genuine.

A big secret: none of them live in Allentown.

I’ve made some good supportive friends on Facebook and Twitter, and tomorrow, 9/17, they will be the focus of a very special FOLLOW FRIDAY from me.

However, I do want to thank PhilaDAVia on Twitter for being so gracious and supportive of me. He spurred me to start the blog back up, he has common sense words of advice and support, and he knows hockey like no other. He also writes his own articles and blogs on Hockey from numerous angles, and you should follow him. He also has great music taste, and is a secret OFFICE fanatic.

So, while I started this with the intention of being cranky about my current state (and who knows, that may still come up), maybe this is the first step to moving on. Maybe not.

However, at least I have my friends to guide me.

Thank you, friends.

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