Archive for the ‘Living With CF’ Category

The Gift

Thursday, November 26th, 2009

Hey Everyone,
So we are having a fundraiser with light food/drinks and some musical entertainment. A list of performers will follow once its confirmed.
Tickets are $20 and to RSVP please use the button below. Along with buying tickets, you can also donate to the cause. Tickets will also be available at the door.


The Gift

The Gift

# 100

Saturday, August 1st, 2009

From Brian to Bobby

July 29, 2009

You know, I’ve been thinking about how healthy it is for us to be planning out this long term, Brian and Bobby film project together.

A few years ago, after having a couple setbacks (the small bowel obstruction and then later the mycobacteria infection), I unwittingly lost my vision for the future. For a person who has a lot of plans, a lot of projects, after 4 or 5 months of getting sicker and sicker, I was thinking about things two years, three years into the future ….but not much more. I think I was starting to discount that I had that much time left in me! (The mycobacteria infection went long and really hit me hard and made my days pretty shittybefore we started treating it.)

Then, a couple of weeks into treatment for the infection, I was in to see Dr. Hadjiliadis (MY Dr. H!), and I don’t even remember what we were talking about, but he said something to the effect of “talk to me about that in 10
or 15 years!” The smile on my face might have weakened a little, and I think I said something like “well, 10 years is a long time…I don’t know that I’ll be here in 10 years…”

What happened next had a profound effect on me, my outlook, and ultimately my vision for the future. His response was very sincere, and even “warm”, though not patronizing in any way. He said, “Oh… I fully expect you to be here a lot longer than THAT!” It was strange, the power his words had for me. I felt a huge weight lifted. Next thing I knew, I am driving home…I was doing things like laughing out loud….I was talking to myself (interview style… I do that sometimes) about my plans for when I’m older. It opened up my entire outlook. It instantly rejuvenated my vision for the future. It said to me that I could start picturing it again.

Not long after that, I began writing my business plan for what would become Weathervane Music (the music nonprofit I’d been dreaming about with my friend Bill for YEARS), and well, WV has really helped “anchor” my vision for the future. I think it makes me healthier, in a little way.

I think having a project that stretches several years into the future effects our vision. We see our ideas alive and flourishing, and therefore we see OURSELVES alive and flourishing. This is very important. Like I said, we
never know when our time is up, but at the very least it doesn’t HELP our longevity to think it’s right around the bend.

So I am really happy that we can plan this project together. I think it improves our outlook and that can only be positive.

How you feeling this morning? We good for video chat with Devin tonight? If we need to reschedule, no problem!

B

# 101

Saturday, August 1st, 2009

From Bobby to Brian

July, 29th 2009

Man that is a great story. I can totally picture what you’re talking about and the story you told!
I agree, it’s like an extra motive to keep going and putting one foot in front of the other no matter what. That’s how I try to live…to just KEEP GOING. To plow through whatever life throws my way. Kind of like a ninja with samuri swords just screaming at the top of my lungs making chop-suey of anything that gets in my way.
I think this is really going to be great too. I can just feel it. Can’t wait to see how working with Devin turns out and what we come up with.

I’m at a dealership getting my car inspected. There’s this guy sitting about ten feet away from me. I keep hocking loogies discreetly into my “spit bottle”. I wonder what he thinks? If anything, at least he has a story. I’m at the point where in situations like this I don’t care anymore. Even though I know how disgusting it is. :-P
See u guys tonight!
b.

# 93

Thursday, July 2nd, 2009

From Brian to Bobby

July 20th, 2009

I hear what you are saying. Truth is incredibly important. It’s the basic building block of freedom, but it’s so illusive, and I do believe “nuanced”. I really can’t define it, when I think about it. I have a sense of what it is, a strong sense, but my inability to clearly define it is troubling.

I think I might make a distinction that, by my attempt to say what it is, “truth” seems like the starting point for “self-determination”. Where we feel cheated is when some other persons definition of truth hampers our ability to be free to do what you want to do, to make decisions for ourselves, to live the way we want to live.  It seems truth comes in the presense of freedom, self determination, and justice, but take any of those away and truth seems to be compromised.

You hit me with a mind bender! I mean, I can fully understand your desire to have accurate, unbiased, information, especially when it comes to being able to live how you want to live. It’s occurring to me, though, that sometimes “truth” can appear to be “in the eye of the beholder”. Take for instance the war on terror. The US sustains an attack, many innocent Americans are killed, and as a nation we’re scarred for life. So to many of us, it seems that “truth, justice and the American way” needs to be protected at ALL costs. The most extreme take it to another level, where they think they are fighting for truth, but really they are avenging  “our lost innocence”. Next thing you know we have prisons filled with people who didn’t do anything in Cuba. Somewhere along the way “truth” was bastardized, though arguably in the name of “love” and a desire to “return to innocence”, ignorant as it may be.

And yet, “truth” when it comes to simple facts, is really easy to maintain. It’s the opposite of falsehood. A simple fact such as “it’s night time” is easy to find concensus on when it’s midnight, but as soon as “night time” is up for interpretation, or becomes metaphorical, then all bets are off. Midnight is 12AM, and “AM” means morning to us generally, and morning and night seem opposed.

For some reason I have these opened up:

http://en.wikipedia.org/wiki/Allegory_of_the_cave

http://en.wikipedia.org/wiki/Metaphor_of_the_sun

I sound like I am making argument for argument sake. I’m really not. I’m just perplexed.

So that’s great you moved in with your dad. That’s in Malvern, right? I like that photo you sent. Is that the view? How’s your rib? How are you doing in general? What’s your exercise schedule like for this week?

B

# 94

Thursday, July 2nd, 2009

From Bobby to Brian

July 20th, 2009

Yeah I think it’s like you said, “truth is in the eye of the beholder”. I like the Alllegory of the Cave story you sent. It’s kind of a complicated way of saying the same thing, but an interesting way nonetheless. It brings to mind (of all things) Roger Clemens. Whether he did steroids of not (and evidence strongly suggests that he did) the fact is, HE believes -truly believes- that he did not do them. I think that even if he did do them, he has truly convinced himself that he hasn’t. What would it take for him to realize that he did them? Probably a video of him shooting up in the training room. And if he saw that, could he even handle it? Would he go off the deep end? Who knows.

But the whole concept of “the truth” really is a mind bender and it’s a concept that, like you said, has so many interpretations unless it directly opposes another falsehood. Who knows, though we all were not created equally (in the physical sense) so what I see could be completely different from what you see. I mean, really what exactly is the color Blue? Also it ties into all sorts of conceptions of time and fear and happiness…

In the end, I suppose we just see what we want to see and leave the rest up to someone else to figure out, or obsess about, or maybe not even care about. I kind of took from Plato’s allegory that ultimately in the end he alluded to the fact that we will all answer to a higher power since how can decisions be made by people who have never had to experience any of these situations? My friends dad once said (and this is breaking it WAY down) “All rat bastards suck the pipe in the end.” A maybe not-so fitting conclusion to this email, but it’s what I’m signing off on.

My exercise schedule is going well! That private yoga lesson was a little too much for me the other day so I am still REALLY sore but I am still doing my Quigong and more of the easier yoga poses that are doing wonders for me. Yeah my Dad’s place is in Malvern, but really in Valley Forge, lot’s of space for my mind to create. I’m TRULY TRULY lucky and blessed. I do my exercises amongst the pines as Oscar runs around chasing butterflies and having fun with the kids.

Ok talk to you soon.

Love/Bobby.

# 95

Thursday, July 2nd, 2009

From Brian to Bobby

July 20th, 2009

I never really understood that Allegory of the Cave, to be honest. As I was reading your first email, I kept thinking about it… “maybe this is what it’s about?” It may or may not be…

For some reason, also, I consistently find situations where I want to reference the game “rocks – paper – scissors”, and this may be another. Sometimes I think truth is relative in the same way a rock smashes scissors, paper, covers the rock and scissors cut the paper. In more cases than not, the “beholder” may have three points of reference to qualify the truth, as opposed to two (ie, x or the opposite of x).

And yeah, Roger Clemens… The truth is relative to what you absolutely BELIEVE it is.

So listen…with yoga, you have to work through that soreness. At least stretch out everyday, even if you are not going to do a full practice. This is where that “dissociation of pain” thing works really well. If you are stretching your hamstring, and it is really sore, be gentle but look at your leg and say “there’s my leg…it’s stiff…that’s the feeling of my leg being stiff”. It really works. It somehow lets you ease past it. Obviously, be careful and again be gentle. By a week from now, you won’t have to deal with as much stiffness.

B

# 96

Thursday, July 2nd, 2009

From Bobby to Brian

July 21st, 2009

Both allegory’s were kind of “out there”, but I thought the one about the Sun was REALLY strange. I still don’t quite understand the concept. We will hopefully figure it out one day ;)

I am seeing what you mean about the “distraction of pain” technique. William also told me a technique where you focus on your area of pain as the color Red. I don’t know why but for some reason it distracts me from the pain and helps me concentrate on deep breathing. I am going to have another yoga session with a different instructor soon and have her focus on gentler poses and more meditative breathing. That seems (for right now) to be the best for me right now.

I’ve also been drinking these protein drinks from Odwalla (the ones you see at whole foods and stores like that) that have really been helping too I think. Nutrition is SO important I’ve realized slowly over the years, it’s unbelievable. I’m finding little things like these protein drinks and how important staying hydrated is. And REST. Our batteries (especially mine) need a lot of recharging in order to have energy and feel good.

I hope you’re good, and I’ll talk to you soon!

Bobby.

# 97

Thursday, July 2nd, 2009

From Brian to Bobby

July 21st, 2009

Yep. I hear you on the nutrition, hydration and rest. They almost seem too easy and non-technical to be as effective as they are. Not to say I don’t believe in more natural and holistic methods, but when the details of your health include so many medicines and machines, you can be pleasantly reassured by the simple things.

I bought a 32 ounce water bottle (the kind that doesn’t leach polymers every time you drink from it). I know that if drink two full containers then I am getting what I need. And I find it effects my digestion and my lungs equally.  I think of the saline I inhale (10%) in the same way. I never miss it, morning or night.

And as far as rest goes, I find the times where I forsake my sleep schedule are when I start to get run down. That’s the hardest schedule for me to maintain.

B

# 90

Wednesday, July 1st, 2009

From Bobby to Brian

July 5th, 2009

A WALK

My eyes already touch the sunny hill.

going far ahead of the road I have begun.

So we are grasped by what we cannot grasp;

it has inner light, even from a distance-

and charges us, even if we do not reach it,

into something else, which, hardly sensing it,

we already are; a gesture waves us on

answering our own wave…

but what we feel is the wind in our faces.

Translated by Robert Bly

Rainer Maria Rilke

Do you read a lot of poetry? I don’t really but I’ve been reading a lot of Rilke lately. His poetry really speaks to me at this point in my life. It’s one of those things that I wish I had known about much longer ago but came along at just the right time in my life.

I love that poem above. It’s the epitome of what I believe life is all about: the journey. the last line, “what we feel is the wind in our faces” really hit home in a literal sense oddly enough. When I’m in here (the hospital) I go to physical therapy and walk on the treadmill. It always goes pretty well but I never feel challenged really. Then, when I walk the halls I always feel like i exert more. It’s because I’m resisting the wind (or, in the hallways case, the air). You need that! You need the resistance, the challenge, the LIFE!

Chris worries about me. He worries that my life is going to be a constant struggle with breathing and getting around. You really inspired him with the struggles you went through and how you came through all right. I’ve been struggling a long time, but I feel so motivated right now and I feel so good about getting back to my 2004 health, like you said before. And hearing Chris talk about you has really inspired me. These aren’t just empty words, I really mean them. I’m looking ahead to the “sunny hill” and embracing the inner light that is gesturing me towards my goals. Already the past few days have been great. I started practicing some new yoga moves and deep breathing techniques. My need for oxygen has gone down, and I’ve been FEELING good for the first time in a long time.

I’ve always had innate thoughts that I am going to keep going no matter what. That I’m going to break through whatever life puts in my way and until the day I come across something that is too big and too strong for me there is nothing I can’t achieve. My dream is to walk the streets of Paris with the person I love. I’m in training for that, whenever that day may come.

# 91

Wednesday, July 1st, 2009

From Brian to Bobby

July 5th, 2009

Lovely words, my boy!

I don’t read a lot of poetry. Unfortunately I was scarred by a pretentious poetry workshop in college. Before that I liked Khalil Gibran a lot. Who do you recommend? Rainer Maria Rilke has been on my list a while now. Any others?

I have a strong belief that you are going to feel at the very least a minor (if not MAJOR) burst of energy from more yoga. I started last Monday, like I mentioned before, and the first thing I realized was how weak my diaphragm had become. I don’t know if you’ve really been able to isolate that muscle, but as soon as I went to use it actively, I thought of you. You may know this stuff already, so forgive me if I am speaking the obvious, but when you use your diaphragm all by itself it can have the appearance of just pushing your stomach out really far. There’s an exercise in Kundalini yoga called “Sut Kria” (I have no idea how it’s spelled), where you sit on your knees, resting your but on your calves, you fold your hands together, point your index fingers and, sitting up straight, you point your index fingers straight up above your head. You then proceed to say “Sut” as you flex your rectum and your navel and then say “Nam” as you relax your rectum and navel. You try to say it with a force. When you get the hang of it you can do it for several minutes and what it demonstrates to me is pure diaphragmatic breathing. You never really have to stop and take a breath. The exercise itself IS breathing, but it doesn’t really look or feel like it.

I thought of you, anyway, because I wonder how much you may gain by working your diaphragm into all your breathing all the time? When I was doing yoga every day a couple years ago I found that when I walked to the studio or did anything, for that matter, I was continuing that mode of breathing and it was great. When I stood in mountain pose the first time Monday morning, I got very little out of my diaphragm in that first moment. It wasn’t until a few minutes in that it was an effective part of the breath. Now, 5 days later I can use it just sitting here writing you an email.

No one knows how long we’ll last, but there’s always the sayings about “siezing the day” or  experiencing the moment and “living actively”. When I do yoga I feel like “the moment” is defined by a single breath (either in or out), and the quality of that moment/breath improves the more I do it. So however long I last in this world, this is one way of improving the moments between now and the end. And Jeez, it’s only been 5 days and my whole body…my legs, my back, my chest… They all just feel like they “fit” together better. It’s like they are holding each other up, rather than hanging off of one another. My flexibility in one week is 30 times better than what it was. I had a lot of help from Amy years back, so I feel like I have a thorough sense for the principles. If you can, see if you can take a class, or at least go through one of the videos with a person who can straighten you out here and there.

I am glad Chris felt better talking to me. He’s a great dude. I thanked him for so obviously being such a good friend to you. Everyone can benefit by friends. It’s always a major asset to have someone there for you – You get that extra burst of motivation to be well and stay well for HIM, which is a good thing at times when you might not be able to muster the strength on your own behalf. But that guy (Chris, that is) is extra special in the friend department. You guys are really lucky to have each other!

So I am psyched you are FEELING GOOD. You should invest as much as you can in staying that way, if not in FEELING EVEN BETTER! I am trying to do the same.

Sounds like we can make a pact!

(Pinky-Swear!)

Love

B