Thursday, July 16, 2009

"And on the seventh day . . . "

"And on the seventh day . . ."

Cystic Gal took a nap.

It was just the day before yesterday that I wrote The Vow of the Cardio, and only yesterday that I revised it. Yesterday. The seventh day that never was. My entire reason for making The Vow of the Cardio was to break my bad habit of taking a day off from formal exercise. I do this every week. It is like a mental block or a secret desire to complain the next day or something. It is ridiculous. It is inexcusable. Yesterday, I DID NOT WORK OUT.

Yesterday: I sat in the sun for 1 hour, 15 minutes while reading; I took at 2 hour long nap; I fooled around with my blog here and there and all day long for certainly an hour or so total; I talked on the phone a lot; I made a contract for a gig coming up; I started the process on getting another contract for my new colleague; I had my friend T-Money over and even actively thought, "it is a perfect amount of time to work out, while she drives over!" BUT DID I? OH NO!

And my lungs were double mad at me for this decision. They were wheezy and making a crinkly noise by the time I went to bed despite my airway clearance. They were an f-in' nightmare this morning. They were glarpy and glorpy during rehearsal. They gave me shit during airway clearance today. They were pissed, and I could not blame them. My lungs can be real bitches when they've been ignored and lied to.

Of course, there is another side to this. Looking over my list of the Top Ten Reasons Not To Exercise With CF, I left one off, which I will now add. My rationalization yesterday is that my life comes first. Meaning, my social-spiritual-emotional-artistic LIFE. My LIFE comes before my health. I stay healthy so that I can live my Life. I don't live my Life to prove that I can stay healthy. This, I know, is something that not all CFers, CF parents, or CF caregivers (medical or non), agree with. They would say, "You have to stay healthy so that you can live your life," which on the surface, sounds true. Well, it is true. You have to physically stay alive so that you can continue any kind of a living breathing life whatsoever. However, my life with CF is about choices, grande sweeping conceptual ones like "My Life comes before my Health," and smaller ones like "I really want to spend time laughing with my friend tonight. I'm really enjoying this. I don't want her to go home yet," or the opposite, "I'm not going to that birthday party. I simply cannot. I have to stay home and take care of myself tonight."

The way that I take care of myself on one day may mean to stay up late hysterically laughing with my girl friend talking about boys (and yes, I'm older than 15), and some other day it may mean skipping out on an event I was really looking forward to, in order to work out and do meds and really push the airway clearance.

I will never be the CF patient who chooses only the second option. I will always live my Life first.

This got me thinking, how did I get here? Why do I feel so strongly about the Life element in my . . . well, life? Here is the first chapter of Cystic Gal: the future book or something.

Until my mid-teens I was under the care of physician Dr. Lewis E. Gibson and his nurse, M-huggy. His name is probably the only real doctor's name that I'll use on this blog, and I use it now because he passed away in 2008 and I know inexplicably that I will only say complimentary things about him. He was a pioneer in CF medicine for a lot of reasons, including his invention of the sweat test used to diagnose CF, and his study of many of the common practices in CF care including the use of mist tents on patients in the 1970s and prior years. During the time that he practiced medicine, he saw the expected age of mortality for CF patient go from younger than ten years old, to older than thirty. CF went from a "childhood disease" to a "genetic disease affecting 30,000 adults and children nationwide." I think of his mind as an extraordinary timeline filled with data, pictures of patients, difficult conversations with patients, patient conversations, wellness, illness, death and Life in CF with its successes, failures, and choices made in CF care.

A side note: Dr. Gibson often told the same stories over and over again. You will know a patient of Dr. Gibson's if you can get his account of where "the shot heard 'round the world" was fired from. He told me on more than one occasion that his motivation for studying the long-term use of mist tents in CF was not really motivated by the moisture levels in the lungs and bacteria growth and all that, but that, "it just didn't seem right anyhow," and "practices like that can do a lot of damage to the patient's sense of normalcy." He was interested in getting rid of the mist tents because they were terrifying to look at and made the kids feel like they were dieing. Oh, and they were actually helping grow the Yukkies. That too. Dr. Gibson cared about how the science served the patient, not just how the patient reacted to the "best science."

When Dr. Gibson retired, he wrote a poignant yet professional, emotional yet instructive letter to families and patients under his care. Though I don't know for sure (and I'm sure somebody could look it up), I doubt his practice had a great attrition of patients from year to year. He cared for me for 15 years from the day he met me at 6 months old and wrote, "Baby [CG] in good spirits reporting her chief complaint to be recent diagnosis of Cystic Fibrosis," until his retirement party in 1995. He cared for my sister for approximately 18 years until she left for college. He cared for my God brother until his lung transplant in 1994. My family and others made extraordinary sacrifices to remain under his direct care.

In his letter to families, after approximately fifty years of crafting, evaluating and revising CF care in his centers and for others, Dr. Gibson wrote a letter that reminded his patients to put their Lives, their families, their relationships, their happiness first. I am paraphrasing now, but will revise later - he said that care should never become so costly, so time-consuming, or so personally overwhelming to patients or families, that patients are not able to enjoy life.

I will always put my Life first because I want to enjoy Life.
My Life keeps me healthy.

(which is not, truly, the reason that I did not exercise yesterday. I did not exercise yesterday because I was being a bloggy, tanning, phone chatting brat. But I think this line of thought that I began here, is more valuable than that particular Epiphany.)

Goodnight. From Day One,


  1. Great Post! Very well said! Sounds like he was a great and very smart/knowledgeable doctor!

  2. Alright, let's start from the top! Starting tomorrow you will comply with your contract 100%!!!!!

    I get what you're saying about the life issue. I've been able to "get around that" by having my job and life revolve around the computer by day (so I have no excuse NOT to do my treatments) and then wake up earlier than I'm used to to get another treatment in. I think it's all about finding ways to adjust and shape our lives to put ourselves in the best position to stay healthy and do our exercise/treatments. I have a CRAZY life, and it's not always easy, but I know in order to be CRAZY, I have to stay on top of my airbags :)


  3. Fabulous post! And so unbelievably true!!!! Life should come first. I'm on your wavelength with that one cyster!

    I view taking a one day a week break from exercise as a good thing to give your body rest. But this is also coming from the girl who can only exercise 3 days a week due to work. I commend you on your desire to exercise so much more!!!!!!!!

    Like Ronnie said...start tomorrow!! errr today!!!!!!

  4. I actually was unaware that Dr. Gibson passed away :( CL

  5. Me too until I went googling. Isn't it weird? He died in 2008. :(

  6. I like this post :) and I am one of those that agree with your philosphy.


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