Reflections on chronic illness: Revisiting LungMutiny2010

It’s been seven months this week since I wrote the following post during my bout with pneumonia, known by the Twitter hashtag #LungMutiny2010. I re-revisit this post now because I’ll be speaking next week to medical faculty about writing reflectively outside one’s comfort zone. This post was more of a personal journal entry but it became very well-received by others who suffer more chronically from illnesses. The comments threads for this post and its predecessor remind me to think more fully, considerately, and compassionately for those with chronic illnesses, especially those you cannot see.

This post first appeared on 28 February 2010 at the ScienceBlogs home of Terra Sigillata.

A few weeks ago, I wrote a post about being stricken with pneumonia and my reflections on what it must be like for people who live continually with chronic illnesses. I was surprised by the response from many readers, quite a few of whom I’ve never seen comment here, who voiced understanding and even relief that a “normal” would take the time to reflect on what their life might be like.

Well, my illness is continuing even longer than my pulmonologist had expected and this has evoked for me a whole new layer of emotions. I write the following not for sympathy or concern, but rather for the Medicine and Health channel of ScienceBlogs to give voice to those much worse off than I who may not otherwise have a voice in our national health care dialogue.

A note of warning for those who read me regularly: the following will include foul language, disgust, hopelessness, and possibly disturbing thoughts you may not normally associate with me. These are the rants of a blogger who has been confined to bed for just over six weeks. As a result, the rest of the post is below the fold.
At the end of the Fall 2009 semester, I had occasion to move my office in a university research building that had only been open since June 2008. As I boxed up my books and files, I noted a layer of dust and detritus that one would not normally expect to see accumulate in 18 months anywhere, even in a barnyard or vacant library. With raspy breathing and chunky green sputum, I made my first visit on December 20th to an academic medical center’s urgent care facility where I was diagnosed with bronchitis, perhaps exacerbated by my underlying asthma that I oddly developed at age 30 while living in Colorado.

The Spring semester began and I launched into directing and teaching freshman Biology and junior Biochemistry with great zeal and enthusiasm, going so far as to using my corticosteroids and short-acting β2-agonist bronchodilator pharmacotherapy to illustrate the convergence of chemistry, biology, and physiology in biochemistry. In my 22 years as a health sciences educator, I have found that personal misfortune often provides for great teaching opportunities that serve students long after they leave the classroom.

The day I became short of breath and nearly passed out walking to class gave me great pause and, consequently, led to my next visit to the doctor. For those who don’t know who’s behind this loosely-guarded blog pseudonym, I’m a 6+ foot tall, 200-ish lbs, mid-40ish white guy of Eastern European ancestry who comes from a long line of hearty, blue-collar workers. Other than the asthma, I’ve largely been healthy and even did a lot of high-altitude trail running while a prof at Colorado, including twice finishing the Breckenridge Crest Mountain “Marathon,” a 25-mile (40 km) run that averages over 11,000 ft (3350 m) above sea level. In that league, I was largely a mid- to back-of-the-packer but I was always a finisher in any race from 10 to 25 miles. A fun day with my lab buds would be a 6-hour jog above timberline in the ranges outside of Denver. Even now, a flatlander in the North Carolina Piedmont, I still easily enjoyed 2 to 3-hour trail runs just to ward off the 40s.

[I should take this moment to note that the Breck Mountain Marathon is organized by and benefits the Breckenridge Outdoor Education Center (BOEC), a remarkable group of people who came together in 1976 to provide enriching outdoor experiences for people with various mental and physical disabilities, serious illnesses, and at-risk youth.]

So, when I was diagnosed with pneumonia after a chest X-ray on January 20th, I was crushed. First, because I just felt so bad and had trouble even walking across the parking lot; second, because this meant I would have to impose upon junior faculty in my department to add to their already unreasonably weighty teaching loads and pick up my slack. I have always been for equity among faculty effort, moreover that senior faculty should disproportionately pick up bullshit tasks so junior faculty can concentrate on their research. Now that I am in a position where I assign some faculty responsibilities, I feel as though I was letting down my colleagues and detracting from their own pre-tenure career development.

Hate myself, academic hypocrite: Exhibit A

My lungs then laughed in diabolical dismissal of the weak attempts against them with a course of oral corticosteroids and a fluoro-4-quinolone antibiotic. When I grew worse, not better, I finally got to see my pulmonologist on January 29th when it was decided I need to stay home to recuperate for four weeks.

And that is when I wrote my last blog post – when the black hole of depression in the middle of my mattress began to consume me. For two weeks, I was nearly unaware of the world’s happenings, save for a few off line communications from my blog friends and other colleagues. My boss’s biggest concern was that I file for medical leave so that I not get paid after I had long-exhausted sick days and vacation time, castigating me for not planning more effectively. My wife and little daughter had long since stopped sleeping in the same bed with me because my coughing fits were too numerous and disruptive. Even the PharmBeagle deserted me, especially during the hum of the albuterol nebulizer that must sound like a siren to beagle senses, only to reappear when she smelled the life-giving matzah ball soup brought to me by Scicurious during one of her travels.

Rock bottom, it seems, was when I began developing cases of cough syncope, a vasovagal response where one loses consciousness during severe coughing episodes. My cardiopulmonary colleagues can expand more accurately but, as I understand it, strong coughing puts excessive intrathoracic pressure on the vena cava and other major vessels (the jugular vein, carotid artery?) leading autonomic feedback mechanisms to recognize blood pressure as rising too high. In response, parasympathetic flow from the vagus nerve slows the heart rate (and I would assume other nerves cause large vessel dilation) in order to reduce what is perceived as transient hypertension. As a result blood supply to the brain becomes inadequate and loss of consciousness results. While lying down, this was largely inconsequential. I simply awoke in the same general area of the bed wondering where I was and what time it was, to slowly recognize I must’ve passed out. While a relatively rare occurrence in medicine, most of my literature searching led me to understand that 95% of cases occur in men. For me, one of those fortunate few, it became such a common occurrence for 10-14 days that I grew to understand and prepare for it.

However, on February 7th, it happened as I was trying to get out of bed with my Taylor 414-MA acoustic guitar – I had taken to playing guitar lying down because it was easier than trying to read a book or laptop computer, though my wife now jokes that the next time I play live I will need to request a cot from which to play on-stage.

The way I remember it is that I sat on the edge of the bed with the guitar set on my left and a coughing spell that caused me to pass out and fall sideways to the right, hitting the right apex of my head on the fine, North Carolina hand-crafted mahogany bedrail and fall to my knees, jagged guitar strings from the headstock cutting my thighs and an unusual flow of blood from my scalp.

I cannot stand the sight of my own blood yet I somehow made it downstairs to turtle up on the kitchen floor and beckon to my wife and daughter, the former of which is a twice-board-certified MD. So as not to freak me out more, she kindly did not tell me that one wound was deep enough to see that fat pad between my scalp and skull but that she would rather try and stop the bleeding at home rather than subject me to a seven-hour wait in the emergency room. Today is three weeks later and I still have a scab from that divot.

My little girl was so so sweet and very strong, at least when in my presence. She brought me water, knowing that Dad faints at the sight of his own blood, and touched my face with the gentle love I can only imagine coming otherwise from an angel.

What in the living fuck had happened to me? I had a brisk, four-mile New Year’s hike through the forest only six weeks earlier, I had quit drinking alcohol nine months earlier in an attempt to improve my health, I even starting eating more of these green things that people in the South call, well, greens. I was not overweight. I did not have high blood pressure. I don’t have diabetes. I have no family history of pulmonary disease. Other than my alcoholic father who died at 58, both sides of my grandparents lived to 83 to 98 despite working in factories and chemical companies before there was a thing called OSHA.

Yet here I was, laid up like someone thirty years my senior with a divot shorn out of my head and a chunk of mahogany on the bedroom floor.

Looking back at my blogging records, the only thing that brought me out of my silence was the UAHuntsville shooting tragedies which, sadly, brought this blog more readership in one week than I had experienced ever in any single month of writing since December 25. I learned first hand the journalistic credo, “If it bleeds, it ledes.”

But in the middle – in the hours in bed between seeing my wife and daughter, I have been crushed, lonely, and weighed down by a sense of meaningless existence. All of this while being very well-medicated with an antidepressant/antianxiety drug regimen developed 12 years ago by innumerable permutations of empirical experiments with two of the most revered psychiatrists in my community.

Last week, we decided to try a new, environmental approach agreed upon by my pulmonologist and his awesome advanced practice nurse. I was reasonably well enough to be driven out of town from our 20-year-old home with the 20-year-old carpeting to my in-law’s surgically-immaculate tiled and wood-floored home near the Atlantic coast.

However, I had found out earlier in the day I should not return to work as expected on March 1st because cases of cough syncope had returned, I still couldn’t speak for more than 10 min, and attempts to walk 200 ft to get the mail and walk up the stairs winded me so much that I needed to sit down.

Before we even left the house, I was crushed. It’s my wife’s birthday and was her mother’s last weekend and a family celebration was planned. I felt like such a fraud, such a useless piece of humanity, that I screamed at my wife out of anger at myself, saying many hateful and hurtful things you would not expect me to say, and insisted that I stay home to wallow while she and my daughter went off to visit the family. It wasn’t until my daughter came home from school, tears in her eyes, and crawled on my bed saying that she’s rather have me take the trip with her and Mom just so she could check up on me every few hours than to know I was at home alone and not be able to bring me water, or soup, or shrimp and grits.

So, I agreed to the most uncomfortable three-hour ride of my life.

But before doing so, this is what passed through my mind in the period of about ten minutes: I am a woeful demand on my family and an even worse excuse for a human being. My wife deserves a better husband; I neglected to buy her a single birthday present even while being stuck in bed with my fucking wireless laptop; for my daughter, she deserves a far better father who can go out and play in our infrequent snows and show her the North Carolina mountains. I am an unconditional failure at the two jobs most meaningful in my adult life. I am a disappointment, personally and professionally. A professiorial disappointment; the epitomy of tenured deadwood. A worthless piece of cargo who simply takes from others and cannot give anything in return. What I do give to others is pain, sorrow, frustration, anger, disdain. I wrote this week about the hydrogen sulfide suicides and felt that I could understand how the victims could have reached that point. I hate my life and sometimes hope that I have another case of cough syncope and don’t wake up.

But (Mom, especially), realize that I have the necessary moments of clarity to break through this all briefly enough to realize that it is the frustration and cognitive dysfunction of this longlasting disease that causes me to feel this way.

For many of you with chronic illnesses, you must have some combination of these feelings in your own personal context with more regularity than what I just experienced over the last two to four weeks. It is hell, perhaps even worse than some terminal illnesses in some cases because you never know when it’s going to end.

But I know that I have it relatively good. For those of you with chronic pain, migraines, cluster headaches, autoimmune disorders, HIV/AIDS, cancer, inherited metabolic disorders, cystic fibrosis – you add to the list – I have immense respect for you in living what I have felt for pretty much all of 2010 thus far. It is you for whom I write this painful personal expose. Compared with all of your suffering, I am imperfect. An embarrassment even.

But I do want you to know that there is one “normal” out there, one who reaches a few ten thousand readers a month, who “gets it” just a little.

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4 Responses to Reflections on chronic illness: Revisiting LungMutiny2010

  1. John Wilkins says:

    I have early stage emphysema, and chronic pain (for 30+ years) from a damaged foot and finger, and I still don’t know what it is like to have real chronic disease. I agree with you here…

  2. Misha says:

    I understand what it is to wrestle with Churchill’s “Black Dog,” but I would still argue that you’re still way too hard on yourself. That said, this remains a beautiful and moving post and well worth repeated readings.

    m

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  4. k says:

    Thanks for the repost – as Misha said, it’s well worth rereading.

    I’m glad you’re well, and hope you never have to walk that wretched path again. I’ve had pneumonia myself, watched my late parents suffer through it many times in their last years, and although IANAD, diagnosed my Japanese homestay mother with it (guilted her into going to the doctor the following day, and learned my suspicions were confirmed). It is a truly horrible, life-sapping, feel-like-you-want-to-die disease. You may want to consider getting a pneumonia vaccination.

    Chronic diseases are truly stinky. I’ve got a few, and mine aren’t particularly bad, all things considered (hypothyroidism, asthma, bipolar disorder, insomnia, et al.). There is a fine art to managing them without letting them take over your life. That can be one of the hardest parts…