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.
Abel, sorry to hear that the misery continues. Wishing you well.
Bill and I send our get well wishes!!
Beating up on yourself...not good...time for some cognitive re-framing of the situation ;-)
And...some internet shopping...poof, bday gift accomplished from bed-- and then you can celebrate late but when you are feeling up to the occasion!!
Hope you feel better soon!
@belle - you're awesome! You did get my long overdue e-mail, right?
@anjou - yes, a visit with you and Bill would do wonders for me, esp if it involved some clandestine wine tasting (shhh!) You two are touchstones for what is important in life. Thank you for your best wishes.
Pharmboy, this has been educational - I hope in your clearer moments you realize that everyone you think you're disappointing knows that you're in a temporarily encumbered state that you could not possibly have prevented, and furthermore than every one of us gets a turn at being the encumbrance at one time or another.
Consider this: being relied upon feels good. Your family loves you and your colleagues regard you warmly. They almost certainly consider it their privilege to support you during your illness just as you support them at other times.
Please try to stop fretting and focus on letting your recovery take its course!
Dude, pneumonia is like depression: just get over it and get on with your life. Don't be a worthless potato and lie in bed. Shake it off. Be a man.
BTW, I had pig AIDS that responded to tamiflu that simultaneously morphed into pneumonia that responded to clarithromycin. I only had about three weeks of feeling like dog poop, rather than months.
Glad you're better.
I had bronchitis several times over the past few years, often lasting weeks where I couldn't sleep for the coughing, which added a layer of exhaustion to the whole surreal experience. Then, when I tried to run again, I couldn't breathe: turns out I had lost almost 45% of my lung capacity.
Now I'm so out of shape from months of recovery, then feeling bad because I couldn't run, and then feeling good that there was an actual reason I couldn't run, and then feeling bad again because a reason didn't make it easier to actually run...now the thought of struggling to run again fills me with dread. I gained weight, lost muscle and conditioning...
It sucks, and I wasn't as ill as you.
Get better; promise yourself that when you are and someone else is sick you'll have sympathy and empathy and be the most awesome nurse ever; and concentrate on getting well.
Both my parents and a sibling have struggled with chronic illness, and it is so hard to watch, let alone go through. My limited experience says to just adjust to the new normal as best as you can, focus on doing what you need to get better, and remember to thank those around you. They also need care, and rest, and breaks. It can be all-consuming and painful and exhausting to be a caretaker, so massages or spa weekends can be great bday gift (hint hint).
Hope you're feeling better soon, Abel. Illness and pain are infuriating and depressing. And it's not surprising, given the damnable need our brains have for a constant supply of oxygen, that not being able to breathe properly can trigger an emotional and cognitive trainwreck!
BTW, I can only imagine how the dust situation made things worse. I have a horrendous allergic response to the molds that grow in Drosophila cultures -- and I worked in labs that handled the little banana suckers for nearly five years. By the end of it, my car and apartment were infested with the same molds, and I was having regular nighttime bouts of laryngospasm (one of which eventually sent me to the ER to make sure my ribs weren't broken after my husband had to do a Heimlich while neither of us was fully awake.) Even after I left the lab for good, it took a month of Singulair and albuterol before I could breathe without feeling like someone was scrubbing my trachea with a Brillo pad. When the spring flu epidemic began, I was literally terrified to leave my house.
Glad you're giving your lungs a chance to heal. Rest up, enjoy the guitar, and let the family pamper you until you feel better!
sorry to hear you are still feeling like shit. 'sickness' and associated signaling (cytikines, glucocorticoids, etc) have some very extreme effects on both cognitive and emotional brain centers, so these feelings are not abnormal. sucky, but not abnormal. I hope the weather turning better may help your cause. When you are feeling better, you can come by and visit the 'farm'. the beasts around here have positive effect on health and affect. ;)
Glad to see you are getting better.
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.
yeah, because you can really plan in advance to get antibiotic resistant pneumonia and complications. Idiot (the Boss that is). What does he do to staff who have been in traffic accidents? Chew them out for not foreseeing they could be hit by an out of control semi-trailer?
Middle son has had a long term bout of lung-something or other that has exacerbated his previous very mild asthma. After multiple rounds of antibiotics and decongestants to break up the gunk in his lungs (on top of the industrial strength anti-asthma medications), he's still way below par. But it's involved a lot of back and forthing to doctors and we feel almost as exhausted as MiddleOne.
No need to feel useless, this lung stuff can knock you around for ages.
It sounds like you are suffering from classic Sickness Behavior. You know, when the cytokines climb into your brain and tell you 'Dude! You're sick! Lie down and sleep. And for extra protection, be sure and snap at anyone who comes near. And just to make sure you do that, we'll make you feel completely worthless.' Stoopid cytokines.
The fatigue and depression from a major illness can be worse than the illness itself.
And! You're on corticosteroids and a fluoro-4-quinolone antibiotic??? So poison on top of Sickness Behavior? Yikes! Of course you feel like crap. You're on (practically) chemo! It's a race to the bottom, to see if you, or the bug, dies first.
Yes, it's even more humiliating that you were really fit before and that you're weak as a kitten now. All you can do is endure the humiliation, survive this trial and recondition later. I mean really later, like maybe as late as next year. For now, you'll have to stop fighting, stop trying to shake it off and let your body heal.
I'm pretty certain that none of this muttering is news to you, but I hope you can use it as a reality check. You are really, very, sincerely sick and everything you feel is what any ordinary, reasonable person would feel under the same circumstances.
Humble yourself before the power of the soft pillow and get better sooner.
Hope you take a turn for the better. We're pulling for you.
Hm, new building, lots of dust - from the newly installed air conditioning perhaps? It would be really interesting to see if there's more people than would be expected with recent respiratory problems in that building.
Wow, hadn't realize that pneumonia could lay someone out like that. But then my SO had had it and he was laid up for weeks too.
Luckily I've never had pneumonia. Instead I get inner ear issues. Like now, I have a slight sinus disturbance and sure as all hell, the vertigo triggers off that. I was making banana pancakes this morning and bang, hit me out of the blue. Luck on my side again, the SO was there to catch me and I recovered from this one in seconds.
I had whooping cough for the first time as an adult in 2008 (diagnosed correctly only because I asked for the test) and it took four months from start to finish to work through my system. My own emotional experience was much like yours: feeling useless, a burden, a waste of resources. It's insidious and hard to fight. It's hard to remember either how being 'normal' felt, or to picture once again being well.
Hang in there.
I hope that soon this will all be just a memory and you will feel your old self again. We are thinking about you.
I've been dealing with similar, though not nearly as severe, breathing issues for the last few months that I also suspect have to do with my office space. I just bought a humidifier today and am about to contact facilities to see if they can look into things. I have had pneumonia before (several times) and don't want it again.
Abel, I am so sorry for what you are going through and for the emotions you are experiencing. Your emotions are understandable given your situation, which makes you a normal person. Anyone would feel the way you are feeling in your shoes. Thank you for sharing what's going on in your head, and best wishes for an improvement in your health.
Hang in there. Probably adding to the infuriating feelings you have right now is the idea that what you're experiencing emotionally is very normal. When I had meningitis, I was out for months. Then, when I went back to work, I would literally cry at my desk because I could only manage to stay upright for two hours at a time and I wanted so badly to start contributing to life again. I was convinced that working would make me feel better about myself. When what it really did was keep me sicker, longer. Don't give in to the lie, my friend. Rest. Knowing that when you're back in top notch health, you will flourish.
As one who cares for children' with chronic illness, I am amazed at how resilient the human spirit is.
Do what your doctors say, and take care of yourself. Remember, your junior faculty will be in worse shape if you are gone forever than if you are gone for 6 months...
one day, i hope to write about my own struggles these past six years, but until i somehow manage to do so, your essay here is as close as i've seen to how i view my own life. my heart goes out to you during this incredibly difficult time. good luck to you and your family and colleagues for dealing with this.
Abel, so sorry to hear about your prolonged illness, and especially the cough syncope and the scalp injury. PharmGirl, of course, will know the SCALP mnemonic from medical school, and I hope your injury "only" went into the dense connective tissue, and not through the aponeurosis to the loose connective tissue layer. I use scare quotes for only, because the C layer, unfortunately, contains the blood vessels and nerve endings (as you are painfully aware, no doubt). Some of the medical students wonder why we spend so much time emphasizing scalp layers in gross anatomy, but it's very clinically relevant. They'll undoubtedly spend some time sewing up scalp lacerations during their clerkships, and they'd better know into which layer to inject the anesthetic!
I'm sure most of your colleagues are sympathetic, and don't resent taking over your lectures and other duties. I had to take over a large medical school course unexpectedly two years ago, after the course director was in a bad automobile accident. It wasn't her fault, in any sense of the word, and it also wasn't her fault that her recovery took longer than initially expected. She was well-organized with her exam and lecture files, and I learned that it's important to do the same, in case something should happen to me, and someone has to take over my teaching duties. It can happen to anyone.
That dust and detritus in your workplace sounds bad, and I think someone should investigate. I'm in an older building, and there's black detritus that falls out of the vents on occasion. I've been told that it's fungal (ceiling tiles grow mold as well), and some people have claimed that it makes them sick. Future lawsuits would not surprise me.
What is it about pneumonia that kicks up depression? I was home with pneumonia for 10 days, though not restricted to bed, and despite my regular antidepressant I struggled with depression as well.
I don't know if it would be helpful going forward, but consider:
-- stripping the carpet out of your bedroom and replacing it with hardwoods,
---getting a new mattress and box springs and putting those mite proof covers on them the day you get them, mite covers on the pillow cases,
---removing any curtains and just using blinds on the windows,
----and switching all the bed linens to washable fabrics.
I've done all this BUT have a very low pile wool area rug in my bedroom.
Sorry your lungs are still full of crap. I know it sucks. I've had asthma since birth. It has waxed and waned over the years. I'm enduring a particularly nasty bout. I've had to sleep propped-up for over a month now. I have huge bags under my eyes from lack of sleep - I look like a cross between a raccoon and an old owl lady. Albuterol delivery via the nebulizer makes me shake so much the kids call me Momma Oogway. Husband, much to the kids amusement, has been taught percussion therapy and is beating the crap out of my back. The inability to consume alcohol with the Rx regimen is starting to piss me off. Plus there is something particularly revolting about the taste of lung boogers that have festered in the lower lobes for weeks...
I have coughed so hard that I've puked, wet my pants (there are some things that kegel exercises cannot compensate for), pulled ab muscles, sprained my back and whacked my head. There are days when I can't walk across the damn room without being exhausted, much less be mom or do hot science. I have to remind myself that it could be worse. Much worse.
Quit beating yourself up. Sneak that glass of wine. Hang tough. Get better.
Your whole life is basically fucked for three months -- you're laid up in bed for weeks, mired in depression, feeling physically and emotionally like shit shot off a shovel -- and here you are writing a difficult personal essay because it will help other people.
Yeah, you get my vote for the worst human being ever.
(Read that back to your depression the next time it starts in with the "you're a failure" bullshit!)
Not to be a Debbie Downer here or anything, but it has been my experience that recovery from episodes of acute or chronic yuckity yuck (of whatever type) is kind of a letdown. I look forward to it so intensely, and it takes forever, which can last a few hours or several months. Maybe even years, but I haven't been down that particular road yet. And when you do get better (and you will), nothing dramatic happens.
There I am, cursing the universe and my body, feeling like it's a good thing I can't get out of bed or I would surely kill myself. Then maybe I catch myself doing something I couldn't or wouldn't have done last week, or walking down the stairs without hurting myself, but I still don't feel, you know, great; there was no stunning and beautiful moment of healing, no bright line that divides sickness unto death from vibrant good health. Or even "normal."
Except that at some point I notice that I not only don't have [e.g.,] a headache, I can't remember what it felt like when I did. And I don't feel like dying is such a great idea. Which, now that I think about it, is a radiantly good feeling.
So that's my experience of it. Not much to offer in the way of advice, I guess, other than patience.
I can totally echo Nora Streed's comment.
Abel, dear friend, thank you for sharing this. I am so sorry you have to experience all this but very grateful you are able to talk about it with all of us. It just feels like such a cruel joke to have your good health, your normal body - your real self taken away from you and replaced with this sham, shambling, sick, sack of a being.
Wish I could give you a hug and bring over something for the family to eat.