What I Learned from Harry Chapin

There are relatively few people whose death has made me cry. I didn’t cry when my mother died, for reasons I won’t go into here. I cried several days after my father died, when I was alone in the garage of his house and saw his old golf clubs, jarring the memory of having caddied for him sometimes when I was a kid. He and I had been very close, but showing emotion had never been his thing; and I guess I had learned that from him. 

I also cried a few times when patients of mine died - a few times from me having become exhausted trying to save them, and a few times when their death was just so damned sudden and unexpected. This especially happened when I was a medical intern and resident, and death and dying were relatively new to me.

But I sat down and absolutely bawled, on July 16^th 1981, when I heard on the radio that Harry Chapin had died.

Who was Harry Chapin?  Many of you won’t know, because he died before your time... or because his music was never so main-stream as to be omnipresent on the radio. One song of his DID become a #1 hit, and that song plays regularly on the radio even today. That song – Cats in the Cradle – is perhaps one of the most thought-provoking popular songs ever written, one that calls every parent to be better. I can’t hear it without thinking about what type of father I have been to each of my four children, now all fully grown (my youngest just turned 17).

But that song and that life-influencing message isn’t why I cried for Harry Chapin.

Harry Chapin was a songwriter who didn’t write for the rich and famous, or the cool and hip. He wrote for those among us who are sad or lonely or old or sick... or all of the above. He wrote about justice and injustice. He wrote about the poor and down-trod. He was the ultimate champion of the little guy.  Once he released Cats in the Cradle and became financially secure for life, he dedicated himself almost full time to helping others, in particular the poor and hungry. Among all the performers of his day, it was he who spear-headed World Hunger Year, and was central to the creation of the Presidential Commission on World Hunger. When I saw him in concert, at the Greek Theatre in Los Angeles in about 1980, he was donating all proceeds from the sale of his book, and his share of proceeds from one out of every three concerts he performed to World Hunger. In all, he apparently supported 82 charities, and died driving a Volkswagen. In 1987, six years after his death, he was awarded a Congressional Gold Medal for his social activism.

But that’s not why I cried for Harry Chapin.

I cried for Harry Chapin because I actually got to meet him, after that concert at the Greek Theatre, standing in line with hundreds of others to have him sign the book of his I’d just bought.  I stood there for over an hour, waiting, and wondering if he’d eventually just announce that he’d have to leave to catch a light. But he didn’t leave until he’d signed every single book, including mine. And when I told him I was a songwriter too (though only 22 and completely unknown, and headed to medical school and likely never going to become a renowned musician), he seemed genuinely interested. He encouraged me to follow that dream, even if other things made me put it on hold for awhile. Even though I was a total stranger, one of hundreds he’d met one-on-one that night, he cared enough to spend time with me.

I didn’t even think to ask him for his phone number or address so I could contact him and get advice about one day making my music heard, because I was too awed just by meeting and talking with him. But I am confident he would have given them to me.  He was THAT kind of person. And until the day he died, I guess I dreamed that one day I WOULD contact him, when I was ready. Obviously, it is far too late for that now.

Just the other day, I happened to hear my favorite Harry Chapin song on a university radio station. The song, called Mr. Tanner, never would become a hit – like Cats, or Taxi, or W.O.L.D. – and it certainly would never appear on a major radio station today. But it was and remains a hit among those who love Chapin. In the song, Mr. Tanner is a small-town cleaner with a breathtakingly beautiful voice who sings quietly to himself while he works, just because he loves to sing. That image, of doing something just for the love of it, remains with me to this day. It is the reason I started writing seriously about 7 years ago; and, sixteen books and more than 400 songs later, why I continue to write today.

I don’t know if my books or my songs will ever hit a best-seller’s or top 50 list. Or have the impact that Harry Chapin’s did. But if they don’t, I still hope that some people get to read  or listen to them – and laugh a little bit, and cry a little bit - and then feel a little richer for it.

Harry Chapin wrote:

Oh if a man tried to take his time on Earth

And prove before he died what one man's life could be worth,

 I wonder what would happen to this world

My life goal is to live up to these words. And that is why I, like Harry Chapin, have tried my best to champion the little guy: those who have fibromyalgia whom the medical establishment have forgotten; those who are bullied in silence; those who suffer addiction; those who have mental conditions like autism and Down’s syndrome; and those who just feel all alone.

And that is why proceeds from all my books, like Harry Chapin’s, are being donated to charity. You can thank Harry Chapin for that!

Kevin White

Award-winning author 
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Latest Poll Results

Just over a month ago, I asked everyone visiting my website to answer a poll asking you all which drug or class of drugs had helped you the most with your fibro; and, thanks to several people being directed my way by Jan Chambers, President of the Fibromyalgia & Chronic Pain Association, and fibromyalgia book author and staunch advocate Celeste Cooper, we ended up with 125 responses.  Here are the results:

As you can see, no one drug did very well, and more than one third of respondents either felt no drug had helped or hadn't tried any. Clearly, then, drugs are not the only answer and the focus of fibro treatment must always be, as I've said repeatedly, trial and error and multi-dimensional. This starts with two things: (1) having a doctor, other health care provider or, best yet, health care team who BELIEVES YOU AND IS WILLING TO WORK WITH YOU; and (2) even before that, BELIEVING IN YOURSELF. Don't let anyone tell you your pain isn't real, or that it is trivial, or that you just need to snap out of it. Your pain is YOUR pain, not theirs. No one, not even some hobnob expert with 72 letters after his name and a pizza created in his likeness has the right to tell you how YOU should feel.

That said, you do have a high degree of control over how you feel and how you react to those feelings.   So believing in yourself is more than just believing that your pain is real... it is believing that you have the power to make a difference in this.

I am not ashamed to say that I have battled addiction in my lifetime... I came by it honestly, growing up in a household with two alcoholic parents, and then working myself almost to death for three decades before finally crashing down in a heap about 8 years ago. I hit rock bottom and all but lost everything (luckily, my family and friends stuck by me).  But then I was told that I had to make the decision to change.  Now, I'm not going to tell you that recovering from addiction is the same as recovering from chronic pain. They are very different. But I am telling you that, at some point, you need to have faith that things CAN get better for you... not perfect... your pain and fatigue may never go away entirely... but how they affect you certainly can improve and, with that, they themselves will improve.

And that leads to my next poll question, which is:

Do you believe that the pain and fatigue of fibro can and often do get better?

• Yes
• No
• Don't know

Go to my homepage and let other readers know what you think.

Kevin White, MD, PhD

Award-winning author, speaker & researcher

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Article Published

In case any of my blog-readers are interested, I just had an article I've written published in the Fibromyalgia Chronic Pain Association magazine called Fibromyalgia & Chronic Pain Life. It's the same article about Who Should Treat Fibro: Rheumatologists or Neurologists that's listed below. But the magazine has some other great articles too. So I encourage you to check out the FMCPA site.

Anyway, here is the magazine cover, etc.

Again, if you can't read the article here, because the print is too small, just scroll down a few posts to find it as a blog that I posted here on June1st. Either way, I hope you enjoy it.

Kevin

Kevin White, MD, PhD, multiple award-winning researcher, author, teacher & speaker

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Haddocks Anonymous

Here's another one of my Haddocks Anonymous comics for you. Enjoy.

NEW YOUTUBE VIDEO - WHAT FIBRO FEELS LIKE

Here is my latest video... a short but I hope poignant little video that looks not only at what fibromyalgia feels like, but how it feels to have fibro and not be believed.

I hope lots of non-believers and people on the fence get to see this one.

Note: No beanie babies were actually injured in the making of this video.


By the way, the song you're hearing is one I wrote and recorded to remember the 14 young women who died and 15 who were injured at Montreal's Ecole Polytechnique in 1989. You can listen to and download this song, for free and in its entirety, by going to the homepage of my website

http://thefibrofog.com

and scrolling down to the bottom right.

If you REALLY like the song and would like a CD of my music, which I recorded with my band WORTLEY ROAD, and which includes the song you just heard plus 12 others (10 of mine and two by the extremely gifted singer/songwriter and close friend Johann Kinting), go to

http://wortleyroadbooks.com

and scroll down until you see the cover:

The song is called DANS LE CIEL. And the CD is called GHOSTS OF THE CPR and features 4 Juno Award winners, plus Johann, myself  and Canadian icon James Gordon. Some other songs from that album are in my blogs (if you scroll back to some older posts).

Kevin

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FIBROMYALGIA & THE HIDDEN 'HOW TO' (What Harry Potter and Fibromyalgia Have in Common)

In April, I was off in Jolly Ol' England giving a series of talks in the lovely English Channel-side town of Chichester. About a month before I left, I was asked to come up with a name for my talk. So I sat down and did some brain-storming.  I wanted to make the talk reflective of being in England, especially since this was my first time there. But what did I know about England? Okay... they speak English. But that hardly seemed to help. Then I thought about Shakespeare and Sir Arthur Conan Doyle (the creator of Sherlock Holmes), but I still was not inspired. But then I thought of HARRY POTTER, and was immediately keyed in. It was PERFECT! And THAT is how I came up with the name of my talk.

You see, J. K. Rowling had her HARRY POTTER & THE PHILOSOPHER'S STONE; and HARRY POTTER & THE GOBLET OF FIRE; and so on.

So I came up with FIBROMYALGIA & THE HIDDEN 'HOW TO'. Pretty snappy title, don't you think?

“But what in blazes is a 'how to'?” you ask.

I will tell you. But first, let me go back - way, WAY back to my time in medical school, when dinosaurs still roamed the Earth and you didn’t need a bloody menu to order a cup of coffee. Over my four years in medical school, I was called to learn more stuff about more stuff than humanly possible - about thousands of different diseases... and hundreds of drugs... and dozens and dozens of ways to lose at hacky-sack (a game we used to play at lunch break in years #1 and 2). No matter how uncommon a disease was, our professors insisted that we learn all about it, as if our very lives hung in the balance. We even had 20 hours of lectures on parasitic diseases that almost exclusively occur in Africa. Heck! Rare in Africa and never seen at all over here... but learn all about it anyway!!! And within that endless diatribe of disease names and parasites and parakeets, I never once heard about fibromyalgia. Not once. Of course, it wasn’t called fibromyalgia back then. No one knew how to spell fibromyalgia in the 1980s, so they called it fibrositis. But I never even heard about THAT.

 And then my years of medical school ended and I was off to San Francisco to do a 3-year residency in Internal Medicine at a Stanford-affiliated hospital... and I STILL never heard about fibrositis. Not until the last couple of weeks of my very last rotation, when I heard about it elsewhere, and totally by accident.

I was attending a 2½ day medical conference for arthritis specialists in Napa Valley, California, the heart of wine country (so it’s amazing I remember anything at all). Over the first 2 days of the conference, I heard about rheumatoid arthritis, and lupus, and osteoarthritis, and psoriatic arthritis, and a little white mouse named Gilbert... but NOT fibrositis. It wasn’t until the final lunch on the final day, when there was a guest speaker speaking about a strange new disease, that the issue ever came up.

Now, I’ll be honest. If it weren’t for the fact that I was a dirt poor medical resident who couldn’t afford to pass up a free lunch even if it were dog food, I would have left the conference early to get home before rush hour, like almost everybody else. But I stayed for free sandwiches, and then half-heartedly listened to this moron talking about this new disease doctors couldn’t even see, while scarfing down a couple of free desserts. And, to be even more honest, I can’t remember for sure, but I probably didn’t even believe him. And I didn’t think about fibrositis again, until almost a year later.

 By now, I was 8 months into a 2-year Rheumatology fellowship program to become an arthritis and rheumatism specialist. And that’s when I met my first ever fibrositis/fibromyalgia patient, my first day working with a doctor who specialized in this condition. This patient was just like what that doctor had described at that final conference lunch... she hurt all over, was extremely fatigued, had headaches and mental cloudiness and other symptoms too... and nothing OBJECTIVE showed up on physical examination, and all labs and X-rays were normal. I didn’t know what to believe.  But then, later that same day, I saw my second fibro patient... who complained of the same things, and also had nothing OBJECTIVE on physical examination, and all labs and X-rays normal. And then I saw my third... and my fourth... and by the time I’d been in this clinic for a few weeks, I’d seen dozens... and THEY ALL LOOKED THE SAME. And that’s when I had a revelation:

Either fibrositis was real... OR there was some magical little pamphlet or book floating around telling everyone how to fake it. Not only that, but given statistics that suggested that fibro was quite common, this book had to be impossible for doctors, but ridiculously easy for everyone else to find.

And so I put all my superior intellect and training and best hallucinogens on the line and decided on the next logical step... I was going to FIND that book. Of course, we didn’t have Google back then, so I’d just have to go door to door.  I knew I might get beat up a few times, but I was a dogged little fellow and knew I couldn’t fail. But first, I knew that I couldn’t just waltz into people’s homes without a clear idea of what I was looking for. So I started brain-storming for titles. What might a ‘how to fake fibro’ book be called?

After puzzling and puzzling until my puzzler was sore, I came up with the following, inspired list:

·         How to Fake Fibrositis

·         Fake Fibro for Fun & Fortune

·         Fame, Fortune & Flatulence: A guide to faking fibrositis & irritable bowel syndrome

·         Fibrositis for Slummies

o    I was SO close to a bestseller on this one.

·         Fibrositis for Dumbie Doctors

·         Woe Is Me, Fibro Is Me: How to get sympathy from people you don’t even KNOW!

o    I had to discard this one after I met a woman who said: “My doctor says I’m just doing this to get sympathy. Sympathy from who? My husband’s left me. I live alone, have no family, and almost never feel well enough to leave the house!” She didn’t mention that she had no money to spend if she went out either.

·         What to Say & How to Act to Piss Your Doctors Off

And, my personal favorite

Beware that thumb!!!

Well... despite looking high and low, I never DID discover ANY of these books... and came to the painful realization... that fibro had to be real. It’s lucky I did too, because right about then I met a big burly and very angry female patient who said this:

“They’re still LOOKING for the head of the last doctor who told me that my pain was all in mine.”

      And that is how I ultimately came to be a fibro believer.
  
      And that, my fine feathered friends, is why I still have my head!  

Kevin White, MD, PhD

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RHEUMATOLOGISTS VERSUS NEUROLOGISTS... WHO SHOULD TREAT FIBRO IS NO SLAM DUNK!

My two youngest boys still live at home and both are heavily into watching the NBA basketball playoffs right now. Each evening, somewhere between 8 and 9 PM, they flip on the TV to some sports channel to watch the various teams slugging it out. But what would happen if they turned to Channel 30 and there was a game about to start... but neither team was willing to touch the ball – one team saying they’ve been playing the game too long and no longer want to; and the other not wanting to play because it just seems so darn difficult to win? And so, as everyone else watches in stunned silence, both teams line up at either sides of the court, not daring to step back onto the floor... and the ball lies immobile, untouched, and unwanted at centre court.

Something very much like this is happening in Medicine right now. The ‘teams’ are rheumatologists on one side, and neurologists on the other. And the ball that nobody wants is that sadly-misunderstood, sorely-disrespected, and often-disbelieved chronic pain and fatigue condition called fibromyalgia.

Why don’t rheumatologists want to play this game? For about four decades, they’ve been at the forefront of fibromyalgia treatment and research. But recently, that research has led the majority of fibro experts to conclude that fibromyalgia is not, as the name implies, a disease of muscles and fibrous tissues at all – and joints, muscles and fibrous tissues are much what rheumatologists treat. Instead, fibro is now largely regarded to be a neurological disease that affects certain parts of the brain and spinal cord that are responsible for interpreting and determining pain responses, as well as perhaps nerves themselves. We can actually SEE brain changes on certain specialized scans now, like PET scans and functional MRIs that show not what the brain looks like, but how active different parts of it are. And, to put it a tad over-simplistically... pain lights up! Because of this relatively-recent discovery of the predominant role of the nervous system, many rheumatologists are saying they no longer treat or even assess fibromyalgia anymore; and others are going so far as to hand the ball over to neurologists. “It’s your ball now!”

But, other than a small number of neurologists who call themselves functional neurologists, most nerve doctors don’t want fibro. Why not? Well, because fibro has proven, over the forty or so years during which rheumatologists and others have been trying to treat it, to be difficult to treat. Helping the fibro patient is no slam dunk. There is no insulin, as there is for diabetes. The list of drugs that are still prescribed to treat fibro is a very long one, which includes newer drugs targeted towards so-called neuropathic (nerve disease-related) pain, but also muscle relaxants, anti-depressants, anti-seizure medications, anti-inflammatory drugs, and both narcotic and non-narcotic painkillers. And there’s also physiotherapy, and massage therapy, and pool therapy, and occupational therapy, and relaxation techniques, and biofeedback, and cognitive behavioural therapy, and a host of other alternatives that should be considered. And many patients respond only partially, if at all, to these treatments; some are unable to tolerate any kind of medication or treatments like massage or exercise; and some actually get worse over time.

Adding to the complexity of treating fibro is that pain is NOT the only troublesome symptom. Fatigue is equally troublesome. And there are sleep problems, and mental fogginess (the so-called fibro fog), and headaches of all kinds including migraines, and irritable bowel syndrome, and intolerance to cold, and on and on. And many of the new kids on the block, the neurologists, want no part of this. “Take your ball and go home!” they say.

So who should treat fibro? Who should follow fibro? Who should continue to research fibro? Rheumatologists? Neurologists? Neither? Both?

My answer is... both. And I’ll tell you why.

There is no denying that the overwhelming body of evidence that currently exists points to fibro being much more a neurological than rheumatological (arthritis-related) disease. And, unquestionably, neurologists are better at managing and researching most neurological diseases than any rheumatologist.  

And their reluctance to treat a difficult-to-treat condition doesn’t fly either. How easy and satisfactory is multiple sclerosis to treat? What about ALS or Alzheimer’s or Pick’s Disease? And did Christopher Reeve’s first Neurologist say – “Sorry Mr. Reeve. But your condition isn’t going to be easy for me to treat... so see ya later”? I hope not.

They might say – “but we’re not that familiar with the tender point examination.” But the neurological examination is AT LEAST as difficult to learn as the musculoskeletal exam. And how hard is it, really, to memorize nine different paired points (one on each side, right and left) on the body to push on? Surely, that’s not too much to ask of a medical specialist, even if they are years into their career. Besides, the American College of Rheumatology has just endorsed new criteria for fibromyalgia that ‘do away’ with the tender point examination (which is another thing I disagree with, and have written about, by the way).

On the other hand - and this is my major beef with rheumatologists refusing to see fibro patients - whether fibro is a neurological disease or not, it often does not occur in isolation.  Those who have fibro have an INCREASED risk of a host of other, mostly rheumatological conditions - like osteoarthritis, and rheumatoid arthritis and lupus - which most neurologists would not feel qualified to treat or even diagnose. And what about the even more common localized musculoskeletal problems that co-exist with fibromyalgia – like shoulder tendonitis, tennis elbow, heel bursitis (also called plantar fasciitis), and patellofemoral syndrome? I once had a formerly very active elderly fibro patient whose disease flared up, big time, all because he developed bursitis in one heel and could no longer do his daily 4-mile walks. Luckily, I diagnosed this right away and got him to see both a wonderful occupational therapist and an exceptional foot specialist, named Dr. Potter, who certainly seemed to do magical things with feet. What would have happened to this elderly but formerly very active gentleman had his heel pain just been attributed to his fibro?

The fact is that fibromyalgia is a complex, multi-systemic disease that remains relatively poorly understood and managed. Many patients can do well, but this typically requires the efforts of several dedicated healthcare professionals, in addition to the patient’s own commitment to do as much as they can for themselves. This requires education. This requires knowing what they are dealing with... not just the fibro, but other conditions that might co-exist with it.

From a research standpoint, and as terrible a disease as it is, fibromyalgia is a golden opportunity for researchers to come to a better understanding of pain. I am convinced that, one day, some researcher or research team will win a Nobel Prize for their pioneering work towards understanding pain in conditions, like fibro, in which there is no swelling or broken body parts to explain it. Am I dreaming to hope that one day the team hoisting that honoured prize will include both a rheumatologist and neurologist, as well as a few others too?

In the meantime, rheumatologists and neurologists both standing idly on the sidelines refusing to play ball will achieve nothing good. Patients will go untreated and research will remain undone. And this will affect not only fibro patients themselves, but also their families, their friends, their employers and co-workers, and both the health care system and society as a whole.

And if all that happens... nobody wins!