Canthook

On your 65th birthday the probably is 80% that you'll have a debilitating illness. The odds are 50/50 that you'll have two or more.

When I get older losing my hair
Many years from now
Will you still be sending me a valentine
Birthday greetings, bottle of wine?
If I'd been out till quarter to three
Would you lock the door?
Will you still need me, will you still feed me
When I'm sixty-four? - The Beatles

Richard M. Cohen, having previously written about being diagnosed with Multiple Sclerosis in Blindsided, writes in his new book, Strong at the Broken Places, about five other people who've been striken with their own debilitating illnesses.

It's not an easy read in some ways. He's talking to people who are staring death in the face. On the other hand, if those five can talk about it without wincing, who are we to wimp out?

In another way, Cohen's book is very easy to read. Cohen's a good writer. He writes "Health and Fitness" pieces for the New York Times. He formerly was a senior producer at CBS News, and at CNN - and they do write what they're going to say, rather than just winging it.

It was 1973 when a spinal tap produced the diagnosis of MS for Cohen. He'd just done a documentary on people with disabilities for PBS. He decided that he wasn't going to be defined by his MS - but within a few months, his MS defined him as legally blind, first in one eye, then in both. In the past 35 years, he's also fought two bouts with colon cancer.

When he starts talking about the first of the five - Denise, a woman with ALS, from suburban Los Angeles, California - he mentions his MS in passing. ALS (Lou Gehrig's Disease) is far more serious than MS, he points out. This isn't his story; he's already written that book. It's Denise's story, and the story of the other four.

Denise has to be careful of what she eats. No dairy, for instance, because it thickens the mucus, and interferes with her breathing. When Denise and Richard talk, she cuts up a lemon before they start, and lines up the wedges. Crying, it seems, also thickens the mucus. She bites down on a wedge, and the lemon juice cuts the mucus.

And there's a lot to cry about. There are families that are touchy-feely, huggers that are constantly in each others' faces. Denise's family - including Denise - is not that way. She thinks her family cares about a sister with lupus, not about her, and they are trying to make decisions about her without including her in the discussion. They believe she's pushing them away. Cohen sees her PALS (People with ALS) community as the family in her life, replacing her biological family, and witnesses her crying to mourn four PALS at a memorial service.

He goes on to Buzz, a man from Southern Indiana who has non-Hodgkin's lymphoma. You will be judged, Buzz believes, by how well you stand up to this. Buzz is bright and chipper, unreasonably optimistic. When his athlete's foot doesn't get better, his doctors perform test after test after test, and neither he, nor the nurse he is married to, have the slightest clue that there is something seriously wrong. Well, that cloud that showed up on the scan? We thought maybe you had an extra kidney.

My late first wife, Em, sometimes rode the chopper with a baby being airlifted from the Neonatal Intensive Care Unit at Parkview, Fort Wayne's Largest Hospital, to Indiana University Medical Center in Indianapolis. I had a kidney stone zapped at IUMC, back with lithotripsy was considered experimental by the FDA. I've also heard some horror stories about IUMC. Em always told me that one should avoid hospitals if at all possible. There are all sorts of germs floating about, even at Catholic hospitals which are considerably cleaner than other hospitals. (Parkview was started by what is now the United Methodist Church.)

What's worse, she said, the least competent nurses tend to end up at the mass employers like hospitals, who have such a hard time hiring nurses that they settle for any warm body with a license. Em was an outstanding nurse, I'm told; she even wrote a book on pharmacology for nurses. Where was she working when I met her? She was charge nurse, nights, in the Neonatal ICU at Parkview. Late wives being what they are, she's whispering in my ear right now, "I never said that they're all bad nurses. It's just that, like the strength of a chain being determined by the weakest link, the quality of your health is determined by the poorest nurse you have."

When Buzz finally gets told the diagnosis, he asks how is it that athlete's foot turns into cancer? The specialist is flabberghasted that Buzz has not been left in the dark by his doctors. (His primary care physician said, well, you fell through the cracks. Mighty big crack to fill there, Buzz replies.) Still, Buzz is highly dependent on his physicians, and refuses to be critical. Cohen suggests that perhaps there's a difference between turning a blind eye, and ignoring a train that's rapidly closing in on you.

Cohen also relates the story of Sarah, a Cleveland woman in her late 20s, with Crohn's disease, of Ben, a freshman at Saint Mary's College of Maryland, who has muscular dystrophy, and Larry, a manic-depressive from that other Cleveland, the one in Georgia.

Cohen relates his difficulty in dealing with these disabilities. He doesn't want to be critical, and yet he pressures Sarah to let him talk with her family. He realizes that he's stereotyping Larry, when in fact, Larry is the most stable of the five. If the reader is paying attention, he realizes early on that it's tougher to watch someone deal with a debilitating illness than it is to actually deal with the illness itself. Cohen doesn't pound you over the head with this truth; he simply presents the facts and allows you to figure it out for yourself.

It would be a little easier to deal if you have effectively limitless resources. If you can hire someone to wash the laundry, do the dishes, and take the car in for a lube job, that leaves you with more time and energy to deal with the debilitating illness of a spouse. Meredith Vieira, Cohen's wife since 1986, earns an estimated $10 million annually. The five he interviewed for this book don't have such resources available.

When I say interviewed, it gives the wrong impression. This wasn't a matter of talking to each of the people over the course of an afternoon, or even an entire day. Cohen met with these people over the phone, through email, in person, over a period of years. Part of the reason they trust him with their stories is that they know he has his own story. Another big part, though, is that they're looking for someone, anyone, that they can relate their story to.

One of the other truths Cohen reveals is that having a debilitating illness can be a very lonely experience. Despite all the care that friends and family try to offer, ultimately one goes through the disease by oneself.

The five stages of grieving (DABDA or Denial, Anger, Bargaining, Depression, and Acceptance) are very much present in these five, and mostly they're in the Acceptance stage. For the most part, these five consider themselves blessed, in a way, by their illness. Denise, for instance, when she received her diagnosis, sold her condo to finance a variety of adventures, including a trip to Antarctica. She was just going through the motions, she said, before; without that diagnosis, she'd have never done those things.

In the end, one must wonder, "Do I need to face death, in order to really enjoy life?" One can't do everything, of course, but if you've always wanted to run with the bulls at Pamplona, or sail a boat around Cape of Good Hope, or start a lawn mower repair shop in the garage, or put on your Forrest Gump shoes and run from coast to coast, this book might be just what you need to propel you over the edge.

Other Bloggers On These Subjects:
acceptance - adventures - Antarctica - Blindsided - cancer - Richard Cohen - DABDA - death - debilitating illness - doctors - Lou Gehrig's Disease - MS - physician - stereotyping