January 28, 2003
New York Times
The calls are the same. A concerned uncle or boss worries about a young person dealing with newly diagnosed M.S. and reeling from the bad news. Will I talk to them? "Of course," I answer, knowing that the calls will rarely come.
Talking about the disease is the last thing these neophytes really want. A hiding place is more like it. Horrific possibilities fill their imaginations and the need to know shuts down.
Thirty years ago, I felt the painful confusion of getting the news that this neurological nightmare was in my body. I was 25, a television news producer taking on the world. Little was known about M.S. then, and my neurologist communicated by shrug, passing the buck and strongly recommending the thin volume "Living at Your Best With Multiple Sclerosis."
I opened it apprehensively, my eyes fixing on the credo. "I asked God for strength," the ode to attitude began, "that I might learn humbly to obey."
I knew I was in trouble. This saccharine sermon went on to recommend three-part emotional triage for the inevitable problems to come: 1. Take several deep breaths. 2. Don't talk for a time. 3. Keep Smiling (their italics). This was neurology at its best.
When my snickering ended, the sobering thought that no one had much useful advice to offer hit hard. So did the belief that attitude would play an important role in my future. Thirty years has taught me that what goes on in that exotic place north of the neck may be as important as what mischief is made in the nervous system.
A positive outlook ages like wine. It takes time and cannot be hurried. Attitude can be helped, however. The right book can become a dispassionate ally. It does not plead. It cannot cajole.
A book I found recently met those criteria, offering practical answers at a time of profound fragility.
"To be told `you have multiple sclerosis' leads to a numbing vulnerability that is often psychologically devastating," writes Dr. Saud Sadiq in his foreword to Margaret Blackstone's "The First Year -- Multiple Sclerosis" (Marlowe & Company, 2003), one in a series on dealing with chronic illnesses. This book is the first volume I have seen that addresses bringing M.S. into the arenas of life.
"The First Year" is all about the struggle for psychological strength. Attitude comes face to face with the real world, the perceptions of others, where, of course, we enjoy no control. Taking M.S. into the marketplace or personal relationships, doing business with bosses, friends and lovers, is tricky business.
We owe truth and need to protect ourselves. Where was this book when I was climbing the mountain?
"You are in no way legally responsible to tell your employer about your diagnosis," Ms. Blackstone writes, adding that "most experts, including doctors, therapists, and career counselors do not recommend disclosure in your work life."
That is good advice, at least until the condition of the body tells the tale. I was tortured with that issue. I lied and faked, bobbed and weaved to win a coveted job at CBS News a few decades ago. This book would have eased a troubled conscience.
Personal relationships are a different story. What and when to tell a person you are dating is fraught with anxiety. Ms. Blackstone suggests the obvious, getting the facts out early. I hung out in closets for too long.
This advice is not just for M.S. Every chronic illness brings its idiosyncratic challenges, but they may be remarkably similar. Sunlight beats darkness for seeing what we are up against. The bottom line of this book is "never stop learning." Fine. But learn who you are and what you are made of.
Even armed with the facts, in the end it is the grit and determination
of any sick soul that will chart a future.
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