Get Used to It

I wrote on Twitter this morning that I am sick and tired of feeling sick and tired. I meant it. The assault by illness on the body is cumulative. Aches and pains add up. Neuro dysfunction places stress on the body in predictable fashion. Lower back weakness brings on pain. Leg weakness strains joints. I don’t know. I made these up. This is not my choice of how to play doctor. I am not going to list my complaints. That would violate self-imposed rules.

Let’s just say, there is not a day when I feel good. I do not mean I am in pain all the time, only that discomfort is a constant companion.  But it adds up. Throw in a healthy dose of fatigue, and, voila. A day here, a day there would be more tolerable than this fulltime job.

How do I get used to this? I don’t.   I cannot. Anybody out there with MS or a host of other illnesses has to know exactly what I am writing about. I am reasonably certain this is a shared experience. I do not complain about it much. This discomfort is programmed into my life by now. I feel bad but hardly notice that I feel bad most days. Ask people living near an airport if they still hear the jets.

This just is who we are.



Peering Around the Bend


I spend time trying to peer into the future, probably too many wasted moments. Is the past prologue? I wonder. I have traveled that road and know the answer. There are no predictors. My path has not been easy, though I do know it could have been worse. Much worse. I have written that I will live peacefully with my life as it is in this moment. Just do not make it worse, whoever you are.

What would you pay to know outcomes, to know, digest and cope? Sometimes I lose confidence in my ability to adjust to possible worst-case scenarios. I cannot drive them from my head. I want to know and want no part of it. I demand truth from my doctors. Suppose they knew. They don’t, of course, but that day will come. Would you want the truth?

Some illnesses have certain destinations. Not mine. I could land in a living heaven or hell.   My father finished his race in a wheelchair. My experience thus far has been more brutal than his. I write too often about the wheelchair and white cane parked in the corner of my mind. You can tear up photos but not images projected in your mind in the dead of night.

I consider myself well adjusted. I wonder if that is true.

Measuring Loss

There I was, standing in the kitchen at 5 this morning, making coffee and preparing myself for the trek down the driveway to fetch the newspaper. I really dislike that piece of my predictable morning routine. I trudged along, thinking of a happy time thirty years ago when I took a break from the news business and was a fellow in Cambridge. Three mornings each week I would run ten miles along the Charles River. It was autumn. The crew team would be out in the early morning chill. I would try to keep pace with them. I grabbed the Times on this day and hobbled indoors, feeling a bit wistful and sorry for myself. Self-indulgence on parade. What is the matter with me?

I am on my feet. Tomorrow, I probably still will be able to stand up and move forward, however slowly. I go to see the doctor and walk by those in wheelchairs or on scooters, walkers or whatever. How can I play the victim? There are a few frames of reference available to us for bringing perspective to loss. Which we choose goes a long way to defining attitude.

We can drag out the memory of what we once were, the image of jogging that takes us nowhere. Aging, alone, diminishes us physically. Who among us has not changed? Or we can look around us, see suffering, and be thankful for what we continue to be. The choice is ours. It is not between Polydamas and Pollyanna. And I am no legendary Greek Olympian. Keep it real, I remind myself.

The attitude wars are not a new subject for us but one worth revisiting from time to time. Many with pronounced physical limitations live in our heads. Often it feels as if we have nothing but time, and we muse ourselves to death. The more we can feel and believe we do not have it so bad, the happier we can be.


A Revolting Development

As Daffy Duck exclaimed in frustration, “What a revolting development this is.”
I can explain. No I can’t. Journey Man took a hike last week. Suddenly and without warning, it was gone. I thought it must have been something I wrote. I contacted my computer doctor. Brooke just started laughing, until she realized this was true. What is going on? I demanded. “I don’t know,” she replied grimly. I figured it must be dead. “Let me check into it,” she said.
Actually, this is great, I thought. Now I don’t have to post anything.
It turns out I was hacked. Big time. When a web site grows large enough, it is a magnet for miscreants who do their thing, apparently for the fun of it. Or to spread their charm. The online host and security company do not communicate, sort of like the government. You may have noticed that the nothingness was unblemished. Days passed. I stopped chuckling.
The blog lies in smoldering ruins, just a charred hulk. The entire thing has to be redesigned, unless all of you like this new look. I won’t tell you what this is going to cost. Bad manners. Anyway, I have missed you and am glad to reconnect to those of you who are still around. This will be text only for a few days, but simplicity rocks. I am rolling with the punches and will live to fight another day.

Oliver Sacks

Any one living with a mystifying neurological disorder should take note that Oliver Sacks died yesterday. Sacks was a physician, a neurologist of note and a towering literary figure. He brought neurological disorders to life. His book, The Man who Mistook his Wife for a Hat, helped me to understand, even appreciate, the startling conceptual oddities that have become the highlight of my cognitive roller coaster ride.
Reduced to its simplest, I felt this neurologist understood me, a rare occurrence. We crossed paths only once, in a television studio before a program I produced. He seemed to be an accessible, easy person. We talked. I never mentioned my MS. I only listened. I could not get enough. Situations such as that teach that it is a privilege to be a journalist.
I bring Sacks up for a reason. Michiko Kakutani wrote the obituary in The New York Times. She is very good. I felt that she could have been thinking of us as she explained the man. Kakutani wrote of his case studies, “They emphasized people’s resilience, their ability to adapt to their deficits, enabling them to hold onto a sense of identity…Some even find that their conditions spur them to startling creative achievement.” Right on target. He knew the struggle.
This doctor looked past the conventional, limited views of patients, the ordinary evaluations. His books made it clear there is a loftier take on these illnesses. These conditions “can play a paradoxical role in bringing out latent powers, developments, evolutions, forms of life that that might never be seen or even be imaginable in their absence.”
Oliver Sacks believe d in his patients. He brought a nobility to his work.

Coming Up for Air

Sometimes the light flickers, then clicks on. It is an epiphany demonstrating my flair for the obvious. A cheerfulness and sense of humor belie the darkness that surrounds. That foreboding sense of being trapped deep underground weighs heavy. It is a load that is hard to lighten. I recently came through an exceedingly rough patch. I cannot explain my façade of tranquility that is so personally important to maintain.
I probably wrote of my vision loss a few months ago, coupled with a new weakness in my back that translates to walking expeditions with less distance traveled. I am not sure what I wrote, but I assume it understated the gravity of what I lost. I do not spend time worrying that now I mistake plants for animals. The distressing part for me is that I have crossed a border, just what I have dreaded for so long. I am losing the ability to read and write in a high functioning manner. I experience this anew every day. I expected this day was coming someday.
Details are not important here. The point is, I need to come up for air. I need a time out. I have to get a grip, to stay calm, assess and reassess the situation and refine the plan that has emerged in bits and pieces ever so slowly. This is important. We know that progressive diseases progress. Anyone who is shocked that life only gets harder has missed a rather important point.
There is nothing to be gained by beating my breast or crying out to the heavens. Wailing only hurts your ears. Weighing a new reality and considering options seems more constructive. I have survived this illness for more than forty years. Why stop now? Coming up for air is not an easy swim to the surface. I have written that chronic illnesses are in no small part a mind game. We have to keep it real but push away even subdued hysteria. There is no time for that. This is more complicated than, say, building a wall along the border with Mexico.
This, too, shall pass. Life goes on.

But I Digress

I appreciate digression. Changing the subject can be a relief. Laughing is therapeutic. Silliness interrupts cycles of despair or just self-absorption. We can breathe free, if only for the moment. So I think wandering to a new path in service of the silly helps us deal with matters that are dead serious to all of us.
Pacing is critical in a marathon. Sprint for 26+ miles, and you will finish in a box. I find it tough enough to stay on my feet as is. Fatigue, if not exhaustion, is wearying. We live that fact each day. Chuckling is taking a rest. We can stand around and hyperventilate together.
The bad news is that too son it is time to get back to work.
Did any of you see the NBC report about the doctor who told patients they had MS to lure them to undergoing expensive tests and therapies? Surprised? Hippocrates must have rolled over, wherever he is hanging out these days. Medical fraud seems like a particularly cruel dishonesty. Scaring sick people out of their hard earned money seems pretty cynical. Individuals are so vulnerable after a bad diagnosis. This is another reason to seek second opinions.
It’s good to be ringing my hands again.

Journey Woman

This is crazy. My recent post about Meredith’s eye is bruising my ego. We all know that men’s self-esteem is built on bluster and can be carried away by a stiff wind. The numbers are not blowing my way. I have received more responses about Meredith than from any of the nearly 150 Posts I have written, many about me. You sure like/love her. I don’t get it. I mentioned that to Brooke, who suggested I am not as interesting and certainly hardly as entertaining as my wife. She sure knows how to hurt a guy.
Then Brooke sends me the most up to date Google Analytics, which traces the rise in the number of hits from about 30 thousand per month to more that 53 thousand since early last week when Meredith’s unfortunate accident was revealed at great expense to me. After years of fighting MS, it has become obvious to me that life is not fair. And now this.
I have learned that people like Meredith. A lot. By coincidence, so do I. I called Meredith to tell her about this unhappy development. The woman wondered if she should take over the blog. I hung up on her. I assume someone will now chastise me for being disrespectful to my wife. We seem to have a sense of humor gap at work here. I respect Meredith. I wish her well with her new Journey Woman blog.

Bouncing off Walls

Here’s the deal. I have not written about this. But today is the day. I am the one in my house who has multiple sclerosis. I am the only one who is legally blind. I have limited depth perception and glance off doorways if I am not careful – and I am very cautious – because my lateral perception also is deficient. Yet I survive because I have learned self-preservation.
I am married to a woman who has not. Meredith is a klutz, like a drunken sailor on a bender who collides with stationary objects and is a danger to herself. Last night, while paying a visit to the bathroom, Meredith fell over a suitcase, slamming her head against a dressing table as she plummeted south. The dog was so embarrassed for her he did not even bark. Must have been worried about what the neighbors would say.
The woman is staining the walls, what insects do to windshields. Meredith’s doctor was concerned about a possible concussion and ordered a CT scan. What did they see? I asked. A brain, by any chance? Her doc wanted to know if it had occurred to her to turn on a light.
It may be time to hire a sitter to protect the poor, dottering dear from herself, especially after dark. She is a highly paid professional who long has been a role model for others. Her work on 60 Minutes, Today and now her own show has been a beacon for other woman. A candle in the wind, I say, if she does not wake up and watch where she is going.