Plasma Exchange

As if stem cell infusions were not exotic enough, my neurologist told me months ago he wanted me to give Plasmapheresis, or plasma exchange, a try. I resisted as long as I could, just for the sport of it. This is not a new therapy, and I was told there is some evidence it is effective with secondary progressive MS. I have trouble saying no to this guy, so I figured, what the heck, though that is not precise, word for word.

All the patient has to do is get stuck in one arm with a big needle, with a smaller one hitting a vein in the other one. Piece of cake. Sort of. I was tethered to a whirring machine, a centrifuge separating plasma from blood cells. My own plasma was discarded and replaced by donor plasma or colloid fluid, whatever that is. The theory is that plasma from those with a range of illnesses contains dangerous antibodies.

Of course the machine stops if you give it a dirty look. It recalibrates, adding time to the procedure. This went on forever on my first day. I had not eaten for a day when I had the procedure that first time, and the centrifuge went on strike. This machine, I figured, is even more screwed up than I am.

Even in my frustration that day, it occurred to me that times certainly have changed. I had learned my fate in the Diagnose and Adios days, when treatments for MS did not exist. And here I was, getting state of the art medical care. Neurologists are not shooting blanks anymore. The question is, can they hit anything out there? Where I end up at the end of all this is not known.

There has been marginal improvement from the stem cell trial, which I will write about when the train reaches its destination. I do not know about the Plasmapheresis. At least I am doing something. My arms had been getting tired treading water for so long. I feel stronger and am in better shape psychologically. That counts.

A Learning Curve

I just framed multiple sclerosis with a label that should seem self-evident, if not obvious. I wrote that MS is a marathon, not a sprint. Duh. But I am sitting here thinking about my flare-ups through the years. My first bout of optic neuritis, when I lost all vision in one eye, came almost exactly 42 years ago. Losing vision has been a defining dimension of the disease for me.

Much has followed. You know the drill. The passage of time is stunning and what many of us have endured, quite sobering. This is worth thinking about, not in terms of earning martyr merit badges but to understand what we have learned about the need for resilience and patience. My skills for the former are more polished than my history of projecting patience.

It should not be seen as self-serving to say we have become strong, even if we did not start out that way. Many people living with a multitude of threatening illnesses must realize all of us are much stronger than we imagined we could be. I think sometimes we surprise ourselves. Not much about my health scares me anymore. Been there, done that.

The downside of enduring so much is how much it has to sadden anybody. So many have lost so much, and there is no way to gloss over that reality. I am fully aware of how important my family is, not for the practical everyday assistance they offer but for the comfort of the unqualified love they offer.

I am lucky. I cannot speak for anyone else. So far, I am OK, though I frequently wake up wondering if today will be the day. Flares seem to come in the night. We have been condemned to a life of uncertainty, knowing that progressive diseases progress, and there is more to come. So what have we learned?

I have elevated my tolerance for living with ambiguity. I have learned what is most important to me. I do not to sweat the small stuff. And on and on. I am reminded of a wonderful quote from Aeschylus.  “He who learns must suffer. And even in our sleep pain that cannot forget falls drop by drop upon the heart, and in our own despair, against our will, comes wisdom to us by the awful grace of God.”

We are not alone.

 

 

 

 

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.