‘Til Disability do We Part


Pam writes, “My husband told me last night that he feels like he has lost his wife. And since I am the one married to him, of course, I was devastated.“ I recognized this is only the latest version of an old, sad story.

“He no longer sees the me he fell in love with and married 15 years ago. Nope, he views me more as a roommate/friend and himself as a caregiver. I used to feel cherished by him; now I am just another obligation, like feeding the cat or cleaning the garage.”

I have heard this refrain too many times. It is a pathetic paradigm and hardly unusual. Husband feels put upon by wife’s disabling disease. It never seems to work the other way around. I have no business getting into other peoples’ business, but it hardly makes me proud to be of the male persuasion.

‘Til disability do we part? Isn’t that how it goes? I hear these kinds of stories about couples living in close quarters with MS. I am sure it apples to serious sickness of all kinds. I am neither a moralist nor a perfect person. I do know what dependence feels like. I relate to the discomfort of relying on others.

And I do know and acknowledge what my wife does for me every day, not out of obligation, I hope, but because she wants to. All of us are different. I, for one, try not to complain or criticize when things are done her way, not mine. I may have a tough life, but in many ways, hers is tougher because she is stuck with duel realities, living with the problems of two. And there are no complaints aimed at me.

We are privileged without question. I never lose sight of that.  Maybe this is as simple as the stereotype of Baby Boomers at their self-absorbed worst. I don’t know. I do think that those of us who need the help of others have to be careful not to take others for granted or treat our partners as employees. Responsibility cuts both ways.



A well-meaning, little knowing acquaintance recently advised me to be patient. Really? Patient? I had noted that a particular treatment I find particularly unpleasant does not seem to be doing anything for me. Give it some time, the guy suggested. Be patient. Another chronically healthy being was weighing in on something he knew nothing about.

Yes, we are in this for the long haul, but the idea of demonstrating how patient we can be in the face of losing ground is misguided wisdom or a poor substitute. I am freaking sick of disease drama, tired of waiting for the day when events turn around, all the while knowing that day likely will not come. Live with it? Yes. What choices do we have? But patience? Please.

I used to talk myself into showing emotional restraint. Then it mostly was done for show, mostly to put those I cared about at ease. Now I don’t really bother. I do try to keep it to myself. I do not want to inflict my distemper on anyone but the dog. But please do not tell me to be patient. I did that for too many decades. Enough is enough.

The older I get, the more sand I see spilling out of the hourglass. That is not a comforting sight. I want to get better and the time to enjoy it. It is all part of the mind game, of course. I long have wanted to dabble in fiction. A guy can dream. But don’t rub my face in reality. I need a vacation from that. And I reserve the right to be impatient.






After more than a little time, Blue Rider Press, an imprint of Penguin Random House, picked up the option for my new book, Chasing Hope. Beware of what you ask for. Now I have to write it. That promises to be pure pain. The question here is, what will that mean for Journey Man? Probably nothing.

I had assumed that I would have to step away when this moment arrived. This will be my fourth book. I know the drill and the single-minded effort required to make it happen. I am self –aware enough to recognize my penchant for making myself crazy. A good writer knows when to step away from a manuscript. That is a useful survival mechanism for a writer.

I have noticed of late that all of you are writing and responding to each other a lot. I think the machine is well oiled and running smoothly. You are a provocative lot. We will be fine. I am not going anywhere. I look forward to my new role as fifth wheel. Life as we know it will go on.



Waiting for the Ax

An upbeat attitude is a reliable defense mechanism, even fuel for denial, as we try to charge through all in our way. In a way, that is what this blog was to be all about. Make sense? Some of our medical problems have been crises, others, flies to be brushed off shoulders. Having passed the magic number, sixty-five and peering into an unkind mirror, I spend more time than is comfortable wondering if there is an endgame out there.  By endgame, I mean, the last level of a game, a strategic climax with a loudly ticking clock.

No. I am not getting morbid, but too often I feel I am waiting for the ax to fall, OK. I am getting morbid. I just do not let my guard down. Younger people are more vital, with bodies more adaptable and ready to rebound. Resilience is dulled. I am tired. The problem is that often, MS hits when we are down, almost as if the disease senses vulnerability. That certainly sounds paranoid. But I feel my physical weakness everyday. I have become easy prey, and we are being stalked.

Before you have me taken away, hear me out. Some of us need regular attitude checks. Emotional fortitude can be manufactured and renewed. Mine needs to be fortified from time to time. I think there is strength in resolve. To a point, we can become bulletproof. I have been carried forward by determination. This is not warmed over Norman Vincent Peale and The Power of Positive thinking, only the need for all of us to believe in ourselves. Resilience is a wonderful quality. And I would rather go down fighting than waiting for the ax.




I believe we can agree that Christopher is one of our stalwarts, with clear thinking and a helpful perspective. It is jarring and quite disturbing to hear his cry now. Fifty-four days out of work with serious relapses and now in a nursing facility. And that unanswerable plea to anyone who will listen, “Where does anyone turn to at times like this for answers?”

There are no answers.

What do we say to someone in such need?  I am sure many of us have felt the terror of a body seeming to spin out of control. Serious sickness is not for the fainthearted. Maybe junctions like these reveal to each of us who we really are. It is said there are no atheists in foxholes, a judgment I do not buy. The belief I fall back on in moments of crisis is in myself.

I know I have said this a thousand times. I believe we are stronger than we believe. We are survivors. And we have learned to be resourceful. Christopher, is your mind clear? I hate to see the wounded lying by the side of the road. Can you think your way out of this? I know. A silly thought. Can we help?

Think. We are with you. We are your friends.



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.