Fear for the Future

Most of us know the sameness of our struggles. Most days are like the ones we finished and survived only one night earlier. Waking to another day of physical limitations can be numbing. I suspect most of us have come to grips with our daily obstacles. Our responses are rote. When we cross the same minefield everyday, we learn where it is safe to step.

I, for one, get lulled into passively assuming this is it. I’ve got it mastered, or at least I am okay. The Faustian bargain I have mentioned before has me agreeing to nobody in particular to live with what I’ve got, as long as it does not get any worse. That is a foolish gambit, of course. Such guarantees do not exist. And no one is in charge in the enemy camp.

When MS intercedes, I am not shocked, only betrayed. It is not supposed to be this way. But MS flares take a cumulative toll. My last one hit my back and weakened walking. My optic nerves have been attacked once more, and I have been pushed over a line I long feared I would cross. I spend more time at the computer correcting what I try to write than writing. All keys look alike to me now. I can and will live with this. Writing still is a joy.

What’s next? My problems seem to appear at night. It is a drag to wake up at dawn and begin my morning evaluation to identify changes in any part of my body. I get out of bed, wondering if I will just fall. The room is too dark to see and test my eyes. That judgment is saved for the kitchen when the sun is rising, as is my blood pressure when I move to fetch the newspaper in the driveway. The whole routine has gotten old.

I just know there is more to come. That wheelchair with the white cane propped against it still sits in a dark corner of my mind. Each day feels as if the wind has been knocked out of me. I am furiously working on my book. I want it to be finished before my dreams come true. And life goes on. You know. We will fight another day.




That there is only so much time available to work can be a painful epiphany.

Push has come to shove. I am waist deep in the new book and the water is rising. I eat, breathe and sleep with this project. Blah, blah, blah. I am sorry to be an absentee landlord. I think I have written that before. I could see this coming in slow motion. It is a tough situation.

‘My former colleague, Bill Moyers, once told me in a Kansas City bar that journalism is America’s great continuing education course. That is so true. I am learning a lot about hope, coping and living with traumatic conditions. I am finishing Chapter Seven now, the working title being, Searching for Hope. And I am talking to extraordinary people.

I am going to other journalists dealing with life threatening or altering situations. These are people I know and respect. Tom Brokaw, the former NBC News anchor who is fighting for his life with cancer, Bob Woodruff, the ABC anchor who suffered a traumatic brain injury in Iraq, Allen Pizzey, a CBS News fireman based in Rome, losing his vision to Retinitis Pigmentosa have generously shared their stories and thoughts about hope.

Nonfiction authors are journalists.   Journalism, it has been said, is the first rough draft of history. This is an exciting project and, I believe, worthwhile. It is a privilege to be doing this. I can only ask you to bear with me a while longer. I will try to be more attentive. Honest. Spring is upon us. Hopefully book and blog can bloom together.


A Question of Culture

The statistics on the prevalence of multiple sclerosis are changing, particularly on questions of gender. The rate of MS among men is static, according to the NMSS. Among women, the pace of MS diagnoses is growing. More women are diagnosed with the disease than men, by a ratio of 3.5 to one. Nobody seems to have an explanation, though research has increased to find an answer.

I wonder if the answer is more cultural than neurological. It is generally accepted that women are climbing the ladder in corporate America. A glass ceiling remains, no doubt, but women are moving up in management. An increasing number of women are taking over as breadwinners in American families. Any good sociologist would start asking questions.

Who among us would disagree that stress can cause flare-ups with MS? Does MS present suddenly or gradually? My guess is nobody knows. Let’s say the disease comes on gradually. If stress among some women is increasing exponentially, who is to say that symptoms are not pushing some into MS-land. This is my story, and in the absence of evidence to the contrary, I am sticking with it.

Lung cancer has surpassed breast cancer as the number one cancer killer in America. Lung cancer rates in men are declining. The rate among women is on the rise. Houston, I think we have a problem. I may be dead wrong, but perhaps there is something to the theory. There is a price tag on success. Nobody is suggesting women drop out of the workforce. But maybe there is a way to ameliorate the stress of success. But Type A personalities do not slow down.



A Power Grab

I am a recovering politics addict. When election years roll around, I can’t help myself. Writing books takes over a life. I keep forgetting that. A person can sit at the computer, staring at that electronic screen for only so long. Past a point, any author will talk about diminishing returns. So when I hear the saturation point alarm, I give in and turn to my reliable drug dealers.

They are CNN and MSNBC. I am not man enough for Fox, but a guy can hope.  I covered politics for years. I never saw anything like this election cycle. I think it is too late to fix anything this time around. The barn doors are open, the horses gone. Frankly, I don’t like anybody. Bernie is OK, but if he really believes he can make wishes come true, I want some of what he is smoking.

What to do. Oy.

It probably is too late to get on the ballot for November, but I think we should found a new political party. The CCP. That would be the chronic condition Party. Consider our numbers. There are more than seven thousand chronic illnesses threatening our national health. These sicknesses affect about 117 million Americans. That is roughly half the population of the United States. But we are too damn fragmented to raise a political army.

We are separated by the names of our diseases. Every year, we go separately to Capitol Hill to lobby for ourselves. Congress does not want to give to one group because they will have to give to all. So they look at the disease neutral National Institutes of Health and give NIH practically nothing. Congress froze the NIH budget when we invaded Iraq in 2002. We have to save our nickels and dimes to bomb all the sand castles in the Middle East and accomplish nothing.

I am pretty sure we will not agree on everything, but if we blend our voices, a chorus of common sense might be heard. Pandering politicians might be forced to deal with us if they think their jobs depend on it. Let’s become a force to be reckoned with. Maybe we can get our national priorities straight. We just need a strong leader. I nominate Christopher. I want to keep my distance from the idea so I have deniability.

  1. I’ll go back to my book.



Who we Are

I join many others who are intent on measuring disability by what we have lost, all that we no longer can do. The list only gets longer. Running, walking, driving, playing sports and on and on.   That opens a narrow window on the quality of a life.   Probably that standard is very male. Most guys just want to be jocks. But is that all there is?

What about all we still are, what we do and give to others? Don’t those count? My kids are grown and gone, on their own, if such exists. A famous anchorman once told me that never really happens. I am involved with my children as I always have been. That has real meaning to me and is somewhere in the recipe for a good life.   And what about our spouses and partners? Care giving is not just about bedpans and meals on wheels.

Meredith and I have been interviewed about caregivers and have made the point that everyone in a relationship is a caregiver. We are advisors if not anchors for each other. We contribute to lives.  I am not minimizing the pain that accompanies loss. I feel it every day. I am only suggesting there is more to consider as we continue to evaluate our lives.

I have written that who I am sits in my head and heart, not in my sneakers. I am not above wallowing, but coping is an endless mind game. What is missing in life hurts, but what still is there has a positive place. I am currently writing about self-absorption for my new book. Being honest with ourselves is a mighty task but one that is worth working toward.



Stem Cells and Me

My flirtation with stem cells is winding down, the Phase One portion of the festivities coming to a close. FDA approval for the Tisch Center Phase Two trial has been announced. I hear the stats on the Phase One study are impressive. This is a big deal. Traditional therapies not withstanding, cell therapy is the future. I have been proud to be on the maiden voyage.

I did not win any medals. My pulmonary embolism and a debilitating skin condition, diagnosed as Erythrodermic Psoriasis (another autoimmune disease), followed on the heels of the first infusion. That did not help. No one knows if age and length of time since diagnosis were factors. Great expectations do not always pan out.

I am steadier on my feet and walk faster and with more control. Marginal change can be huge in our very personal struggles. I discovered physical therapy as a complement to the trial. Getting my head out of the sand carried me some distance.

I do not minimize the psychological power of participation in this bold experiment. It was a contribution to the future of medicine and our own futures. I have no regrets and would do it again. I continue to look forward to the day when a neurologist will say to me, best wishes. Sorry it took so long.


There is a lot that is wrong with me, a host of conditions and calamities. Yet I believe I have not descended into bitterness. Ever. Self-serving? Probably. True? Maybe, though I can come dangerously close. I have offered about 170 posts, each drawing robust reactions and responses. I am trying to sort through perceptions of all that you have offered and I have read.

You often seem beleaguered, living in a state of siege. That does capture a difficult reality. Truth is an absolute defense. Many seem resigned. Who among the chronically ill does not go there? Chronic conditions by definition arte incurable. We are signed up for life. I think I detect anger a lot. So? I like anger. Good fuel for the fight.

But bitterness? Not really. Few among us seem to have crossed that river. I think that bitterness starts out as hurt. A relentless enemy we cannot see stalks us. And why is this happening? Why me? That is the poison pill when coping. I have pushed that question out of my head for years and had a better life for doing so.

I raise this subject because I am juggling a lot. Our burdens are cumulative. Baggage piles up. I worry about slipping into the quicksand of self-indulgence. The issue is not what I say to others. My mask stays firmly in place. I worry about what I scream to myself in the middle of the night, knowing that silence enhances deniability. I didn’t hear anything. Did you? Do I get to keep my martyr merit badge if my lips silently move? In the end, we play to an audience of one. I am my toughest critic, which is as it should be.




I keep hearing questions about Dr. Zamboni and CCSVI. My kingdom and the horse to anyone who can tell me what CCSVI stands for. Not you, Christopher. MS patients periodically buy into new and unproved ideas for therapies. An open mind is a good thing. Lord knows the status quo sucks. But we need to take a hard look before we leap into the abyss.

Here is what the NMSS writes about the procedure. “Some studies have indicated that CCSVI, a reported abnormality in blood drainage from the brain and spinal cord, may contribute to nervous system damage in MS. This hypothesis was put forth by Dr. Paolo Zamboni from the University of Ferrara in Italy in 2009, and is now being pursued by other investigators as well.” Very useful.

I asked questions about CCSVI some years back and even had an interventional radiologist offer to do the procedure. My research suggested that veins opened by inflating balloons tend to close again, sometimes in short order. Some physicians use stents to keep the blood vessels open. A few patients at Stanford died from the procedure. No, thanks.

I would not go near CCSVI. Others would. Don’t ever tell a Canadian you are opposed to CCSVI. The procedure is covered by their healthcare plan and is popular. I have spoken critically of CCSVI and almost gotten lynched by Canadians in the audience.

Every MS patient can decide for himself or herself. Remember when it was all the rage to have amalgam fillings removed from our teeth? Some dentists cleaned up before they lost their licenses. I hate to see fellow MSniks falling prey to fads. That speaks volumes about the desperation so many of us feel.

I am heartened that Dr. Sadiq’s stem cell clinical trial at the Tisch MS Research Center in New York is moving to a Phase Two trial. That is a better bet as far as I can tell. Slow and steady wins the race. I possess no greater patience than any of you nor any more wisdom. Just make certain the ice is solid before you venture out on it.




Apologies, Again

I an acutely aware of my blog absence.  I get a lot out of leading or at least participating in our ongoing dialogue about whatever I or anyone else wants to put on the table. This has been a rugged new year so far. I have been very sick with a partial bowel obstruction, adhesions going back fifteen years to multiple abdominal surgeries for two bouts of colon cancer. The scar tissue can come back to haunt. And it has.

Fighting on multiple fronts takes its toll. It is like defending Moscow and landing at Normandy at the same time. Usually I just roll my eyes and try to go with it. But it is getting harder. I rail against becoming a victim but yell that enough is enough. I know I cannot have it both ways. Some times the war is wearying to the point at which discipline crumbles and ceases to be a guiding force.

This is when I try to survey straw and the camel’s back to find my second wind. It is in there somewhere. Self-indulgence has to meet resolute determination head on. The best in me has to rise up on hind legs and breathe fire. All of us have that secret strength. We just have to locate it and know how to use it.

The Hundred Years war was a series of conflicts fought in England between the fourteenth and fifteenth centuries. I guess things could be worse. NBC Universal canceled Meredith’s television program in the midst of all this. “It’s only television, Richard,” she said to me.




Sound and Fury

I still am stuck on Mark Twain. Both of us lived in the Hartford area =during formative years. He was way ahead of me with his writing. “was born with an incurable disease, so was everybody…the moment a name is given the disease, the whole thing is changed: fright ensues, and horrible depression, and the life that has learned its sentence is not worth the living.”  A powerful thought, but is it true?

The cancer brand can be a knockout punch, but which kind? Pancreatic? Skin? I was diagnosed with early stage colon cancer twice and have endured more quality of life challenges than threats to my life. Multiple sclerosis does sound bad, for multiple reasons.

Samuel Clemens was born in 1835. Medicine was primitive by today’s standards then. Language is powerful. So many diseases were tough to treat, if not incurable. No wonder citizens of sickness were frightened. Frequently they were wrestling with killers.

It seems to me this idea offers testimony to a point many have made. The psychological dimension of disease is potent. I still believe many of our battles are fought north of the neck. Attitude goes a long way in determining our prognoses. Beware of thinking the worst. That can become a self-fulfilling prophecy.