Contributions

I was on the Internet, venturing down various rabbit holes. You never know what you are going to find out. According to the National MS Society, 55% of monies raised goes to research. They write that 34% goes to programs and services, 11% to fundraising. That raises an interesting conversation about priorities. My longtime friend, Clifford Goldsmith, a former Pres. Of the NMSS, donated generously to MS causes for many years. His daughter had died of complications of the disease. Right up until his death at 94, Clifford gave every penny to programs and services.

I used to tell Clifford that was like paying on an interest only loan. I argued that until we put more resources into research, there will be no cure. We will just keep paying off interest, assisting folks with MS. Clifford listened carefully but never changed his mind.   He wanted to give MS patients a better life.

I wonder if we are any closer to finding a cause and cure for multiple sclerosis.

MS is not an orphan disease, defined as a condition that affects fewer than 200,000 people nationwide. That means Pharma has not written us off. There is money to be made. Drug companies do important research when they believe there will be a payoff. Federal dollars go into research. But affinity groups such as the NMSS play an important role. I still believe more of their monies should go for research. I am sure many disagree. And why does 11% go for fundraising? Sounds like public television.

34

State of Mind

It strikes me that little is blossoming with MS research these days. Big Pharma has put its self-serving horn down. At least for the moment.   The last headlines, which I never trust, trumpeted FDA APPROVAL OF Ocrevus (ocrelizumab). Rituxin has been around for years. The drug never did anything for me. Of course I have SPMS. Ocrevus is said to treat RRMS and PPMS. Does that make sense?

I am deteriorating. Every thing I attempt to do has gotten worse. My right side has taken a leave of absence or just quit. I cannot coax it back. I am on a course of Solu-Medrol, the Prednisone based all-purpose, one size fits all drug that is good for short term relief. I asked for it knowing It is but a brief reprieve. That makes me wonder about Ocrevus.

I called a young friend with PPMS. He is doing great. Are you on the new drug? “No, he said. I’m already on Rituxin and I think it is helping. Ocrevus is a more expensive version, and I thought, why do it?”   Our neurologist just scoffed. Genentech is just asadept as Biogen whewn it comes to getting the drumbeat going. My friend attributes his stable health to diet, sleep and clean living. He has quit drinking and eating junk food. I think that is called seizing control.

This guy has his act together. It is the challenge for me and probably many.  Don’t ever underestimate the power of attitude when coping with serious sickness. We cannot determine the course of the disease. But sometimes we can steer it, at least until we lose control of the car. Maybe that will be way down the road. I pay more attention to my state of mind than ever. That is one key to our physical fortunes. I am down but not out.

 

 

 

 

44

Trump and MS

I have noted that the extreme negative attitudes I sometimes hear expressed about living with MS are similar to desperate entreaties about existing with Trump in the White House. Granted, Trump is quite similar to multiple sclerosis. Both are unpredictable and inflict damage with no notice.   Each is painfully arbitrary and serves no good purpose. So far, there does not seem to be much we can do about either.

MS is the product of a sick and damaged brain that can compromise everything we do.   Same with Trump. Now try going to an emergency room and telling doctors Trump is ruining your life. Realistically, there is no potion short of hemlock that can solve the problem for you. Let’s face it. We are screwed. We got it twice and have no redress. Being the south end of a northbound horse is not an impeachable offense.

Finally Growing Up

For those who have visited the Cape, you know the peninsula is dotted with sand dunes and endless stretches of beach. There are crashing waves and mild kettle ponds, created by receding glaciers. We live on the Outer Cape, also known as the lower cape, in spite of the fact we have to drive up the Cape to get there. It is no wonder I am confused.

What does not confuse me is how much I adore the place.

I have been visiting Cape Cod since I was a kid. Running up and down the dunes, hiking the trails and swimming across ponds were a part of summer I took for granted. No more. I have written about that in this space and see no need to repeat myself. I think my tales of frustration have crossed the line into tedium.

It is time to get over it. What was was, and what is, is. I am a lucky guy. It has been a privilege to have this place.   I sit on a bench overlooking a vast stretch of ocean that is timeless. I feel small there and lucky to be alive. Siblings, nieces and nephews and their children surround Meredith and me. How cool is that? Family dinners are festive, forever fun. Life is a series of cycles. How could my

Life not have changed? Maybe the more we have, the more we want. There can be an unintentional pull toward entitlement when we are denied perfection. That becomes a sorry state.

I may not have it all, but I am fortunate for all that is mine. Meredith asks if I mind if she goes jogging on the beach. I know she fears her run will make me feel bad. I look at her as if she has a screw loose. Please go, I say. My mother never left my father’s side when he was sidelined with MS. Please don’t become my mother, I say. She gave too much of her life looking after a man in a wheelchair instead of occasionally watching hundreds of seals diving for fish in the harbor. I am fine. I miss a life I once loved, but I do not feel sorry for myself.

Life is good.

 

 

 

No Good Deed

I couldn’t make this up. It just proves no   good deed goes unpunished.   I finished my book. Done. Chasing Hope was slated for publication in the spring. We are on Cape Cod for July 4th. All seemed right with the world.   My publisher is Blue Rider Press, an imprint of Penguin Random House, now the largest publisher in the world. As our kids are arriving I get an email from my editor, informing me that she lost her job. Huh?

She is young and talented, a rising star there. I just stared at that sentence on the computer. Then I read on. The President of Blue Rider, my patron, is out. In fact, everyone there is out of work. Wait, I yelled in my head. I did not even have the chance to send in my 300-page manuscript.

Penguin Random House controls 61 % of the book market. That is extraordinary concentration of power. We have discussed in this space what is happening in news. Really, it is in all media. These are bottom line business decisions. Public interest be damned.

I am lucky. Dutton, a venerable old publisher, is going to take over my book. I am lucky. I could have been at a loss for words or simply the frustrated keeper of lost words.

I’m Bored

What is there left to write about here, to wring hands over, obsess about and keep us awake late into the night?   Seriously. I feel as if I am running on empty. We can go on and on about politics and the president. That at least would feel good. But what about illness and infirmity, coping and caving in. It seems as if there is nothing new under the sun.

Life is what it is. We hope for the best and sometimes get the worst. So it goes.   We are prisoners of a process, a neurological journey no one wants to take. We know that. We have been kidnapped. Yada yada. No attitude adjustment is going to change the course of a disease or alter our destinations.

So let me ask this. What are we doing? I try not to spend time thinking about my health. Certainly, I don’t talk about it anymore than I have to. What is the point? Positive changes in what medicine offers us are incremental. In my long duel with disease, I do not remember any real headlines.

I am not being negative.   Really. I am not complaining. I would like to trade diseases like baseball cards. At least that would offer a new pasture to cross. I am bored. Maybe I should get a hobby.

Mind Games

Your responses to Getting the Chair prove a point I have been making, at least to myself. Neurodegenerative illnesses strike all regions of our bodies and compromise many functions in our lives.   In the end, however, these conditions become attitude afflictions fought, yes, north of the neck.

Making peace with a disease strikes me as appeasement.   That approach did not do so well in the first half of the twentieth century. I imagine plenty of shrinks would suggest that choosing not to fight the unwinnable war is a good thing. Realism in the face of uncertainty will serve us well.

I say, do not go gentle into that wheelchair.

Do I contradict myself? Probably. So what? That was yesterday, this, today. Piss and vinegar can power us forward as well as premium gasoline. All of us play mind games. That is an important part of adjustments.

Our son, Ben, received his MBA from Harvard a few days ago. The university held all commencement exercises outdoors, despite a cold, driving rain and brutal wind. We sat drenched and shivering for hours. It was pure pain. I was in a wheelchair because of the muddy grounds that had to be crossed and the distance from the parking lot. Those of us in those chairs were penned up together like dangerous animals.

I know.   Here I go again.

Shivering drenched disabled people spotted Meredith and asked her to get into photos with them.   The smile never left her face as she posed with anyone who asked. Those others in wheelchairs smiled broadly and seemed so well adjusted. Happy. Later, Ben pulled my chair out through the mud, and we found warmth in some esoteric library.

My pride had been injured, but I figured the wheelchair had spared me monumental misery. Without it, they might have found my body in the mud sometime around July 4th. I am not making the case for my own attitude adjustment, only for a modicum of common sense.

I wonder if I ever will get over myself.

 

Getting the Chair

What is it about using a wheelchair that makes me feel self-conscious and vulnerable? A chair is the smartest way to get from Point A. to Point B. when the distance is just too great to walk.   Or I should say, hobble, bent over my cane and looking as if I am about to collapse. Often, that is the case.

Is self-esteem such a fragile commodity that it caves in to stereotypes?   Recently we were in a corridor outside our room in a Boston hotel. When we heard an entourage coming up behind us, we stepped to the side. Stephen Hawking and his handlers seemed to streak by. Hawking was in his motorized chair, looking like the King of Prussia, alert and semi-smiling, I thought. No self-esteem deficit there, I thought.

I am not sure I could pass seventh grade algebra, but I think enough of myself that I should not feel like a loser on wheels. But I shrink into the chair until I am smaller than life and cannot wait to get to the gate at the airport.   I have yet to run into anybody I know on one of these excursions, but I know it will be humiliating. How crazy is that?

Please do not advise me to seek professional help. There are many better reasons for me to do that. I used a chair at Penn Station not long ago. The redcap took me down an elevator and toward the front of the train. I fetched a coffee and newspaper on the way. By the time the hordes of business travelers boarded, I was sitting quite comfortably reading.

What is wrong with me?

Us vs. Them

I continue to believe Americans are caught in an us versus them sand trap.   Our country is split in half, culturally and politically. Why should this be any different?   We worry that we are losing out and do not trust each other. We need to be sure no group is getting a better shake than we are.

The new, whiter than white, brighter than bright health care bill is a prime example.   In this space, we have agreed that Trump is full of (choose your substance) when he asserts that individuals with preexisting conditions will be taken care of. That just is not true. And the numbers affected are staggering.

Reassuring rhetoric is good enough for many Republicans. Will that become most Republicans? The jury is out.   Here is the point they are missing. Us is them. We are fighting ourselves. When almost half of us have at least one chronic illness and almost twenty percent are disabled, who in the world do we think we are talking about? Us, joined by family and friends, neighbors and colleagues. I realize I am a broken record, but maybe it is time to protect ourselves.  Let’s stop only watching the world. Please turn around a see each other.

Dream On

Thanks to the Freedom Caucus, the sick and disabled are officially under the bus. Medical coverage for those with preexisting conditions is being jettisoned in the new GOP plan, a step backwards to mollify conservatives. High-risk pools would replace that provision in the ACA. Those would apply to a limited number of conditions with no price controls. We could be denied coverage or gauged. In short, we would be screwed. Trump, of course, will sign on to anything putting him close to the winner’s circle.

We are invisible and have no clout.

I was interviewed for a site called Big Think.   They are partners with a few universities sponsoring a conference about hope and optimism.   I talked about a theme we have discussed in this space. Most diseases known to humanity have an affinity group they call their own. These organizations provide support and a public profile for people living with the conditions.

According to Dr. Google, there are an estimated 30,000 human diseases known to medicine. The number is staggering. I had figured there were like, maybe one hundred. Way off. All of these single illness advocates are competing for the same dollars. The federal government does not want to finance research on specific illnesses. That would cause a riot. They just appropriate money and not too generously for NIH. And, of course, Trump is calling for cuts in the NIH budget.

So during the videotaped interview, I blathered on about building a movement around a coalition of these groups. A portion of the monies they raise could be pooled and used to lobby for increased research on chronic illnesses and disabilities. And we could become a political force with clout.

Dream on. Never going to happen. Affinity groups, including the NMSS, jealously guard their turf. They value their control over fundraising and how the monies are spent. I believe all are taken with their own perceived power. I know that sounds harsh, but I believe that is how the world works.