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.

 

 

 

 

Backing Off

Charles M. Blow wrote the following in the New York Times after the 50-day mark of the Trump presidency: “There is no new Trump.

There is only the same old Trump: Dangerous and unpredictable, gauche and greedy, temperamentally unsuited and emotionally unsound.” Enough said. It is time to change the subject. I am making myself crazy, and that can be a contagious condition.

A funny thing happened last weekend. I had talked to Meredith and our kids (Kids? Ages 28 to 24) about putting together a family meeting to talk about my anger excesses during and after my two bouts of cancer. I had written about that in the Times in 2002.

“My head was down, and I was not seeing the people around me. I had assumed that the children would rejoice in my presence. They shrank in horror. My fangs were bared, and they were sharp.

Do your homework, turn off the music! I snarled. ‘Clean up that mess! Don’t leave it for your mother and me.

The kids had unloaded on me in that Cases column in the Science Times. On Sunday, Meredith and I sat with Ben and Lily, who were in town for a short visit. We got Gabe on a speakerphone, calling in from Seattle.   Our conversation was friendly, frank and forgiving. This was fifteen years later, and perspective took over. The conversation was for my new book. It brought back old memories, and our talk stayed with me.

Today, we are trapped in the moment in our national conversation about our lives. We are getting knocked around by high emotion. Those of us living with serious sickness must process our own frustrations. We operate on overload. That is not as healthy way to live. I am trying to disengage from politics. Trump is not going to change and I assume, neither are we. I cannot stop caring, but I do not have to bathe in my contempt. Now I am content with the newspaper in the morning. The television is off. Soon my sanity may return.

 

 

 

 

A Different Disease

This blog is intended to explore different dimensions of disease and our collective abilities to cope. That is a wide mandate. A disease is defined as a disorder of structure or function. We have a national disorder that is devastating. We are waving the white flag and giving in to sickness.

The White House is proposing a $1.2 billion cut this year to the National Institutes of Health’s budget, targeting research grants.   That is about a twenty percent cut. We seem to be laying down arms and assuming fetal position. Almost twenty percent of us live with a disability and nearly 50 percent have at least one chronic illness. Trump is turning his back on us, and there is silence.

One valid and vital coping mechanism is our resolve to fight back and protect our lives and those of our loved ones. That is instinctive and should be overpowering. Seems basic to me. Yet I hear little and sense no resistance.   Yet many are fighting for their lives.

My much-loved brother-in-law is fighting pancreatic cancer spread to his liver. It feels as if he has been abandoned. Rep. Tom Cole, a conservative Republican from Oklahoma, is one of the few on the Hill who gets it. “We have more to fear from a pandemic than from a terrorist attack,” Cole said on morning television.

There is so much at stake for us, and we have become the silent minority.

Editor

Clearly my editor is incompetent.  The writer is not too swift, either.  But you should get the gist of the argument.

Addendum

It occurs to me drug companies have the same perceptual problem Trump struggles with, though I doubt he is self-aware enough to know it. Pharma gets it and spends big money on PR people to alter the narrative. Many of us are predisposed not to take claims at face value.   We judge both harshly because we have them firmly pegged. Fairly or not, we believe we are not playing for the dame team. I hang out on Manhattan’s Upper Westside. Not too many Trump voters there. Or any.

perception speaks louder than truth, though sometimes they coincide.

With great fanfare, Big Pharma announces a new MS drug. Sweeping claims infiltrate headlines. Automatically, I do not believe them.   P atient expectations skyrocket. Demand builds. Great for business. When Antigren (later Ty Sabr) iwas about to go to market, in the public mind, it was right up there with the Fountain of Youth.   Biogen has a well-oiled PR machine that spread around money to prominent patients to join the team. Somehow, I was not invited into the tent.

Trumpism was built on big talk and few details. And so far, no results. Now that healthcare has been blown, what goes down next?   The wall on the Mexican border was a big promise. Let’s wait and see.   I predict it will remind us of Jericho, except it will never will actually go up. I cannot imagine the tight-fisted Freedom Caucus wasting money on that.

Alas, I do not believe much of anything an I cannot imagine the tight-fisted Freedom Caucus wasting money on that.

Alas, I do not believe much of anything any more.

New MS Drug

Today’s New York Times story about a new MS drug is tantalizing. FDA Approves First Drug for Severe Multiple Sclerosis, the banner reads. What could that mean? I have been known to complain about medical hype, but this =is the Times.  I read on, curious to learn if my SPMS or the more virulent PPMS could be helped..

“Ocrevus by Genentech, showed the most notable results,” according to the Times, “in patients with relapsing multiple sclerosis, appearing to halt progression of the disease with few serious side effects. In patients with the more severe form, primary progressive multiple sclerosis, the drug only modestly slowed patients’ decline, but medical experts described it as an important first step.”

Wow. Another first step. Should we be excited? I guess every step forward matters. How much is open to question. Am I overly negative or just cynical? Big headlines sell products. Genentech said Tuesday that it would charge a list price of $65,000 a year. That is a hefty price tag for uncertain results.