Archive | JOURNEYMAN

Christopher

 

Most of us have not met, or so I assume. Yet I feel I have crossed paths with many of you.   When I see familiar names over blog responses, I can make pretty good guesses about what to expect.   Christopher, when I spot your name, I assume a high level of knowledge is headed my way. I know nothing of your personal life. TI believe tere have been hints you live on the West Coast, which probably means you are in Nebraska.

What I wonder is if you live a “worst case scenario.”   I do not. When I write about the

disappointments I carry on my shoulders, I am acutely aware that others face a tougher journey. In that regard, I am a lucky guy. That makes writing a blog difficult because there is no average experience with MS or any other illness. It is easy to sell the utility of personal strength and virtue of independence when I still am on my feet and able to go to work. I cannot write about hopelessness when I do not know it.

Christopher, I believe we all bleed for you. You have given us much and there is little we can do for you in return. Please know we are in your corner. I myself owe you because you consistently add dimension to much of what I write.   I wish I could reach out to you through a computer screen and across miles of fiber optic cable. We are your friends≥

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Christopher

 

Most of us have not met, or so I assume. Yet I feel I have crossed paths with many of you.   When I see familiar names over blog responses, I can make pretty good guesses about what to expect.   Christopher, when I spot your name, I assume a high level of knowledge is headed my way. I know nothing of your personal life. TI believe tere have been hints you live on the West Coast, which probably means you are in Nebraska.

What I wonder is if you live a “worst case scenario.”   I do not. When I write about the

disappointments I carry on my shoulders, I am acutely aware that others face a tougher journey. In that regard, I am a lucky guy. That makes writing a blog difficult because there is no average experience with MS or any other illness. It is easy to sell the utility of personal strength and virtue of independence when I still am on my feet and able to go to work. I cannot write about hopelessness when I do not know it.

Christopher, I believe we all bleed for you. You have given us much and there is little we can do for you in return. Please know we are in your corner. I myself owe you because you consistently add dimension to much of what I write.   I wish I could reach out to you through a computer screen and across miles of fiber optic cable. We are your friends≥

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Givingup the Ghost

Do you ever stop whatever you are doing and pause to tell yourself you are just freaking sick of the whole thing? This is not to be confused with playing the victim card. That is very different. I am talking about reacting to the endless sameness of the struggle, day-in, and day-out.

For me, it only takes the morning tedium of showering, shaving, brushing teeth and struggling to dress. Then come tie shoes. It is wrestling with the footwear that usually pushes me over the edge. Have I already whined about petty frustrations. I think so. They can define a life.

But focusing on life’s little tasks seems safer than facing the deeper hurt that comes from being less than we wanted because of the assault from a disease and disability that block us and wear us down.   Sometimes I think of what I cannot do because of arms and hands, fingers and toes that no longer serve me. I consider what legal blindness has taken from me.

Frustrated? Blame the MS.

Though I cannot handle a baseball bat, I want to swing for the fences. Those who feel sorry for themselves do not step up to the plate and fight the good fight. That contest can be whatever challenge we choose. It does not have to be epic or of interest to anybody else. If a reasonable goal is to feel good about ourselves, that can happen. It is easy and unfortunate to get psyched out and give up the ghost.

 

 

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Surprise!

Congress finally shouted, NO!, to Trump and voted to increase funding for the National Institutes of Health, even as he proposed a $7 billion cut that would have crippled medical research. What a guy. The Senate voted to increase spending on NIH to the tune of $36.1 billion.   The House approved a more modest increase, though according to the New York Times, the final number is likely to end up close to the Senate appropriation.

The move was bipartisan, and the action sent a signal that nobody on The Hill these days is afraid of Trump. There is another signal that went out. People care about their health and will remember who voted how when they go to the polls in 2018. For those in precarious health or worrying about their family’s future, we can sit back and smile, at least for the moment. We have not won the war, but we still are in the fight. Republicans view protecting health as a tool of economic development. That is just fine. A vote is a vote.

We have plenty of reasons to question the plans and priorities of this president.   They are not likely to change, though I doubt he will be foolish enough to veto this funding.   Let’s ask all Trump supporters if they would rather work toward a disease-free America or an immigrant-free country.   Let’s conquer diseases and yield the monopoly on walls to the Chinese.

 

 

 

Relax

Do we really want to cure illnesses in this country? Please allow me to sound a really cynical note on this fine summer day. It occurred to me the other day that big organizations and businesses have more to lose than gain if diseases are cured and the suffering stops.

Affinity groups, single illness advocates, are large parts of our culture. A cure is a ticket to the unemployment line for many thousands of employees. Big Pharma would put the secret of any cure in a safe, secret location, hidden away from society. They cannot be in favor of cures. Drug companies could lose billions.

We depend on sickness to keep our economy humming. We are deeply invested in suffering. But fear not. We are too committed to continuing our war in Afghanistan to come up with the funds to cure anything. And don’t forget the wall. Got to have that wall. Don’t bother me about cures. Luckily, there don’t appear to be too many on the horizon.

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.

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.

 

 

 

 

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.