Archive | JOURNEYMAN

Hope Revisited

I keep ruminating about hope, probably thinking it to death. Not a new subject here. My book, Chasing Hope, is to be published May 1st. I am not going to use this space to sell the book. That would be pretty cheesy.   I only want to say I am as confused about where the magic waters of hope are as I was when I started asking questions a few years ago.

As I worked on the book, I consulted religious leaders, some of whom I found doctrinal and pretty inflexible. I won’t name them. A few went with the flow. I spent time with a few prominent journalists who have known illness and injury. They were cool, though probably I just related to them.

Anyone who lives with serious sickness must be familiar with the idea of hope. Many must take it for granted and pass up the need to question it. For some, hope and faith go hand-in-hand. You cannot have one without the other. We have been on that ride3 together.

I do think hope has to be sensible. “Hope is easy for the foolish, but hard for the wise. Everybody can lose himself into foolish hope, but genuine hope is something rare and great.” –Paul Tillich.  That is the epigraph in my book.

 

Frankly, I spent a few years complicating a simple subject. You either have it or you don’t. Is hope always sensible? Now that is a good question. A much-loved brother-in-law recently died of pancreatic cancer. From his first scans, it was clear what he was up against. The issue was not what but when. We spent a lot of time last summer with my sister and her family and had wonderful time together, even as he grew sicker. When died in October, it was a shock to the system. I was not prepared. We had hoped for more time together, knowing what we would get would not be enough. For me, hope had just happened.

I believe hope cannot be controlled. For me, it is an involuntary response. I cannot reason my way in or out of hope. I have tried.

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A Thanksgiving Journey

Our three children live in Seattle, San Francisco and Santa Monica. The balance of power certainly has migrated west, and we are meeting in LA for Thanksgiving.   So much for roaring fires, at least in fireplaces. Meredith’s assistant booked us on Jet Blue, and I got a knot in my stomach.

I ‘ve flown Jet Blue out of JFK before. I know the usual wheelchair drill.   You grab a Skycap with a chair at curbside. Usually they are amiable folks who want to help. They get boarding passes and guide passengers through security with a minimum of waiting.   Want to buy a newspaper on the way to the gate? No problem. The expedited process deserves a healthy tip.

Not at Jet Blue.   The guy with the chair listens to what you want then ignores it. Suddenly passengers are dumped in a holding area with other chair bound travelers. The first time, my skycap just walked away, saying nothing. I sat confused, feeling like just another piece of baggage. There ware Jet Blue attendants around. Good luck getting their attention. I think people just look away.

Flying these days is dehumanizing enough. We were treated as if we were cargo. I looked at the faces in the area and saw weary looks. Maybe some of us come to expect this. Skycaps are skycaps for a reason, and they are only following orders.   It was not just what they did but how they did it. Finally someone showed up and rushed me to the gate. No time for a newspaper.

Airlines are right up there with the phone company, hate able and with no accountability. For the disabled, that means alienation to the second power. I have been put through the Jet Blue wringer a few times. Nothing has changed. I know a losing battle when I see one. Indifference is not malicious, only thoughtless and insensitive.

Happy Thanksgiving.

Obsolescence

My computer is disturbingly like my body. The machine is slow and plodding. Sometimes it slowly ceases to respond at all. I awaken each day, wondering what frustrations will rise with the sun. I expect maddening frustration and usually am not disappointed.

What works today frequently does so reluctantly, suggesting tomorrow will be a day of disappointment. So I get on the phone with my neurologist or computer doctor, knowing each will be an expensive hassle.   Not that I’m complaining. Do you have days when it seems nothing works?

Built-in obsolescence is a piece of our lives, isn’t it? It seems to be in the natural order of things in a lagging economy or with our aging bodies, especially as we continue to get older. And the limited life span is built into products to keep the economy chugging along. I would like to appeal the system, though I have no idea of where to address my angry letter. Like my mom used to say when any of her kids was pissed off, “tell it to the judge.”

Now, once more, I cannot read your responses to any blog posts.

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≥

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≥

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.

 

 

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.