Thanksgiving

I look forward to Thanksgiving. I like the holiday. I am a New Englander, so my positive attitude makes sense, for as long as it lasts. Family, friends and food. Who would have trouble with those? Two of our children are heading home. Seattle is a bit far for a turkey dinner. A wonderful energy will return to our usually empty house.

As always, ill health is the unseen guest at the table. Actually, my physical flaws are seen, even obvious. But nobody seems to notice anymore. The limp and slurring, clumsiness and fatigue are just part of the landscape. And then there is the matter of giving thanks.

To each his/her own, I say.   I am pleased I am still on my feet, that I have a life outside the house. I am in the homestretch on the book. The ax falls early next year. Most of all, I an grateful I can laugh and love and do not take myjourney too seriously. May you live in interesting times is either Chinese best wishes or a curse. I will leave that in the eye of the beholder.

Lastly, there is you. I am a lucky guy to have all of you, or whomever is left after I jumped off my moving train. I will be back by March. Until then, happy holidays.

26

Passed Down

I know the complicated emotional response to a devastating neurological condition passed down in a family. I am in the third generation struck by MS in my family. I understand the fear and the guilt that do not go away.

It was with special interest that I read in washingtonpost.com Carl Luepker’s account of the neuro-nightmare that hit him and now his son, Liam. Carl lives with Dystonia, a painful neurological condition. “For the past 35 years, a relentless neurological disorder has taken over my body, causing often-painful muscle spasms that make it hard for me to walk and write and that cause my speech to be garbled enough that people often can’t understand me.”

Liam inherited the gene and is facing the same grueling ordeal. “As a parent, you hope that your child’s life will follow an upward trend, one of emotional and physical growth toward an adulthood of wide-open possibilities where they can explore the world and challenge themselves emotionally and physically.”

Everyone in the family shares the disease. Lives change. Emotions are on edge because these diseases are relentless. And we see the symbols of sickness every day. “My heart breaks when I see his foot brace lined up with our family shoes in the front hall. He wears it now to deal with the creeping effects of the condition. Just as with me, his symptoms began to show at age 10.”

I cannot imagine. I was twenty-five, an adult when MS blindsided me. How does a young kid process the life sentence that has been pronounced? That is so young to learn the tricks it takes to live a halfway normal life. “His symptoms — his falls, his need to hop at the end of the day because of muscle fatigue and cramping — will continue to worsen.”

Welcome to an unfair world, Liam. None of us asked for this.

 

 

 

 

 

It’s Come to This

 

According to SCIENTIFIC AMERICAN, “Eighty percent of the human immune system resides in the gastrointestinal tract. Alongside it are the trillions of symbiotic bacteria, fungi and other single-celled organisms that make up our guts’ microbiomes. Normally everyone wins: The microorganisms benefit from a home and a steady food supply; we enjoy the essential assistance they provide in various metabolic and digestive functions.”

I keep hearing about this, anecdotal data from casual new aquatences. Not the stuff of science. Those of us who are chronic patients should know the value of big ears and an open mind. You may have heard about this yourself. Fecal microbiota transplantation (FMT), commonly known as fecal transplantation, consists of transplanting microbes from the stool of a healthy person to the gastrointestinal tract of a patient.

Not very tasteful, but let’s move beyond matters of taste and consider this on its merits. I know this theory is being tested at Yale and I believe at Harvard. The Internet is crowded with patient success stories that a scientist will (and should) ignore. But there is something to this idea. I would like to know what is happening. The procedure commonly is done via enema or colonoscopy.   Wouldn’t you go down this road if there were a pot of gold at the end?

Whew!

Two years after Richard Nixon lost the presidential election to JFK, he ran for Governor of California. He lost that race, too. At a news conference, Nixon famously said, “You’re not going to have Dick Nixon to kick around anymore.”  More than fifty years later, I say, keep swinging your leg. I am not going anywhere. As with Nixon, I am not a quitter. Or was that a crook?

I am reading your responses, even as I attempt to get past Chapter Nine, quicksand by any definition. Keeping up with a blog is tough enough. A book? Forget it. Why do we do this to ourselves? W. Somerset Maugham wrote voluminous short stories, many set in the South Seas. They featured Americans or, more commonly, Europeans, who had opted out and chosen lives of excess in beach communities. I have spent time with these stories, wondering, where did I go wrong? I have no answers.

My problem with the fantasy is that heat kills me. This summer has been oppressive.   A normal summer combines with climate change, and, voila, dust off the wheelchair. I barely can walk. This time summer is bad, really bad. Mr. Maugham, you are in danger of losing your audience. Spend time outdoors, then try to read. Concentrate. Write. Dream on.

 

 

Nosophobia

Nosophobia is a mew word for me. I stumbled on nosophobia while aimlessly trolling around the Internet.   Nosophobia is the irrational fear of contracting a disease. It applies to specific illnesses but can be used more broadly. I like exploring the world of words. This word gave me pause.

I have no particular fear of collecting diseases, though I think I have more than my share. Nophobia seems to be interchangeable with hypochondria. We all know those people. I find it interesting that we get used to what we’ve got. Futures are uncertain, but we know what we are up against. Certainly, we do not know what lays in wait for us around the bend, but our tolerance for ambiguity ripens.

I just do not have the time to obsess on what might happen. Do you? We have what we have. Nothing is going to change that.  Human beings do have the marvelous ability to adapt and adjust. Maybe that is Darwinian. Whatever. There are enough real challenges to keep us busy.

I better not get another disease.

 

A Lonely Tree

  • It is quite evident I have lost a substantial number of loyal readers who counted on this blog to air all kinds of issues relating to living with MS and other chronic conditions. Posts used to draw 40, even 50 responses that were intelligent and provocative. I knew the first names of so many of you. I felt we counted on each other to be there and engage. Alas, those days are over.
  • Those of you who still check in, even occasionally, may recall posts that worried how I would be able to keep the blog alive and vital once I signed a contract for Chasing Hope, my new book. That happened in January. The end of story should be obvious to all. Journey Man is dying a slow death. It has been hard to watch.

I cannot complain. No one has done me wrong. I have loved tending to the blog. But tend you must. It cannot survive and flourish on its own. It comes down to choices. I have been musing about hope for a long time. I care deeply about the subject. The trip to the Vatican for an adult stem cell conference and the subsequent stem cell clinical trial became part of the book. I hope to finish it by the end of the year. I suspect you all will have abandoned ship by then. I do not know how to reverse the tides. It will be what it will be.

I cannot apologize for making a difficult choice. I will have to live with the consequences. I am not going to say goodbye. That would be just too melodramatic for me. I will continue to write when I can. Think of me as the lonely tree in the forest. Maybe someone will hear something.

 

 

 

 

 

Independence Day

July 4th celebrates our nation’s escape from the tyranny of a colonial power across the ocean.   And so we cheer.   In this presidential election year, the candidates compete to project the strength and wisdom necessary to keep us free. Freedom is an important piece of our national identity, but is in the eye of the beholder. My large extended family sets off fireworks on a deserted stretch of beach every summer, mindful of the pride and power of that spectacle.

It is not lost on me, however, that the words, free and independent, mean different things to different people. Most of us, sharing our struggles and pain, writing in this space, agree that we are not free. And our independence is challenged each day. We are at a loss to do much about it.   We fight on, privately, indeed, quietly, and we do not give up.

We are not heroes, only survivors. There is no day reserved and ready to celebrate our struggle. Really, we are anonymous, never larger than life. Life rests at the center of our war with an enemy we cannot see. We fought on yesterday, as we will do tomorrow.

The nation does not honor us, nor does it pay much attention to the one in five of us who lives with a disability. Nearly half the population has at least one chronic illness. All of us are invisible, blending into the crowd that refuses to see us and shows no interest in helping us. And so, we celebrate our own version of independence. I, for one, am ready to continue going it alone. Someday our priorities will change, and we will acknowledge the terror of battling the enemy within.

Independence Day

July 4th celebrates our nation’s escape from the tyranny of a colonial power across the ocean.   And so we cheer.   In this presidential election year, the candidates compete to project the strength and wisdom necessary to keep us free. Freedom is an important piece of our national identity, but is in the eye of the beholder. My large extended family sets off fireworks on a deserted stretch of beach every summer, mindful of the pride and power of that spectacle.

It is not lost on me, however, that the words, free and independent, mean different things to different people. Most of us, sharing our struggles and pain, writing in this space, agree that we are not free. And our independence is challenged each day. We are at a loss to do much about it.   We fight on, privately, indeed, quietly, and we do not give up.

We are not heroes, only survivors. There is no day reserved and ready to celebrate our struggle. Really, we are anonymous, never larger than life. Life rests at the center of our war with an enemy we cannot see. We fought on yesterday, as we will do tomorrow.

The nation does not honor us, nor does it pay much attention to the one in five of us who lives with a disability. Nearly half the population has at least one chronic illness. All of us are invisible, blending into the crowd that refuses to see us and shows no interest in helping us. And so, we celebrate our own version of independence. I, for one, am ready to continue going it alone. Someday our priorities will change, and we will acknowledge the terror of battling the enemy within.

A New Partnership

In the winter of 2008, Americans learned that our future First Lady had grown up with multiple sclerosis in her home. Michele Obama spoke about her father, Fraser Robinson, who was a pump worker for the City of Chicago while he raised two future Princeton graduates.

The new First Lady described how she watched her Dad, “grab his walker, prop himself against the sink and slowly shave and button his uniform.” When he came home, he would reach down to lift one leg after another to make it up the stairs and greet his kids. I did not hear about the man again.

I had wondered if Mrs. Obama would assume a leadership role in the effort to win more funding for MS research. I realize that the endless array of diseases seeks better funding, too. The Federal Government cannot show favoritism. I get it. President Obama will leave office soon enough. So what happens then?

Ann Romney, wife of Mitt, Obama’s opponent in the 2012 race for The White House, was diagnosed with MS in 1998. The Romneys have founded the Ann Romney Center for Neurologic Diseases at Brigham and Women’s Hospital in Boston, a Harvard hospital. Mrs. Romney has told audiences she could barely get out of bed back then. She looks like a million dollars now. That she is willing to go out front is wonderful.

I hope Mrs. Obama speaks out about MS and the courage of her father when the First Family leaves the limelight behind. What a team she and Mrs. Romney could make. Bill Clinton and George H.W. Bush ignored party lines with their charitable projects decades ago. That kind of alliance has existed before. It’s not a bad idea.

 

 

 

Bored

Plus ça change, plus c’est la même chose. The more it changes, the more it stays the same. Ain’t it the truth? The more I focus on my physical problems, the clearer it becomes that little is changing, at least as I can see. Grass continues to grow, but it looks the same to me today, as I expect it will tomorrow. I am bored by my obsessiwith on my health.

Frequently I say the enemy in life is not conflict or disappointment but boredom. If you are bored in your relationships, it is time to do something about it. It’s only goingto get worse. My problem at the moment is a variation of that theme.

I am bored by MS. It is a nagging pain in thebutt, but that was true yesterday and I have no reason to expect the situation to change by tomorrow. Too much time is spent ruminating about possible outcomes. I have only so much psychic energy to pour downm the drain, and I am overspending, worrying about tomorrows. I am bored. Bored. And it is getting in the way of my day job. Worrying about everything else.

I read about possible breakthroughs on a number of disease fronts. Nothing buzzing about MS so far. That is OK. I do not take it personally. But thinking about it only makes me tired. And maybe a little agitated with myself. I can think of better things to fill my mind, like when is this horrible presidential election going to be over?