Stem Cell Infusion #2

I am ready for the next step, now just days away. So much has gone wrong since my first stem cell infusion, it is time for something to go right. The pulmonary embolism, psoriasis and shingles – all unconnected to the clinical trial – were intruders that broke down the door and invaded my body only weeks after the first stem cell infusion. I do not know what if any effect those conditions will have on the good work of the millions of stem cells swimming somewhere south of the top of my head. The doctor says none.
I like the man and trust him, but how does he know? This therapy is new and has never been tested before. We re pioneers, heading toward a new territory, and we all know from the movies what can happen to pioneers. Actually, I like being a pioneer, and I know my scalp is safe, except when I buy theater tickets in New York, And the trial is rife with possibility.
I wonder if age is an issue here. Again, we do not know. Does a guy in his mid-sixties (yes, I am that old) have the same potential to respond as a younger person? We will find out. I assume there is great diversity in this group lucky enough to be included in the trial.
As far as I am concerned, this experiment is as much for my children as it is for me. I am the third generation hit by MS in my family. My kids are still in their twenties. For us, the stakes are high. For all of us, the stakes are significant. Our stories are different, but we share a single reality. A disease that must be wiped out forever.

48

Defending Self-esteem

When I step into the trap of believing I am less of a person than I used to be, is that a thinly disguised message from others or a self-generated attack on my own self-esteem? As Meredith walks beaches alone while I sit at the computer, when she shops in Provincetown as I sit at the computer, I do feel I am less of a person, less of a man. I, along with everyone else, am a product of my culture. Or is that, a prisoner of my culture?
I believe the answer is both.
As a person, I feel robbed, as a man, inadequate. Those are very different dynamics. Popular culture is reductionist, and Madison Avenue groupthink creates the ideal man. He is only a modern version of the Marlboro Man and a logical next caricature. We, the infirmed, are not that guy. He is perched on a stallion, not a Segway. How do we compete with that creation? By ignoring it, I think, and believing that our world is well stocked with others who do not buy into what they see on television or read in glossy magazines.
As a person, control seems less tenuous. I understand my limitations and feel the pain. No one asked for this. Then it is time to move on, recognizing all we are and always will be, rather than bathing in disappointment. That is not so easy. But we have it in us. I did not see the world as I do today, could not write or express myself until I was sick. I am not overwhelmed by what I can do, but I have more or less stopped mourning my losses.
We should not lose sight of the fact that we fight two simultaneous wars on parallel tracks. We battle conditions that only know attack and will not retreat. And we fight the view of us as diminished and pathetically beyond repair. Pat Buchanan used to instruct us to keep our powder dry, but we cannot shoot at common misapprehensions of sickness and assumptions about our physical flaws. We have to sell what we really can offer the world in return for open minds.

50

Vacation

Apologies. I checked out and went to Cape Cod. Instead of struggling to walk across a sandy beach and burning the hell out of my feet, I sat at the computer. I guess using a different machine for a while constitutes a vacation. Working on a book, well, forget about it. I need to try writer’s rehab.
Looking at events in northern Iraq, watching Kurds battle ISIS, and following the fun in Ferguson, I don’t feel so bad about my life today. Everything is relative. I can get so carried away and negative about my lot in life, which really is not so bad. My kids are happy, my wife quite successful, and I can string words together like beads on a cheap necklace. I am not hungry. How bad can life be? Back to the salt mines this afternoon. I am looking forward to breathing air I can see.

28

Weird Diseases

An obscure web site caught my eye, BrilliantBias, which has made it its mission to identify the Seven Weirdest diseases in the USA. Not deadliest, Not dangerous. Not mysterious, miserable or nastiest. No.. Weirdest. That’s right, weirdest, which begs the question, exactly what is a weird disease? I could not wait to find out, though there was nothing to find out. No definition offered. Only idiocy.
No one likes getting the cold, but after reading this post you’ll be happy if that’s the worst you endure. Here are some of the top “weirdest” diseases in the USA. Number One, the app aren’t winner, is Mad Cow Disease. Okay. I guess weird can apply just this once.
I almost dropped my teeth when I came to Number Four. Multiple Sclerosis. So now we are the fourth weirdest people we know. How weird. . Multiple Sclerosis- Basically your immune system is attacking itself and therefore your brain deteriorates causing several neurological symptoms. So that is what happened to my brain.
Twitching. Twitching?, spasms, muscle weakness, and tremors, are all typical signs of MS. It can happen to anyone of any age mostly seen in women between the ages of 20-50. Symptoms can come on suddenly and the patient can go into symptom remission where they won’t have symptoms for a while. There are currently no tests to show MS, diagnosis only by a doctor and symptoms. Sometimes they can see brain deterioration on an MRI.
I invite you all to have at this Number Seven is the Bubonic Plague.

31

Pushing the Limits

When my legs gave out at Grand Central Station yesterday and I barely made it up a flight of stairs, I realized I was in trouble. Police officers and railroad workers came over to offer help. New Yorkers are so misunderstood. I was on my way to a meeting in an office building adjacent to Grand Central and hobbling down an endless corridor. Grand Central is no small place. The train platforms are concrete slabs without end, many leading to steep stairs. Though I had options, that morning I had chosen the hard way. I like trains.
I figured the walk would be manageable and good for me. I do try to keep my legs in motion as much as possible. By the time I got up the stairway to heaven, I knew I had made a mistake. When I neared the end of the concourse, I knew I was in big trouble. And when I saw stairs instead of an elevator, I could only hope to make it to them to sit, instead of hitting the ground full force.
I reached the stairs and sat, clutching a railing. A cop told me the entrance to the building I needed was at the top of the stairs. They might as well have been Everest. It is amazing how far grit and determination will carry you. Once I was in the office building, a maze of long hallways awaited. I arrived at the office and fell into a chair. The meeting was moved to a conference room a few yards away.
I was meeting with the physician who had organized the Vatican stem cell conference we attended last year. When I described my trek in to see her, she looked at me as if she could see how loose the screws were. “Why did you do this,” she gently asked. She was in physical therapy after a double mastectomy caused by breast cancer. She understood the hard work of healing the body.
For years, I have pushed and pushed, I said. Use it or lose it. I am trying so hard to stay out of a wheelchair. I will work as hard as I have to. The trouble is, I continued,, I never know when I am pushing too hard and risking injury. That sort of misses the point. Anyone with MS or another chronic illness should know not to go easy on yourself. Knowing our limits is hard.
Sometimes I overdue it. I left the office yesterday in a wheelchair.

57

Looking for a Relationship

You are single, divorced, whatever and you are looking. You meet a man or woman. You are interested. And you are sick, with MS or a hundred other illnesses. That news can advance rather quickly to the front of your mind. Your condition may be old news to you, but that sinking feeling in your belly says you are sitting on a social bombshell. Probably you expect the worst.
You probably never thought of kissing your employer. This might be different. Matters of the heart can squeeze out most everything else. So what do you say, and when do you reveal the whole truth and nothing but the truth? I am sure there are different schools of thought on those questions. Ann Landers is not with us anymore. For now, I will have to do. But please do not take this to the bank. I am an armature.
You might want to wait until you believe the relationship; is getting serious. That moment can be slow in coming or strike like lightning. I had been burned before, so I told Meredith on our second date. I was boxed in a bit because my failing eyesight raised questions right away. Like, what is that thing against the wall over there? “A piano.” We were at dinner at a new restaurant for us. I figured if she was going to sprint to the fire exit, I might as well know now. If nothing else, it would save the cost of dessert. Meredith did not move and wanted to know more. I took that as a positive sign.
These moments are tough for both parties. For one who is sick, the emotional stakes are high. We might already be doing battle with our sense of self-esteem. Social insecurity hits the healthy, so imagine what it can mean for us. We feel awkward and probably defensive, which puts us behind the starting line. I never got used to that. I feel bad for those who avoid these situations altogether. They are missing out on an important piece of their lives.
Let’s be fair. The other person is in a tough spot. Not everyone is cut out for taking on a life of serious sickness. There is no crime to saying, I can’t handle this. You are terrific, but a life with you might not be. I want children, and I cannot inflict this on them. I can argue that children are adaptable, and bringing kids into a home with chronic illness will make them better people.
There will be no day in court here. Only two adults hopefully speaking the truth. There really is no right or wrong. This should be a good faith effort to communicate openly and stay on high ground. There should be an understanding and no scars. There are a lot of available people out there. I hope all of us never give up.

41

Looking for Work

And now, the moment all o f us have been waiting for. With immeasurable relief, I am switching subjects: what to tell potential employers about our health when we are out there on the mean streets, looking for work. When Calvin Coolidge was riding the economic boom of the 1920, he uttered what probably was his only memorable line, “The business of America is business.” The citizenry did not call him Silent Cal for nothing, but he was right, and many of us want in.
Is silence how the sick and disabled should make that happen as we meet with potential employers? I was in graduate school at C Columbia when I lost vision in my second eye. I was advised o tell the truth. I headed downtown to meet with an NBC executive who had promised a job after graduation. I told the hard truth and watch the light in his eyes flicker and die.
When I was then a candidate for a producer job with Walter Cronkite, I told myself, screw the truth. I lied, left health questions unanswered and faked my way through the company physical. I got the job with the most trusted man in America, but I was not proud of how I got hired,
The irony is that Cal accidently hit a raw nerve with boomers, who often over-identify with what we do for a living. We are what we do. I stepped into that trap years ago.. But it is not just ego and pride at stake here. It is making a life work and supporting a family. Most of us do not work to feed our egos but because we have to.
We are damaged goods in the eyes of many bosses. They stupidly assume we will be unproductive, unreliable workers. Anyone in the workforce who carries around a chronic illness knows we feel the need to constantly prove ourselves and do good work. In hard economic times, employers are less likely to take chances. We may know hiring us is not taking a chance, but we cannot save individuals from their own ignorance. And there is no appeal.
The 1990 Americans with Disabilities Act makes it unlawful to discriminate in employment against a qualified individual with a disability. Case closed. Well, not exactly. When you are not hired, you will never know why. If you are obviously disabled, in a wheelchair, on a walker or standing with a seeing eye dog, there is no hiding the truth. Going to court to prove your qualifications is expensive and probably a long shot, anyway.
If you are not wearing your disability on your sleeve, say nothing. I learned that the hard way. You owe The Man nothing but your best work. Years after I left CBS News, Cronkite’s executive producer, long retired, told me I had done the right thing. “If I knew you had MS, I would not have hired you.”

47

Noise

When my career at CBS News came to an abrupt end, an executive commented as I tumbled through a trapdoor onto West 57th Street, “You are a square peg trying to fit into a round hole.” I was a provocateur. No question. I still tell my friends I left in a cutback of one. So why should I stop now. Those guys from Hartford asked to meet with me. Their agenda was not clear to me.
They spoke with the energy and enthusiasm of liberated souls. They talked to me about how little they had known about sexual dysfunctio n and MS. They also shared how much they now understood how much urolo gists could do to help them. We had a very upbeat session. I figured many of you would appreciate knowing about these people and this center. That is all. I am not pererring in your bedroom windows.
Sex is a touchy subject, even inside the house.I really was not expecting you to share the intimate details of your lives. I only wanted to share my experience.I was kidding when I wrote, Silence. I wish I had thought to make a sign carrying the same message when my kids were growing up. But I do think we are less than honest with each other and ourselves with regard to sex.
Next, the death penalty. Or maybe gun control.

17

MS and Sex

Before last week’s dinner, I sat down with nine guys from the Mandell Center for Multiple Sclerosis in Hartford. Mandell deals with urological issues related to MS. This is the only program of its kind in the country. These guys were a support group. Imagine that. Whoever heard of a male support group talking about sex?
What was so interesting was although there are various urological issues associated with multiple sclerosis, there are specific sexual problems that go hand in hand with deeply troubling urological issues. Ninety percent of men with MS will experience a urological issue, many of them sexual.
We sat in a circle and talked openly, without hesitation or embarrassment. Have you ever talked openly about the need to wear diapers because of incontinence? Dr. Marlene Murphy-Setzko is a urologist specializing in MS. She put the group together and says continence and sexual function define quality of life for her patients. They say self-esteem is a big problem.

“I took seventeen patients to a restaurant, many going for the first time. They had never been out because of their embarrassment at incontinence” she said. “There is a lot we can do for these people.” Marlene told me phobia of catheters is common and keeps men away from doctors. “Men would rather use crutches scooters or canes than have a catheter put in.” Dr. Murphy-Setzko went on to say that incontinence put patients in institutions. Hard to believe in 2014. The more things change, the less they change.
But get these guys together and they want to talk about their sex lives and sexual dysfunction. They do it with ease. Many women are treated, and men are encouraged to bring partners and spouses. “They need to understand the problems,” according to Marlene, “ and know it is not their fault.” The it can be decreased libido, trouble maintaining erections and achieving orgasm.
Sexual impulses are transmitted through the spinal cord. Lesions will block those signals, too. Medications can help some of these problems. Of course, here is the famous little blue pill. Decreased libido and a numbed genital area probably are out of reach. It is too bad so many of us remain locked in the closet on issues of sex. Patients can be helped, but they have to step out in the light.
These problems in men are too little recognized and underserved.

17