Axis of Heroes: Stephen Henry

Generally I blog to vent, usually over things that irritate or frustrate me.
If you manage to wend your way through some of the previous posts, you know that I have made a special acknowledgment to the enablers of this administration.

It is no secret that I despise Bush and his cronies for they represent virtually everything that is wrong with this country. They are intellectually dishonest or unaware, greedy, hypocritical and self serving. For me this is our generation's McCarthy period where the very foundations of our country are being tested by dishonest and disingenuous human beings who are guiding this country towards fascism all the while proclaiming their patriotism (for more on this read Naomi Wolf's "Fascist America, in 10 easy steps" in the April 24, 2007 issue of the Guardian). History tells us that those who hide behind the flag and the specter of patriotism are the ones who usually compromise and contradict the values that our wonderful democracy and Bill of Rights actually represent. History will not treat Bush or his enablers kindly.

But this is not another political rant. This is a particularly sad one. I have some friends who care to engage in political or other intellectual discourse. We may not always agree but we challenge each other and provoke some serious thought and reflection.

This is an elegy to one of those voices which was silenced on September 29, 2007. My good friend Stephen Henry lost his valiant fight with the horrible disease Amyotrophic Lateral Sclerosis (ALS), often referred to as "Lou Gehrig's disease."

Actually Steve was silenced months before when he lost his ability to speak so the extended conversations essentially stopped there. He was left to type out his communication via computer (I should say "tap out" since he was as pathetic a typist as yours truly) or scribble out his thoughts on a piece of paper. Gradually those motor skills deserted him as well, leaving all communication as a simple shake or nod of the head or the ubiquitous "thumbs up" .

Steve was an extraordinary human being, a man with a quiet dignity and I'm glad to say my good friend. He was a gentle soul, not one for material goods. He was not prey to the pettiness or the narcissism that sometimes plagues the human condition. I never once heard him speak ill of another person. Perhaps in a rare moment he would flash a look of skepticism or disbelief but he was never rude or unkind.

Steve was habitually upbeat and positive, preferring to find the humor in any situation. His sunny disposition and outlook made him a joy to be around while serving to remind me of my own shortcomings. He was generous of spirit and loved giving gifts to his friends, especially the female ones. Steve was simply an amazing person and I'm not saying that just because he was my friend. As the Irish like to say, he had a lot of gifts, save the gift of years.

He was indeed a modest man who chose to work as a teacher of special needs kids in the Los Angeles United School District. I'm not sure this was even work for Steve but something he really loved. Clearly he loved his kids, his colleagues and his work. He had a special gift for his work whether it was sharing his life with his special needs students or simply sharing with them his pet boa constrictor "Fluffy". And clearly they loved him as we found out at his memorial service.

One can take the measure of a man by the company he keeps. From his many friends whom I've met over the past ten years, to the many people who stepped up for Steve when his illness became apparent or who came to the parties and other social functions, I've learned that he was indeed an extraordinary rich and fortunate man with many friends.

And now looking back after his recent death, I came to realize Steve was giving us all one last gift beyond bearing witness to his remarkable courage: that of his love of his friends and his family. As he courageously stared down his illness, he introduced his friends to one another, allowing relationships to thrive and flourish. He gave that so we might give of ourselves which is one hell of a final farewell.

Steve and I met shortly after I moved to Los Angeles from New York. We had mutual friends and then discovered that we shared the same health club so we saw each other often. Since we were both chronically without girlfriends, we spent a lot of time together trying to remedy this situation.

For Steve, dating was a science that needed to be deconstructed and evaluated. He took it very seriously, trying a variety of tacts, once even joining the Playboy Club so he could hang out at the mansion and play pool--all the while eying the very attractive bunnies. He read a lot of books, purchased self help tapes and cds, tried online dating services and so forth. He would schedule his appearance at the health club based on the periodic influx of young talent. More than once he dragged me to singles parties that he somehow encountered either online or through other single friends.

The dating scene was very important to him because it opened up the possibility of a long term relationship and marriage--two values that I think were very important to Steve. Like the rest of us, he had his share of successes and failures. But whatever happened, he remained positive and hopeful that the right one was just around the corner. And so he went about it in an extremely methodical way and I know it was one of his biggest, if not the biggest, regrets that he never married.

Another way he chose to present himself to the fairer sex was on the dance floor. By all reports, he was quite the salsa dancer and though I never witnessed his talent, one friend respectfully (and not without more than a little envy, I should add) referred to him as a shark, moving gracefully along the dance floor looking for female dancers as prey to be his dance partners.

He began experiencing problems with his leg in August of 2005. His foot dragged and he described it as if he was wearing a snorkeling flipper on one foot. For months he went through a variety of tests while battling his insurance provider to authorize some genetic testing. Steve was adopted so he had no clue as to his birth family's medical history. The initial diagnoses were either misleading (at one point ALS was actually eliminated) or uncertain.

As his mobility worsened, he continued to persevere. Finally in March of 2006 he was informed that he had ALS. I remember the day he told me. I had been traveling on business and just returned to LA after several weeks. We ran into each other at the gym and he matter-of-factly informed me that he was diagnosed. No anguish. No moment for self pity. I was stunned and shaken, primarily because I had heard that ALS had been eliminated earlier and now it turned out to be the culprit but also because he was SO calm and in control of his emotions while the rest of us were numbed and upset.

He announced his illness to his friends in this dramatic, humorous and uplifting email on March 19th 2006.

As some of you already know, two weeks ago at UCLA I was diagnosed with ALS (Lou Gehrig’s disease). It is a progressive degenerative neurological disorder. There is no cure or treatment, and the cause of the disease is still unknown. The neurologist said I have probably about 3 and a half years left to live.

I was anticipating that when the neurologists finally figured out what I have, it wasn’t going to be good news. Walking now is a challenge for me, and speech is becoming increasingly difficult...

Since traditional medicine doesn’t hold any answers, I am continuing to explore alternative treatments to halt or slow the progression of the disease. However, if this is the way I am meant to die, then so be it. I am not afraid of death, but I would prefer to die in a more dignified manner - like being trampled by the elephants at the circus.

This disease may break my body, but it won’t break my spirit. I intend to keep on living each day to the fullest and laughing about it all. The love and support I have received over the past year from you has kept me going, and I do appreciate all of the wonderful people in my life.

-Steve

Per the ALS web site, this is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually lead to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed.

A-myo-trophic comes from the Greek language. "A" means no or negative. "Myo" refers to muscle, and "Trophic" means nourishment---"No muscle nourishment." When a muscle has no nourishment, it "atrophies" or wastes away. "Lateral" identifies the areas in a person's spinal cord where portions of the nerve cells that signal and control the muscles are located. As this area degenerates it leads to scarring or hardening ("sclerosis") in the region.

As motor neurons degenerate, they can no longer send impulses to the muscle fibers that normally result in muscle movement. Early symptoms of ALS often include increasing muscle weakness, especially involving the arms and legs (as in Steve's case) , speech, swallowing or breathing. When muscles no longer receive the messages from the motor neurons that they require to function, the muscles grow weak and begin to atrophy.

Steve confronted his illness with a very strong spirit and a determination to live the best possible life available to him. He faced each challenge in a courageous, thoughtful and private way. I never heard him once complain. I never heard him utter one word of self pity. I never heard him ask anything of anyone that made them uncomfortable about his illness. So I made every attempt to avoid or ignore the illness or even the mention of it. Obviously this is not always possible but I made every effort that when I visited, that his illness would not be front and center.

In addition to his profound courage, Steve also approached his illness with a sense of humor. He reveled in making jokes about his condition all the while trying to lighten the load for his friends. He spoke fondly of the attention paid to him ("chicks dig wheelchairs"). He loved zipping down the street and often spoke of his desire to trick out his wheelchair. He embraced the little things like disabled parking and sidewalk cutouts that eased the quality of his life, mostly because we learned that not every city or town actually has them.

But most importantly, everything he did was for the benefit of his friends, to ease our pain. And I'd like to think we responded in kind. Unfortunately I have seen a fair amount illness and death in my life with both my parents and my sister having suffered from terminal illnesses. I've found that friends either step up or they step away. I'm happy to report that most--not all--of Steve's friends stepped up and in a very big way.

After Steve was diagnosed, a bunch of us got together and formed a support group. Our goals were a lot loftier than what we accomplished but I do know that we made things a bit easier for him. We searched for wheelchair friendly apartments and when one was found, we moved him in. We took turn running errands, buying food or taking him to the doctors. In 2006 we threw him a surprise birthday/Cinco de Mayo party and he loved it. In February of this year we arranged a party at Casa Del Mar, where Steve liked to sit and watch the less than subtle pick ups. But mostly we visited him, talked with him and shared our lives with him. I know many of us made a concerted effort to visit with him as often as possible, trying to keep his spirits up. And we did.

Like others, I was with him at several watershed moments in his illness: at the beginning when he struggled with health care providers to pay for genetic testing; when he decided to move permanently into a wheelchair and when he got an unwelcome reality check from a woman whose husband died of ALS (both on our Mexican adventure in June of 2006); last August when he was betrayed by a Peruvian woman who tried to take advantage; last winter when he began to lose the ability to speak and again this summer when he could no longer hold a pencil in order to write. I came back from my annual sojourn to Vermont and knew Steve was not long for this earth. So I made a concerted effort to spend as much time with him as possible. These were remarkable visits as we sat and watched the Los Angeles Dodgers. I did a lot of talking and Steve, very patiently, did a lot of listening. I made a point of hugging him and made no effort to disguise my genuine love and affection for him.

I've witnessed some extraordinary bravery in my life, firstly from my own sister who defied every expectation and through the avatar of her own will lived six years after being told she would survive for only two and now from Steve, who was dauntless and heroic in his own battle with this insidious disease.

So I want to honor my friend and his courage. I don't mean to suggest that Steve was the apotheosis of perfection but he was indeed quite remarkable. Yes he was capable of occasional miscalculations and errors of judgment in public and private affairs. Like all of us, he was prey for the usual human failures. But on the essentials, for the long run, in good times and bad, Steve Henry lived a honorable and productive--albeit all too brief--life. I am proud to have known him and to call him my friend. He was loved and he will be very sorely missed.

In Steve's honor I am starting the Axis of Heroes and he is indeed the very first--and very likely only--honoree.

Stephen Henry died in his sleep on Saturday September 29, 2007. He had made the very difficult decision very early on in his illness that he did not want to be on a respirator. So he gradually weakened as he struggled for breath. He died with dignity, bravely facing his fate in a way that defies easy description and is quite frankly beyond my ability to articulate. He was only 49 years old.

So I'll close by sharing his final email, something he thoughtfully composed well in advance of his death but delivered shortly afterwards, followed by a few stanzas from one of my favorite poems ("Charles Sumner") from Henry Wadsworth Longfellow:

To My Beloved Family and Friends,

In March of 2006, I announced to you all that I had been diagnosed with ALS and that the doctors had given me about three more years before my body would finally give up on me.

Well, they got the disease right, but the time frame was slightly off.

If only we did have more time.

Today, much to my relief, my spirit has moved forward into God's Light. The only regret I carry with me is that now is the time we must say goodbye.

Thank you for your love, your support, your prayers, your thoughts, your friendship, your goodwill and your amazing humor. Every moment I had with you in good times (and even in not-so-good times) was a tremendous gift to me. I thank you again.

Our goodbye is only for now. The next time you see me, I'll be the guy standing up -- no wheelchair -- with the outstretched arms and a big smile; ready to give you a huge hug.

Until that time, we can all count our blessings every moment of every day.

I certainly count you as one of mine.

In Love and God's Light,

Steve


...Death takes us by surprise,
And stays our hurrying feet;
The great design unfinished lies,
Our lives are incomplete.

But in the dark unknown
Perfect their circles seem,
Even as a bridge's arch of stone
Is rounded in the stream.

Alike are life and death,
When life in death survives,
And the uninterrupted breath
Inspires a thousand lives.

Were a star quenched on high,
For ages would its light,
Still travelling downward from the sky,
Shine on our mortal sight.

So when a great man dies,
For years beyond our ken,
The light he leaves behind him lies
Upon the paths of men.

-Henry Wadsworth Longfellow