Tuesday, December 01, 2009

Being Sick. Being Gay. Being Alive. Being Loved.

This was an article written by a friend of ours, detailing his odyssey through illness and hospitals and health care as a gay man. It first appeared in the Bottomline magazine HERE.

Swine Flu, Love and Health ReformBy Rick Vila
My husband, Ken Lyon, and I planned a two-week vacation in New England several months ago. We were excited to make the trip, relax in Provincetown, visit the famed mansions in Newport, Rhode Island, and drive up to Montreal to visit friends via picturesque Vermont and New Hampshire. We left Palm Springs feeling upbeat, looking forward to getting away from the desert heat and full of excitement. Little did we know that our vacation would turn into a 23-day odyssey that left us weaker, yet stronger; fearful, but more valiant; dumbfounded yet wiser; shaken at our core, but more in love.

Two days into our trip I felt sick with flu-like symptoms: chills, fevers, body aches, headache, coughing. I stayed in the condo we had rented for the week in Provincetown for three days, thinking if I rested, drank fluids and took over-the counter medications I’d improve. For two days I did feel better so we ventured out and about Provincetown, which was full of visitors due to it being Carnival week there.

That Saturday, we drove to Newport, Rhode Island, to see the famed mansions on our way to Vermont. I was feeling pretty good, though still a bit fatigued from the flu I thought I had just gotten rid of. While touring the Breakers, the old Vanderbilt mansion, I attempted to climb the lovely staircase to the second level. Suddenly I realized I was out of breath and couldn’t get up the stairs. A young man, also on the tour, said to me, “Sir, are you all right? You look very sick.” I was startled by this comment from a total stranger. I told Ken I was out of breath and wanted to go back and rest in the car while he finished the tour. We checked into a hotel in Providence, RI, and by morning I knew I was very sick. Ken asked about a local hospital and we were referred to the Miriam Hospital, a small, Jewish teaching hospital for Brown University’s medical school. Within one hour of arriving in the emergency room, I had been diagnosed with double pneumonia, had been admitted and put in an isolation chamber private room.

What followed was a total decline of my health to a level I had not known before, despite my age (55) and many previous health issues (HIV/AIDS, accidents, etc.). The second day in the hospital I was put in Intensive Care for six days, and developed two additional infections: clostridium difficile (which causes uncontrolled diarrhea and vomiting), and a yeast infection covering my buttocks and thighs that made me itch constantly.

As it turns out, I was told I had a confirmed positive diagnosis for the currently notorious swine flu. The state of Rhode Island’s health department quarantined me and anyone entering my room was required to wear gloves, gowns, masks and plastic shields over their faces. I was the first swine flu case for the particular medical team to which I was assigned and as such was studied by doctors, residents and medical students exhaustively.

I had at least two very dark days in I.C.U., where my very existence became tenuous. My oxygenation was declining and the doctor wanted to put me on life support. I pleaded with her to give me four or five hours before she did so, to see if I improved, and she agreed to respect my wishes. I realized I needed to release the enormous amount of anxiety I was feeling, and went into a very personal and private contemplative place to find internal light and strength to help me improve. I thought of Ken and how much I wanted to live to be with him, and how much I loved him.

My sister had flown up from Florida to be with us, and her presence, love and strength nourished me deeply. We have always been close and I knew I wanted to be around to grow old with her. Miraculously, as I surrendered control and anxiety and moved into a place of love, quiet and acceptance, my breathing improved. For six days in ICU I had an oxygen mask, three IV’s, a heart monitor. I was and felt dirty, not being able to shower, or clean up, and having constant diarrhea into a bedpan and having to urinate into a plastic bottle because I was too weak to get out of bed. My beard grew long and gray, my skin became scaly and itchy. My energy level nosedived to zero. I could not eat, stand, or even move, and nothing interested me, except the love and presence of my husband and my sister. I lost 30 pounds in the course of my hospital stay. But it is not the darkness of those days that I want to focus on or the reason for my writing. I’m writing to honor the values of love and gratitude.

For those skeptics of gay love, I have a story to tell. My story is that my husband, Ken, never left my side. I’ve loved him since we met, and always known him to be an excellent human being—now he is in my stratosphere. He slept in the hospital every night with me, including six nights in a chair in the I.C.U., and another six in the hospital room sofa bed. He cared for me lovingly, attending to every detail, dealing with all the logistics, advocating on my behalf, respecting my every wish, listening to me, and loving me unconditionally. He cleaned me, and comforted me as I shook with fevers, fear and despair. He hugged me and kissed me, when everyone else was masked. I think the hospital staff early on understood the power of love in our relationship. We were lucky to be in Rhode Island, where gay marriage is recognized (though not yet legally performed), and not in another state where things could have been very different.

I really got close and personal to the spirit of New Englanders: respectful, caring, independent, wise. My nurse in I.C.U was a man named Gary, who disclosed to me in conversation that he was a Seventh Day Adventist, and that he and his family’s priorities and life revolved around their church, where he was an elder/minister. I visited that religion’s website later and read of their condemnation towards homosexuals. Yet Gary could not have been more caring towards us, more respectful towards Ken (knowing full well of our relationship), or a better nurse. He even came up to my room after I was out of ICU to visit and see how “we” were doing.

Ken and I always refer to each other as “husbands,” which is what we are. And I believe the natural love we demonstrated openly towards each other was so transparent, and so beautiful, that no one could repudiate it. I think in the face of truth and love, human-crafted religious edicts lose out because nothing is greater or more imbued with truth than the power of love. The “Gary” lesson for me is to be cautious in the future about stereotyping people with too wide a brush. There are good, respectful, decent people of all religious, philosophical and political persuasions.

I got stronger every day and each day felt closer to normal. When we arrived in Palm Springs, the mountains had never before looked so beautiful to me; our house felt more grandiose than the Vanderbilt’s Breakers; our dog Lily’s wagging tail became a grounding bolt of what really matters. I spent the week feeling grateful. Grateful for Ken, for my sister, for the extraordinary care I received in the hospital, for the hundreds of friends and family who called, texted, sent flowers, cards, prayers and filled our refrigerator at home with homemade food, and put flowers and cards in our house to cheer us up upon arrival, and for my immune system, which fought back from a very weak place.

Since then I’ve enjoyed emptying the dishwasher and folding the laundry in ways I never have before. Ken asked me if I had felt any anger at what had happened and the fact that we missed out on our vacation. I thought about it, and said, “No.” The anger I feel is for the fact that millions of people in this country and this world don’t have access to the care I did, don’t have loved ones to care for them, don’t have the means or the voice to defend themselves during their most vulnerable times.

As the health care argument plays out on national television, I have a recent personal experience to relate. Despite having excellent private insurance, and sufficient personal resources to access the best care, Ken and the nurse case manager at the hospital spent over six frustrating hours on the phone making arrangements for my post-hospital care. When the logistics had finally been worked out, the contracted healthcare provider became a prime example of waste in healthcare. They delivered an oxygen converter machine, six oxygen tanks and more tubing than I ever needed to our hotel in Boston, not to mention reams of paperwork that I simply threw away. I didn’t use even a third of the quantity they brought, but I’m certain they will bill my insurance for it at top rates. No wonder healthcare costs keep soaring.

In the hospital, which offered me top-of-the-line medical care, I was given an excessive number of toothbrushes, creams and bottles of Keri lotion, none of which I ordered, and no clear instructions on how to put a stop to that wasteful supply. Is reform needed? Yes, a resounding YES. And people who think otherwise are either burying their head in the sand, or are simply selfish and unconscious in their thought process. I don’t know what the right path is to reform, but I do know what all parties need to put into their decision-making: the consciousness of love, dignity towards every living being, respect for the frailties of others, and simple smarts that uses available technology to keep waste to a minimum, costs contained and better accountability. We also need computerized medical records that can be quickly accessed nationally, and a system that offers top tier and seamless care to ALL Americans, with minimal bureaucracy.

My experience was very humbling, and I hope to become a better person because of it. I don’t know how I will do that, but I’m going to start by practicing being more loving and more compassionate, more forgiving, more conscious of the suffering of others, more cautious in my thinking, and more tempered in my response to the little things in life that in the end matter very little.

5 comments:

Dan said...

Must be my mood today, but couldnt help crying for so many reasons.
Love, life, the frustrations of being sick and away from home.

lelocolon said...

Thank you for sharing your lovely and significant story. Yesterday while I was getting ready to go to work I notice a really bad muscle ache and thought it was the sunday's workout. But as I was getting closer and closer to work I started experiencing incredible chills and bone ache. I had to turn back an called in. I went to my doctor and he is treating me for swine flu, even though not a positive confirm. So I am waiting. for the results. But like you having witnessed AIDS epidemics at its worst it baffles me as to why there are not more people taking the fight for health care reform.

kent f said...

You are so right that our husbands are our greatest advocates. Glad to know you are better. Will be in your fair city next week to enjoy the weather and scenery.

Biki said...

When we step that closely to the edge between life and death, suddenly what is truly important becomes crystal clear. We take pleasure in doing the small things. But most of all we become conscious of how much our loved ones mean to us. An explosion of love for them just expands out hearts to a previously never felt before size. Been there, lived that, and it changed our love for the better, and it hasn't faded away even after 13 years past.

Bucko (a.k.a., Ken) said...

Very touching story.