On December 21, 1998, I bid a final goodbye to a man I considered my Soul Mate, my life partner and best friend. He had held on to the last vestiges of life, supported by the wonders of modern technology, until the 8th candle of Hanukkah had lost its own spark and the Winter Solstice heralded the longest night of darkness and held the promise of the light to come.
My forty eight year old husband Michael entered into a realm of light that we had only imagined facing more than 30 years in the future. Throughout the nearly 12 years of our marriage, we would regularly talk of retiring to Key West, Florida where we would fit in perfectly with the colorful characters that had migrated from all over the world. Each night we would hold hands and watch the sun virtually sink into the ocean, listening for the final gratifying sizzle as we imagined it dipping into the vivid blue-green water. I have traded that vision for one far less soul-satisfying; scattering Michael’s ashes into the ocean there as the sky turns golden and magenta.
In 1992, Michael was diagnosed with Hepatitis C, ironically, when we volunteered to become bone marrow donors for a child in the community in need of a life-saving transplant. Our physician friend, Stephen Feig told us at the time, that the disease was “like a rust that eats away at the foundation of a bridge. Eventually it breaks through.” After numerous rounds of Interferon (the treatment of choice at the time which carried its own special “poison”), excruciating pain that I was at a loss to comfort, increasingly powerful narcotics, nausea, edema, exhaustion, memory loss and slurred speech, it finally broke through. Michael had always been frustratingly self-sufficient, determined to “do it his way”, but this disease forced him to rely on me for the most basic of needs. A few months before he died, I found myself bathing, dressing, feeding and often picking up my 6 foot tall husband, when the tremors, confusion and pain became more than he could handle on his own. There were times when he didn’t recognize the man who stared back at him; hollow eyed and pale in the mirror. I did my best not to let him see the deep despair I was feeling during those times and prayed for the day when he would receive his own life-saving gift and all of this would be behind us.
Michael’s spirit throughout this ordeal was inspiring. He managed to laugh his way through as much of this as was possible and when that didn’t work, cried his way through the rest. I laughed and cried, sometimes raged along with him. Only once do I remember him asking, “Why me?” He saw this tribulation as an opportunity to make positive life changes. Michael had many emotional wounds from childhood that needed healing. He feared and burned some bridges with friends as a result. With courage born of necessity, he took personal inventories daily and made amends with those he had hurt, myself included. I reminded him that we were a team and that this was the “in sickness” part of the marriage vows we had taken on an overcast, unusually blustery May day nearly 12 years earlier.
A few months before he died, he commented that had he known he was going to be this sick, he would never have married me. How lucky for both of us that we didn’t know! There is so much joy that we would have missed as a result. The truth is, the last 6 years of our marriage were deeper, richer and more fulfilling than the first five, because we allowed ourselves to be vulnerable with each other and value the time we had together, not knowing how much would ultimately be allotted to us.
In May of 1998, Michael was placed on the national list for a liver transplant. We were told that the wait could be up to two years, because of a lack of willing donors and that 50 percent of the people in Michael’s condition, which was tenuous at the time, die during that period from liver failure. At that point, we were could not conceive of a negative outcome, since Michael had a purpose and a compass by which to live, solid spiritual faith, phenomenal medical care; among the best in our region, a healthy attitude, a nutritionally sound diet and an amazing support system that is with me to this day.
For the previous ten years, we had published a monthly East Coast magazine called “Visions” which afforded us access to some of the best known healers in the world. When the disease continued to take its toll and Michael could no longer work, we transferred ownership of our “baby?” to friends in June of 1998. Shortly after, we began the dance between home and hospital racking up “frequent flier miles” as I facetiously announced each time we passed through the doors of the emergency room. It had become so commonplace that he had literally spent more time in a hospital bed than in our own in the following few months. On November 11, 1998, I returned home from work, to find Michael unconscious in our bed, snoring as if he were merely asleep, eyes rolled back. Heart racing, I called 911 and when the EMTs arrived, they asked me a question that caused the room to swim around me, “Is he DNR (do not resuscitate)?” I asked if he was in cardiac arrest and was told that while he wasn’t at the moment but should that occur on the way to hospital, they needed instructions. Years earlier, we both declared that if either of us was in a terminal state, we didn’t want to be kept alive on machines. Still believing that he would receive his transplant, I asked them not to invoke his DNR status. Sirens blaring, he was taken first to our local hospital where I was told that he had likely suffered a stroke from which he might not recover. Again, I was asked that terrifying question and once more my answer was the same. Hours later, I found myself seated next to the ambulance driver as she made her way through crowded city streets to Thomas Jefferson University Hospital in Philadelphia, the wailing of the siren in my ears; a sound that haunts me to this day. The doctors examined Michael and determined that he had not experienced a stroke, but rather an intercranial bleed from which he could recover.
Breathing the first of many sighs of relief, I made the necessary phone calls, rallying the troops to be by our side in this desperate hour. My mother flew up from Florida and remained with me for all but one of the next 5 1/2 weeks. Friends and other family members came in shifts, admonishing me to eat, rest and do other “normal people things” that I was hard pressed to do. During the forty days and nights (my biblical travail) that followed, Michael’s condition took dramatic upward and downward turns and my spirit followed suit. My world consisted of the room in the MRICU (Medical Respiratory Intensive Care Unit), which I came to call the “miracle unit”, the cafeteria where daily, the woman at the register assured me that she was praying for us and the family waiting room where I slept either on the floor or when there was room, curled up in a chair or love seat. All of the family members of those whose wounded bodies lay, waiting to live or die, became co-conspirators in an effort to pray them into wellness. Family of choice we were, brought together by circumstances beyond our control, desperately grasping at any hopeful news that emerged in the doctors’ morning rounds. I created a healing haven in Michael’s room, amidst the IV poles and monitors, ventilator and dialysis machine. Soothing music played at all times. Photos of family and friends surrounded him. Pictures of Michael in good health were on the bulletin board, so that the staff would recognize that he was a whole person, not merely a sickly body to which they tended. Mass cards, prayer icons, crystals and cheerfully inspiring greeting cards decorated the window sill. Michael was held lovingly in the prayers of people all over the world. We have a dear friend, Dr. Yvonne Kaye who hosted a weekly radio show at the time and requested that her listeners remember us in their hearts. The hospital staff who I will forever think of as “angels in scrubs”, cared for him with the utmost of compassion and proficiency.
Rev. Edie Weinstein-Moser
