Three years before my mom passed away, her best friend Diane passed away. Diane had lived for the majority of her life on the sparsely populated Beaver Island in up-state Michigan, across the way from Charlevoix and only reachable by ferry. I can remember spending a week one summer in high school up there and how our nights were spent watching sunsets and swinging on a tire swing just feet from Lake Michigan. I also remember, long before my mother got sober, how she and Diane went out for a night of drinking at Jack’s, the only bar on the island, and my mother lost her contacts, which she had taken out and placed on the beach to put back in her eyes later. Diane had made tapes of all of their favorite songs from high school, and even though we had gone to the island with my mother’s best friend from college and her daughter, the week, in my mother’s eyes, was obviously devoted to Diane, who she rarely saw through her adult life. So when Diane passed away, I found my mom on her couch, sobbing uncontrollably, and all she could say was, “now that Diane is gone, who is left that really knows my soul?”
And that was the crux of my mother’s mission statement in life. She often told me that, much as Woody Allen had quoted, “we are but a bag of soul.” She was a woman of strong faith, even though all of her life she walked a fine line between Christianity and Eastern religions, she believed that somehow God was found in the common constraint of loving your fellow main and doing the next right thing. “Once I am gone, my body is just a shell. Do NOT be attached to my body.”
So I find myself tonight needing to tell this story which has haunted me for over two and a half years now, only to pass it on in hopes that maybe it will help someone else and because, well, it’s just a powerful story.
In February of 2008, my mom became very ill and could no longer walk down the stairs. My aunt, her only sister, and I believed for a long time that it was some psychiatric symptom of years of suffered depression. At one point, my mom sobbed her way down five stairs, screaming “Oh sweet Jesus” the entire way, only to beg me to carry her up at the landing, unable to walk another step. After several failed attempts at hospitalization, I received a phone call from my father during a session. “Peter, I’m at your mother’s house. She was in the shower and fell and your aunt called me. Meet me at the emergency room now. She may not make it another 24 hours if I don’t get her there now.” And this alone was a miracle as my mother and father had been divorced since I was 8 and hardly got along, yet my father, and even my stepmother on some level, had become very involved in my mother’s increasing sickness.
And so I rushed to the hospital and arrived just in time for my father to carry my mom into the hospital and put her in the wheelchair. It’s important to note that my father has been a surgeon at the same hospital network for over 30 years and even so, could not get her the immediate care she needed, as hard as he tried, for all of those, like my mother, who believed in socialized medicine.
I could write paragraphs about the weeks leading from hospital room to intensive care to dialysis which ultimately led to her being diagnosed with Wegener’s Granulomatosis, which affects 1 in 30,000 people. For those interested, since Wishard Hosptial in Indianapolis diagnosed her with this disease immediately, yet Community Hospital could not for over two months, I thought I would include the outlook of the disease as described by the Vasculitis Foundation;
Remission: There is no cure for WG, but early diagnosis and proper treatment will be effective and the disease can be brought into remission with complete absence of all signs of disease.
Long-term remission can be induced and maintained with medications, close management and regular lab tests to help monitor the disease. Treatment can produce symptom-free intervals of 5 to 20 years or more. Some patients will achieve a drug-free remission. However, relapses are common but can be caught at their earliest and most treatable stage, for most patients, by paying attention to patient symptoms and lab tests. WG patients in remission must not hesitate to see a doctor if any WG symptoms return or if they are not feeling well.
So, as you can see, if caught early, it could have been resolved, yet my mother went into a coma in a hospital bed, and just recently I realized, I don’t really remember anymore the last time that I actually spoke to her. I believe it was some time before when she told me we should have a talk where I asked her anything I wanted to know. I told her I didn’t understand why she wasn’t fighting her illness and she replied, “If I knew what it was, I could fight it.” Later, when I attempted to contact an attorney because I felt my mother had been mistreated and under-diagnosed by the hospital and team of seven plus doctors, who NEVER communicated with me or my aunt, plus the several nurses who had a different, layman’s diagnosis and outlook for me every time I walked into the room, I was told that I had no case. My mother was dead before she ever walked into the hospital I was told.
Yet to me, she had been very much alive.
Until I flew back from a short trip to Las Vegas, prepared to make a difficult decision and my aunt, sobbing in a sharp, dark suit, coiffed hair and huge sunglasses spat at the doctor’s sitting around the conference table, “my sister is dying in there and none of you can tell us what is wrong.” Suddenly, they were very willing to discuss our options.
My mother, who was 64, loved to dance in her kitchen every day to Bob Dylan, The Grateful Dead and Janet Jackson, walked about 3-5 miles a day, only ate an orange for breakfast and berries for lunch to preserve her health, took calcium so she never walked hunched over like my aunt, had no preceding health issues, couldn’t shut up if you tried and laughed and cried so heartily over stories and memories that she could have written volumes, would forever be confined to a wheelchair, feeding tube and oxygen tube. She would never again walk or be able to see and she would be in an acute care facility for the rest of her life. She would never dance. She would never again see the sunset on Beaver Island or her own backyard for that matter. She would never be able to sing the lyrics to Forever Young by Bob Dylan or smell an orange. She would never be able to hold my hand and know that it was me.
My aunt turned to me and held my hand, her tears streaming her face. “Please Peter, I’m begging you. This is your choice, but please, please, do not do this to your mother. This is no life. You know that she would never have chosen this. Please don’t do this to her.”
And yet, as I sit here now, crying as I type, I wonder, would she? Because really, you never know.
But I decided that this was the end for all of us. I could give her peace. She had given me life. And I could give her death. And so we decided we would wait two more days, until Thursday, to give time for friends and family to come and say goodbye, and then we would release her, much like one of her favorite Bob Dylan songs…I Shall Be Released!
That night, after praying and thinking about my decision I received a phone call from the hospital. My mother’s heart rate had dropped severely low and they wanted to know if they should revive her if she should begin to pass. I immediately answered yes, knowing that my aunt would want to be there. The nurse explained that to revive a body was not as painless as it appeared in movies and that maybe I should reconsider. So I told her to let her go if it came to that but asked if I could come up and see her, to which she replied that I could come up at anytime.
So I took a shower, changed into a shirt my mother had bought me for Christmas and went up to the hospital at 2 in the morning. I sat there all night, telling her all of the memories I had, although she was completely unaware. I told her my reasoning for why my ex and I had broken up, since he was always such an important part of her life. I told her she was an amazing mother. I forgave her for her alcoholic behaviors of my childhood and I thanked her for her sobriety. I asked her for forgiveness and I told her things I have only shared with a few others. I sat there and talked to her about my dog Benji from when I was young and how she and I would act out Laverne and Shirley. I thanked her for her compassion, her humor and her sense of civil humility. I forgave her for passing on to me her incessant need to talk and her lack of picking battles. And when the sun came up early in the morning, I said goodbye to my mother and drove away…and her heart beat on.
We had decided to meet at the hospital room at 8:00 pm. My ex came by and said goodbye and to this day, that encounter was probably the hardest thing I have ever had to endure, as I watched him touch her hand and I remembered them laughing and smoking in my car as we drove to casinos and Christmas vacations. Sometime during the day, my father went in to see my mother and I’m still unaware of what he said to her, but I heard he was in there for quite some time. I just hope she got the answers she always wanted from him because for her, although they had long had their differences, he would forever be her one and only husband.
I asked my friend Lis to come with me. When we arrived, we were met by my aunt and uncle, several of our close friends, including my mother’s other best friend from high school and a friend we had made recently and my dear friend Craig, who is a doctor. He had agreed to be there for support and to let me know she wasn’t feeling any pain. Sometime close to 8, the nurse came in and I signed a paper releasing my mother from any kind of support. They unhooked everything and…
“This could take a long time.” Craig said.
“How long.” I asked, having prepared myself for this and having been in the same hospital unit for close to three months.
“An hour, a day. It could take two weeks.”
“What!” I said. “I don’t have two weeks. I’m ready.” I said, and I began to panic. But her heart rate didn’t slow and it appeared that my mother was breathing and living on her own, without any help from any machines.
I was encouraged to tell her she could go and I did but nothing changed. Finally, sobbing, I turned to Lis and asked her to say the Serenity Prayer over my mother. “Out loud?” She asked, and I nodded my head. But just as Lis was taking her hand I stopped her and said, “Actually, please say the third step prayer.” And Lis, beginning to cry herself, her tears running down her rosy cheeks, held my mother’s hand and began to recite the third step prayer.
“God, I offer myself to Thee–to build with me and to do with me as Thou wilt. Relieve me of the bondage of self, that I may better do Thy will. Take away my difficulties, that victory over them may bear witness to those I would help of Thy Power, Thy Love, and Thy Way of life. May I do Thy will always!”
And as she softly spoke these gentle words, my mother’s heart slowed and she stopped breathing.
She was gone. She had surrendered.
And while this may seem strange or eerie depending on how you look at it…it is honestly the truth, and what followed was almost the exact death scene from Terms of Endearment. And I walked over to the other side of the bed and watched as my aunt began asking where my mother would go now and she became inconsolable herself as they explained. And finally, my uncle took my aunt out into the hallway and everyone left me alone in the room with my mother to say goodbye.
I looked down at her hand, weathered from the tubes and needles and I held it close. The same hand that had hugged me and soothed my head. The same hand that had held mine through pumpkin patches and through the lawn at the art museum. It had held my hand before my first day of school and it had patted my cheek because she just wanted to feel how my skin felt, she would often say. And that hand…was just a shell. She was gone and I knew it the instant she passed away.
Gone was the smell of Michael Kors perfume and the sound of her laughter. Gone was the dancing to Thelma Houston and Donna Summer or the singing of Bob Dylan and Neil Young or the Beatles. Gone was that indescribable handwriting that wrote Christmas cards and Halloween Cards accompanied by little drawings of pumpkins and Christmas trees. Gone were her hugs, her long discussions of her dreams to be Edith Head’s assistant designing costumes for Hitchcock movies or a trial attorney living in San Francisco harbor on a houseboat. Gone were the even longer discussions about civil rights, gay rights, Rosa Parks and the Chicago Seven, not to mention her days working in the library at Northwestern University. Gone were all of the phone calls about the first days of snow or snow days in school met by grilled cheese sandwiches and tomato soup. Gone was the fighting the bickering and the making up afterwards where we realized how very short life can be. “We’re on borrowed time as it is”, she was fond of saying. Gone was the smile, the laughter, the stories…
But all of that remained as well to some extent. And I realized that day that she didn’t die, at least it didn’t feel that way. She passed on…or away, which is why I use that term today. I believe it is so much more fitting. And I gave her a funeral which she would have loved. It was much like a movie and she was the star. The funeral was procession was led by my cousin’s son David, who she adored and my ex Shawn was a paul bearer, as was my friend Lis…she would have loved that a woman was a paul bearer at her funeral. And Mahalia Jackson sang “Softly and Tenderly Jesus is Calling and A Closer Walk With Thee” from the speakers. My father spoke, my cousin spoke, Lis read the Third Step Prayer and our friend Maryann read “The Road Less Taken.” And I spoke. Of movies that she and I loved, of times we spent together, of people we had shared and I said goodbye.
I found a note on the day that she died taped to an old black, Indian dress in her basement. “Please bury me in this Indian dress from the 60’s with a flower garland of daisies in my hair, my favorite cross, my beaded earrings, no shoes and patchouli oil. And I would like one, acoustic guitar to play “Moon River” at my grave site while everyone sings along. Thank you!”(with a smiley face…she loved little drawings.) And she got all of that.
She never got to see how happy I’ve become and that in some way how I’ve been reborn. She never got to see me accomplish my dreams. She never got to see me fall in love again. And she never got to meet Alex, which has been the hardest part of all because she would have loved him as much as I do and he would have taught her how to salsa around the island in the kitchen and they would laugh and smile, and while that never happened, somewhere I believe that it did.
And while she is gone, and yes, we are but a bag of soul, I am reminded of her often. In the wind, in the snow, in the sun and in the soft notes that the music carries. And so when certain songs that she loved mysteriously play on my IPod, like her favorite Bob Dylan song “The Girl From North Country”, I like to think that she is singing to me on those notes and reminding me to live…live…live…because we’re on borrowed time as it is!