What’s the Deal with the Hootenanny?
It’s my 59th birthday on June 28th.
What 59 means to me….
My brother Michael died five weeks before his 59th birthday. I am living the life he did not have the chance to live.
Michael called me from a hospital bed mid-summer 2015. Not to tell me he was sick- but to let me know that he listed me as the emergency contact on his admissions paperwork.
I had missed seeing him recently at our niece Zoe’s graduation party. Not the kind of thing Michael missed. The thought crossed my mind to check in and see why he missed the event but as often happens, life got lifey and I didn’t call him. He called me from a hospital bed.
“Oh my God Fish (nickname we gave each other) What happened? I’ll be right there.” I didn’t wait for the answer and I headed to the hospital. Over the next three months, we spent a lot of time together in hospitals.
At Easter earlier that spring I remember thinking Michael looked bad. Red face overweight, belly as big and tight as a kettle drum. I remember saying to my sister-in-law Betsey “Uncle Mike looks like he’s going to pop.” It wasn’t a joke. I was worried. My brother Michael was known to enjoy a lot of sugar and a lot of beer. Not a good combination.
When I got to Mercy Hospital Michael was still in the ER. As his designated family member, I was allowed in to be with him. I asked him what was up, he filled me in…. sort of.
“They say I’ve got some disease that only appears in sub-Saharan Africa! I have a really rare disease. I think I got bitten by some kind of bug or a virus or something…” Sounded fishy. The Dr came in to round on Michael and he said without uncertainty or confusion- “Your brother is an alcoholic. His liver is cerotic. He’s got to stop drinking or he’s going to die.” Michael was offended. When he left the room Michael said, “I haven’t had a drink in a month. This guy is an ass.”
The story began pouring out. He had been having trouble with his vision and in fact he thought he was going blind. On the advice of a friend, the previous month he had gone to Mass General Eye and Ear to see a specialist. It was here Michael learned that he had become so profoundly vitamin K deficient that he was in fact going blind. He was quite literally drinking himself blind. The Specialist at Mass General had spent years in sub-Saharan Africa and had seen this type of blindness as the results of this vitamin k deficiency in severely malnourished children. This is the genesis of the story of the health problems… a strange African disease… not alcoholism.
Over the next month Michael’s health got increasingly worse. He continued to deny this was as the result of his drinking. He was in and out of the hospital several times with infections, confusion, severe cramps and fluid retention. I quit my job. It was clear this crisis was going to take up some significant time.
The fluid buildup in his abdomen became infected. This caused trauma to kidneys. They stopped functioning. Michael was dying. He was transferred to Mass General. That transfer almost killed him and it saved his life. Michael spent most of July all of August of the summer of 2015 in Mass Generals intensive care.
Over the next four years we spent a lot of time together. In hospitals and out of hospitals. The specialist at Mass General said he’d never live outside of a hospital setting again. He did. The details of which will be a story for another time. When it came to the decision during that time to live or die, Michael decided to try to live. It took some arm twisting to get his to undergo the dialysis that would extend his life but he did it. When he made the decision to try it, I promised him that when he decided to stop, I would support his decision without question.
Michael beat the odds and lived a sober four years during which he worked himself onto the transplant list at Mass General and off the dialysis that was keeping him alive.
Here’s the thing- living with someone who is close to death is a beautiful and life affirming.
Michael got kind of well and deeply spiritual. He stopped drinking. He did get himself out of that hospital and after about three months he was able to live independently at home. It was a miracle to witness.
During the ensuing three years Michael showed up for life. His relationships deepened with all of us but more importantly with himself. He pursued interests, showed up for his kid’s nieces and nephew with an open-hearted passion. He understood that this was his second chance- he lived knowing that his life and his relationships were precious. We had no veils between us. He was my touchstone for no bullshit truth telling keeping it real kind of living. Death’s inevitability will do that.
With Michael I shared the rare opportunity to experience a true, open trusting relationship. He helped me grow as a mother. His guidance and advise were presented over drives to Mass General or in waiting rooms at doctor’s offices. We had no secrets.
I dared to tell him what I thought, what I hoped and what I dreamed. He told me what he thought and he encouraged me to dare to live my life as he was living his. Like there were no guarantees. His presence in my life for the last four years of his life were a gift the meaning of which became clear only after his death.
Michael knew he was dying. After having worked himself off dialysis. Going from three times a week to once every couple of weeks. It worked for a while… until it didn’t. Michael had been through enough medical interventions. He decided he was done.
For a week he tried to make a date with me to tell me the news. I pushed him off. He insisted we meet- I knew something was up.
Michael told me at that lunch date that the recommendation was from him to return to dialysis three times a week. He told me he was not going to do it. “But you’ll die! Come on… its summer!” I tried to tell him that he should undergo a few treatments and get himself through the fall. “Michael- its August! No one wants to die in August… wait till October or November!” He as unconvinced. We had another one of those conversations wherein I told him I needed to say everything to him even if it were uncomfortable because when he dies I didn’t wat to have any regrets. I told him I had plans… The timing was bad for me. He told me to go live my life.
I told him about his daughter Erin’s up coming birthday. He remained unconvinced. I said he hadn’t told me what he wanted his end of life to look like. He asked me to come to his doctor’s appointment that next day. I did. Both his doctor and I reminded him he has a lot to live for. He said that was easy for us to say. His mind was made up.
We began making plans. I started telling him mine. We had a family meeting. We set up Hospice, we made a plan for his end-of-life care and for family dinner the next day.
That next day he was gone.
My life has been forever changed because of my brother Michael. It was through his encouragement that I dared to take the necessary steps to be living my dreams.
On one of those long days on hospital time I had described to Michael my vision:
A dance and concert series on Peaks Island. Bringing world class musicians to our community to bring something meaningful something beautiful and something real. I want to continue to engage in creating the kind place I want to live. A joyous endeavor for the pure pleasure of celebrating something beautiful. A contra dance series in a community where sometimes opinions get it the way of simple kindness. A turn on the dancefloor builds a new kind of acceptance of each other. I wanted to find ways to bring simplicity back to living with one and other. It sounded fanciful. Michael jus said “Then do it.”
I dare to because Michael would want me to. I want him to be proud of the life I’m creating. Michael loved nothing better than a turn on the dancefloor and a to sing a full-throated song. I’d like to believe he’s here celebrating my 59th Birthday with me.
This weekend we will host a concert and throw a Hootenanny. We will sing, dance and play tunes. I will celebrate and I will remember. Life is for living and beauty matters. Thank you Michael. I love you ya’ fish-head.
