This year, 2023, has been a rough one for my family and I. 2022 ended with my friend, Scott Smith, dying from ALS at just 41 years old, leaving behind two toddlers and a wife. We entered the year precariously as my Dad’s health was going downhill. In 2022 he had been diagnosed with Progressive Supranuclear Palsy (PSP). This is neurodegenerative disease that causes issues with balance, cognition, memory, hallucinations, and so on. By December of 2022 he was on hospice. On February 22nd at exactly 3:02pm he took his final breath.
A month later was my 40th birthday, the first in a string of firsts without him. He never lived to see my youngest’s first birthday. Finley was only 5 months old when Dad passed. For the first month or so I was prone to burst into tears at the random memory. I once opened a bag from my parent’s house that released an immediate and undeniable smell of my father. That is all it took for me to become overwhelmed. With time these “moments” as I came to call them became less frequent and intense.
Then, in August, my Mom had cataract surgery in her left eye that went horribly wrong. She had an infection due to the surgery that took her eyesight and caused her health to look a little precarious (from my perspective) for awhile. Months and a repair surgery later, she still hasn’t regained her full eyesight, though things are trending in the right direction.
This instant, coupled with my concern over my mom’s stresses from dad’s loss and cleaning up the estate, left me very worried for my mom. But as fall crept closer things were looking up. Approaching Finley’s first birthday, I began to have a few more of my “moments” including one big ugly cry a few days before at my home office desk.
Then came the news about my maternal Grandma. The cancer they treated years ago had come back and migrated from her pelvis to her lungs. The doctor didn’t recommend treatment and Grandma didn’t want to go through chemo again.
Now, as I write this, hospice has informed us that Grandma is actively dying. Hospice moved a hospital bed into her home to help with her care and comfort. Much like they did for my Dad. Its February all over again… the “moments” have returned.
But I am seeing them differently. Bubbles of memories, hopes, wishes, fears, dreams, happiness, and sadness popping up randomly like those ethereal spheres rising from a bath. In some ways I welcome them. The immense surges of emotion. Because they remind me that I’m still human. That I care more than I can usually show. And because they spur memories that I love and cherish.
One of the kindest men I have ever know, Scott Smith had it all. He was funny, handsome, a singer and guitarist, kind, smart, a business owner, a husband, a father, and a friend. He was my personal trainer off and on for years. He was immensely kind to me and supportive and fantastic at motivating people.
Near the beginning of the pandemic, Scott started experiencing his first symptoms of ALS. By the fall he had been diagnosed with ALS. This became an opportunity for him to spread hope around the disease, aiming to be part of the first generation of ALS survivors.
He used his platform as a trainer and entrepreneur to raise awareness and funding for ALS research. He even blogged regularly about his experiences in an elequent form. You can read about it at FlexOnALS.com. In early December, Scott passed away peacefully in his home surrounded by family. He was a friend and until his diagnosis I didn’t realize how much he had affected my life in so many positive ways.
The last time I was able to hold any kind of conversation with him as his brain was falling apart was on Superbowl Sunday. We were watching our favorite NFL team, the Kansas City Chiefs, win another Superbowl, this time against the Philadelphia Eagles. We had a lot of fun, intermixed with confusion as he had some hallucinations leaving him talking to someone that wasn’t really there. At one point he even thought that Mom and I were cheering for the other team and got a little mad at us. Overall, we had a good day and made one last memory with Dad.
The Superbowl was the last time I saw him fully awake. On the morning of Monday, February 20th, I got a call from my Mom’s friend Rebby. The hospice nurse had just did her rounds and said that Dad was actively dying. That he didn’t have long. I took the news in stride. Intellectually I knew the time had been coming, emotionally I knew no such thing. And when I made the phone call to my wife, that is when my emotional dam broke.
I couldn’t make it more than a few words before I was incoherently crying into the phone. I finally gathered myself enough to explain what was going on to her. She left work early and we went to join the family at his bedside in the living room of my parents house.
We brought the kids over to see their Papa one last time. Friends of mine and my parents visited and comforted us. Family took turns visiting. All the while we remained vigilant, near his bed and occasionally holding his hand and talking to him.
There was one thing that I knew I had to tell him. That I knew I had to say before he would shuffle off this mortal coil. That was to tell him that I love him and that it was ok for him to let go and drift off to whatever comes next.
I just couldn’t do it. I heard my mom tell him that. I heard my sister tell him that. Both on that first day. It wasn’t until that third day, around noon, that I was able to finally tell him this. Three hours later, while we stood around telling inappropriate jokes in his honor, he took in a big breath, went still for a minute, then the corner of his mouth twitched almost to a grin, then two more breaths and he was gone.
This event is seared into my memory. He was surrrounded by my mom, my sister, my wife, my aunt (Dad’s sister Jeanette), a few friends, and myself. My aunt just looked around asking “Was that it? I think that was it.”. My wife checked his vitals (she is a nurse) and declared that he had passed.
I don’t think I have ever cried so hard for so long in my life. It kept hitting me in waves. I sent a text to my closest friends as I just couldn’t bear talking to anyone at that moment. I called each in turn hours later after I had collected myself.
As I stood there, looking at his grey ashen body, I remembered words he had spoken to me from time to time as I grew up about bodies. He would say “I don’t like seeing dead bodies, its not really them anymore, its something else, they have already left”. I had seen a number of dead bodies at funerals over the years and in that moment I couldn’t agree more. This wasn’t him anymore. It was an empty vessel.
I helped prepare my Dad’s body, putting his final outfit on him. Then I helped transfer his body to the gurney for the crematory and guide it out the door to their van. That was the last time I laid eyes on my Dad. I cried again, bubbling out of me unbidden and uncontrollably. It hurt.
As we prepared his final wishes, we planned a celebration of life. It is a concept that replaces a funeral. Funerals are sad and somber affairs. And Dad always said that he didn’t want people crying at his. He wanted them celebrating his life.
So we planned a pot luck of sorts. We contacted everyone we knew, that he knew, and asked they bring some food and join us. We rented a place called the Lumber Co Event Space that used to be a lumber yard. It was an old building, the kind my dad loved to visit. Filled with old decorations including an old vacuum tube wooden radio. It was totally Dad.
I created a video to display with two of his favorite songs as background music and photos of him through the years. I wrote a eulogy that captured his unique personality and sense of humor. It was a great day. We laughed, we cried, and we saw people that we hadn’t seen in years. He would have enjoyed it. And he would have been shocked to see that over 100 people showed up to his celebration of life. He didn’t think as much of himself as others did of him.
Its October now and Grandma’s health is declining rapidly now. She is on hospice, in lots of pain, and isn’t eating much. That was a sign that I recognized with my Dad as an indicator that the end was coming sooner rather than later, even if I didn’t accept it then. I accept it now.
I’m not as close with my Grandma as many people are with their’s. She lives 40 minutes from my house and there are not many subjects we can bond over. The main subject we have bonded on over the years is traveling. Specifically to England where her own grandma is from.
My Grandma has never been a particularly warm or emotional person, which has made feeling a connection difficult at times. In all the years I have known her, I can’t recall a single time we exchanged “I love you”. Yet when I visited her (twice in the last week), I told her that I loved her as I was leaving and each time she said it back to me. I’m still stunned.
When I got the call from my Mom of her deteriorating state, also on a Monday (what is it with Mondays? Its like I am stepping into a big pile of something), I was rather matter-of-fact and neutral about it. But then, off the phone, another bubble appeared, I’m having another “moment” again.
Throughout all of this I am finding myself thinking more about life and death. Of milestones. Of hopes and dreams and fears. I fear ending up dying young like Scott or losing my mind like my Dad. But mostly I fear my kids growing up without their daddy. And I am saddened that they will grow up without a grandpa, just like I did. It feels like a missing piece of growing up, when your family isn’t whole.
These thoughts and more are part of my bubbles of emotion and grief, my Grief Bubbles. I have come to welcome them as a catharsis. A way to heal and remember. A way to come to terms with this big changes in my life.
I know the end for my Grandma draws near. There will certainly be more grief bubbles in my near future. I just hope this is the last event for many more years to come that generates such an onslaught of them. And I hope to never step into a big pile of Monday again.