I remember distinctly the odd feeling I had during the NYC Marathon day in 2017. I’d run it in 2016, without really training…finishing on residual fitness and grit.
A little bit of that odd feeling was guilt that I should be doing something. There is no cure, so it’s not like his disease was gone. More of that feeling was that I still wasn’t over the sense of needing to suffer. Deep down I realized that I’d be running NYC and raising money again. I didn’t verbalize this until Memorial Day 2018, when we spent time with Pop. That was his last solo trip.
The decline was real. He now was Uber dependent on someone being there to care for him. Hell, he couldn’t even pull up his own damn pants. He’d had his feeding tube for about a year and his schedule always revolved around naps and feeding. The long hikes we’d take to mountain tops, overlooks and waterfalls, were replaced by spending more time at the close places that we loved and finding new places we’d long skipped because they were previously viewed as far too short. Not that he wasn’t always over estimating his abilities.
Oh how, in the end, he could be stubborn… there were plenty of times where I talked at him, because he was hearing me, but not listening. He was gonna do whatever he damn well wanted whenever he damn well pleased. When I finally came to peace with him being given a life’s sentence, had no hope for recovery, and that this was essentially his only means to exhibit his control… it was easier for me to respect his wishes and not be a nag.
So that Memorial Day weekend, in 2018, I told him I was gonna run NYC twice more. Once when he couldn’t walk and again in his memory. He was grateful that I’d run again, knowing how much I hate it… what else could I do? The feeling of not doing enough was still fresh in my memory.
His battle with ALS was a series of declines and plateaus, throughout the course of 2018 his declines got bigger and plateaus shorter. Changes were noticeable from month to month … and fuck if it wasn’t weighing on me. After being with him in July and talking to my sisters, I decided to go down again August to visit. It was Shawn’s birthday his favorite Ravens were in town to play the Dolphins so we all went down to the game. It was there, tailgating in the rain, that it all boiled over for me. There was plenty of good people and drinks, I was comfortable in my surroundings and I drank. A lot. Until I was blind. When it came time to go in for the game, I sort of stumbled my way there and walked inside. Once inside, I got a call from Mindy asking where I was, after my response, she questioned me… how? I have your ticket! I don’t remember 3/4 of the game. Sitting in the best seats I’d ever had been in and I was passed out. It wasn’t until the game was over that I was coherent.
That next day in my father’s pool, I decided that I’d gone too far. My sisters and brother in law weren’t judging me. It was at that point, that I decided I needed to gain a little more control. I needed not to wallow in the depression and isolation I’d allowed myself to be in, I needed to start taking steps. I was at the heaviest I been in years. Drinking more than I had in a long while. So I took a 3 month break from booze, paid attention to what I ate and started dropping weight.
I started feeling better. Was more present. Pop was still dying but I dealing. I went to bike events, saw friends, had surprise visit from Maggs & Gary…it’s amazing how much it helped. I laughed and cried with friends, as we talked about Pop. Unlike Pop’s decline and plateaus, there are good days and bad…fun and laughter and also sobbing in the dark.
My friend DE ran NYC in 2018, in Pop’s honor, raising bunches of money for ALS. He’d contributed to my 2016 run and helped decipher my rambling for that post. In the lead up to the marathon, I was taken aback by his words, his commitment and how much money he’d raised. So when he ran, I couldn’t have been happier to get costumed up, drag his wife around the city and cowbell.
In early December, Pop fell and ended up in hospice; we were all seriously concerned. I pleaded with him to make it to Christmas. So many messages sent to my sisters to have them remind him we were coming down. While initially he was supposed to fly up, he didn’t want to tell us that he couldn’t make the trip…it was apparent we’d need to drive down and we made the decision for him. He made it to Christmas, because, of course, he was going out on his own terms.
On NYE, back home, I’d read an article about what someone learned about himself over the course of running 365 days straight. There were enough good lessons in that article that I decided to do it myself.
I wasn’t home a week before Pop was back in Hospice. It wasn’t good and everyone knew it. I flew down, on Saturday the 5th, and went directly to the Hospital. He was all doped up on morphine that day, just so he could breathe. While coherent he shrewdly negotiated his exit for Sunday evening, something else we had in common. I was sitting bedside when he came to…iPad in hand I started scrolling through his facebook pictures with him. Fully engaged we talked/typed about his pictures, trips, favorite places (white mountains).
He went home and all of Monday he was engaged as he could be, I walked with him to the bathroom, pulling his cart behind him…we spoke openly about how much longer he’d live. I asked him he was ready… except for taxes he was ready. He’d made his peace with God and everyone. He was ready once his taxes were done. Then the SOB had the gall to give me chores to do. Had me trimming trees and doing yard work (something else I hate). We laughed together at me cursing him for giving me yard work until the day he dies.
Tuesday, he woke up later than normal and he wasn’t as engaged for as long. He was exhausted. His body breaking down minute by minute. We just enjoyed each other’s company, looking at pictures and chatting.
Wednesday, he woke around noon, as we changed his bedding trying to make sure he was comfortable. I assisted him moving to his chair and back again. I GOT A HUG! He hadn’t been able to stand without assistance for a good while and we hadn’t hugged each other in SO long.
Thursday, I gave Mindy the gift of a hug from her Daddy. Mindy had just gotten out of school and was visiting with Pop and while I was out front doing FCKN yard work, a new mattress arrived. As they were changing out the mattress, and I did my little dance with Pop I moved out of the way helped support him as they hugged. I was soo happy to be able to do that for them, I may never give a better gift. I cried doing it, still tear thinking about it. He took a long nap that afternoon and we were anxious. We were having dinner and causing a ruckus when he finally woke. We were all there; Rene, Wendy, Mindy, Shawn, Devanny & Rhett. He looked at each of us in the eye and gave us two thumbs up.
That night when Pop went to sleep he never woke again.
I’ll be forever grateful that I was able to leave at a moment’s notice and be with Pop during his last week. Lynn really is a super hero, I felt horrible that she couldn’t be there as well … they had a special relationship.
When Pop was diagnosed in 2016 I decided that doing something that I hated, something that allowed me suffer a would remind me of Pop. I’m RUNNING every day this year. I’ve run 6 in degrees and in 80 degrees. With friends and by myself. In a blizzard and in the rain. Under blue skies and under the stars. Every time I go out there I know why I’m there. It’s for Pop.
This time I’m doing the marathon the right way. I’m committed to raising money to help end ALS and I’m committed to training consistently this year. I’d love your support.