Chapter 9: Day 2: 1:45 PM continued

As we left the restaurant and approached my car he said “Clare, says I need to tell you something.”

Pushing the “open door” icon on my key fob I responded “Really, what’s that.”

He hesitated, and then met my eyes and said “Danny, I have A.L.S.” and began to cry.

At first, I was too stunned to say anything. Des was crying. Des didn’t cry. I tried comforting him. I said “Des, I have known a few people with MS. They have treatments now that can slow down the progression to the point where it is barely perceptible.”

“Danny, it’s not MS. It’s ALS. Lou Gehrig’s disease.” Then I cried too. The type where you try not but can’t, so your breath comes out in gulps the tears come out of your nose. I kept thinking how unfair this was for Des to get this horrendous disease. He was the best amongst us, always looking for the good in others and doing what he could to help them see the best in themselves. His life was that of constant movement. I once called him the most active person in the world. His family did not go on vacations, they went on adventures together. Sailing adventures in Ireland and Greece, kayaking in central America, hiking all over the northeast, rock-climbing, cross-country skiing in the Rockies. Always a little bit danger mixed in with fun.

Des’s tears were not of self-pity. We walked around that parking lot that day because it seemed easier than standing still and talking face to face. He told me he was not worried about himself. He knew that the disease is harder on the caregivers than the one being cared for. He could handle his body shutting down. What he worried about the most was how this would effect his children, his wife, and his friends. What he could not handle is the “pity party” even the well intentioned would foist on him. For that reason, he asked me to keep his disease a secret. Which I did. For years. Because, as it turned out, Des’s journey with ALS lasted far longer than most.

Every few months or so I would visit him. I could claim altruistic reasons for this. I wanted him to know he was not forgotten, I wanted to give him something to look forward to cheering him up. But I would be lying. I went because seeing him made me feel better. He never let the disease get him down. Seeing him made me feel as if he can be this way with ALS hanging over his head, then nothing I faced would that hard, so get over it.

On a visit with him shortly after his arms started not responding to his brain’s commands, he announced we were going on a hike. We drove to a place he loved to walk, the Turkey Mountain Nature Preserve. He told me it was an easy climb, a 2.1-mile jaunt on well-marked trails.  I did not think anything of it. I was not in Marathon shape, but I went to the gym five days a week. I was the master of the treadmill and the elliptical. Needless to say, Des was not completely honest about the degree of difficulty on the hike. The trail was often very steep, with large rocks and washed-out trails to navigate. By the time we reached the top of the mountain, with its incredible views of the Hudson Valley, I was out of breath and my quadriceps felt if they had been attacked by a gang of ball peen hammers. He looked like he just walked downhill for an hour. I said “You sonofabitch. You have ALS and you still trounce my ass.”

He broke into big broad smile, eyes twinkling, delighting in his victory said, “It is okay, you did fine for a Ukrainian weightlifter.”

It was inevitable. As time went on Des’s motor skills decreased. But even this did not seem to injure his good spirits. He was not embarrassed or shy asking me to feed him when we went out to lunch at a sushi restaurant. He even made fun of me as I tried to maneuver a piece of spicy salmon roll into his mouth accusing me having the dexterity of you guessed it, a Ukrainian weightlifter. At one point, Des’s ability to talk was impacted by the disease. He had lost partial control his tongue and it garbled his words for which he would apologize by saying “Please excuse my ALS accent.” When I would visit, he would delight in showing off what new bit of technology that he had received to compensate for his diminishing physical ability like a combination toilet, bidet, and blow-dryer that worked on voice commands or the headset and computer that allowed him to navigate the internet and read and write emails. He would brag that he now had better technology than I had when the opposite had always been true. And when I was marooned in Brazil at the outbreak of Covid, he fretted for me, telling me that when I made it home, we would have a celebration.

Two days after I made it home, I received a Goldbelly package with twelve pints of Graeter’s Ice Cream. The card read. “Welcome home. They tell me this is what is on Ukrainian weightlifter’s training tables.”

Despite his disease and the infirmities, he always showed up for his friends. Offering advice, the occasional joke or reminder not to take yourself so seriously. I tried to reciprocate. For a while I sent him handwritten notes. My thought process was that it was easy to send an email but to send a note took time and effort. I wanted to remind him he was worth the effort. He was never far from my thoughts. Of course, he out did me. When Conor died, he sent me a note that was compassionate, heartfelt, funny, and wise. Knowing how difficult it was to write it using a head wand made it that much more poignant. It read:

Danny, I’m so stomach ached by the news of your loss. I know how you valued your friendship with Conor. And I know it was a bond tempered by the celebrations and the sadnesses that each of you have shared since childhood. And I know being far away makes the hollow weirdness worse.

I’ve been blessed with more notice, to prepare for my own mortality than most people get. And so, I’ve worried that some of my loved ones have postponed or passed on experiences that might cause them to be absent when I die. That’s fucked. There’s no unfinished business. I know how they love me. And my friends and family know I love them.

I hate the long tearful goodbye thing. And I hate when people wreck parties by thinking that their goodbyes are important enough to stop the dancing. I perfected my Irish exit departures long before I knew they were a thing.

I’m going into all this because I am confident that you being nearer at the last moments would have been incidental to Con and his loved ones. It’s the decades that matter. The way you valued your friendship with Con has never been a secret.

I’m sorry for your loss Danny.

 Love, DFO

Ten days later Des died.

Despite all the protocols they had put in place to keep him isolated from the disease, he contracted Covid. Claire, Des’s wife told me that right up until the end, he had been the man we all loved. The man with the indefatigable joy of life regardless of its challenges. When Covid dimmed that zest, he sensed it was his time to go. So he did, with a perfect Irish goodbye, in the middle of the night, with no one watching.

A celebration of Des’s life was held two weeks after his passing. As the pandemic was still raging and Des’s family was rightly concerned about the health of those who loved their father and husband, it was held virtually, nearly breaking Zoom with over 350 participants. I watched alone from my home office, Fenway, sleeping on my toes in the well of my desk. Not physically being with others was the only way the funeral mass failed. Funerals, at least in my mind, are not just times when we pray for the departed and celebrate their lives but serve each other by giving those who hurt and grieve succor and support. While Zoom could bring a community together it cannot provide the touch, the hug or kiss.

Despite the lack of human touch, it was one of the most meaningful, touching and emotionally unburdening ceremonies funerals I have ever been a part of. Part of that ironically was the thing that bothered me the most about the ceremony: its virtualness. The sight of an empty church except for Des’s family and his casket was a stark reminder not only of the tragedy of the pandemic but of our own individual journey in life. We come into this world alone and we leave it that same way. Also, you could scroll and see the faces of the hundreds of people from around the globe who were touched by our friend in one way or another.

The liturgy of the Catholic Funeral Mass does not interest me. Instead of listening to the priest, I busied myself by scrolling through the little windows that show the faces of those people who have Zoomed in to  Des’s service. Seeing those faces, some draped in grief and tears, was a gift. It is not something you are privy to in a normal ceremony and what a lovely reminder of a life well lived. If you are good enough, decent enough and human enough perhaps your life will touch others sufficiently, they will feel the need to show up when you make your exit.

When Clare, Fran’s wife, took the podium to give her eulogy I turned up the volume and listen.  She says “Des won! Anyone who knew Des knew that he was a fierce competitor. He won his battle with ALS with not 1 but 2 hands essentially tied behind his back. Physically and spiritually Des’s life experience prepared him for the epic battle he fought over the last 11 years.”

She continued on in her eulogy to say that to Des the fight was not against the disease but to live a good life. It allowed him to approach every challenge the disease threw at him with the resolution he would not let it defeat him. He treated the disease like he treated everything else in life: As a competition. Whatever the disease robbed him of, he was not going to let it rob it of the things he loved. He danced at his children’s wedding. When he could not use his hands any longer and his speech became hard to understand he learned how to use an “eye-gaze” device. For Des the real competition was to see who could live it with the most joy, the most friends, the most love.

Then Clare paused and said “Let’s see how well Des did. I am going to mention some of the things Des did to win in life, and if you did one of those things with him, please start to clap. If you are already clapping, and I mention another way Des touched your life whistle.” She then began to recite the things that were important to Des such as skiing, hiking, swimming, sharing a meal, a tipple, laughing, running, praying, biking, golfing, chess, tennis, pun, working, singing. By the end of it, everyone on Zoom call was clapping. Most were whistling and there was no doubt in anyone’s mind Des had won.

Des and I are sitting on an ornate, black, wrought iron bench with dark wood slating directly adjacent to the driving range. There is a bougainvillea hedge behind us resplendent in crimson flowers and we have an unobstructed view of the Pacific. We have been sitting here silently since he first approached me on the range. I am comfortable with this. This is how most of our conversations began since his funeral. Everything we needed to say to each other we said before he went on the final journey. His presence is what counts. It is comforting. It reminds me that instead of being angry, frustrated, or lonely to seek the best version of myself. Not to judge but to consider what others are enduring. Not to be sad for what I had lost but to be grateful for what I had and have. When confronted with a Delilah or Lilith or I have a difficult decision to make. I try to imagine “What would Des do.”

Des says, “You remember the story of Haitia the Shepherd.”

Confused I cleverly respond “Huh?”

Smiling, he says “The story by Ambrose Bierce. Where the lonely shepherd questions his solitary existence in life and gets lost in his own self-pity. But when he rebels against his own inner darkness, he is rewarded with a visit from an entity that gives him joy. But when he questions that vision in any way it disappears.

“If I remember correctly, the person Haita encounters is a lovely maiden. You hardly qualify as that.”

Des laughs “Nope. I am quite sure I am not a lovely maiden., But I was not referring to that part of the story and you know it. If you ask me a question, I will not leave. That is not how this works. You know that. “

“Okay. Fine. I give up, why are you here? You usually only show up when I am feeling a little blue or sorry for myself. Are you here for the golf?”

Suddenly Des begins to shimmer, the color fades and he becomes translucent. And then, just as quickly as it began, Des looks corporeal again and says, “Just kidding.”

“Funny guy. But why are you here?”

“You know why I am here.”

“For god’s sake is this going to be one of these interventions where I am supposed to examine my soul to discover why my dead friend has suddenly appeared. Then by examining my soul I will unlock some inner truth that has been eluding me for all these months. I am so tired of it. It seems that is all I have done for the last year and half.”

“Is that so bad?”

“No. Just a lot of work. I feel like I have run ten marathons and now all I want to do is catch my breath and rest.” 

“I thought you liked marathons?”

“And I thought you didn’t think Ukrainian weightlifters should run marathons. Honestly, I don’t mind the work, but it would just be nice if someone just gave me the answer instead of me having to do all the heavy lifting myself.”

“That is not how adulting works. “

“I know…” I say, wistfully, and for a moment I just look out at the Pacific and try to savor the fact that I am here, now. If nothing else, I know I am fortunate to be here.

Des says “Exactly.”

“What?”

“Exactly what you were thinking. You know how fortunate you are. You are here. You are alive in this corner of paradise. Just like the story. You cannot find happiness unless you throw off the darkness.”

“Easier said than done.”

“No doubt. But in all that time I was sick. When my body was slowly shutting down and my world kept getting progressively smaller and my existence continually harder, did you ever see me feel sorry for myself?”

“No but surely there were times where the unfairness of your disease hit you like a kick in the balls.”

“Of course, I did. I am not a saint.” and then, laughing, added “Yeah, I know you all called me that behind my back. I thought it was funny. That is not the point. When you get knocked down you have two choices. You stay down or get up. Since the day I met you, you have always struck me as a guy who got up.”

“Yeah. But at that time, I had someone to give me a hand-up. If it wasn’t for your back then, I am not sure I would have gotten up off the mat.”

Des looked at me, smiled and then took his index finger and touched it to the tip of his nose.

“Oh. The reason we are having this little visit is to give me a hand up.”

“Not exactly.”

“Then what?”

“I didn’t do a thing to help you back then. I gave you a job because I thought you would be good at it. Everything else you did by yourself.”

“You believed in me. That belief reminded me to believe in myself….Oh.”

“Now you have it.”

“Yeah but…”

“Yeah, but what?”

“The last time I was so low I had a lot of hands to help pull me up. I had my parents. I had Conor. I had you. There all gone. I am alone these days. And I feel it.”

“You are not alone. You have Nadine.”

I sigh and looking down at my feet I say “Yes, I do. And we love each other but this pandemic has conspired to keep us apart. Sometimes, she seems no more real than you do.”

“I am offended. I am real.”

“You know what I mean.”

“Listen, you will see Nadine in three days. All the loneliness, all the doubt, will disappear with a single hug. You know that. You may doubt it when you are feeling sorry for yourself, but you know it to be true. Right.”

“I guess. “

“Right?”

“Right.”

“And it is not just her. You have a bunch of people who pull for you every day. “He points to the driving range where Liam has assumed a Tiger Wood like pose having just hit a long drive. “Him. Do you think he could have coped so well with the past months without you in his corner? You know he has your back too. “

Reluctantly, I reply “Okay.”

“He is not the only one. And you know that too. Lotte? The kids and Alistair. You’re not alone. Not at all. You never have been but that doesn’t matter.”

“How is that.”

“Because even if you were marooned on a desert island with no one there to help you, you would never be alone. You would figure out how to create a friendship with a palm tree. For god’s sake look who you are talking to now.”

I laugh and say, “You have a point.”

“One more thing.”

“What is that.”

“You think you are here to say good-bye.”

“Aren’t I.”

“Do you really think you ever say good-bye?’

I say nothing. I do not have to. Des is the manifestation of my stubborn refusal to fully say farewell to the ones I love.

“Danny, it is about forgiveness.”

“What about it.”

“You are here to forgive.”

I raise an eyebrow. “I don’t know Des. Forgiving Del. I am not sure I will be ready for that. She destroyed so much and as far as I can tell completely unrepentant. Come on even St. Des of the Berkshires must see how underserving she is of grace.”

“You really think that she wanted to kill him.”

“You mean them, don’t you? Did she want them to die? I can’t read her mind. What I can say is she knew how to destroy Con. She knew all the things he valued and purposely set out to take each and every one of them away. This divorce could have been settled in hours but that was not good enough for her. She needed to play the victim and get the victory. She won. It destroyed him and he died. No difference than a person accidentally discharging a gun and the bullet fired killing someone. Or a drunk who decides to get behind the wheel and kills someone when they wreck. Their intention was not kill but they killed them none-the-less. Saying I did not mean to does nullify their guilt or grant them immunity for their actions…”

Des said, “What else?”

“You mean other than the bullet that killed Con destroyed more than him and the net result being she had less troubles and a million dollars in the bank?”

“Don’t you think that talking about it will help?”

“Maybe. But I am not ready. She could have saved him. The bullet she fired didn’t have to kill him too. I can’t forgive her not doing more to save him.” 

Des looked me in the eye and said, “Just her?”

Angrily I say “Screw you. You know me too well. Of course, not just her. I fucked up too.”

“Danny, you did your best. What happened was not your fault.”

“I keep telling myself that but the way I was brought up was that if you harm another person, the only way you can be forgiven is by asking them for forgiveness.”

“Then ask them.”

I look at my friend and say, “I wish I could.”

He smiles and replies “I have faith in you. You will figure out a way. You are a Ukrainian weightlifter who runs marathons.”

And he is gone.