I didn’t write last week, and here is why.
Even for the most able-bodied, moving pries loose all kinds of carefully constructed emotional architecture. For me, it was centered in utility. My emotional buildings crumbled with how obvious my physical decline had progressed. Another way of saying this is that basically, I was useless. In Indiana, we used to comment on the utility of mammary glands on male pigs, and that was about as useful as I was in the move process. I watched in wonder and awe as 17 different people swooped in to help Ev get the apartment emptied, everything stuffed into cars and vans, and brought over to the other side of town to meet me with the movers bringing in the furniture. People brought food and humor and love and the most incredible energy. I sat off to the side and tried to stay out of the way as this grand experiment in living space–aesthetic accessibility–was filled with furniture and boxes and smiles and laughter. I am still recovering, still seeking to shore up the emotional constructs that allow me the personal integrity so necessary to living with dis ease. It is the carpentry of living, all the while knowing that death stares you in the face.
Let me tell you about life and death, this part of the emotional rockslide the move inspired. The move is life and death, for this move is my last. I can almost guarantee it. This is the place where I will die, if I have my way. It faces south with incredible light, and that is where I want to draw my last breath–in the light of the day with the light of my loves all around me. I know how this sounds. When you move for the last time, you start thinking about the last of your time. But the move also points out to me why I love this life so much. Every single person who came to help is someone that I have a special love for. And I love to be with them. And I love that I love them. The light they brought was positively breathtaking, and it was all I could do not to cry as they ripped open boxes and wiped down dishes, placing them in an order of which Ev and I are still discovering the rationale, the logic, the purpose.
And the condo has turned out beautifully. It has a flow to it that is liberatingly peaceful. Every passage is wide enough for the power wheelchair. Every space has a turnaround. The bathroom is roll in ready. No more running into walls because the turn cannot be physically made. No more bathroom adventures. And Ev picked such beautiful tiles and granites and stone and colors. I come home and, in spite of the clutter of unpacked things, I am at peace. That is the way it should be.
The kitchen is especially beautiful. Designed by and for me, I will never get to fully use it. I don’t even have the strength in my arms to chop veggies anymore. Yet, I look forward to watching my sons and friends and Ev cook in this space, and I will vicariously live through them as they do something that was old normal for me. I used to love to plan, to strategize, to juxtapose a large-scale meal for family or friends. I cannot think of anything that says I love you more than cooking for someone. When I was a young man, I courted Ev with good cooking. As parents, Ev and I strove to hold an evening meal where we all sat and discussed the good and the not so good together, reveling in family even when the boys thought family was a pain to be endured. But it has always been the food that brought us together, and this space has the ability to care for loved ones through the breaking of bread and the preparation of the meal in a way we have never known before. There is love and passion in cooking. This kitchen embodies that life-joy.
Of course there are new challenges. One of the downsides of this place is its location. You have to drive in the burbs, and driving is one of those pleasures that is harder and harder to negotiate. My arms and back muscles are significantly weaker. Transferring requires more planning and precision. Moving to this place means I will need to figure out transportation when I am no longer in the driver’s seat. Moving means new reliance on others.
See a theme here? Driving is not mine for much longer. Cooking is now beyond me. Moving and unpacking is a spectator sport. I am still here, but the move holds up a mirror in which I don’t quite recognize myself. Moving points out loss, reflects challenge, encourages reflection.
It is the last great adventure, realized through dis ease, through ALS–living and dying. I accept this reality. I practice and practice and practice. I practice humanity and serenity and perceptiveness and sensitivity and quiet. Underneath this great delight in living, is a knowledge of dying that is neither sad nor joyful, but deeply felt and critically understood. The only sadness is in feeling it has been too short; the greatest joy is in knowing the same. None of these musings mean that I am planning to die anytime soon. They just mean that I see so clearly how much living is necessary, to truly squeeze every drop of life from these last moments that I have been given. There are things I hope to see in the life I have left, none related to physical geography. They represent my loves and passions, like a topographical map read by touch.
When I leave my career, I hope there is so much purpose and efficacy and efficiency, that it won’t even be noticed that I am gone. I want to leave my sons clearly on a path that is sustainable in love and light, with the persistence and the resiliency to face the challenges that are present and the ones that are yet to come. I hope my friends will smile at some memory of me. And of course, I want Ev to feel so grounded from our time together, that she can only live a joyful life beyond. I want her to be happy.
In reading this over I’m thinking that it sounds pretty morbid. That is one way to see it.
One of the gifts of ALS is the ability to cut through denial. I’m just writing what walls hear. For all this morbid focus, I am remarkably alive with more to live for than ever before. I want to see sons and daughters-in-law grow into life, to hold grandchildren, to share music, celebrate friends, and breathe Ev, and Ev, and Ev.
I am guilty of so many things, but one of them is not fear of death. I am guilty of wanting way more of this life. I am guilty of getting caught up in the trivia that fools you into thinking it is meaningful. Above all, I am guilty of loving life too much, while recognizing death more and more. But I’m not dead yet.
I’m just moving into new and unexplored space.