Another Moving Experience

I didn’t write last week, and here is why.

We moved.

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.


4 thoughts on “Another Moving Experience

  1. Dear Bruce and Evelyn,
    I care for you both so much and thank you for your many “gifts” these past months. As I work my way through my present on-going radiation and chemo, I find myself thinking at times as you have expressed in this blog. However, I have been blessed with a long life and sometimes I feel guilty to pray for more. Then I remember something that has stuck with me – I believe it was Madeline from Cario who wrote in response to one of your blogs – that what truly matters and is significant is what has taken place between the numbers on either side of the hyphen between those years when we came into this world and when we leave this world – and God chooses to take us “home”. You have given so much to so many in so many significant ways in both healthy years and now in this period of dis ease. Your life has been very full, brimming over in so many ways. It is for that reason we, who think more of what is ahead, want so much to live on and longer. Not all feel this way, Bruce, but I believe we are blessed to continue to want to live. Our lives have been rich and full – full of meaning and purpose and incredible adventure with incredible partners, Evelyn and John. No wonder we want and pray for more!!

    Take care dear Evelyn and Bruce. Today it is so warm, sunny and beautiful – a wonderful day to live life to the fullest and to give thanks! My/our love to you both,

    Ruth – and John too

  2. Ev and Bruce,
    We have missed a lifetime of your friendship. But we do have beautiful memories. Things that resonate with your thoughts above. In Norway – a salmon purchased at a local outdoor market, lovingly cooked for us. And driving – driving, driving around the fjiords – one of the most beautiful trips of my life. And David calling our daughter Eeeesha! Thank you, thank you both. Love, Barbara Sanderman

  3. Some words just must be spoken heart to heart. I look forward to seeing you and Ev later this week.

  4. Hi Bruce– sorry I wasn’t there to help with the move but it sounds like you had a lot of loving help… so wonderful.
    DRL and I called you today 9after a very interesting dissertation committee meeting) to see if you wanted to go to our default location –let’s try to go another day. Or better yet, we can bring the default location to you!!

    Take good care and see you next week. Cindy

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