Mentally Challenged: April 2021

Ray's Urn and shirts. He loved clocks!

Today - April 11, 2021 - is our 34th wedding anniversary. April 20, 2021 will be the 40th anniversary of our love relationship. We met when I was 14, he would soon turn 18. We became boyfriend / girlfriend when I was 15, he was almost 19. I refuse to say it “would be” our anniversary “if he were alive” because, despite the vow, until death do us part, he is still very much here with me and our son. He is in every memory, every song, every mile, every joy, and every sorrow. He is here when I write to him and when I talk to him. He is very much in every ordinary thing.

I am stabbed in my heart by the most mundane, daily actions and motions I’ve made a million times the past 34 years: opening a kitchen cabinet, spraying hair conditioner into my hand, brushing my teeth, stirring a pot, cutting vegetables, washing dishes, waking up. Each motion brings with it a flash of the sweet ordinariness of before and the lonesome ordinariness of after. He was here in the ordinariness before. And every ordinary thing that happens after, happens without his physical presence.

I expected some things to stab me: the holidays and birthdays, our anniversary, taking my mother-in-law back to Kentucky without him, coming home to this house without him. I did not expect these routine, daily actions to stab me.

April 11, 1987

With these actions, pictures pop into my mind of him sitting in his recliner or his wheelchair before; but now I am alone in the after, wanting him to be in that chair, but knowing he is not. Sometimes I can stop the tears before they wet my cheeks. Other times, I couldn’t stop them if I wanted to. Tears truly are capable of falling down like rain. Sometimes those tears can fall like a waterfall streaming down my face. I don't think I ever had cause to cry like this before.

Pictures of our car ride after diagnosis - him sitting next to me, our son in the back seat, the sunlight on the buildings, street, and cars in front of us, the feeling of pure sorrow we all felt, the shock and disbelief, the hopelessness - flash through my mind in a nanosecond on ordinary days at ordinary times where they make no sense to be. Sometimes the picture is a shopping trip we took to IKEA many years ago that was of no significance. We didn’t buy anything. But we were together. It was a good day. A happy ordinary day. A before-he-died day. Often its memories of our trip to Detroit just before his diagnosis that makes me want to turn back time to the before.

I brush my teeth and see him giggling, his tongue following the toothbrush wherever it moved, his big beautiful smile and his eyes dancing as the new electric toothbrush tickled when I brushed his teeth. I never want to forget the way he looked then, the way the corners of his mouth turned upward and his cheeks puffed up, or the way his laugh sounded. The way we giggled together. Then. Before. Never again. I welcome this bitter-sweet memory every day because I love having such a clear, vivid vision of him.

As I walk through the living room I catch a glimpse of a car pulling up to the gas pump across the street. I’m stabbed in my heart with envy. I imagine their lives are normal and good. There’s sunshine. It's an ordinary day and they are doing ordinary things. They haven’t lost someone. They don’t have this hole in their life where their Love used to be. There’s no before and after.

Enjoying his new deck and ramp

Our son closes the door to the room where his daddy spent most of his free time. The room where he used to visit his dad so often, alive and healthy. Does he close it because Daddy always had it closed? Does it make him feel like Daddy is still in there despite the lonely silence? Does it hurt him to look in there and see it dark, empty, quiet? I’m sure it does. Of course it does. His heart aches.

Josh makes me repeat the phrases his dad often said... Piggy Wiggy, Stuart Little; Josh is the muscle man. I often tell him that he is a good man, just as his dad often told him. Every night he hears me say, “Mommy loves you and Daddy loves you.” Does he believe me when I tell him his dad’s love will never die, that it’s all around us? Does he feel it? I hope so.

Shaving our son’s face brings memories of shaving my husband’s face after ALS stole his arms and hands. I remember what he taught me about shaving. Pictures pop into my mind of his skin, his whiskers, his neck, his lips, and the faces he made to tighten his skin during the shaves. I once again feel the sorrow of having to do this for a once capable man.

And the honor.

I remember the nervousness I felt the first time I helped him shower. Trying to make him feel dignified as he apologized to me for being unable to do it for himself. No need to apologize. He never lost dignity in my eyes. He did not choose this. I was in awe of his emotional strength as he lived through the progressing disabilities. I still am.

Each progression came with a new cycle of grief. His hands, his fingers, his arms getting weaker. The muscles slowly dying. Fighting tooth and nail to continue feeding himself. His neck muscles, his throat muscles, slowly stealing his ability to speak. To swallow. The only surgery he had in his life was getting the feeding tube. His legs, his feet swelling with lack of movement. Unable to climb the stairs from weak leg muscles, he was confined to the first floor. His world getting smaller and smaller. His abdominal muscles dying, he could no longer eliminate his bowels easily. His chest muscles dying, he could no longer breath unassisted. Or cough. The risk of aspiration pneumonia heightening daily. Which ultimately killed him.

We cried. Often. Together. In the hotel room in Rochester, Minnesota, after his diagnosis when he asked me if he was going to die. Was he afraid to ask the doctors because of their somber tone? Was he afraid he would display some emotion in front of these strangers? Through sobs and a torrent of tears, I told him what was to come. Holding each other. Holding our son. Just us three in the hotel room.

One of their last hugs

We cried together at home, telling his mom over the phone that her baby boy had a death sentence. That she, in her 80’s, would outlive her youngest child. Over the course of days, weeks, and months we would cry together, sitting on our couch in our newly remodeled room, looking around at our accomplishments. Remembering all the hard work we had done together in this room before we knew he would soon be unable to do anything. Wondering, how long would he get to enjoy it? One year? Two? Can he enjoy it now at all, knowing he is dying? Telling each other how sorry we were for every harsh word spoken over the years and everything we did that caused pain to the other, tears fell like rain. Trying to remember exactly when the symptoms began. Trying to do the math of how long we had. To live. Together.

Sitting in his recliner with me kneeling in front of him, our tears falling on each others hands, fear gripping him as he wondered what it will be like to die from being unable to breath. Wondering if I will put him in a home when his care becomes too much. Never. You will not suffer. I will make sure of it. Hospice will come here. You will get the really good drugs. You won’t know you can’t breath. I promise. Getting into his new adjustable bed for the first time, telling me this is his death bed. No! Don’t say that! Now understanding why he resisted getting the bed. Each time he said the words he’d said jokingly a million times before diagnosis: You’re gonna miss me when I’m gone. Yes! Yes, I am! More than you will ever know. Waterfall tears.

I don’t know if he ever cried alone. I did. Wondering how I will live without him. Looking ahead at 30 or 40 years without him. Wondering how he continues on knowing what is coming. On my way home in the car after dropping our son off at his day program. The weight of the sorrow overwhelming me. But I’ve learned not to ask God why. I did that in the car on the way home from Minnesota. I concluded it’s a human thing, not a God thing. Murderers don’t suffer ALS. Rapists don’t suffer ALS. And there is nothing my husband could have done to deserve this. This is not a punishment from God. Falling back into the wisdom I’ve adopted over the years that God is love and does not play that way. This has to be environmental. It just has to be.

More quiet tears laying in bed at night during the last two weeks of his life. Asking God to take him soon. Feeling horrible about it, but wanting his suffering to end. I tried desperately to get his doctors to prescribe the drugs because we didn’t have hospice yet. Covid made us afraid to get hospice. Covid stole our ability to feel safe getting help. Getting a response from any of the doctors most familiar with ALS was way more difficult than I thought it would be. It was way more difficult than it should have been. The biggest regret I have of our ALS battle: My promise, that he wouldn’t suffer, unkept.

Ray's sense of humor!

Somehow, through all of the grief and loss, we laughed. Full, until-you-cry, belly laughs. Because he was funny. He had a beautiful, sometimes wicked sense of humor. Like the time we joked about defending ourselves from an intruder, using nothing but our long toenails because I was too busy to trim them. He was always saying funny things as I cared for him. He made me belly laugh many times during that year. Spontaneously, he would come out with a line that just killed me. I hope to remember those funny lines one day.

These stabs to my heart happen less frequently now after 6 months of grieving his death and 18 months of grieving ALS. And when they happen, I recover faster. I know a day will come when I go days, weeks maybe, without one, but that they will never disappear completely. He will never disappear completely. I’m glad about that.

I will always remember our first conversation, sitting on the porch at our friend's mom's house. He was telling me one of his embellished stories of Detroit. He told me about Molotov cocktails during the race riots in Detroit, as if he had seen it in person. He told me about the policeman being shot off his porch, as if he lived there at the time. He was eating pork rinds and drinking Mountain Dew. He offered me some of his "acid rings" and "Mountain Brew". That was the first time we laughed together, and that memory makes me laugh, to this day. When I went home that evening, I told my parents about this boy I had just met. It was actually our second time seeing each other, but our first conversation. He was different than anyone I had ever met before. I could not stop thinking about him.

We would get to know each other over the course of the next year before we became girlfriend / boyfriend. There were times during that year I was entertained by him, and times I was exacerbated by him. Ray was opinionated and not shy about sharing those opinions. He could argue his point to the nth degree even after realizing he had lost the argument. But, in his later years, hours after the argument ended, he would admit defeat and we would laugh about his stubbornness. Ray was the one our young group of friends always asked each other, "Where's Ray? Is he coming over today?" He was the cool guy we all wanted to be around. I will never forget the day he came walking down our friend's basement stairs after getting his hair cut short. My God, he was gorgeous! Even though I had admired him, and loved being his friend, that was the day I became attracted to him. That was the day I first felt the electric shock pierce through my heart and out my finger tips. Literally. I would feel that electricity many, many times over the course of 39 1/2 years. All he had to do was look at me or call me twinkle toes. I miss that electric shock.

1980

The once youthful, healthy Ray walked around town in the summers with his boom box on his shoulder and his cigarettes rolled up in his T-shirt sleeve. I'll never forget his walk; the way he made a little kick motion with his feet as he took each step. He had the looks of a long haired hippy who was up to no good, but he never was up to no good; not any more than any other teenager. A gas station attendant once accused him of stealing cigarettes from an open display near the gas pumps. He hadn't done it and it really pissed off our group of friends who were all there at the time. Another time, he and I were accused of pushing a shopping cart off the sidewalk at K-mart and letting it hit a car parked in the lot. We were stunned that someone would think we had done that. Luckily, a man who saw the entire thing, came to our rescue and told the accuser that the wind had blown it off the sidewalk.

Despite his long career in Supply Chain Management in the manufacturing industry, in his heart and soul, Ray was a policeman. It was his life long passion. In his early 20's he was a volunteer for the Belvidere Police Auxiliary. He loved riding with the cops and eventually, after seeing his competency and skill, they enjoyed having him ride with them. The police sergeant at the time would even assign him his own car to patrol in and often called him on weekends to see if he was available to "work" that weekend. He was very proud of that honor. Ray later took the necessary training to become a paid police officer and worked for the Metro Center Police Department and eventually as a patrol officer at the Kingston Police Department. He was a compassionate police officer, especially when young people were involved. Much to the chagrin of other officers, Ray would often let the young ones go with a warning. And if his partner questioned why he let them go, he reminded that officer that they were young once, too, and had made the same mistakes. He would sometimes tell me how scared he had been just before having to escort some inebriated man out of Davis Park or the Metro Center, and how relieved he was that his training worked in helping to get a large drunk person under control. Years after he stopped doing his part-time police work, he still pointed out reasons to pull over a car as we rode around town. And he could be heard asking himself, "what are they up to?" if he saw a group of teens walking around. But, he would always let go of his judgment when reminded of the accusations he endured in his youth.

Ray in Police Auxiliary uniform

Most people will remember Ray as one of the amateur photographers around Belvidere and Rockford. He loved taking landscape shots at the Belvidere Park and Boone County Conservation Areas. Or shooting people out for walks with their kids and dogs at the parks, as well as parades. In the last couple of years he found a new love of automobile photography; going to car shows and cruise nights, taking hundreds of photos of classic cars and hot rods. He was good at photography. He was better than he ever truly believed he was.

He was not a perfect man or a perfect husband; I was not a perfect woman or wife; but we loved each other and our son. We both did our best for each other and our son. I see Ray in Josh's skinny legs and long slender feet. I see Ray in the size and shape of Josh's ears, and I hear Ray in the sound of Josh's voice. Ray made me a better person by showing me who I was through his eyes, whether it was good or bad. He shared with me how he felt about things I said and did. He always made sure to tell me about things he admired about me. And when I apologized for my irritability from lack of sleep while caring for him at the end, he told me not to worry about my attitude, that he was just glad I got out of bed every time he needed me, no matter how tired I was. That is a gift that sustains me when I feel a pang of guilt.

This man I have loved for 40 years is still everywhere I look in this house, this town, our hearts and minds, and in every ordinary and extraordinary thing this life brings. I refuse to feel guilty about living or feeling joy when it arises. At first I did feel guilty, but then I heard his voice in my head. “Monica, you and Josh deserve happiness. You deserve to live.” And I realized it would be a disservice to his memory not to feel joy or to have experiences...

because he can’t.

Happy 34th Anniversary, Raymond. I love you. And, although I miss your physical presence every day, I feel you, I see you, I hear you. Still.

Always.

No memorial is complete without music, so this us for you, Raymond:

https://youtu.be/AVNlbEdJUYY

Note: If you are viewing this on a computer, the photos below are all over the place. I cannot put them where I want them to go in an orderly way. My apologies!