When I heard that Michigan’s Governor was about to issue a mandatory shelter-in-place for the state, my first reaction was to panic. I had already planned to go to the grocery store that morning but now it felt urgent. I literally dropped everything, threw clothes on and dressed my five year old son. As we headed out I kept telling myself to breathe but I could feel the anxiety rising. I tried to fight it but the panic was overwhelming the rational side of me. Fortunately the store wasn’t packed and everyone was being considerate, but shopping with me five-year-old son is challenging at the best of times and now it felt as if everyone was looking at him as a walking germ factory. We made it out and I was exiting the parking lot and had paused to rearrange the flowers in the front seat when the guy behind me beeped his horn because I didn’t pull out quick enough. My anger rose and, I’m ashamed to say, I said a few choice words as I pulled out. I had let the panic get the best of me.
I’m sure in these times we have all either had or are going to have moments like this and it’s normal. In order to help center us all, I wanted to share the letter I wrote to my husband Jim that was read at his funeral. Most of you know he passed away on January from ALS. It is a reminder to all of us about what is most important during any time, but especially these times.
I didn’t want you to go. I knew it was inevitable. I watched as ALS robbed you of your life. At first, we didn’t notice it so much but then it slowly became a part of our existence. It seemed like there were solutions along the way. You had a little trouble walking, so we got you a cane. We defied ALS by hiking Isle Royale with the aide of your walking sticks. I managed to break my foot, but you were great. Next came the walker, but you kept going with that. It got you to Florida and you were able to see the ocean and watch Augie play in the pool. And then came the wheelchair. You became an expert at getting around and that took us to Stratford where we saw The Tempest and watched Prospero create a storm that wasn’t real.
When we first met, and I asked you to join the choir with me I was so shocked when you said yes. As we got to know each other, and I discovered how much we had in common and I couldn’t believe my luck. You were this handsome man who loved music, reading, movies, and you could cook! Some of my favorite memories are of the meals you would make for me in your little apartment. The table would be set complete with cloth napkins and you would present the food like a masterpiece. I understood that it was your gift to me.
I loved our life together. One of our favorite things to do was to go to used bookstores. We had a favorite one in Royal Oak. We would walk into the store and see the books piled high on shelves and smell the mustiness of old paper and know we were in our element. You would head to the SciFi section and I would head to mysteries and we would meet at the checkout, our arms full of our treasures to add to the bookshelves at our home. We would lie in bed at night reading our books until we fell asleep.
Your most enduring quality that I treasured (and sometimes despised) was your patience. As storms blew into our lives you handled them with the quiet resolve you possessed. I would be frantic, running around trying to fix it and you always knew we would ride it out and be okay. I also valued your kindness and desire for harmony. You were quick to forgive and forget and always looked for the best in people. We would have our arguments, but at the end of the day we always believed we were in it together and I knew you were on my side.
These qualities are what saw you through this horrible disease. No matter what ALS did to you, you continued to remain patient, kind and even optimistic. You chose to live your best life in the moment, whatever that looked like. Even if it was sitting in a bed watching TV. That even became your way to interact with Augie and you would watch endless hours of kid television shows to make him happy. I would hear the two of you in the other room cracking up over the antics of Mickey Mouse or SpongeBob. You knew all the characters and would search to find new shows you thought he would like (and that you would too).
As much as I hate ALS it did give us two gifts. The first was time. While it robbed us of a future, it taught us to value the present. Our priorities changed and spending time together because the most important thing. A hug, sharing a cup of coffee, laughing at a movie together, it all meant so much more. The second gift ALS gave was love. I never understand how much you loved me until this disease came into our lives. You would look at me with so much love and you never missed an opportunity to tell me how much you appreciated me. Thank you for that gift. I will never let go of it.
And, just so you know, if you ever wondered if I could go back and do it all over, would I have chosen our life together, knowing what would happen, knowing how it would end, would I say still say yes… Please know I would choose you every time. I will miss you every day, my sweetheart. I love you.