My first date with my husband Mike had the potential to rate pretty high on the romance scale for two college freshmen. It was a cool night in September when he walked over to my dorm to pick me up. The lobby was busy with girls coming back from the dining hall, classes or the gym, talking and swinging lanyards with ID cards and keys. Noisy study groups competed with the hum from the laundry room and the crack of balls on the pool table.
Mike was standing near the doorway looking relaxed, his curly shoulder length hair wet from a recent shower, wearing patched jeans and a worn button-down denim shirt. He gave me a small wave when he saw me. The sophomore staffing the reception desk gave me a knowing smile before going back to pretending to study. Mike had a backpack slung over one shoulder with a half-full bottle of red wine hidden inside a fleece blanket. The visible blanket was practically a billboard for the attempt at sex, or at least a heavy makeout session. I was suddenly very aware of my outfit of jeans, sneakers and a gray Saint Anselm College hoodie, worried that it looked more like I was ready for a Biology field trip than a nighttime stroll with a coed. Mike suggested a walk to the soccer field to check out the stars. I smiled, and agreed that would be nice.
The fact that Mike was six foot three, almost 300 pounds, and had just suggested a walk in the dark as our first date should have made warning bells ring in my head. But, Mike was more likely to be described as a teddy bear than a linebacker. He smiled and laughed a lot. His full beard of thick, dark curls emphasized his round cheeks and deep brown eyes. He wore wire rimmed glasses and had a faint pink scar that ran across his forehead from a childhood car accident. He was both strong and gentle. More importantly, he was different from other guys I had met. He looked me in the eye when asking a question, loved to debate about politics and religion, and he seemed comfortable in his own skin.
We laid on the blanket together and watched the stars while talking about all the things we hoped to do that year, throughout college, and in life. I remember talking about my volunteer work from high school and how I hoped to “make a difference” through a career in social services. Mike talked about his love of philosophy, Yahweh (his car) and being part of a community.
The night had all the ingredients for passion; red wine in paper cups, a blanket, the cover of night and the excitement of a potential first kiss. Mike sat really close to me, his left leg leaning against my right, saying it was getting “cold” out. Yet, he didn’t make one move. When I got back to my room that night my roommates were dying to get all the juicy details. I was embarrassed to tell them the truth: we didn’t even hold hands on the walk back.
Twelve years after that first date, I am the one walking into a lobby to pick up Mike for a date. Nancy, the receptionist, knows me and smiles as I pick up a pen and sign in as a visitor. She asks if I have any recent pictures of Noah and I show her the mini-poster hot from the lamination machine that I brought in to hang in Mike’s room. It is a picture of Noah holding up a peanut butter and jelly sandwich that he has made himself. At the age of two he is a little Mike with forever eyelashes and golden blonde hair. She is only able to look at it for a moment before her phone rings “Good morning, Neuro Rehab Center. How may I direct your call?” She transfers the call, hands me back the picture and whispers “He’s beautiful.”
As I make my way down the hall, I juggle Mike’s large iced coffee with the picture of Noah and a rolled up fleece blanket. I press the button to disable the alarm and step into Mike’s unit. We see each other almost immediately and I notice he has a fresh haircut. The wiffle of his crew cut makes me want to reach up and rub his head, but he doesn’t seem to like me doing that so I hold back. Mike begins to walk towards me, yelling “Awwww!” and reaching for the coffee. As he puts the straw to his lips he looks at me and keeps walking into the common room where the “Price is Right” is blaring.
I head to Mike’s room, knowing he will follow me eventually, and look for a spot for the new picture. As I am cutting the tape to mount it to the wall, Mike’s nurse Clare comes in and immediately wants to see the new picture of Noah. She exclaims over his round cheeks and impish grin. When Mike walks into the room Clare holds the picture up higher saying “Michael, look at your son! Look! He is eating a peanut butter sandwich!” Mike’s eyes travel over the picture, but his expression doesn’t change.
I show Mike the bag of cookies I brought for him and start to walk towards the hallway. He follows me and when we reach the unit door I fumble with the key to let us out. He walks by the door and back towards me, finally following me with a little coaxing from the cookies. We walk down the hallway to the doorway for the small outdoor courtyard. We enter and begin to walk in a circle. Mike walking fast and looking around. Everywhere except at me. He eats one cookie after another and when they are gone he heads for the exit to go back to his unit. He doesn’t notice that I am on the other side of the door when it slams shut to lock him in. I leave without saying goodbye.
Mike passed away in 2012. But, FTD took Mike from our lives years earlier than that. I think of FTD as a mistress in our marital bed. Sneaky, conniving and unwanted. FTD changed the nature of our relationship and forced me to constantly flex and contort myself and the love I had for Mike to meet his ever-changing needs.
The practical aspects of caregiving are difficult. Bathing an adult can be tricky. Feeding someone with swallowing issues can be delicate. Communicating with someone who can not speak may feel herculean. But, it is the grief and loss, the many tiny deaths that make it all feel insurmountable. It was in those low, dark moments of sadness when I would draw on the love and kindness of others. I knew that Mike might not react to Noah’s picture, but the staff always would. I knew that Mike couldn’t add to my retelling of our love story, but I knew that a nurse would listen. Even though Mike couldn’t bring me a bottle of wine, I had girlfriends who showed up with Pinot Noir in hand.
Today’s date nights include ice cream sundaes, pajamas, and Disney movies. Noah and I snuggle in my king-sized bed and I tell him about Yahweh (Daddy’s car), listen to stories about first grade adventures, and we make plans for Saturday morning waffles. It is a piece of the future I dreamed about. Now I go to the soccer field to cheer on my favorite goalie. I am always sure to cheer extra loud, just in case anyone else is listening.