It’s been seven years, and a day.
Seven years and a day since my life came to a crossroads. I don’t think I fully appreciated that moment or the profound impact it would have on my life. I doubt I realized the significance of what my decision would mean for me, let alone for my children. Or how it would affect us all for what is sure to be the rest of my life, and a majority of my children’s childhood and youth, if not for the rest of theirs. I doubt any of us realize while we are in the middle of life altering moments. But I was faced with an important decision to make.
To stay…Or to walk away.
Seven years and a month ago.
WebMD became my best resource, or worst obsession, depending on how one views these types of frantic midnight internet searches. Inserting key phrases or words such as: Weakness, muscle cramping, fatigue. Inability to grasp a pencil. Unable to type on a keyboard, or to zip a coat. Weakness in hands.
Seven years and roughly two weeks ago, I knew that Matthew was sick. I didn’t want to believe it could be real. But all indications pointed to an unexpected diagnosis. He was only 41 years old.
Seven years and a week ago, the EMG results had returned, and the bloodwork had been ran..and re-ran again.
Seven years and a day ago, an MRI was ordered.
Seven years and a day ago, the doctor’s office called. They wanted to see Matthew. The appointment was set for that afternoon.
That wasn’t good.
We tiptoed around the issue all day. “Wasn’t he so lucky that he had a family doctor that could rush these types of things along?” I would say, not making eye contact, but trying unsuccessfully to skirt around what we both were thinking, but neither brave enough to say it.
“I think it’s a pinched nerve. Why else would he ask for an MRI?” I would just nod along. He knew. I knew. But neither of us seemed willing to acknowledge or give any indication to the other what it was we were both privy to. The nurse calls us back. I am holding his hand, both of us grasping tightly to one another as we walked down the corridor. I noticed that the office staff never made eye contact. They were busy looking at invisible data on a clip board.
The doctor walks in. The exam table is empty. Instead, we were side by side, sitting in those horrible plastic chairs that should have been left back in elementary school. He doesn’t leave much for small talk, just sets the folder down, takes a seat on the small circular stool and looks Matthew in the eyes. We all knew, but it doesn’t mean that hearing it for the first time is any less shocking. He seems to brace his hands on his knees, as he takes a big inhale.
“I am sorry, but I believe you have ALS.”
Matter of fact.
Just like that, it is now the truth. There is no way to tuck this back where it came from, or brush it off to the side. There is no avoiding the elephant in the room now.
Matthew is dying.
The doctor answers some perfunctory questions, leaving with a handshake and a pat on the shoulder, wishing him luck in his future endeavors. With a recommendation to get a second opinion, he gently closed the door behind him.
I never see that doctor again.
Seven years ago today…we laid next to each other. We didn’t touch, we hardly spoke…. Processing, replaying the day before. The words that were spoken. The heaviness that death was closer than we realized. Neither of us really talking about those three letters. There was just too much.
How is that even possible? Weren’t we just talking about our plans? Weren’t we just laughing? How did this happen?
The following day, we told his father.
The day after, his brothers.
There were tears. So many tears. There was disbelief. There was anger. There was grief. We were in shock. Everything felt blurry…or off kilter. Nothing seemed quite right. I didn’t know what to do, or what to say. I just laid beside him.
The world kept turning.
The days went by. We kept trying to understand what this meant. What does it mean to be dying? You might think that is a silly question, but have you ever actually thought about what it means to learn how to die?
How does one navigate a terminal illness?
I had no experience in caring for someone with a terminal disease, and certainly no one to turn towards to guide me. I have been and still am making this all up as I go along. I have no more of an idea of how to live this kind of a life than anyone else. The number of emotions that flooded through me, wave after intense wave, over and over again, beating me down. I felt as if I could never quite catch my breath, and that I was suddenly battling some unknown demon. One that I had no chance of beating.
I was battling against time.
I turned my life upside down.
No…ALS turned my life upside down.
I was lost. I was grieving. I was angry.
I didn’t plan for this.
I realize that you might be thinking that Matthew didn’t plan for this either, and you would be right, he didn’t. But I barely knew Matthew. If this situation had been different, and we had been married for years, maybe my reaction would have been different. But I didn’t know the etiquette or proper way to respond or how to navigate or be of any type of support for a boyfriend who has been diagnosed with one of the worst diseases known to humans. A boyfriend that I had just barely begun to date. I was still just trying to figure out my own life. After going through a separation from my first marriage and having three small kids to raise, to this. Why? Why this on top of everything else?
Two years…maybe three. That is what they said. He would deteriorate. He would die and there was nothing we could do to slow it down. There was nothing to stop this trajectory we found ourselves on. That is what we were told, so that is what we prepared for. We buckled up and rode that roller coaster.
His progression was so fast. The year went by even faster.
Live as much as we can, cram everything in, in two years, maybe three. Travel. Travel often and travel far!
Buy a house. Remodel it for full paralysis. We don’t know what to tell the contractors we want, but we learn really fast that handicapped accessible doesn’t mean a damn thing in the world of ALS.
There didn’t seem to be anyone to show us the wrong way, or the right way. I felt completely alone. I was navigating a completely uncharted territory. Death, I was familiar with. But this..this isn’t death. This is preparation for death, yet a constant anxiety of waiting for a disease that chooses how much it takes and when.
Meeting families who are diagnosed and their loved one passes in less than a year. Others who live three years, maybe five. Most never make it to year five. People warn us…they tell us to prepare. I am constantly filled with worry, and anxiety and dread. I imagine every possible scenario, and I am petrified that something will happen that I am not prepared for. But I am not sure what I am supposed to be preparing for, so I prepare for everything. I research papers on ALS and diets, ALS and metals, ALS and lyme disease, ALS and toxic levels, and ALS, and more ALS.
I join online support groups, specifically targeted at ALS caregivers and spouses, and bear witness to loss after loss. Story after story, it becomes too painful to read. I eventually stop reading them entirely. The continued frustrations of the emotional, psychological and physical toll the disease begins to take on everyone it touches is a continued theme, and I begin to see it around me as well.
We attempt normalcy. Or at least, I think we did. We continued living our life. We continued attending music concerts, and plays. We watched the children grow and we went to volleyball and soccer and cross country meets. There were choir concerts and graduations, birthdays and holidays. We hosted massive gatherings at our home, in an attempt to keep people around us.
I try to keep some semblance of normalcy when there was nothing but change.
It started with helping him dress. Socks were the most difficult. Soon I was cutting his food into smaller bites. I was carrying all the bags. I was re-arranging my schedule for school, and three small children and all the other activities, demands and chores around doctor’s visits, and therapy and still…more doctors.
It became harder for him to navigate stairs. To stand up out of a chair. He still looked healthy. And as the disease continued to silently ravage his body, his spirit never breaks. Meanwhile, I feel as if I am breaking into a million tiny pieces.
Matthew seems to accept whatever fate has dished out. I, on the other hand, am fighting against this with everything I have.
to be continued…