Amyotrophic lateral sclerosis (ALS). Also known as Lou Gehrig's Disease after the famous ball player. Many of us are familiar with the term sclerosis, but usually when paired with Multiple Sclerosis (MS). ALS as many of the same components as MS except for one: within five to ten years of an ALS patient’s symptoms beginning, the patient will die due to paralysis and organ failure. ALS came into my life when I was still just a child. A preteen, technically, but looking back on that day we found out, still very much just a child.
It was October, 2000. My aunt had been suffering from what they thought was a drop foot that was getting worse. She was suffering numbness, she was tripping over things, she had to have a cane or a walker to be mobile. Her doctor decided something else was wrong and since his tests weren’t showing what, he would send her to Lahey Clinic in Massachusetts, one state north of us.
The day they got the diagnosis was the same day we found out. My aunt called my father, her nephew, that night to tell him. I will never forget the moment. My dad turned a shade of ash that I had never seen and sank into a chair, tears in his jade green eyes. My mom called his name several times as the phone started to beep loudly, letting us know that the call had been severed.
“Chris! Christopher, what did she say? What’s wrong?” my mother asked him. I remember thinking “Brain tumor. It must be a brain tumor.” but in reality, it was something so much worse. My dad finally spoke. “She has Lou Gehrig's disease, Jame. They gave her five years to live at most, based on her symptoms. It affects her nerves. It will paralyze her. She’ll be trapped in her own body.” I don’t know if I was supposed to know this yet, if he meant for me to find out this way, but I remember slowly backing up against the wall in the living room, unable to breathe.
Trapped? Paralyzed? Those were two of my greatest fears as a claustrophobe. I couldn’t imagine it. It was a real life, actually happening nightmare. And it was happening to my own flesh and blood. What were we going to do? What was going to happen next? What do I say to her? “I’m so sorry your body is betraying you.”? How do you look at someone who has just been given a death sentence and act like the world is still turning. HOW is the world still turning? Why is any of this happening?
As someone who currently is in the medical field, it was no surprise to anyone when I was the one who jumped on the research. Anything I could find. Back then, it was the library and encyclopedias. It was learning how to use the internet to find what I wanted to know. It was a time of great growth for me, both emotionally as I dealt with the death of my aunt, and knowledgeably as I learned all the skills that kids these days take for granted. I hunted down every piece of evidence I could find. Every drug that MIGHT work at staving off the deterioration that was happening inside her body.
I remember the day she took my hands in hers, now confined to a wheelchair. She thanked me for my research, thanked me for caring, and told me that she had accepted her fate. I didn’t know what to say. What to do. She had accepted it but I hadn’t. Did I have a right not to accept it when she did? I mean, it was her body. Her life that was ending. It had nothing to do with me so did I have this right to feel the way I did?
My panic attacks began during this time. My one panic trigger - death. One day, I will die. My body will cease to exist. Where will my mind go? My thoughts? My conscious being? What happens when we die? All those questions would plague me in the middle of the night as I sobbed and gasped for air. I kept silent, telling no one about my attacks. They didn’t need something else to worry about, for someone else to be ill. I didn’t know then how common panic attacks are and I was sure it was something that would burden them.
When my aunt lost all feeling in her legs, I learned how to use the lift to get her from her chair to her bed and back and forth. I learned how to change her oxygen tanks. I learned how to make sure her chux pads were in place. I learned how to take care of her because she couldn’t. I would stay with her so my uncle and my cousin could go out and get a bite to eat. So they could get a bit of respite from my aunt’s illness. I would feed her crackers smeared with Alouette and I would tell her about school.
Those, I think, are my fondest memories. She couldn’t even put spread on a cracker because her hands didn’t work properly anymore, but she could still talk and she could still listen. She’d let me ramble about the kids teasing me and she’d listen to me sing the latest Hanson song even though my voice was off key and horrible. I told her more in that time than I told my parents because I knew she’d take it with her. She’d hold onto my secrets like no one else.
In August of 2003, she was given two weeks to live. At that point, her lungs were functioning at 20% capacity. Hospice was called in and we were all on “death watch”. My attacks grew more frequent. Every time I saw her, I wanted to say something profound. I wanted to say something, anything, to let her know how much I hated what was happening to her. How much I wanted to make it better, make HER better. And yet, she persevered. Her only child, her daughter, was getting married in October and by gods, she was going to be there.
Her last outing was in October of 2003. It took my dad, my uncle, my cousin’s betrothed, and my fifteen year old brother to get her from her house to the country club two miles away where my cousin’s bridal shower was being held. She looked gorgeous that day. Her smile was never more radiant. Her speech was slurred and you had to listen closely and she never got mad when she had to repeat more than once. She was slow and methodical, trying to get her words out. I listened to every single one of them, soaking them all up. I knew how tiring this was for her, what it took for her to be here. I was so proud of her and I just KNEW in my gut that she was going to make the wedding in November.
On November 6th, 2003 I was sitting at the computer reading Backstreet Boys fan fiction. (How lame, right? I suppose if you’re going to tell a story, include all the sordid details!) Suddenly, my gut twisted. I couldn’t even begin to explain it. I just had this feeling. My stomach hurt. The little hairs on my body rose up in the air. I got up and came down the stairs just as my mom, who was on the phone with a friend, said “Steph? Hold on a second. The operator’s breaking through. It’s Ed.” I started to cry in that moment. I knew it. She was gone. She died 36 hours before the wedding would have taken place. All those months she had fought and she was 36 hours too short.
The wedding flowers became funeral flowers. The wedding was pushed back until January. Instead of a wedding, we had a funeral. The mayor of our town came to pay his respects. ALS creates a small community and he had heard about her through people he worked with who knew her. The firemen, who had all come at one time or another to help her up when she had fallen due to her illness, came in their uniforms to pay their respects. She laid in the casket in the dress she was supposed to wear to the wedding. That hurt the most. Seeing her lying there with her hands folded around a rosary, eyes closed like she was sleeping behind her glasses. Like she had just fallen asleep for a cat-nap but dressed in the purple skirt suit she was supposed to wear to watch her daughter get married.
My father and my brother were both pallbearers. It was sobering, incredibly sobering, to watch my fifteen year old brother hold up part of a casket. You see, no one this close had died before. Not like this. They had all been old people. People who died of natural causes. People who had lived their lives. We had a service at the chapel at the cemetery. The priest spoke yet again about what a wonderful woman she had been. A daughter. A sister. A wife. A mother. An aunt. A great-aunt. A mother-in-law.
I saw a butterfly that day. It struck me as being so odd. A butterfly on a cold November day? They’re not out and about in that weather. A few months later, I was reminded of the butterfly and looked up it’s symbolism. I found a website that spoke of an old Irish folklore. A folklore that declared that those that were ill and infirm on this earth were transformed into beautiful butterflies upon their death so they could spend one last day flying freely upon this earth. To this day, I still cannot find that folklore no matter what I search. Maybe it was her way of telling me that she was going to be okay in the end after all.
One year later, one month shy of the anniversary of her death, my cousin gave birth to a healthy baby boy. He was born twenty days before my aunt’s anniversary. The day we mourned her death, the day we celebrated her life, we had Levi with us. A brand new reminder that life does go on. That while we mourn the dead, we have to celebrate the living. The two go hand in hand.
It’s been ten years since she died and nary a day goes by that she doesn’t come into my head. I have a butterfly tattoo on the inside of my right wrist. It’s purple, her favorite color. Whether that folklore was real or not, it comforted me in a time of deep grief and so I wear it for her. As a reminder that the dead are still alive among the living. That we carry them when they can’t carry themselves. That love crosses boundaries we don’t necessarily understand. That in the end, there is peace.