Posted on May 5, 2016
Cape and Tights – My Grandmother’s Struggle with ALS
This narrative was written for a college creative non-fiction course. Image above pulled from her blog, which you can visit at capeandtights.blogspot.com.
It was midnight on Easter Sunday of 2010 when my mother and I received the phone call from my aunt. My mother came into my room, clutching the phone in her hand and weeping.
“Mimi passed away,” was all she said. Having already returned home from Easter celebrations in Vermont, we both quickly decided to pack up again and make the nighttime drive back to Vermont to be with our family.
If you visit a website titled “capeandtights.blogspot.com,” you will be met with the wondrous creations and ruminations of Pam Antonivich (née Patricia Ann McLaughlin), better known to me as my grandmother, Mimi. The heading of the website reads “I’m an artist who fights on the side of life! I’m 66, have ALS, and fight to overcome my limitations with the support of a loving husband, a warm and wonderful family, awesome friends, faith and always, humor. Just because I had to put my cape and tights in storage doesn’t mean I can’t fly!” Combing through her blog of ponderings, you can see that she in fact did soar. Whether through opinionated political rants, flowy and complex poetry, or passages honoring family members, my grandmother used this blog to prove that though ALS had slowly claimed her body, she refused to let it claim her mind.
ALS, commonly known as Lou Gehrig’s disease, stands for amyotrophic lateral sclerosis. It is defined as a “progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord.” What this means is that as ALS progresses, according to als.org, muscles begin to atrophy and deteriorate, until movement in various body parts is no longer possible. It tends to start at the extremities of the body, such as the hands and feet, and move along to the core. Some become almost completely paralyzed before passing away. There is currently no cure for ALS. Once diagnosed, the expected years remaining range from two to five or six years. There are exceptions, such as the famous Stephen Hawking who has been suffering from ALS since 1963 – he was diagnosed at age twenty-one and given two years to live.
The early symptoms of ALS can include muscle weakness that continues to get worse, trouble with speech, and trouble with swallowing and breathing. Initial symptoms range for everyone living with ALS. Some notice they are clumsier, some notice weakness when lifting objects, and others start with slurred speech. For my grandmother, she began to notice that climbing stairs was becoming increasingly laborious. A visit to the doctor with this concern in mind resulted in her diagnosis of ALS. The muscle weakness associated with ALS occurs in approximately 60% of patients, making it the most telling symptom of the disease. This occurs because the degenerating motor neurons can no longer send impulses to muscle fibers that allow for movement to happen. As muscles continue to receive fewer and fewer signals, they atrophy, meaning they become increasingly smaller. Despite the body’s increasing lack of motor ability, normal brain function continues. This can create a sense of feeling trapped in one’s body. Once in a while I will ponder this sensation – as a fellow artist (having inherited the genes from Mimi), I can imagine no greater disease to contract than that which robs you of your most important tools. The mind will not decay, leaving the want and desire to create without any of the ability. Leaving this way has become my worst fear.
Although there is no cure, an FDA-approved drug called “riluzole” can help moderately slow the progression of ALS. Several other drugs are currently being tested in clinical trials and have been showing promise. Unfortunately, these drugs weren’t developed until very recently, after Mimi had passed. I’m not sure if she would have been interested however. She was a strong believer in organics and supporting a body’s natural will to live – another ideal she passed down to me. I feel she would have rejected the risky drugs.
ALS also comes in various forms. “Sporadic” is considered the most common form of ALS and comprises 90 to 95% of all cases. This means the disease randomly presents itself, with no genetic factors involved. Familial ALS occurs in 5 to 10% of all cases, and means that ALS has occurred more than once within a family lineage. In the case of familial ALS, there is a 50% chance each offspring could inherit the gene mutation and develop the disease. Had my grandmother’s ALS been familial, this would mean that both my mother and aunt had a 50% chance of developing ALS and a 50% chance for myself or my cousin if either of them developed the disease. Although my grandmother’s form was not familial, I know that the fear of ALS occasionally keeps my mother up at night. My mother is a woman who has been suffering from intention tremors most of her life, a dyskinetic disorder that causes extremities on her right side to often tremble. Since my grandmother’s passing, I know that whenever my mother has a particularly tremor-filled day, she is fearing that ALS is on the horizon for her (deteriorating muscles often shake and tremble in those afflicted with ALS). And I can’t blame her. Staring at my own steady hands, I too fear that one day they will be claimed.
Most people who develop ALS are between the ages of forty and seventy – my grandmother was sixty-two when diagnosed and already a year into the disease. For my grandmother, the outdoorsy mountain-climbing, river-kayaking Vermonter, this was the worst possible scenario. Far worse, she was also an incredibly talented artist. She could paint and draw and bring to life amazing paper-quilling creations. After the stairs became a painstaking challenge, her hands were the next to go. First, they became heavy to lift, causing her wrists to constantly feel pained. We purchased an ergonomic keyboard for her computer in hopes of improving her ability to continue to blog and create art via Photoshop. Not much longer, her fingers began to curl inward, ceasing any hand function beyond operating the joystick of her power chair. With help from new technology called the “Dragon,” a microphone-type device connected to her laptop, my grandmother was able to continue her blog venture through dictated words. I remember the light in her eyes when she demonstrated the device to my cousin Sarah and I. She was delighted to be able to maintain her connection to the online world where she had found most of her support. Sarah and I both shared her joy and helped to her to become better acquainted with her computer
My grandmother was always grateful to us for these gifts, and she was honest with us about when she felt painful cramps in her legs, or when merely lifting her hand was too much effort. However, she was always quiet about the mental toll her illness was exacting on her. Being a young teenager, I wasn’t as perceptive about the pain she was feeling but not showing. Sometimes I wonder if I had been there for her at this age, if maybe I would have been more sympathetic and helpful. Her blog is littered with poetry that describes fluid dances, the ability to move gracefully and without restriction, and the way the touch of nature and the outdoors feels on the body. In the middle of my sixteenth year, when she passed away, these poems to me were simply beautiful, but un-weighted lyrics. When I read them now, I can see her pain clearly through the words: “The dark woods whispered of old souls, Sitting by the fire, I heard them, They whispered and called me to the dance, Flames , hot and wild, Drew me up, I was fluid, free as leaves on wind, Soaring, spinning, Joining in an ancient rite.” Almost every written work screams of her desire to be able to move again – suffering I did not notice at the time.
Following the textbook definition of ALS symptoms, as my grandmother’s muscles slowly deteriorated, her breathing began to worsen as well. In March of 2007, she wrote:
Eyes open to darkness
The room, heavy with silence
In the murky hours before dawn
Tentacles of fear creep up the spine
The room, filled with light
Opens the eyes to promise
Fear retreats into dim corners
The next time my mother, aunt, cousin, and I visited, a new machine had joined my grandmother’s household. A facemask with a rubbery plug inserted into her nostrils kept oxygen pumping and her airways clear. She was cursed with this breathing machine until the day she passed.
Throughout her illness, there were plenty of struggles with the medical world. She always told me her doctors were pleasant enough, but dealing with the insurance companies, AARP, and various government agencies was taxing for my grandparents. They made very little in terms of income, but constantly had to fight for aid to pay for caretakers and the numerous medical devices she began to need. Her true heroes came in the form of two lovely women who both happened to be named Barbara – nicknamed Barb 1 and Barb 2. These two women alternated as her caregivers. On her blog, my grandmother described them both not only as caregivers, but angels and friends. My grandmother built very loving relationships with the two of them as her illness progressed. Our family was beyond appreciative for their help.
That Easter day when Mimi passed from this world was a rough day to endure. Family celebrations had been planned to occur at my aunt’s house. But upon waking that morning, several urgent phone calls from my grandfather relayed to us that Mimi was not doing well at all – the breathing machine was no longer providing any support to her lungs and nurses confirmed that organs were beginning to fail. Within moments, the entire family shifted plans and loaded cars to move the get-together to my grandmother’s house. Easter was her favorite holiday, the reasons for which I was never told (we were not a religious family, far from it). Outside with the younger cousins, we hunted for eggs and pretended this Easter was the same as the many before. Inside my grandparents’ house, Mimi was struggling and slowly fading from us. The younger ones were able to lose themselves in the festivities, but the adults and the rest of us older kids felt the tension. I only went inside once to speak with Mimi. Her eyes were happy to see us, but the pain and struggle she was enduring was highly obvious. It was very painful for me and I had to leave. Late at night after my mother and I had already driven home, Mimi passed away at the age of sixty-seven. Instead of a funeral, our whole family collected the various pieces of artwork she had scattered across our households and set up a mock gallery at my uncle’s funeral home. It was incredibly awe-inspiring to see the pieces she had completed over the years, particularly the Photoshop musings we were able to print that she managed while battling ALS. When the ALS ice bucket challenge became a viral hit last year, I immediately donated to the ALS foundation and made an ice bucket challenge video. Her art and life will continue to inspire me.
A couple months after my grandmother had been cremated, we gathered once more at the family campground and hiked a short distance up her favorite cliff. My grandfather opened the box, gently tossed the ashes into the dewy air, and said, “Okay, Mimi, you finally get to fly”.