Face of the Foundation: Susan
By: Shawn Blond, EFGC Associate Board Member
My Mom loved sending me lengthy good morning texts on my birthday. Her excitement to go out for my birthday lunch was palpable, indicated by the surplus of random emojis she used. On my birthday in the summer of 2013, I had noticed in the morning at work that she had not yet texted me. A red flag went off in my head and I rushed over to her place to check on her. As I opened the door of her townhouse, I had no idea how the landscape of both our lives would be changed forever. As I called her name walking through her place, I discovered her face down on the floor of her bedroom. I scrambled to the floor and found her weakly twitching with no response or reaction as I shouted her name. I called 911 and held her hand pleading for her to stay with me while telling her how much I loved her. As the paramedics took her to Alexian Brothers hospital, all I could do was follow the ambulance in utter shock, praying for a miracle.
After being stabilized in the ICU, the diagnosis was that she had suffered focal motor seizures involving twitching of her right side and loss of awareness. She had no history of epilepsy before this. By calling her work and finding out how many days she had missed, I calculated that she had been on the floor seizing for three days straight. For three days she had no food, no water, and her brain was slowly deprived of oxygen. The MRI showed significant brain damage. The neurologists painted a grim picture for my mom; she most likely would not be able to walk, talk, or do much of anything on her own again. I had to prepare myself for that fact I would never have a conversation with my Mom ever again and began the mourning process of who she used to be. Much to everyone’s surprise, within a week she began to be able to track movement with her eyes and speak random words. Within a couple of weeks she was regaining her ability to move her arms and legs again and converse in a semi-cognitive manner. I came to visit and help her every day at rehab and within 6 months of intense physical, occupational, and speech therapy, she completely defied all expectations and prognoses and was able to return home. She was on an anti-seizure medication regiment that worked well and she was also back at her job. She was the definition of a miracle. I began to lovingly call her “Miracle Momma”.
Even though she was no longer back to her cognitive baseline and sometimes struggled with aphasia (the medical term for speech issues) and complex tasks, she still had her strong will and personality intact. This semi-normalcy of life had lasted for a year until she suffered another breakthrough seizure in 2015. Unlike the first seizure that was able to be controlled fairly quickly, this one raged perpetually with no end in sight. After a week of being unable to control her seizures, the Alexian Brothers team decided to move her to Northwestern Memorial. Even the top neurologists and epileptologists struggled to control them, despite being in what was considered one of the best hospitals in the nation. The neuro team came within hours from having to perform a last resort procedure called a ‘burst suppression’ where they would chemically induce a coma to “reboot” her brain. Seeing my Mom intubated and close to death yet again was more than I could bear. I pleaded with the team to try one last tweak to her medications to see if a new combination could control her seizure. Fortunately, they were able to concoct the right drug mixture and called off the burst suppression procedure. Esteemed epileptologist Dr. VanHaerents was able to find the right combination of anti-seizure meds for my Mom and saved her life. I breathed a sigh of relief and held my Mom’s hand as I could finally feel some calmness not only in her muscles but in her spirit.
Once again, a grim outlook was given by the neuro team. All I kept hearing was “She has had too many insults to the brain, the brain can only take so much”. She decided not to listen to the doctors and continued to find a way forward. With my unyielding support and her boundless determination, she spent years recovering. She was in rehab for nine months after that breakthrough seizure. She had to learn how to walk, talk, and write again. I had to sell her house and move her into an assisted living facility as the trajectory of her recovery was much slower than the first seizure. However, my Mom would not resign to living in an assisted living facility at the age of 65. She researched ways to overcome epilepsy outside of her medication and began using CBD oil. She constantly played puzzle games to help rewire her brain to overcome the additional damage it suffered. Most of all, she always injected a sense of humor into all the ups and downs in order keep her positivity up. While she was depressed at times about being unable to drive a car anymore, she joked that she would just buy a horse and carriage instead. After a year in assisted living, she was able to start remembering to take her own meds and was able to “upgrade” and move into a retirement home.
After living through many years witnessing the severe impact epilepsy had on my Mom, I decided to begin fundraising money for the Epilepsy Foundation of Greater Chicago to give back to those in need. What initially started as an idea to produce events that consisted of DJs and art exhibits, ended up having a charity awareness component added on where people could also learn about epilepsy through brochures and posters at the venue. I often referred to these events as “dancing for a good cause”. What started with 130 people attending the first event blossomed into 300+ each over the course of eight events and raised more than $7,000 for the Epilepsy Foundation. People really enjoyed being able to view local artists, dance all night, and learn more about epilepsy and donate to the cause. During these events I had developed a good relationship with the foundation’s program director and inquired with her about personally volunteering at charity events. It was then I began to see how little the general public knew about epilepsy while there was such a great need for more information to those who were suffering from the disease. I knew I wanted to do more at some juncture.
During the time I began volunteering, my mom was at her retirement home and would still have a couple of moderate seizures a year. When she had a seizure she would continue to seize endlessly unless given an IV of a particular anti-seizure drug. It was not the type of seizure most people visualize where a person recovers after a few minutes. Fortunately, they would become less and less severe over time, going from a minimum two-week hospitalization after having a seizure to less than a few days stay. When she would wake up in the hospital, there would be initial disappointment and a flood of tears, but she would almost immediately shake that off and work on how quickly she could get discharged through hard work with the rehab team.
In time she started to flourish in the retirement home community despite her peers being an average 20 years older than her. The constant social activity continued to heal her brain and sent a jolt of confidence that would hardwire into her mind. She even surprised me with her renewed abilities by beating me in games like Wii Bowling! Outside events that channeled her passion for music helped heal her too, as I had taken her to see her favorite band, Def Leppard, more than a handful of times over the years while she continued to fight epilepsy. Soon, a beautiful ping-pong effect developed where her hearing about the work I was doing with the Epilepsy Foundation motivated her to continue to make even more strides to better herself which in turn motivated me to push myself even further with involvement in the foundation.
After it had been a full year of being seizure free at her retirement home, she was able to move back into her own apartment and begin working again. It had been a 3-year journey since that fateful second seizure and I was so incredibly proud of her. There was a joyous combination of feeling like I was a proud parent and guide to her while also being a proud son that never let her feel like she couldn’t achieve something. While she still suffered from aphasia and was slightly embarrassed by it, over time it diminished to the point of near invisibility. While I would always still need to be my Mom’s iPhone IT consultant every time I visited her, she had essentially fought and clawed her way back to her old self. By finding the right specialists, having a positive attitude, craving more knowledge about her condition, embracing my unyielding support, and taking one day at a time, my Mom proved to me that anyone could do anything they want if they put their mind to it. She was incredibly happy and beamed with pride when she found out I had joined the associate board of the Epilepsy Foundation of Greater Chicago. I recall her screaming with joy when I told her I had helped raise tens of thousands of dollars with my involvement in the Epilepsy Foundation’s Casino Night. She was so proud of me, as I was of her.
On February 6th, 2023, I lost my Mom to a massive stroke. She left this world peacefully in my arms. Prior to the stroke, she had been seizure-free for 3 years. She won her battle with epilepsy and won the war of true bravery. I look back and often curse the first seizure that altered the course of our lives. However, it was also a blessing in disguise as it transformed our relationship into something incredibly beautiful – the perfect mixture of a tightly bonded parent/child relationship, an unwavering friendship, and a love that was layers deep from all the hardships we overcame together. I miss her so so much and will draw from the strength she showed and carry that forward in my life. If just one person reading this is able to find strength in their battle with epilepsy through my Mom’s courageous story, then her legacy can live on through others.