CBD
Per usual, it seems that a therapeutic outlet for me is to cry-write about the very thing that is causing me to cry.
FYI: I’m positive there are spelling or grammar mistakes in here that I may or may not have the emotional bandwidth to fix later. You’ve been warned.
2022
My mom was diagnosed with a rare terminal neurological disease, called Corticobasal Degeneration. Out of respect for my mom and dad, I won’t share too many details about her current state but rather how her having this disease has affected me.
With a prognosis of about 6-8 years from the onset of symptoms, there is little information about this disease. It’s estimated that 0.00005% of people in the United States are diagnosed each year.
Yeah, it’s complete horsesh*t.
Corticobasal Degeneration (CBD)
A neurological disease that affects the area of the brain that impacts limb movement, speech, sensory perception and other movement functions. CBD is commonly referred to as an “atypical parkinsonism” because of its overlap of certain symptoms with Parkinson’s disease.
It has no known cause or cure.
Movement symptoms start on one side of the body and spread to the other side over time, such as stiffness, shakiness or jerky movements,and difficulty with walking and balance. Speech is also gradually affected (dysarthria, dysphasia and aphasia), memory problems can occur as well as sudden personality changes.
With my mom, physical signs of progression began with her right hand. She began to experience stiffness that spread up her entire arm, and tremors that cause unbearable pain. She now experiences tremors 24/7 in her right hand, so bad and uncontrollable that her entire right arm is entirely useless and has been for some time. Some days she can’t even talk because the pain is so bad. The only tissue paper thin silver lining in it starting on the right side of her body is that her dominant side is the left.
Watching your parent crumble and disappear at a snail’s pace right in front of you is an unfathomable experience.
I’m not even sure what adjective would be appropriate to describe it because nothing I can think of feels cumbersome enough to truly encompass this level of devastation.
My Dad is her primary caregiver and it has understandably taken A TOLL on him. I could write an entirely separate post about how much empathy and compassion I have for what he has to do each day, and how he has to watch his wife go through it hour by hour, minute by minute.
My mom misses most family events -
sports games, birthdays, concerts and other performances, art shows, etc. - because she never knows how she will feel when she wakes up in the morning. More often than not, she can barely function because of how much pain she is in. If she is able to attend any family functions it’s a blessing (and arguably a miracle.)
She was able to make Ollie’s Kindergarten graduation in 2024. Although it was a little bit of a physical challenge, she got there. She and I grabbed seats in the front row of the bleachers, inside the gym.
During the ceremony the kids sang songs, one being Count on Me by Bruno Mars. Take my word for it: hearing little kids sing this song hits in an entirely different way, never mind when do it whilst graduating. I was a mess, but I tried to power through, waiting for it to pass. During the song my mom looked at me and said, “I hope I’m alive to see Owen graduate.” She meant she hoped to see Owen graduate 5th grade in 2026.
Needless to say, the crying did not pass. If anything, I’d argue that it set up shop right then and there.
A life without my mom, as a concept, is incomprehensible. She was the one who made all the decisions and plans, the one who had the final say in what was going on, the one who somehow remembered all the birthdays and anniversaries. She was the one who knew which wedding dress I’d eventually pick before I even laid eyes on it.
She was the glue.
What happens without the glue?
My MIL is one of the few people I talk to about my mom, especially when I’m very emotional. I sure as fuck won’t be unloading this onto my mom anytime soon.
At one point I was talking about how things have progressed in less than a year. I was doing most of the talking, of course, as my mother in law listened intently. “It’s so weird to me that she hasn’t cooked anything for at least a year now.” I let that statement sink in and quickly sober me: the reality was that even if we got the pain under control, she still can’t cook one-handed.
My mom was known for her cooking, especially after my sister and I moved out. She had much more time to experiment and have people over for meals with multiple courses, themes for the “tablescape,” and entertain small groups for Oktoberfest, her annual Valentine’s Day Soiree, “Gaelic and Garlic” (her St. Patrick’s Day dinner) and we can’t forget Easter. Even simpler dinners when it was just myself, Joey and the kids who visited for the night were a notch above where you’d expect.
Even with the pain under control, she still can’t cook one-handed. And then it clicked: whatever cooking of hers I last ate was the very last meal of hers that I’ll ever have.
I’ll never have my mom’s cooking again.
I’ll never have my mom’s cooking again.
I recently had heart surgery to repair a valve that wouldn’t completely close. Thankfully, the surgery went well and post-op, I’m doing great. I was in the hospital for five days including Mother’s Day. As bad as my mom’s condition is, she somehow managed to schlep herself out of bed, into the city and up to my floor to see me. I know she was in a lot of pain so it was a big deal that she came to visit.
Once I was released and got home, I tried to rest as much as possible. She called every day and apologized that she couldn’t make it to the house to see me. “I’m sorry I can’t take care of you,” she said.
“That’s okay, Mom. Joey and the boys are doing great taking care of me.” And again, it hit me:
My mom will never again take care of me when I’m sick.
My mom will never again take care of me when I’m sick.
My mom won’t be at either kids’ high school graduation. She won’t see me graduate and become an art therapist. When Owen or Ollie experience their first heartbreak, I won’t be able to call her and ask her what to do. I won’t be able to call her sobbing when we drop them off at college. When they get engaged, married or have kids, I won’t be able to share those moments with her. I’ll be doing all of those huge, life-changing things without her.
I’ve never had to do anything without her.
When I allow myself to acknowledge that this will happen and there’s absolutely nothing I can do to slow or stop it, I’ve started to feel waves of anxiety, sometimes so sudden and strong that it could be mistaken for a tsunami. I can absolutely foresee a panic attack in my future.
I’m sorry that I can’t wrap this up in any way that feels comfortable or complete. There are no answers, and treatment for this thing has been a f*ckload of trial and error with no end in sight. This type of disease is undoubtedly one of the cruelest things made by nature.
With neurodegenerative illnesses you don’t just lose your loved one at the moment they pass; you lose them over and over again with every muscle that gives way, with every memory that fades and with the new ones you have to make without them (even though they are still alive), all the conversations that no longer happen and all the life stuff that is no longer shared.
Diseases like this are excruciatingly painful, emotionally parasitic, devastatingly life-altering and on the best of days, feel utterly hopeless.