I am Christine Chromiak
living with ALS
It’s crazy to have a terminal illness, and then to be let go- given nothing to do about it. It made me feel lost. No pills. No treatment. Nothing I could do to make it better. Just try to live with this incredible weight on my shoulders.
Christine Chromiak, a longtime teacher at North Haven Middle School was diagnosed with Amyotrophic Lateral Sclerosis (Sometimes called Lou Gehrig’s Disease or Motor Neuron Disease) on May 15, 2022. This life-altering diagnosis has affected every aspect of her life. She explains what it has been like…
How did this happen?
No one knows why ALS occurs. It is one of the maddening things about the disease. Anyone can get it. The summer of 2021, I broke my ankle in the backyard while feeding watermelon to our resident ground hog. The following school year, I was still having trouble with my left foot. I fell again while walking my dog at Brooksvale Park. The doctor sent me for physical therapy.
Because of continued trouble with my ankle while walking around the school on mask breaks, I made another appointment with the orthopedist. While running the school play, my foot and leg were continually dragging — I even fell while leading some theater warm-ups. I went back to the orthopedist who told me that the bone was healed. When I showed her that I was having trouble lifting my left toe and explained that I was feeling muscle twitches, she said I had “weakness” and referred me to a neurologist.
The neurologist ordered M.R.I scans of my brain and back. Both of those scans came back normal. That’s when things took a turn. The neurologist inserted needles into my arms and legs to test the electrical impulses of my nerves in my body. (It was fascinating. The human body produces enough electricity in a day to power your home.) The neurologist then referred me to a neuromuscular specialist at another hospital. I didn’t understand what that would mean. I kept thinking that everything would be healed and fixed after the school play was over (which at the time was occupying more of my thoughts than my own physical ailments.) At the next appointment, I found out the truth. The doctor checked some reflexes and asked some questions. He watched me walk. I had A.L.S. A death sentence. It seemed unreal. I felt okay; other than my foot and leg dragging. How could I have this horrible disease?
Me and A.L.S.
As a Language Arts teacher, I taught books over the years with information about neurology and the brain. I taught a book about a famous neurological patient named Phineas Gage, I read and referred to Stephen Hawking’s A Brief History of Time and strangely, when I switched to 6th grade, started offering books by a famous football player stricken with ALS, Tim Green. I even showed 60 Minutes interviews showing Tim Green’s story to my students. I knew about ALS before it happened to me. I knew what it meant. I often thought over the years that it was the worst disease in the world.
How has your diagnosis affected your life?
The full scope of this diagnosis did not hit me initially. I didn’t expect it. I couldn’t even fathom it or think about how to tell my husband and family. I drove home in a daze from the hospital and blurted it out to my husband as soon as he came home from work. I told my brothers and sisters before I told my elderly parents. The hardest Facetime I ever had was telling my parents and seeing them cry. This was over April break. Unfortunately, the diagnosis came with another nasty reminder of health issues- COVID. My COVID symptoms included nausea, extreme fatigue, and coughing. Even though it was a terrible circumstance to have COVID, it gave me time to tell the principal and ask for a way to tell the faculty. I decided that students need not know. It was too big a thing to tell them.
As for ALS, there was a follow-up appointment for the official rendering which coincided with my dog’s 10th birthday. My family came to support me.
The weirdest thing about ALS is this. I was diagnosed and met with a “team” of people: the neurologist, a physical therapist, an occupational therapist, a respiratory therapist, a social worker, a dietician, — a four hour doctor appointment. Then they sent me home with my next appointment in December. It’s crazy to have a terminal illness, and then to be let go- given nothing to do about it. It made me feel lost. No pills. No treatment. Nothing I could do to make it better. Just try to live with this incredible weight on my shoulders.
How you’ve tackled the issues/obstacles
One issue was deciding what needed to be done before this disease takes over my body. I decided I needed to tell the faculty of school so they wouldn’t wonder why I wasn’t walking well or looked unhappy. I created a PowerPoint to explain it, and to ask for help. That’s really one of the hardest things. Asking for help means swallowing my pride that I cannot handle this on my own. The main concerns:
#1: selling our house- wheelchairs (my house is not made for it)
We asked for people to help us prepare our home for sale (we have since sold our home). This is in no small part due to the help of friends at North Haven.
#2: what to do about work? Should I continue or will it be too hard with appointments?
I spoke to the Superintendent last June and he said I could keep my job- which I had every intention of continuing, but fell and broke my ankle the first day of school. This was a bad blow, but I realize that it wouldn’t be best for my students if I was taking sick days for medical appointments.
#3: needing personal care (most of my family is in Pennsylvania)
Now that my husband and I have taken leave from our jobs and have sold our home, we must move in with my parents. ALS requires a village of people and I, luckily, have a large family.
#4 health care insurance and the unbelievable cost of this disease ($250,000 a year!)
This is very complicated. We are not at retirement age, and our worldly savings must be spent before we can get Medicaid. The ALS Association will help us with expensive equipment when possible. Other than that, I will rely on fundraisers. Not only will I die, I will leave my loved ones with nothing.
How are you adapting/preparing?
I cannot walk my dog around the block anymore or go for hikes which used to be my favorite activity. I have a mobility scooter now- which lets me go along. I do puzzles and read which I enjoy to help pass the time. I think more clearly about the laws of the handicapped and have a handicapped accessible placard for my car. I want my dog to be designated as an Emotional Support Animal to go places. I rely more on others to help me. I have difficulty getting dressed and walking and my speech is starting to become slurred. The loss of my body is faster than what my brain perceives, so I have fallen down a few times and as they say “cannot get up.” Friends bought me an Apple Watch which detects falls. My husband and I watch television at night and have a “time not to talk about it”- which is helpful.
My speech and talking is a hard one to think about- as a teacher, it is a huge part of me. Because of the Healey Organization, I am doing something called “voice banking”. The Healey Organization pays to have a “simulated voice” that sounds like me. I recorded 500 mini messages and they will “make my voice”- so a computer speaking will sound like me. I also sing and laugh, so my family can still hear me do those things.
Some people ask about a bucket list- trips or experiences before you die, right? All I want is to be with the people I love and let them know I love them. That has been a great gift of this disease. To let people know I love them and to hear that they love me. Like Tom Sawyer at his own funeral. My family and my husband’s family, my college friends, my far away friends, my out of touch friends, my colleagues, my theater friends, and my neighbors.
There are people at North Haven Middle School that have stepped up to help my husband and myself with meals, garage sales, mowing and caring for our lawn, school obligations, and walking with me at the ALS Walk. Most importantly, sending me texts of connection, cards, gift cards, sitting with me and chatting about “normal stuff,” taking me to medical appointments, getting rid of junk, and lifting and doing things I can’t do anymore. There is a great feeling of happiness from the love and support of the people in my life. There needs to be bigger words than thank you. It could be something like hugs to my heart.
Weirdly, my middle name is “Lou” – like “Lou Gehrig” who famously said “I am the luckiest man alive.” I am lucky too. I have a weird knack for finding four leaf clovers. Also, I have a beautiful family. For 17 years I’ve had the best job in the North Haven community- more than a job really- part of a town. In May, I needed a reprieve from the mental space of ALS, so I asked my family to participate via our shared family group text in the Kentucky Derby: pictures in hats, pick horses, and watching the race together. The horse I picked was the long shot to win. He had a combination of my deceased grandfather’s name (Strike – his nickname) and Rich (my deceased brother in law’s last name- Richie). You know what? That horse won! See me in my horse and hat at the ALS Walk (designed by middle school teacher Micaela Sumner (heart hugs). The ALS Association asked me to cut the ribbon at this year’s walk at Lighthouse Point (a huge honor). The t-shirts say “Chris’s Longshots to win against ALS”.
Since being diagnosed, I am now part of a community of people who have this disease. I have Zoom meetings with them and we don’t dwell on our circumstances. I am thankful to know them! They are funny, inspiring, smart, and kind people. They are helping me tremendously. I am connected to Brian Wallach of IAMALS who was a President Obama staffer, Ben- a marathon runner from Cheshire, Alex- a young lawyer with a great sense of humor in Cheshire, Greg, a vocalist, Jonathan, a Scottish actor and artist, and Tom from Wilton who makes me laugh regularly and gave me an electric wheelchair from his garage. Believe me, these are people who have made and are making the world a better place. I am honored to be among them.
I also rely heavily on the organizations, researchers, nurses, therapists, and doctors in the ALS community. Without them, there is no hope.
I have hope. In December President Biden signed the Act for Rare Diseases which gives more money toward finding a cure for ALS. Another drug was approved recently for treatment (though it costs $156,000 a year). I am part of a NEALS Clinical Research Study of a possible drug (Trehalose) which might help halt the disease. I get weekly infusions. Everything in this life is a miracle, look around! I am pragmatic and need to prepare for this disease, but I also believe in miracles and long-shots. I must live life more in the present. Tomorrow is not a guarantee for anyone. Enjoy your life! Help others! Make the world easier and better for the people you interact with every day. I am amazed what any small act of kindness can do. Look to it.
If students want to learn about ALS, perhaps they should read Tuesdays with Morrie by Mitch Albom. It’s filled with great lessons about life. I know many of my students are making the world a better place already. You, North Haven students, you matter, and by the way, your teachers love you. That’s right, they love you and want nothing but your happiness. I love you and get to tell you that. That’s great.
Top organizations that help people like me:
Live Like Lou