‘ALS x 5’: How Familial ALS Has Shaped My Friend’s Journey in Life
Aleia Asbey has lost five family members to ALS
Just when we think life has dealt us the worst hand possible, along comes someone whose circumstances make ours look a little less daunting.
I’ve experienced that feeling a few times in a support group I attend and when online. But one of the most difficult hands I’ve seen in the ALS world has been experienced by a person who doesn’t even have the disease. The only thing worse than experiencing one person’s ALS is having to go through it five times.
A family’s story
In 2016, I read an interview on BlackDoctor.org with a Florida A&M University student named Aleia Kristene. In it, Aleia described what it was like to lose her grandmother, an uncle, and two aunts to ALS. To make the situation even more incredible, she lost yet another aunt in 2019. Obviously, her family had the familial form of ALS, which comprises only 10% of all ALS cases.
After reading the interview with Aleia, now 27, I immediately reached out to her. Since then, we’ve become great friends and supporters of each other. She and her mother even came to see me.
Aleia also made a short film featuring ALS patients that includes my story. But her talent doesn’t end there. She wrote a book, “Loss and Found: Discovering Purpose Through Pain,” about her family and their trials with “ALS x 5,” as well as the foreword to my latest book, “I Have A.L.S.: Amazing Loving Savior.”
When I first learned about Aleia’s situation, I thought of my own daughter and the possibility of her getting this disease. I asked my doctor about it and was told I have the sporadic form of ALS.
Unanswered questions
I began to wonder, as I’m certain other patients do, about how I contracted this terrible disease. After all, I was in very good health, I never smoked, and I drank only moderately, usually just a little wine from time to time. Little did I know that anyone can get ALS, whether they’re in good shape or bad.
There are tests for mutations of certain genes that may predispose people to ALS, but please don’t take my word on this; talk to your doctor.
Upon learning about the preponderance of military veterans in this infamous club, I thought about my time in the Navy, 1966–68, and the various jobs I had during my tenure aboard our ship. I used a lot of Red Lead paint primer, which some believe could’ve been the cause of my ALS. But obviously, I don’t know if that’s the case.
Again, please talk to your doctor, because one thing we do know is that each case of ALS is different. I’m not a doctor, nor have I ever worked in the medical field. Listen to those who have, and make your decisions from there.
It’s natural to make every effort to find the causes of our illnesses, even though the odds aren’t in our favor. When I got sick, friends from across the country recommended a variety of natural ingredients to fend off the progression of ALS. I did take many of them for a couple of years, to no avail.
While we’re still searching for a solution, there continues to be a “meantime” dynamic — for example, what do we do in the meantime? I spoke to Aleia recently to see what she’s doing in the meantime of her life. The trials she and her family have endured will forever stay with them, but they do move on with their lives.
Aleia and her mom are very close, and I venture to say that they lean on each other a great deal. The same is true of my wife and daughter, and I want them to pursue their goals as they explore options for me.
Life must not end for family members of those with ALS, whether it’s ALS x 1 or ALS x 5. Aleia is exemplary of that truth. She’s never had a time in her life when she hasn’t had to deal with ALS x 5, but as she discloses in her writing, she changed her physical reaction to it to a spiritual response and is moving ahead with her goals in life.
As for me, writing is my catharsis as well, and like Aleia, I choose to be “Outspoken” about ALS.
Aleia Kristene. (Courtesy of Aleia Kristene)
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About the Author
Ann
I'll definitely be looking for your friend's book. I lost my Grandma to ALS when I was 6, my Daddy when I was 17, Uncle Steve in 2017, Aunt Jeanne on 25 July this year, and 2 of Daddy's cousins so far - Troy in 2007 or so, and Connie in 2010. Then in November 2021, I found out I have the same damned C9orf72 genetic defect that my Daddy and the rest of our family has. At least I know for sure now, though, that I did the right thing in remaining childless, and it confirmed what I'd been fearing for 42 years. Anyhow, thanks for the post.
Susanna Zakon
Very interesting, also frightening.