Project Resilience: Thriving With A Terminal Illness
According to the Center for Disease Control, more than 90 million Americans live with a chronic disease with many of those are terminal. How does a person navigate a terminal diagnosis? Here is one story of one young adult who shares with us her mindset of hope and perseverance.
Morgan was in her early 20s when she found out she had Huntington’s Disease, a terminal illness that affects the brain. The diagnosis was life-altering but it wasn’t exactly surprising.
Morgan had a 50/50 chance of getting it. Her mother passed away from HD in her early 40s, as well as her grandfather in his elder years.
“Huntington’s is a mixture of ALS, Parkinson’s Disease, Alzheimer’s, MS, and really what it does is your brain is deteriorating,” Morgan said. “And so, you’re losing your motor abilities but you’re also losing your personality.”
The nature of the disease is that it worsens with each generation, and a female-to-female passing is even more severe.
“So, on your DNA strand, what happens is somebody basically copy and pasted a gene too many times,” she said. “That repetition ends up making a protein that eats the brain. So like - you know, have you ever done that, where you copy and pasted something too many times? The more you pass it on, the more copy and pastes of that same repetition happens, and the worse it gets.”
In the face of this terminal illness, though, Morgan has hope.
“What Huntington’s Disease for me is right now is just a bump in the road because I feel that we are really close to finding a cure, so I don’t feel like I’ll ever die of HD, and when I was diagnosed, I didn’t cry because it wasn’t sad for me,” she said. “It was, now that I have an official diagnosis, I can start taking place in all these clinical trials, in an attempt to find a cure. Like, that’s how lucky I am!”
It seems like Morgan hit the ground running after doctors confirmed her diagnosis, both in the way she cared for herself and in activism. She’s the president of the Huntington's Disease Society of American - Utah Chapter, a support group that raises awareness of the disease and funds for scientific research.
“I realized, after I was diagnosed, that I had to take just as much care of myself, as my doctors were taking care of me. So, you know, I lost forty pounds, and I started going to art classes and I started biking, and running, and eating healthier because I realized that the only person who is going to take the best care of me, is me,” Morgan said.
And part of her self-care routine is adopting a new mantra in her life, which is ‘this moment is a gift.’
“I tell people I feel so lucky because it wasn’t really until I had a terminal diagnosis that I was like ‘Well, now I have to go hike every single day,’ she said. “You know, this moment is a gift. I have
to enjoy literally every single moment because I don’t know if I’m, you know, not going to be able to walk in a year or two. So it really just makes my vigor for life that much more. And I really hate to use the term dying. I hate that. I hate that phrase; I hate that term. So I try to use, like, the word ‘thriving.’ And so, I try to thrive.”
Even with Morgan’s diagnosis, she lives with hope; a characteristic that Reverend Nancy Cormack-Hughes from the Spiritual Care Center at St. Mark’s Hospital in Salt Lake City says is essential.
“Hope makes all the difference, that if you don’t have hope, then there’s no sense of meaning; there’s no sense of purpose; there’s no sense of going on in life,” Cormack-Hughes said. “On the other hand, hope isn’t something we can just say ‘Let me go to the grocery store and get some hope.’ There’s something that’s deeper within us, that gives us a sense of meaning, and, I believe, something outside of ourselves. When people feel the love of other people, whether it’s their family members, their friends, people surrounding them, and they feel their love - there’s hope when one feels love. Reaching toward other people's love. Certainly, any of us who have grieved, who have lost loved ones, we can feel pretty low, pretty sad. But the love of our friends, of our family, and people coming around us can lift us up and can give us hope.”
As for Morgan, she’ll keep on living her best life, every single day.
“They just say when you’re running, or whatever, like can you go 10 more seconds? Yes. You know, you keep asking yourself that. I can go 10 more seconds. I can go 10 more seconds,” Morgan said. “And the next thing you know, you’ve run a marathon. You know, can you go one more day? Can you just get through this one day? That’s really what it comes down to,”
If you or someone you know is dealing with any sort of trauma or sorrow and is in need of emotional or spiritual aid, see some here are some resources:
Find a Therapist
National Alliance on Mental Health
YWCA - Utah