Feeling grateful despite the challenges of Huntington’s disease
As Thanksgiving approaches, I'm reminded to embrace every moment
As I type this, my heart swells with emotion. My family’s journey isn’t the easiest, but we savor it because we’re grateful for every precious second we spend together.
My wife, Jill, battles Huntington’s disease (HD) with great resiliency and courage, but it’s obvious that the condition has begun to adversely affect her. For instance, she can’t do math in her head anymore, and she gets overwhelmed by life more easily. Several months ago, she accidentally cut herself with a knife because she sliced into a cantaloupe while holding it instead of using a cutting board, like she’s always done. She isn’t as organized as she used to be.
She realizes her cognitive and motor functions are declining. Does it make her sad at times? Of course. But those bouts of sadness usually only last a short time before her smile and sense of humor return, along with her acceptance of her rare terminal illness.
Even though she’s facing a terrible storm that will only worsen in the years ahead, Jill has taught me the art of feeling grateful and embracing every fleeting moment we’re blessed to share.
The weight of her diagnosis is undeniable, and yet, I’m in awe of how the weightlessness of her spirit prevails. She faces each day with grace and a sparkle in her eyes that says, “I may be fighting this, but I refuse to let it define me.”
What makes her even more impressive is that she realizes our daughter, Alexus, is gene-positive for HD, too. And yet, instead of feeling incredibly sad about the fate of her “baby,” Jill channels her energy into being positive whenever we talk to Alexus over the phone.
Jill also tries to see her as often as she (and we) can. We recently bought plane tickets to see Alexus and her husband, and planned to arrive the day before Thanksgiving. However, Alexus called us earlier this month and asked, “Can you guys come any earlier?” I couldn’t because of work, but Jill could, so she changed her flight and is now leaving nine days earlier.
The more time we spend together as a family, the more that every smile and laugh becomes a treasure, a testament to the profound significance of what’s important in life: love.
This love helps us to transcend the trials we will continue to confront as HD progresses. And so, this Thanksgiving, my gratitude stems from the realization that every second is a gift — a present I unwrap with hope, love, and unbridled appreciation for those I hold dear.
Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Huntington’s disease.
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Comments
Steve
Carlos. Great read. I can relate to everything you are going thru. I read all your posts and I always find your words inspirational.
Carlos Briceño
Steve,
Thank you for reading the column. I am sorry we are in the same boat. I will continue to share as long as I am able to. It’s readers like you that make it all worthwhile. I will keep you in my thoughts and prayers as we move forward, hopefully to a cure.
Clara
Jill es una fuerza también para quienes compartimos su lucha. Gracias por compartir vuestra vida con tanta valentía y entusiasmo.
Translation: Jill is a force also for those of us who share her struggle. Thank you for sharing your life with so much courage and enthusiasm.
Carlos Briceño
Thank you for your kind thoughts, Clara. I will continue to share as long as I am able. I wish the HD struggle did not exist, but I am hopeful that sharing our story will help others face it with the same force.
Michelle
My thoughts and prayers are with you and your family.My brother was diagnosed in 2007 at the age of 43.I have been his caregiver for 8 1/2 years. It is difficult to see the struggles everyday but I thank God for my strength and the precious time I get to spend with him .Cherish all the time you have with your loved ones and God bless you all.
Carlos Briceño
Michelle,
Thank you for your kind words. I am sorry to hear about your brother and I am sure he is grateful for all of your care and love. HD is a difficult disease on so many levels, but the family component seems to be the best and the worst part of the disease. I will continue to love every day I am given and to show love to everyone I encounter on that day. I hope the same for you and your family.
Ricki
I too can relate to the struggles of HD. My husband’s mother and brother had it. My husband was diagnosed with HD over a year a go. My daughters noticed the signs first. I struggle with not knowing what to do or what to say. He just turned 60 his license was suspended in October. This was devastating for him. No matter how hard the situation is he’s always so happy and positive.
I need help! I’m afraid and worried all the time.
Carlos Briceño
Ricki,
HD is such an overwhelming disease we often forget that caregiving a spouse is so very difficult. To watch the person you have shared everything with become a different person. I understand your worry and the first thing Jill showed me was how important it is to share your worries and burdens with the person you love. Marriage doesn't stop when one gets ill. Jill said she would rather I share those feelings with her instead of keeping them inside. She may not always react the same way she would have before HD, but she still loves me. She also reminded me that if I am worried about something, she could feed off that negative energy.
Fear and anxiety can get worse when we bottle it, so talking to your husband (and your daughters) may help. They may be feeling the same things you are but they are too afraid to be a "burden." If you are willing to join a support group, there are both online and in-person meetings you can attend. If you go to https://hdsa.org/find-help/community-social-support/hdsa-support-groups/ you can find both.
Struggling with what to say shows you care. Sometimes, just saying you are at a loss for words and giving a hug can be the best medicine.