The Day Everything Changed
I will never forget the moment my world shifted.
I was away from home on a business trip. It was December 2018. It was cold and snowy that day and as I was looking through the window of my hotel room admiring the view my wife called. I answered and heard on the otherside of the line her crying, "I can't do this any more. I can't go to work!". The anxiety of her job and having to learn and train in new tasks was too overwhelming for her.
What is a husband to do when his wife calls upset in a plea for mercy, for grace, and fear of what might happen in the course of a 'normal' day? There was only one thing I could do, to provide her comfort and relieve her fear, her anxiety..."It's okay dear. Stay home, you can quit. We will figure it out.".
Did I know if we were going to be okay? Nope! But faith has taught me to trust. We were not ready to be a single income household. I had just restarted my business for the third time and was now just beginning to grow it.
Fast forward almost 4 months, my wife still having severe anxiety and depression we tried different medications and then after a suicide attempt we knew we had to get much more help and figuring out what was happening to my wife.
While my wife was getting the treatment she needed I reached out to a HD Centers of Influence to schedule an appointment. We discussed her family history and decided to test. They said the results would take about two weeks.
The day before my birthday we got the call. My wife and I stood together in my home office. The room was sterile—too cold, too quiet—and the neurologist’s lips moved, but my mind could only focus on one phrase:
“It’s Huntington’s Disease.”
Everything else after that became a blur. I saw my wife glance at me, fear and confusion in her eyes, and I realized in that moment that our lives would never be the same as our fears were confirmed.
What is Huntington’s Disease?
If you’re unfamiliar, Huntington’s Disease (HD) is a rare, inherited brain disorder. It slowly breaks down nerve cells in the brain, impacting movement, thinking, and emotions. Over time, it robs a person of their ability to walk, talk, remember, and care for themselves.
There is no cure. And because it’s genetic, the news hits not only the present—but the future.
The Diagnosis: Questions Without Answers
In our case, the diagnosis came after months of unexplained mood shifts, memory lapses, and subtle changes that we wrote off as stress or other external factors. We weren’t looking for a life-altering explanation—we were hoping for something treatable.
I remember asking the neurologist, “What does this mean for us?”
The answer was honest:
“It’s a progressive disease. Symptoms will get worse. We’ll manage what we can.”
The medical language was clear. The emotional language was not.
Shock, Grief, and Survival Mode
In the days following the diagnosis, we didn’t cry—we just froze. There were prescriptions, referrals, and genetic counselors, social workers and follow up appointments. There were phone calls to make and decisions to start processing and potential studies to participate in. But behind all of it was a growing grief.
Grieving someone who is still here is a surreal experience. Seven years later as I write this, my wife is a shadow of the person she once was. In many ways, I have already lost my wife. I now have a patient, an "adult child".
I wasn’t just losing the future I imagined—I was watching it slip away in slow motion. My wife was too. But we also had each other. And that mattered more than anything.
What I Wish We’d Known
If you’ve just received a diagnosis—first, breathe. And know this:
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You’re Not Alone
Reach out. There are communities, Facebook groups, local chapters of the Huntington’s Disease Society of America (HDSA), and caregivers like me willing to listen. -
Prepare for a Long Journey, But Not Alone
Build your “village” early. Doctors, counselors, friends, spiritual leaders—every single one is a support beam holding up your world. Additionally potential people that can provide hours or days of respite to give yourself (as a caregiver) a break. -
Start Documentation Early
Keep a binder or digital folder. Medical notes, test results, doctor’s names, medication lists—it will grow, and you’ll be glad you organized from the start. Also, perhaps a journal or event log when something happens so that when you discuss new behaviors or injuries you can refer back to and may also be able to establish certain patterns. -
Give Yourself Permission to Grieve and Feel Angry
You don’t have to pretend everything is okay. Your emotions are valid. There are many times I have shouted, yelled, been angry at what is happening to my wife; and I have been sad and depressed at the loss of a life partner and the adventures we or she won't be able to participate in.
A Turning Point
After the initial fog lifted, we made two decisions:
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We would live with intention.
Every good day, every laugh, every walk—even if slow—would be celebrated. -
We would share our journey.
Because someone else out there is sitting in a sterile room right now, hearing the same life-altering words we heard. And maybe, just maybe, our story can make theirs feel a little less alone.
Scripture That Anchored Us
“Even though I walk through the valley of the shadow of death, I will fear no evil, for You are with me.” — Psalm 23:4
That verse became more than poetry—it became our compass. We weren’t walking alone. And neither are you.
Resources:
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Book Recommendation: “Learning to Live with Huntington’s Disease: One Family’s Story” by Sandy Sulaiman
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