“Once the storm is over, you won’t remember how you made it through, how you managed to survive. You won’t even be sure whether the storm is over. But one thing is for certain, when you come out of the storm, you won’t be the same person who walked in. That’s what the storm is all about.” - Haruki Murakami
Danielle’s Story
Had I been looking in a genetic mirror the entire time I cared for my mom?
That was the question running through my head as I watched my beautiful fifty-five-year-old mom starve herself to death as she took control of her destiny with Huntington’s disease.
HD is known as a “family disease” because every child of a parent with HD has a fifty-fifty chance of inheriting the fatal gene for this progressive brain disorder that causes uncontrolled movements, emotional problems, and loss of thinking ability (cognition).
If the gene is passed down, the children will 100 percent get the disease at some point in their lifetime. Back in the day, they called it the “devil’s disease.” Today, there are approximately forty-one thousand symptomatic Americans and more than two hundred thousand at risk of inheriting.
Most people choose not to get tested, because there isn’t a cure yet.
For me, knowledge is power. I knew I couldn’t fully mourn my mom’s death or move on with my life until I knew my own genetic status.
So, three months after my mom died, I started the process of genetic counseling and testing. The test itself was simple—a quick blood draw. Waiting for the results was agonizing.
Am I strong enough to handle this type of information? Will anyone want to marry me? Will I ever have kids? Will I ever get to experience everything that I want to if my time on this earth is limited? How much information is too much information and what information is correct?
Should I end my own life before things get too bad?
These were the questions that consumed me.
Three weeks after the blood draw, I walked into my neurologist’s office to get my results. As soon as I saw the look on my doctor’s face, I knew that I was the next generation of HD in my family.
I didn’t cry right away.
I was numb for months and certainly tried to run away from my problems for a few years.
I drank, I cried, I became depressed, and I kept myself so busy that I couldn’t even think straight.
Two years later, I had to make a similar decision, but this one wasn’t just for me—it was for my baby and her future. I had always thought that I would be the last generation of HD in my family, so after an unplanned pregnancy, my only option was to go through chorionic villus sampling to learn if my baby had HD.
With the same doctors by my side, I went through the process again. This time, the excitement on my doctor’s face told me that my daughter would never have to worry about Huntington’s disease.
Now, seven years later, I’m still confident in my decision to get tested. I still believe in the power of knowledge and work hard every day to be the strong person that my daughter would be proud of.
I managed to redirect my anger and depression and put it toward something positive.
Therapy, travel, and advocacy have become an important part of my life.
I’m married, we have an HD-negative baby, and I have an amazing support system of doctors, friends, and family.
Sure, I still have days where I’m paralyzed by what my future might look like, but I can finally look back and say that I made it through the storm.
It reminds me of a favorite quote from Haruki Murakami: “Once the storm is over, you won’t remember how you made it through, how you managed to survive. You won’t even be sure whether the storm is over. But one thing is for certain, when you come out of the storm, you won’t be the same person who walked in. That’s what the storm is all about.”
This Week's Challenge: Courage in the Face of Uncertainty
In this week's challenge, we draw inspiration from Danielle’s powerful story of courage in the face of uncertainty.
This week, in one small way, embrace the power of knowledge and resilience in the face of uncertainty.
Just as Danielle faced a pivotal moment, you too can confront a fear or uncertainty in your life, no matter how daunting it may seem.
Identify: Take a moment to reflect on something in your life that you've been uncertain about or a fear you've been avoiding. It could be a personal challenge, a career decision, a creative pursuit, or any other area where you've hesitated.
Set a Clear Goal: Define a specific action or step you can take to address this uncertainty. Your goal should be manageable, even if it's a small step towards confronting your fear.
Seek Support: Reach out to someone you trust. Share your goal and ask for their encouragement and assistance.
Take Action: Execute the action you've defined. It might be making a phone call, signing up for a class, or even starting a conversation you've been avoiding.
Reflect and Adapt: After taking action, reflect on your experience. What did you learn? How did it feel to face your uncertainty? If necessary, adapt your approach and continue to take small, courageous steps.
Closing Thoughts
As we navigate our own storms, each step we take, no matter how small, is a step toward growth.
The storms will pass, but the courageous souls we become will remain, forever changed and strengthened by the challenges we've faced.
Embrace your courage, seek knowledge, and weather the storms with unwavering determination. It is in these moments that we discover our true selves and the incredible strength that resides within us.
With warmth and love this week and always,
Danielle’s story is from Scare Your Soul: 7 Powerful Principles to Harness Fear and Lead Your Most Courageous Life.