Young Scientist Looking Through a Microscope

On Hope and Freedom

I’m writing this from a space the size of an old school dorm room, sitting in a narrow twin bed. It’s day 10 of a clinical trial where I am a helper to my daughter who has a form of Muscular Dystrophy called Friedrich’s Ataxia. There are no treatments, there is no cure and this trial is phase 1, meaning a safety trial—the first one with humans after a successful animal research. Risky? Yes. Scary? Yes. Painful? A bit.

Due to COVID what should have been more comfortable just a few months ago is now anything but comfortable. I think prison might be similar. At arrival everything was taken from us, including make-up—a sacrifice that felt like an invasion. We were given scrubs, a small room and a mask to wear outside of our rooms in a small shared space. We are not allowed to leave, and every minute is planned and controlled, wake up, lights out, medication distribution, medical checks, medical tests, meals. Everything.

We are here with seven other patients and a few care givers. They are people from across the country, ranging in age from 19 to 70, differing levels of education, political perspectives, some working and some raising children and some just waiting for a cure. A mix of males and females who share a bond over living with FA and an interest in doing whatever it takes to identify a treatment and one day a cure.

After 10 days together I’ve observed something very interesting. In spite of every injustice, including the disease that is taking their mobility, the endless rules of a clinical trial, worry that they won’t get the medication or what might happen if they do, the additional burden of COVID…I still hear them laughing and talking and playing games as they’ve done from day one. Suffering creates connection. Suffering develops bonds. Suffering generates an inner strength necessary to survive.

It has been yet another reminder of the following truths regarding surviving in a crisis or injustice:

  • Take things just one day at a time. It’s so easy to give up or think you can’t do it, so focus on what you can deal with, just this moment, just this hour, just this day.
  • Live in relationship. This has never been more important than during challenging times—there is nothing more cathartic than laughing and sharing hardships with people who are literally walking in your shoes, or not as the case may be.
  • Fear is death. A regular diet of fear ingested continuously, whether founded or unfounded is debilitating mentally and eventually physically—faith is my protection against fear, it is the antidote to fear, a relationship with something greater than ourselves is critical to survival
  • Take Action, Do something. Give yourself to addressing the issues that you care most about, donate your time, talent and treasure to the supporting people who are not as fortunate—it is a great way to ensure gratitude for your own situation, whatever that might be.
  • Avoid the victim mentality. Don’t give your power away to anything. We always have choices in terms of how we are going to respond to challenges. What does not kill us makes us stronger is certainly true. I’ve found that more often than not my biggest failures have been more useful to others than my successes. In our transparency and humility, in what we learn from the losses can generate tremendous empathy toward others.

Ultimately, we need tools to manage the difficulties in life. Everyone has difficulties, no matter how things might look on-line. Overcoming challenges makes us stronger mentally. Feeling helpless and hopeless weakens us. It can be seductive to give-up, when the odds are stacked against us.

Never give in, the story of your journey might be just what someone else needs to hear at some point in the future. I’ve seen that over and over in these past 10 days. People who are not married, speaking to those who are, those without children asking questions about how others have managed parenthood with physical challenges. It’s beautiful to witness, it was well worth exchanging a few weeks away from the comfort back at home.

Together, we will find a cure. I believe that with all my heart. I’m hopeful that this treatment may take a role in changing the future of people with FA for the better.

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