No, we do not understand. No, we don’t know what it feels like. Empathy is not the same as sympathy. Therefore, it is hurtful and offensive to tell a family that has a son or brother with a degenerative, fatal disease that we understand. How can we possibly know what it feels like to be told about your son’s painful and short future? How can we possibly know the physical, emotional and financial price of caring for someone who is losing his ability to care for himself? Someone we love. Someone who is a child or a very young man. Someone who is our son or brother or grandson.
No, we do not feel their pain. We don’t live in a perpetual state of exhaustion; working full time and getting up multiple times a night to care for our child. We don’t watch our child in daily pain and frustration and without hope. We don’t watch other children play sports or jump or feed themselves and then weep in private because our child doesn’t have the same freedom. We do not defend our brother from bullies or help him up from a pool of blood when he falls face down at school. No. We do not feel their pain. We are not that boy.
But some of us, myself included, do have the privilege of witnessing their resilience, optimism, defiance and joy. And as I witness these lives that advocate rather than abdicate, I am humbled and I am inspired.
Yesterday, I sat at an FDA Advisory Committee meeting on whether to approve eteplirsen, a drug designed to treat a strain of Duchenne muscular dystrophy. Over 1,000 people attended the meeting. That number is impressive considering that many were boys with Duchenne and family members of boys with Duchenne. They don’t just hop on a plane or drive to DC with the relative ease of the average healthy family. Travel is complicated and even more sacrificial than their every day lives.
That number is even more impressive when you consider that this drug will only be effective for about 13% of the Duchenne population. I sat between two mothers who have sons with a strain of Duchenne that will not benefit directly from this drug. I sat next to my friend Beth and her daughter Katie, who had flown across the country to advocate for other families, and with the hope for further research on all strains of Duchenne.
No, we don’t know what it feels like to live their lives. But if you know about this disease (and now you do) you still hurt for those who live with it. I wept yesterday with those weeping in that room. Heck, a reporter in the room was wiping away tears.
Because Duchenne’s Muscular Dystrophy is a rare disease of the worst disposition.
And those who live with it and fight against it are rare people of the best disposition.
I have a lot of observations and opinions on the process of approving or rejecting the release of eteplirsen. But I choose to leave that for another essay.
Today I choose to laud people who have chosen the high road in the face of living a life they would not have chosen.
When asked, “Who is your hero?”, I don’t have to think twice. My friend Beth, the mother of Andrew the brave and Katie the passionate, and the wife of Steve the steadfast, is my hero. She is a woman who chooses Jesus over understanding; she chooses to trust Jesus. And that choice enables her to choose life and choose joy. That choice enables her to put others before herself. That choice enables her to live heroically.
A choice that we should all seek to understand.