“Honey, what’s wrong?” Ben looked at me with grave concern as I sat, hunched over my tablet, reading an article with tears brimming in my eyes. When I opened my mouth to try to tell him about the article, I was so overcome with emotion, I just couldn’t get the words out. When I finally composed myself enough to utter a sound, I said “I am in awe.”
What caused such a strong reaction? I had just finished reading an article in ProPublica by Sports and Science writer, David Epstein: The DIY Scientist, the Olympian, and the Mutated Gene.
It is a complex little story, even when eloquently told by Mr. Epstein and I am simply not going to be able to do it justice, so I hope I whet your appetite enough to read it – it is worth every minute of effort:
However, the upshot is this: Jill Viles is a 39-year-old mother and homemaker from Iowa. She is also a muscular dystrophy patient who has been battling a mysterious muscle wasting condition since she was a child. From the time that strange symptoms began appearing in her early childhood, and for most of her life, she baffled the medical community. Without answers and no clear diagnosis, there was no treatment to stop the slow wasting away of her muscles and loss of motion and mobility. As a young teenager, determined to understand her own condition and find answers to her questions, she began a life-long quest that has literally saved lives and changed the world of genetic research.
Jill, young, naïve, untrained and not educated in the world of medicine, research or science, found it almost impossible to find anyone in the medical community that would take her seriously. Even though she spent the better part of her life studying and gaining a remarkable understanding of genetics, without the prerequisite letters following her name, she was turned away, told that she didn’t understand, that she suffered from psychosomatic issues, needed counseling or worse. She often left these encounters embarrassed, doubting her own abilities and hopeless about the future. But she fought on. I will leave it to you to read her remarkable story and learn how she has saved the lives of others and opened the door to a whole new field of genetic research.
However, there is a deeply salient point in this story that resonates with me as a consultant and advisor. Jill describes what it was like to meet with specialists who simply didn’t listen or take her seriously. She talks about her sense of defeat and how, in these encounters, she would acquiesce to those who had more training and experience. Whoa! How often have I observed this, both in my own practice and when observing other consultants at work?! It is so easy to, even gently and respectfully, convince a client, who may not have the education or training that we have, that our course of thinking is the best. It is so tempting, at times, to believe that all of our experience gives us the right to subtly over-ride the thoughts and ideas of those with less knowledge. Have I ever failed to pay attention to someone whose ideas just seemed preposterous to me because I didn’t understand… or didn’t want to understand? Did I miss the chance to help someone else to change the world because I thought that was my role?
Dear Ms. Viles,
You have reawakened my awareness of my own fallibility. I will recommit to humbly listen and patiently consider the thoughts of others, without judgement and certainly without ridicule (spoken or not).
You have moved me deeply with your perseverance (would I have been so stoic and determined?).
You have reminded me, once again, that a single person can change the world, but it takes patience, resilience, sheer gumption and will power.
Thank you for the wake up call.
Sincerely
Lisë
PS: I read that all of your efforts may well save the lives of future generations but cannot come soon enough to save your own. You have been right about a lot of things, but about this, I sincerely hope you are wrong.
Lise,
What a great story! I read the entire thing and sat in awe like you did. The experience I have had with rare diseases and weird symptoms concur with her original experiences. Doctors don’t listen and don’t take you seriously. With the internet patients have lots more information at their disposal and plenty of times lots more time than doctors to pursue their symptoms, issues. I love your vow to listen and not dismiss thoughts from your clients because of your belief that you are more informed or educated. Kudos to you! It is a lesson for us all and surely an inspiration of endurance and not giving up! Thanks!