Adam Smith, 37, was an overly active person until a mysterious, undiagnosed illness turned his life upside down. He saw multiple doctors until one realized the problem was not in his head, but very real. After a trip to the Mayo Clinic, Adam was diagnosed with Lou Gehrig’s Disease in May 2016. After his diagnosis, Adam sent the following letter to his friends and family. He is supported and loved by his wife, family, friends, and sweet Akita.
To point at a day on the calendar as the best and worst day of your life is a rare feat. On May 27, 1985, my wife was born – best day of my life. On May 27, 2016, I was told I’m dying – worst day of my life.
“You have Lou Gehrig’s Disease. There is no treatment, there is no cure. I’m sorry, Adam.”
Mayo Clinic, Rochester, MN
May 27, 2016
As my doctor delicately explained that my body will slowly become paralyzed over the next 2-5 years until I can no longer take a breath, my thoughts drifted to my wife and our families. Turning 31 and being told your husband is dying is unimaginable. I could only think how every birthday for the rest of her life she will have a painful memory that will never fade over time. Thirty-one is too young to be told you’re going to be a widow. It’s too young for dreams to be crushed and vows to become impossible to achieve. Thirty-one is too young to be told you’re going to be taking care of your sick husband for the rest of his short life. Heartbreaking.
For our families, comprehending they will live through another one of us dying a slow, debilitating death was more than I could take – tears streamed downed my face and words became impossible to say. As we sat in the doctor’s office with only the sounds of me fighting to regain control of my emotions, I thought of my mother watching both her husband and son die in less than a decade. It crushed me, and continues to crush me. Heartbreaking.
I know what you’re thinking now. You want to know how am I actually doing? The best answer I can give you is, okay. I worry a lot about the future of those around me. I worry about the financial cost of going out like this – the research doesn’t paint a pretty a picture. My mind drifts – how in the world did I get this disease? I have better odds of getting struck by lightning. I’m angry with the knowledge that even with odds of 2 out of every 100,000, I’m even rarer getting this under the age of 50 and was living a healthy life up until Lou started hanging out with me. I’m angry thinking about Lou. I’m sad thinking about the people that laughed at, or felt burdened by the Ice Bucket Challenge. Most of all, I’m tired and frustrated from Lou being a Stage-5 Clinger.
These thoughts and symptoms don’t consume me 24-7. I still find joy from watching movies, sports, and getting outside with my wife, friends, and family. I enjoy playing my video games. I enjoy working and the people I work with – in that way I’m luckier than almost anyone I know. I still get a lot of laughs from group texts. I laugh a lot with my wife. The Sunday family dinners are one of best parts of each month. All and all, there is still a lot of joy in my life.
Many of you have watched me over the last 18 months decline and wondered, asked, and pushed to know what’s wrong with me. Now that I actually have an answer for you, my hope is that we can make the most of our time.
Again, I know what you’re thinking. What can you do to help? You can share my story. You can let people know there is a face to the Ice Bucket Challenge. You can participate, donate, and raise awareness for Lou Gehrig’s Disease (ALS) research. You can call, write, and push your state representatives to pass a Death with Dignity law in Colorado. I’m completely lost in how to raise money or seek resources. Most of all, you can celebrate and cherish the health, family, friends, and future you all have in front of you.
Lou Gehrig delivered one of the most famous speeches in American history 77 years ago. He told a stadium full of people he was “the luckiest man on the face of the earth,” after being diagnosed with ALS on his 36th birthday at the Mayo Clinic. He was told then there was nothing they could do for him. It has been 75 years since he has passed away and the Mayo Clinic delivered me the same message.
There are currently 20,000 people in the U.S. with Lou Gehrig’s Disease. Compared to the millions with cancer, MS, and HIV/AIDS, the number is very small, and probably why treatments or a cure has not been developed. It also could be because with Lou Gehrig’s Disease, a person is diagnosed every 90 minutes, and a person dies every 90 minutes. With so very few people actually witnessing its devastation, the public support for treatments doesn’t exist.
This is my truth and something my family and I are learning to live with daily.
If you are reading this you likely know someone with a similar situation; and if you are reading this and have no experience with Lou Gehrig’s Disease, I ask that you learn more about ALS. But that is not all. Spread the word that this disease has no treatments; it has no cures; and that those who are diagnosed are prisoners to their bodies until their final breathes.
Please stand with me this August as we raise awareness and funding to find a treatment and a cure!
Each contribution to the fight against ALS – no matter how seemingly large or small – adds up. Please consider making a donation this August, and every August, until we have a cure. Then, tell your friends why the fight against ALS matters to you and encourage them to make a contribution, too!