The Up-Side of Lou Gehrig's Disease...

Robin's high school graduation photo, 1961

At the end of March 2003, my dear uncle Robin Tomlin drove down from his home in Surrey, British Columbia to where I live in the northwestern United States. My father's only sibling was a decorated U.S. Marine who flew more than 1,150 combat missions in Vietnam and was awarded fifty-nine air medals. He had retired a few years earlier after a twenty-five year career with the FBI. I had always been close to Robin. Every summer during high school, I would fly to Albuquerque and stay with his family. In the past few years, we became huge emailers. We were the only Republicans in the family and thus exchanged many of those dreaded political forwards. He was my second Dad. :)

This quick trip was a little different. Robin had just turned sixty in January, and he wasn't aging well. He looked very tired. We took some pictures and I hugged him goodbye. I had been intending to drive up to Canada and visit him, but you know how we get busy. There's always tomorrow, right? Right.

Upon returning to Canada, Robin emailed me. He had been diagnosed with Amyotrophic Lateral Sclerosis (ALS), otherwise known as Lou Gehrig's Disease. He had been diagnosed before he came to visit, yet never said a word.

Lou Gehrig, I thought. 

Lou Gehrig...Pride of the Yankees...wait...WHAT???!!!

Robin receiving the Distinguished Flying Cross for Bravery, 1969

I cried for three days. Then I pulled it together, reminding myself that many ALS patients live for five to ten years post-diagnosis.

Robin lived exactly one year longer.

Robin holding me as a baby, 1972. We both look a little unsure of the situation, LOL.

During that year, I did the things which I had been meaning to do, but never got around to. I wrote up some memoirs and sent them to him for his last Christmas of 2003. I wrote about my very first plane trip in 1986. Robin was with me and I recalled sitting in the Portland Airport with him, spilling my hot cocoa all over myself with nervousness. He said that happened to him all the time (nope, it didn't!). We boarded the plane and proceeded to sit on the tarmac for three hours due to a malfunction. We eventually boarded a different Boeing. All the while, Robin reassured me that everything was fine, as though every flight began with a three hour wait on the aircraft with no A/C!

Robin's appointment to the United States Federal Bureau of Investigation was one of the final acts of J. Edgar Hoover.

I also made him a huge scrapbook of his life, from his time growing up with my father in Oregon, to his days as a Marine, to serving in the FBI and raising his family. He actually called me and said it was the most beautiful gift he had ever received. I had meant to make that scrapbook years before...

Me (rockin' the 80's Aquanet hair) at age 14 with my cousins Rob, Trent and Uncle Robin.

On March 16, 2004, I was rushing out the door with my three-year-old son when the phone rang. Normally, I would have just left. But I followed my gut instinct and answered the call. It was Robin. His speech was slurred, but we had a wonderful chat. He talked with my son. Then I got back on the line. I told him I had to run, but that I loved him. 

Long pause. 

“I... love... you... too........... Julie............"

A couple days later, he slipped into a coma from which he never awakened.

Robin and his wife Julie, somewhere in British Columbia.
This was taken shortly before he started having symptoms of ALS.

I am so grateful for that year. I'm thankful for the time ALS allowed us to have with Robin. Looking back, the advance warning was a blessing - the "upside" of Lou Gehrig's disease. (Seriously...there is a silver lining in everything!!!) We are all going to die. Some of us will live to be one hundred. Some of us will go suddenly at twenty-three. Either way, there are only so many days allotted to each one of us here, and then that's it. There are no do-overs. Make it count...!

You never know who will be here today and gone tomorrow. I'm grateful for Robin's diagnosis and the reminder of mortality. ALS told me: “You have limited time on Earth left with Robin. It's time to call him more regularly. It's time to write. It's time to do that scrapbook. I will decide when he goes and this is your notice. Consider yourself warned.”

And because of the knowledge of mortality, I cannot stand for there to be "bad blood" between me and anyone else. (Note: If I ever meet President Obama, I will make him dinner and welcome him in my home). I do not want to live with regrets. I don't want to say something hurtful I cannot take back later. I don't want to miss opportunities to love my friends and family.

If there is someone you need to make things right with, please do it! Saying it now will be much more effective than speaking to a gravesite in the future. Make it right even if you are not in the wrong. I guarantee if someone has offended you, they aren't thinking about it anymore. When you forgive and move on, then you are set free. 

Tell people you love them! I believe at the end of our lives we regret that which we do not say, much more than that which we say.

Write that letter. Make that phone call. Create that scrapbook. Say what needs to be said.

Robin, I miss you. I will not give up until you receive the Silver Star you were nominated for! You know me. I'm working on it – but this IS the United States Government I am dealing with. Soooo......ya......... :)

With love always,      

 ~Julie

Robin J. Tomlin, Distinguished Flying Cross Link

ALS Association Website