Status
Not open for further replies.

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
16,376
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
I heard a shorter version of this in an interview with him a couple of years ago. This is more detailed. It is shared here with his permission

My name is Rick Bedlack. In the past decade I have seen more than 1500 patients here at Duke with ALS. Tonight I will tell you about one who left a special mark on me.
ALS stands for amyotrophic lateral sclerosis. Better known as Lou Gehrig’s, it is an incurable degenerative motor neuron disease. Patients affected by it lose the ability to walk, write, dress, speak, swallow and eventually breathe. Death or mechanical ventilation occurs on average 3y after symptom onset. For me as a doctor it has always been terrifying to watch. It has made me feel powerless. Textbooks say there is little to offer against this disease, and that no one ever beats it. Thankfully textbooks can sometimes be wrong.
I started my career trying to fight ALS through science and technology. I read every paper I could get my hands on and travelled the country talking to experts. I used what I learned to build a specialized multi-disciplinary ALS clinic here. My team got very good at measuring the disease in various body parts, and knowing when to recommend things like feeding tubes, bipap, and diaphragm pacemakers. I relished small victories like slowing weight loss, or reducing PC02. I thought this was the best I could do. Then I met Tim.
At age 29 Tim was one of the youngest people I had seen in my ALS clinic. He and the many friends that accompanied him looked even younger with their spiked and colored hair, piercings and many tattoos. As we went through his history and exam, which were unfortunately classic for familial ALS, I noticed that Tim and all his friends had one tattoo they all shared in common: a black swallow. In fact Tim himself had an entire sleeve of these. I asked about them.
Tim told me about his mother, whom he hardly knew. She died from ALS when he was very young. She left him a book, and on every page of this she had drawn a swallow. When Tim turned 16, he had every one of these copied onto his arm. When it became clear that Tim was also developing ALS, many who loved him got at least one of these to show their solidarity. They called themselves the Often Awesome Army.
Tim’s body got weaker, but with the help of his Army his spirit stayed strong. They came to clinic as a unit, smiles on their faces, great stories to tell, and lists of the latest ALS research they wanted to discuss. They helped Tim participate in some of these studies, including one that required him to travel back and forth from Miami. When he needed help at home they took shifts. When he needed expensive equipment such as an eye gaze system for communicating, they held fun events like concerts and tattoo-a-thons to raise money. Instead of lamenting or hiding Tim’s losses, the OAA created a series of YouTube videos about them. These were superbly crafted and well balanced, winning numerous awards including the Webby Peoples Choice Award. Through these, half a million of us laughed and cried as we watched Tim and his Army take on various challenges together including his wedding night with what was by then near total paralysis.
Inspired by the power of this groups’ approach, by the way they made ALS less intimidating, I started thinking about getting my own swallow tattoo. I did some research to be sure this symbol did not have any unexpected meaning that might get me in trouble. I learned that the swallow is an old tattoo that sailors used to get because it is the first bird they saw when land was approaching. For them it meant they weren’t lost at sea…that home was near.
The day I got my swallow, Tim was hospitalized with respiratory failure and had to be put on a ventilator. I travelled to Greensboro to see him. He got a big kick out of my new tattoo…he thought it was too small, that it looked like a freckle. He laughed when he heard that I had asked the tattoo artist to describe their sterilization techniques and that I wanted written post-procedure instructions. He guessed that it took longer to answer all those questions than it did to draw the tiny tattoo. He was right. He asked for an update on stem cell research. That was the last time I saw him.
Tim died in his own home, surrounded by his OAA at age 31. At the time of his death the muscles in his face, arms and legs were completely gone. His heart was as strong as ever.
I am left-handed and my swallow is on my left wrist. Each time I sign a chart, my tattoo pops out of my sleeve. It reminds me that I have more powerful weapons to offer against ALS then medications and equipment; I am now always careful say something funny, optimistic, and or hopeful to my patients. It reminds me that some people can use these to beat ALS by holding onto who they are in spite of the disease. It reminds me of Tim."
 
Thanks for sharing this! It touched me in a very good way.
Audrey
 
Thanks for sharing. Made me cry here.
 
Thanks Nikki.
 
So touching. But sad...only 31 years old.
Charlene
 
Wow Nikki I am so glad he allowed you to share this.

So often people feel their medical team are 'over there' while they are 'over here' and stuff is just thrown from one place to another.

This is a great reminder that each health professional we deal with are in fact human beings who can be deeply touched by our real life calamities in facing this disease.

I was stunned that a few weeks after Chris passed I had some of the health professionals who worked with us either hand write letters to me, or even dropped in just to tell me how deeply they had been touched by the experience of working with me in caring for Chris. All that time I felt 'over there' they had been far closer than I suspected.

Dr B has always struck me as being 'over here' rather than there when I have watched video presentations he makes.

It is so true, the little things can make the biggest difference!

I will never see a swallow again without thinking of Tim and the Often Awesome Army.
 
Thanks for sharing this, Nikki. Dr B seems to be a great guy. Love reading about the OAA. I call my army the shining stars and several of them have Star tattoos now. Love love love the swallow tattoos!
 
Thank you for sharing Nikki. Adversity can bring out the best in people.
 
What a touching story. Tears are dripping in my coffee now! Thanks for sharing, Nikki.
 
Very touching. Thank you for sharing.
Marty
 
Status
Not open for further replies.
Back
Top