In this week’s episode, Thomas Dixon and Rachel Robinson manage to build a friendship, despite not remembering the exact moments they shared.
Thomas Dixon is the author of "I'm Sorry... That's Awesome!: Inventing a Solution for Memory Loss", and the inventor of ME.mory (a digital memory mobile application/service). Thomas was running when struck by a car and injured so badly that he nearly died. His episodic memory (specific details like places visited, people met, what has happened recently) has been severely compromised by his TBI. Since inventing ME.mory Thomas speaks and writes on the role of technology's benefits for episodic memory. As a world traveler he has been in twenty countries and looks forward to setting foot in many more.
Rachel Robinson has lived with epilepsy for more than 20 years. To help overcome the challenges from this life-changing condition, she helps to educate those in the epilepsy community, working as a Patient Educator for a medical device company. In her spare time she enjoys bowling with her husband.
The ME.mory team continues to seek funding to fully release the application. If you want to talk with Thomas or otherwise support their efforts then you can email him at thomas@yourdigitalmemory.com.
Episode Transcript
Rachel: So back in 2004, I was working as a software engineer for Lockheed Martin. I'd been working there for a few years, right outta college. I had just finished grad school. My boyfriend at the time, we were dancing salsa, going to salsa clubs. We actually were in a performance group too. I was living my life.
It was awesome. But I was seeing a therapist at the time and I was going to her for talk therapy. Just for regular stuff in life. At that time, you know, I was in my early twenties. I had just started living on my own. I described to my therapist some of the things that were going on, just sometimes I was having trouble with my memory.
I was losing focus sometimes, and I described for her an episode that I had while I was at work. One of my coworkers actually found me in the parking lot. I was laying down behind a car. My therapist recommended that I actually see a neurologist, and that's what I did.
Tom: I was a research coordinator at Children's Hospital of Philadelphia in the Department of Child and Adolescent Psychiatry.
I was UPenn pre-med, taking organic chemistry and physics, and I was going to become ideally a psychiatrist for children. I, at that time, I was still running pretty regularly. I ran half marathons. I had been visiting my family and I went for a run on November 22nd, 2010. I'll never remember that day. I mean, there was a specific intersection, but I don't recall it at this moment.
I was hit by a car.
I've been told that an officer arrived and he asked me my name. I said, “Tom Dixon.”
“Do you know where you are?”
I said, “Tom Dixon.”
And then he had asked me, “Where are you from?”
And then I said, “Tom Dixon.”
I believe that I had some blood trickling down from my head. They told me to sit down. I told him no.
And that's when they called for the ambulance.
Rachel: We arrived at a diagnosis of epilepsy. So, the type of seizures that I have, they called them focal seizures. A lot of things that I would do with seizures earlier on were lip smacking, some moaning, and then after 30 seconds to a minute, the seizure would pass.
And for me afterwards, I'm usually very confused. I might not know where I am, or I might not know who the people are around me. My seizures were starting in my right temporal lobe. What it progressed to was me having a couple dozen seizures a month, tried some medications, didn't work, tried another, tried another, tried another.
So, after a couple years of living with epilepsy, still continuing to have seizures, my doctor brought up the idea of having brain surgery and my boyfriend, now fiancé, at the time. We were in love. We wanted to get married, so we just decided let's get married, and then we'll kind of venture into the surgery together.
And then we decided to have the surgery done in June of 2010. Going into the surgery, I had an expectation that having the surgery was going to stop my seizures.
I had the surgery, and I actually had a seizure the very next day while I was still in the hospital, and I went into a major depression.
I felt like I lost my hope.
Tom: Ever since November 22nd, 2010, I have lived with severe episodic memory loss and epilepsy episodic memory loss. It's like how some people feel about TV shows. You know the characters, you know, the overall dynamic. Yet I don't remember the details of what happened in each episode.
I know overall who I am and my life, but the specific details are very hard or impossible to recall.
Rachel: The way I describe my memory situation to people is whenever a friend starts off by saying, “Oh, remember when we did this? Or we said this? Or I said this. Or you said this.” The chances are I don't remember.
Tom: I had to reconstruct my life. I had to give up the career ambition of becoming a psychiatrist. I had to close the door on that potential version of Thomas Dixon. I wanted a memory record that could not be lost. To make sure that no matter what happened to my phone or anything, that my memory would be guaranteed to exist.
I used Twitter as a record of memory, so I had no followers, and I just wanted to be able to scroll through my recent Twitter feed to be able to know what had happened in my life at a specific time. Twitter is not intended for the purpose of a separate type of memory. I don't believe you could search your own memory, type your friend's name, and then just find out what happened to them over the years.
I needed something that would allow me to do so. I went into an idea incubator space at Temple University saying that I had an idea for an app.
I have no programming experience, so I collaborated with my teammates to come up together with an idea for an app.
ME.mory is meant to be a digital memory. It's meant to be a record of events that you could search fully, that can give you a greater feeling of your life. A supplemental memory.
Rachel: I grew up with a group of friends from my early childhood into my high school years. I like to be around people. I'm a social person. I like to have fun. A couple years after the surgery, I started to experience seizures that were triggered by music. Any type of music. It could be dancing at a wedding reception. Hearing music at a funeral, hearing music in a store. I had to make a decision. to stop attending things that triggered seizures. We had to stop dancing salsa. We had to stop going out. I had to stop going to people's weddings. It was really hard just not being able to go to things that my friends go to.
Tom: I like to connect with people very much post-injury. I was learning how to become a new version of myself socially as a brain injury survivor, I had to be very open about what I was capable of doing as a friend to people. Memory loss is associated with not caring about people. You were not paying attention when they told you something.
Rachel: When my epileptologist confirmed that what I was having was seizures, one of the organizations she told me about was the Epilepsy Foundation of Eastern Pennsylvania. They had an organization for young adults living with epilepsy, and that's where I met Tom and his girlfriend at the time.
I'm going into my phone now and I just opened up my contacts, pulled up. Tom Dixon here. I have a picture of Tom. He's got glasses on and a big smile, which is totally Tom.
So, I probably asked him, “Hey, can you take a picture for me so I can remember who you are on my phone?”
Tom: I was looking for groups to connect with and through EFEPA I met Rachel Robinson.
All right, so now I am pulling up ME.mory and I'm gonna go ahead and search for Rachel Robinson. Am I allowed to joke and say that she owes me $500, the first entry that has her full name in it? May 20th, 2016. Rachel Robinson typing here.
We're at the EFEPA young adult retreat, and she typed: “It's a beautiful, warm, sunny day. It's been awesome talking to you today. You are a great guy and I've only known you for a few hours. Smiley face. Let's stay in touch.”
A lot of times, depending on the comfort with the person, I will have them write into ME.mory, so that they can note for themselves what they believe is important, what they decide for me to remember.
Rachel: Tom is a very quirky guy. Tom is a super fun, super warm person, and he is a joke teller. He loves telling jokes. We always wind up laughing. It's nice to have a friend who can really understand some of the challenges that you're going through. Knowing Tom, spending time with Tom like made me feel well, not alone and hopeful.
He still has his challenges. I still have mine, but we're both, we're living.
Tom: Let's go ahead and see how my friendship with Rachel has changed over the years. And, of course, this is gonna pull up a ton of entries. So, here's one at my suggestion Rachel Robinson watched with me here at home, an episode of the nineties animated Batman cartoon series, and I'm glad she enjoyed it too.
We are now in Phoenix, Sky Harbor International Airport. That's back in November of 2022.
Here she is back in June of 2023. So much I could note here in Florida and Disney World overall, if you had told me that we had gone to Disney together, I'd be like, “Yeah, okay. I believe that happened.”
But myself on my own, being able to recall that is pretty difficult. It really means a lot to me to have records of memory because the feelings are still there. Even if your organic memory is not, I don't feel as empty as I would otherwise, as compromised as I would otherwise. A ME.mory entry is going to be there a year from now the same that it is today.
Rachel: I think the reason Tom and I hit it off so well is because we both have partners, so we understand maybe some of the challenges that come up in relationships. He understands how our partners, they love us, but they also worry about us. There is a burden. One kind of story is like if I'm in the shower and let's say I drop the soap, my husband is gonna come into the bathroom.
“Are you okay?”
I always shout out, “I'm okay! I didn't have a seizure!”
And I think I said that story to Tom before and we vibed, we understood because that's how it is.
Tom: I am married, Rachel is married. Being in a couple, it can be pretty, sometimes funny, the experiences that you may not recall.
Rachel: So over time our friendship has evolved.
It's grown. Him and Lindsey, me and Gregg, we went to Florida a couple years ago, but I don't remember specifics. I just know that we had a good time.
Tom: If I step outside of ME.mory, my sense of Rachel is that we are very buddy-buddy. One of my nicknames for her or for each other is Brain Bud.
Rachel: Brain bud. I don't know how we got around to this, but he is my Brain Bud.
Tom: Because it's been years now, I expect it to be a very comfortable and relaxing dynamic when we're hanging out together. I feel like she's a great person in my life. When you are seeing somebody again, you already know, do you do a nod? Do you wave? Do you say like, wow, it's been so long. Do you give that person a hug?
So that already exists without a specific memory. It's a cohesive narrative that you've already formed over months or years.
Rachel: Something that my husband and I do a lot are game nights at home. There's gonna be some snacks, there's gonna be a lot of laughing, so sometimes we'll invite Tom and his wife, Lindsey, over for game night and it'll be just the four of us.
The last time they came over for game night, I think we played poker. It's just so relaxing, having him over. I could see us being lifelong friends a lot of times when you get together with friends. And you reminisce about past experiences. It forms a bond with me and Tom. It's not what our friendship is based on.
I think it's like just the connection that we have. It's strengthened by the things we do together, through our shared time together, our experiences, whether we can remember them or not.
Tom: Right now, I am searching for my most recent entry regarding game night, February 28th of this year, and it was Texas Holden Poker. My wife won.
So, congratulations. Maybe I can see an entry where she doesn't win?
The games are a lot of times are gonna be secondary. You know, it's also an excuse to laugh as much as you can say, jokes that are corny. Life with disabilities can take various forms and people follow your lead a lot when it comes to disabilities. You set the parameters.
What I figured out after my accident is that people don't really care so much about you remembering the individual things that happen if you express just how much you care if you help them to feel consistently warm, consistently good. What people are looking for in friendships is comfort, support, recognition.
If you put in the effort to reinforce a relationship, people are very understanding. They will come to you.