Quote: “But the life I thought was over has been rebuilt and is very much worth a while these days.”
Tina: Please tell me a little bit about your brain injury and a little bit about yourself as well.
David: Before my injury in 2010, I was newly married, just over a year, and life was really good. I was a successful businessperson running an internet marketing company. Life really couldn’t have been better. My wife and I remain best friends until this day, and we were settling into a really comfortable, good life.
Turning the clock back a little bit: in 2000 I was diagnosed with type 2 diabetes, and I was overweight at the time. My doctor told me to make some lifestyle changes; therefore, I got back on a bike! I used to be a passionate cyclist. This was somewhere in my mid-forties, and I rediscovered that passion of my youth, and it was wonderful. Over the course of 7 months, I lost a lot of weight and got into a healthy habit of biking - about 30 miles every day. And being self-employed, I was able to do that, take a couple of hours every day, go out, and just enjoy the ride.
On November 11th, 2010, I said to my wife that I’m heading to my daily ride. She shared with me after the fact that she always felt like a police officer’s wife, never knowing when I left when I would come back because people are a little unpredictable on the road these days.
I went out with the intent of doing my 30-mile ride. It was a beautiful November day, 50 degrees, full sun, and pulled up to an intersection that I had biked through dozens of times. Looked to the left and I was clear, I looked to the right and I was clear, and gave a push to my pedal, and was immediately T-boned by a car driven by a 16-year-old newly licensed driver. Things are what they are, we had the opportunity and went to that same spot and the same day of the year and looked at the scene, and he was driving right into a full setting sun. The police estimated that he might be doing a full-on 30 miles an hour or more when he hit me, but didn't see me never hit his brakes. I was catapulted about 50 feet down main street. I had gone right through the windshield of this car and landed on main street, knocked unconscious. When I opened my eyes, I was surrounded by a handful of people… I haven't talked about this in a while…
Tina: Oh please take your time.
David: People were saying things like don't move. I was fortunate enough to have had the accident about two blocks from the main fire station here in our town. In the piece that's seared on my memory was that I looked down and there was a passerby that had their hand over their mouth. They had tears streaming down their faces.
At that moment I thought, “wow there’s a pretty good chance I'm going to die today.”
I kind of mentally did a space check of my life: the last words that I said to my wife were I love you, the kids were… it was a second marriage for both of us. We each had four kids by that time, and they were all young adults. It wasn't life flashing before my eyes but then I looked back and went, you know what, I've lived a good life and I don't want to die today, I really don't want to die today. But I've lived a good life. And looking around, more and more passers-by stopped and I started to pull one of the full-face coverings off and take my helmet off. Folks are saying, “just don't move, don't move!” By that time I was becoming conscious again and I was in just a world of pain. I wiggled my toes and went, “Okay, I'm not paralyzed.”
The first responders came and got me loaded up onto a stretcher. I didn't realize that that little moment was going to be the linear pushpin on the timeline of my life, where PTSD would start. In my decade-plus of just kind of living an immersive life in the brain injury community. I found that those that have had catastrophic events with no memory of the event generally don't have PTSD, but those who had an experience like mine, where they can recall in vivid detail what happened, they're more likely to live with PTSD. It was just horribly traumatic.
Continuing on, they got me into the back of the ambulance. While I was on the ground, I kept calling out my wife's cell phone number. There was a passerby named Jim. I still remember his name to this day. He called my wife and said, “Your husband's been in an accident, and they're going to be taking them down to the hospital.” When I was in the back of the ambulance, I said the same thing: “please call my wife and give them her number.” I believe Sarah still has Jim's number locked in her cell phone after 11 years. They were able to get in touch with Sarah. She moved to Salem after we got married, so she wasn't really familiar with the area that much.
Again, fate was very kind, halfway there they brought me down to a large general because it was the nearest Trauma Center. Just by circumstance and kind fortune, Sarah ended up following the ambulance. I can't imagine what it was like for her when she got a call from a complete stranger that I'd been injured. They're taking me down across state lines to an ambulance, she's driving behind it, and the only thing she can see is the windows in the back with the lights on and they're working on me. They wanted to give me something very strong for the pain, but I didn't want that. They ended up giving me intravenous Advil.
We got to the hospital, they had me strapped in on a pick, it's called a backboard in case there were spinal injuries. The only thing I really saw was the ceiling of the ambulance. When they wheeled me out, I looked up and there was my wife's face. It was all puffy and you could tell she had been crying. I tend to use humor, very often dark humor, but I pulled the line out of A Charlie Brown Christmas, where Linus says, “And behold the face of an angel!” And then she smiled and she knew that I was with her at that moment, and they whisked me into the trauma center. But they did an assessment, they did a CAT scan and they stated that I was fine. They did X-rays and I had a broken bone on my arm, pulled ligaments and tendons on my leg, covered with lacerations from going through the windshield of the vehicle that hit me. My wife spent the next three or four days with tweezers pulling glass out of my head. I checked myself out against medical advice that they wanted to keep me and I said, “you know hospitals are either for the sick or the infirmed, and I am neither, so I'm going home.”
The next day I was at an orthopedist and a neurologist. The orthopedist took the temporary braces that they put on and gave me a cast and the neurologist… I have not had very good luck with the medical community since my brain injury. The neurologist did what's called a Montreal cognitive test: 10 or 12 questions, my wife should still know the questions and most of the answers. I passed with flying colors! The neurologist gave me a high five and said, “Okay, have a great day, you're good.”
For the next couple of weeks, I started to recover at home. My physical injuries were very slowly healing, but something was dramatically different. I just couldn't explain it. I knew at a primal level that something was fundamentally wrong with me. I couldn't describe it, I couldn't explain it, but everything just felt different. The analogy that has worked for me over the years is to imagine if you've lived in the same house your entire life. Then one night through magic in your sleep, that entire house has moved half a block away. You get up in the morning and you look out your windows and inside your house feels the same. But once you look out your windows, everything has shifted. That was kind of like it was for me, I opened up my eyes and my entire house shifted. It was from the get-go that the PTSD manifested in the form of horrific nightmares. Three or four weeks for over a year. We both walked around extremely sleep-debted. I knew that PTSD had kicked in. But I didn't know or understand that I had sustained a traumatic brain injury.
I had a couple of events that happened. The first one was a couple of months after the accident. I picked up a box of brownies to bake and I looked at the directions on the box of brownies, and I had abruptly lost my ability to read. And again, the analogy that I would use is just to imagine getting off of a subway in Tokyo and not being familiar with the language. You recognize characters and you know that they equate to words, but you can't translate the characters to the words. It was like that for me while trying to read. I know they were letters, but I couldn't make them out into words.
I went back to the neurologist, and he confirmed that I got a concussion. By this time I just wanted to feel like myself again. What am I going to be back to where I was? The neurologist confirmed probably three months or so. We left the doctor's office with our spirits quite high because we were told what I had. Because I was given a timeline for recovery. Yeah, that was big event number one after my injury, big event number two was a month or two after that I went out back on a bike again. But I couldn't go on any big roads because of the PTSD. I just couldn't be near cars and was very blessed to live in a quiet neighborhood. Back out on a bike again, and I thought this was really going to be a great ride. I looked at my mileage counter and I had already ridden 25 miles.
I had no recall of it. It was gone. I thought like I just left my house. And again, I like analogies. It's like having a camera with no film. It looks good. But it's not laying down any pictures at all. I got back to the house, and I was just totally messed up by the experience. As I'm walking in, my mind said, “You know, you were probably in a coma and you're laying in bed.” Your mind has manufactured all of this just to keep you going while you're laying there in a hospital bed. It was totally surrealistic. That brought about a second call to the neurologist and we were down again the next day.
He said, “Well - this was the first time I got the official PTSD diagnosis - the concussion actually was quite severe, we're going to upgrade that.” However, my question remained the same. “When am I going to be normal again?” He responded that he was sure and that it would probably be about five years. You might think that some people would be devastated by that. But you get a little bit older and time passes a little more quickly. It was a date on the calendar that I could look forward to.
Kind of fast forward to today, I have since learned that there's no such thing as ever getting back to the person who I used to be.
We left quite pleased that day with a little more information. I mentioned being ill-served by the medical community, so he said, “I don't really specialize in concussions,” and the doctor actually pulled out his business card and said “see what you have, I don't take care of. But I'm going to recommend somebody in Boston, you'll hear back from a member of our staff. There's this big misconception that all the best doctors are in the Boston hospitals, and there are absolute lifesavers down there.” We waited for a while for the connection to a Boston doctor, but the call never came.
For the majority of the first year after my injury, I kind of call that the flying blind period where life was just miserable. Nighttimes were horror-filled. Daytimes the way my brain injury manifested: a dramatic shift in my personality, I was not the person who people had known. I developed a very significant speech impediment. Somewhere in March or April of the year following my accident, I abruptly lost my ability to speak and something that I read somewhere and postulated that it might be because the brain damage was at a cellular level in about that window, it starts to convert the scar tissue, but that's just speculation. I had terrible vertigo. One of the pieces to happen is there's a concept called executive function where it's basically your mind telling you that this is okay to do and this isn't okay to do. You don't have to Hearthstone because you know there were consequences. You don't run into traffic because you know you'll get hurt. My executive function was shot. I went out one day in a blizzard riding my bike because I thought it was a good idea. [chuckles] It took a tough fall that resulted in surgery that ended up leaving me with a handful of titanium. I had no verbal filter, my wife was very hesitant at taking me out in public. And again, for the uninjured. If you're standing in line behind somebody with 15 items in the 12 items or less line, you might scorn a little bit, but you don't say anything. But I'd be inclined at a very loud voice and go, “Can you believe that guy out there with 15 items!” I was a train wreck.
That first year was really pretty miserable. And there was no real recovery. But during that time, I did get introduced to brain injury support groups.
Tina: That's unbelievable! Your doctor never introduced you to it?
David: Nope, never suggested that at all. It was not hinted at, not even on his radar screen.
Tina: It just makes me so mad. Because this same situation happened to some of my past interviewees.
David: Yea, circling back to one of our earlier are really talking points. It's an underserved community. I initially reached out to the Brain Injury Association of New Hampshire and asked about support groups. The nearest ones were Concord, New Hampshire, and that's a 60-mile round trip for us. The other one was Peterborough, which is about a three-hour round trip. When I shared that I literally had trouble matching my socks at that time, the idea of getting in a car and traveling this distance just didn't work. The Brain Injury Association reached out to us and said they started a new support group in Salem, which was half a mile from our home. I walked into the first meeting, and it changed my life forever.
It was the very first time that I could be around people who understood the things that I was going through, not because they had read about them, but because they had lived them. One of my early friends was a middle school teacher here in town. She taught my son; she actually fell on ice in the middle school parking lot and sustained her brain injury that way. I remember being at the meeting trying to speak, but the words wouldn't come out. She then came over, kindly put her arm around my shoulders, and said, “it'll come out when it's supposed to, and just that compassion!” That group was a big part of my early recovery, I've actually written about that, in the years since, support groups absolutely save lives.
I also lived for a lot of that first year with a whole bunch of suicidal ideations. I could look at my wife's face. I know a lot of couples who tolerate each other, I know couples who don't like each other, my wife and I are very fond of each other. [chuckles] I could see in her face the pain from everything that had happened. The little, little voice in my head said, “you know, she's going to be a lot better off without me and she'll mourn me for a couple of years. But you know, she's smart, attractive, kind-hearted; she'll move on.” Fortunately, slowly, by the grace of the universe, I never acted on those thoughts.
The support group was great, but we only met once a month, and there were these big windows of time where it was like, “Oh, my God, I'm on a freaking island.” Again, not having any contact with anybody. I started a small Facebook community called Fateful Friends. That community has since retired, I don't think there's been activity in there for six or seven years. But for the first few years, it was a safe online neighborhood, an online community where we could touch base and it was really, really helpful.
One point would have been in 2012, the little light bulb went on over my head, and I thought, “you know what, something like this would help others because, at this time, I didn't really have much of a feel for how prolific brain injury was worldwide. This may help some folks. Maybe we could, I could create an environment that's public, and just start posting things there that resonate with me, as a brain injury survivor.”
That was January of 2013. We touched base earlier, the group now has 36,000 members. It's literally the most engaged online community worldwide. That has just been such a joy. Just to be part of growing that community and watch it fill that unmet need. During the first year after my injury, one of the things that I started doing was journaling, I found writing to be helpful. I'd always enjoy the process of crafting the written word. It's funny, but the day after my injury, I actually wrote a blog post, and every now and then I look at it and go, “Oh, man, that was not a good day.” However, I started journaling, and at some point, toward the end of my first year, I thought that this should be a good book.
I ended up pulling together a year's worth of journal entries and my first book, Metamorphosis: Surviving Brain Injury was released in 2012. Once that hit out there, it was kind of an accelerant to a path that when I look back on it today, I feel like I'm looking back at somebody else's life.
That book went out there and today it's one of the top rant books about living with a brain injury from a survivor on Amazon. It still sells copies regularly, and folks leave reviews, and the voice of the reviews is always something along the lines of, “thank you for doing this because I realize I'm not alone. This has helped me to better understand our journey and it's just so heartwarming.”
And so that went out there. I don’t know if you're familiar with an organization called brainline.org?
Tina: I am
David: So Brainline is the division of PBS under the WETA moniker and I submitted a piece for them for publication consideration. I heard back from the editor a day or two later, and they published my first piece in 2013. Just this month, they published my 100th article.
It's just been an absolute joy to be part of that community. It's kind of full circle because when I was first injured. Brainline was one of the first online organizations that we went to that actually had meaningful information. We went there looking for something that would help us and then, to turn around and become part of that community, and have just been amazing.
Then, I try never to be… there's really nothing braggadocious about any of it, I get hit by a car, I almost die. But my life's mission literally is to share the experiences that I have had and to be a vehicle for others to share their experiences to help lift humanity higher. The invitations to start speaking at Brain Injury Association conferences started, and I keynoted all the way from St. John's, New Brunswick, to brain injury Canada, all the way to Seattle, Washington, and stops in between. I kind of giggle when I think about it because it's almost like a Forrest Gump kind of story. I've got some of my best friends today or within the brain injury community. One of my closest friends, the Brain Injury Association of New Hampshire, whom I originally reached out for help, subsequently became a board member and sat through two terms. I'm actually on an off-term right now. However, one of my closest friends these days is a fellow board member and I'm now 11 years in and he's 20 years in and the same thing happened to me that happened to him a few years after his injury, he kind of did the conference circuit. Then the torch was passed to somebody else. Even though I'm grateful for that experience, I'm watching the next generation of survivors that are out there sharing and quietly and not so quietly, cheering them on.
Back in 2015, my wife and I started a digital publication at the time we call it TBI hope and inspiration. It was a digital magazine that’s now morphed into brain injury hope magazine. It is a quarterly publication. It's available, it always will be available as a free digital download, and had a number of people that had asked for it in print, so we use Amazon as a print partner. One of the pieces that have been wonderful with that is the writers that contribute have found that they're able to use their experience to help others as well. With that seeing a rising tide lifts all ships. That's been another wonderful part of the journey.
To kind of fast forward to life today, back in November I hit 11 years. During my first year after my injury, I read a TBI Guide by Dr. David Burns. It’s another free resource that is out there and my wife and I are very committed to making sure that all resources we put out there are free for public consumption. He said that in the TBI guide he never has he seen a brain injury survivor recover back to 100%. Some have gotten close, in many respects, 88% of who I used to be. I still tire easily, I like conversations like this in the morning, because in the afternoon my processing speed slows down, sometimes quite abruptly. I still live with PTSD, and I’ve been in therapy on and off for a number of years. I muddle through that as soon as I can. But the life I thought was over has been rebuilt and is very much worth a while these days. I derive joy and personal satisfaction from being able to help others to realize that they're not alone and that you can develop a different yet meaningful life after brain injury. A lot of parts of my life are better than they would’ve been had it not been for the injury. I got a level of compassion for the struggles of others that I never would’ve had because I lived it. I developed friendships with people who shared my fate. And when you have that common ground of soul-level immense pain and struggle and you’re connected with another human being that had a similar experience, those are friendships that are bound by chains. Life for the most part has been reasonably good these days. I’ve slowed down, I honor my limitations.
So that’s welcome to my life in 25 minutes!
Tina: Wow, what an amazing story. I’m really happy for you, and everything that you’ve done for this community.
David: And I’m sure you’ve seen others too. I fondly call a lot of folks in the brain injury community the nicest people that you never knew existed!
Resources that David mentioned:
Facebook: www.facebook.com/TBIHopeandInspiration
Brainline.org: View my Brainline Blog
Blog: www.DavidsNewLife.com
TBI Guide: http://www.tbiguide.com/
Interviewed and transcribed by Tianzhi Yang