(25 mins) In this episode, Hackie Reitman, MD. continues his conversation with David A. Grant, the founder and publisher of TBI HOPE Magazine. David is a brain injury survivor that has dedicated his life to being an advocate for those affected similarly. David discusses advice on living life after a brain injury, the impact a TBI can have on a family, and how his injury has changed his perspective on life. Click here for the first part of David’s interview.
For more about David and TBI HOPE, visit:www.tbihopeandinspiration.com
Or check out their Facebook community: facebook.com/tbihopeandinspiration
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HACKIE REITMAN, M.D. (HR): Hi, I’m Doctor Hackie Reitman. Welcome to another episode of Exploring Different Brains and now we’re going to have another visit with the expert in traumatic brain, David A. Grant, up there in New Hampshire, the founder of TBI Hope magazine and so many other things. Author, advocate, and leader and himself, a traumatic brain injury survivor. David, welcome to Different Brains.
DAVID A. GRANT (DG): Good day, Hackie. It’s nice to be here with you again.
HR: I like to play a little game here at Different Brains which is my cotangent is that first of all I like to look for tools that can really help. All the signs is great to help produce and learn things. But I’m into like simple tools we can use. That’s why I wrote the book, “Apsertools.” Which pertain to the practical guide to understanding Asperger’s, Autism, and Neurodiversity because by the time I finished the book I knew it was about all these different entities that somehow ended up in different silos. Traumatic brain was over here and Autism was over here and Alzheimer’s was over there and PTSD was up here and now wait a minute. A lot of these tools will help all of these different entities. So now lets hear from one of the world’s experts, internationally, in traumatic brain. You, David A. Grant, what are some of the tools that some of our audience here at Different Brains can use for their brain that you have found helpful for your brain?
DG: Yeah. One of the things that I bring to the brain injury community is an insider’s voice. I’m a layperson that has had an immense range of experiences. So we’ll leave the moniker of experts that have a lot of initials after their name but there are some things that have helped me immensely. It may actual transcend a lot of different neuro-conditions and worked out very well for the neurodiverse community. The first piece that was a game changer and it’s funny but it’s one that I advocate very highly for is the support group. I am a huge believer in peer-to-peer support. It’s hard for the first couple of months, I was totally alone in brain injury and it’s hard to say I’m unique when I am sitting in a room filled with 30 of my peers that have all experienced similar things. And within the peer-to-peer support group environment, you’re able to be in the association of those with similar challenges, although there is a say, “if you’ve seen one brain injury, you’ve seen one brain injury.” But there are some common threads to a lot of what we deal with. Memory loss, speech loss, loss of emotional filters. You know the first year I would say just about anything to anyone and that’s a story onto itself. So that association with peers has been just a game changer for me.
I walked into my first local brain injury support group in April of 2011. It was put on by the New Hampshire Brain Injury Association, I now co-facilitate that group and I’m fortunate that I’m a board member for the Brain Injury Association of New Hampshire. And I walked in there and thought… I actual didn’t know what I thought, I thought I was in the wrong room because the people there looked like me. I didn’t really have any expectations and one of the gentleman there said “if you’re looking for people who have trouble up here, then you’ve found the right place.” So piece number one is peer support. And it’s not just, “we can cry on each other’s shoulders.” In our regular group meetings, there are shared compensatory strategies, shared solutions, fellowship, companionship, the benefits abound. And the other piece that I realize is that not everybody watching will have access to a support group. Over the last couple of years and part of what’s driven our advocacy work is that larger underserved group of people who might live in east nowhere Idaho where the nearest support group may be 100 miles away. There are Internet resources that though not the same as being in a face to face group can be helpful. So support groups number one, the other piece is don’t believe everyone you’re told, and no disrespect to the medical community but there’s a lot of misinformation out there.
HR: Well they don’t get training by the way.
DG: Pardon me.
HR: They don’t get training shockingly. But it’s not their fault they don’t, and it has to be changed. But keep going.
DG: Things are changing though. The last four or five years, brain injury has kind of come out of the closet. And it’s part of the national narrative, and it’s not as alien a concept as it used to be. I was told by respected neuropsychologists that a little over a year out, basically that my life was over. I went to extensive neuropsych testing, I scored in the bottom five percent for verbal recall and complex problem solving, and he strongly suggested that I get a handicap placard for my car, he said you’re better off not trying anything new because you’ll be befuddled, confused, and disappointed, and then he said I can write-up the report totally, accurately, in a way that would allow you to collect social security. And my wife and I walked out of that meeting devastated. And we’re rule-breakers, but in a good way. So when he said “don’t try anything new,” we sat down a month or so later, took a one-year calendar and wrote one thing new a month that we had never done. And for that year, we went out to try a new experience. So the other pieces, just because you hear it doesn’t mean it’s true. Another one to add to the list is surround yourself as exclusively as you can with people who have your back and your best interest at heart.
HR: A synonym for that is people who are positive. Positive people. Not negative people. Positive.
DG: Yeah. Your thoughts define your actions. Your thoughts define your environment. So that’s another piece that’s helped quite a bit. And the other one that I’m really keen on is serving others. Think about, for a minute, what the world would look like–and I know your backstory, you discovered that your daughter had Asperger’s and now you serve that community, and a greater good. So you’ve taken something that’s crossed your path, and you said, “You know what? I’ve got some unique experience here that I can offer that would help others,” and you didn’t just think about it. You know, differentbrains.com and a lot of what you’ve done is you saying “I’ve got some solutions that I’m willing to share,” and as I look around the landscape of my life, the people who seemed to have more life stability, post-trauma, and post-TBI, are those that have adopted a life where they give back. And rest-assured, no matter what somebody’s current condition is, everybody has something to offer. And it’s like a friend of mine says, “I can’t be worrying about my stuff if I’m trying to help you with yours.” So finding a way to give back is–like the prayer of St. Francis, “It’s in giving that we receive.” And when you give back, all though you do it without expectations, blessings tend to come your way. The other piece is I initially hated time. Every day was painful. The first year, there were daily thoughts of suicide. I tried to find a way to make that fit in a way that my wife could collect my hefty life insurance premium. It was just torturous. And I would explain my frustration to TBI old timers, and folks would say, “You know, you gotta’ be easy on yourself. Time is your friend and it will get better.” And being an instant gratification guy, my question is “when?” And I take a look now, I’m now in year seven. And it got better. And I think a lot of-for anybody new to the TBI journey, what I would suggest is a lot of it’s just grunt work and busy work. when you stay busy during the first year or two, and it may sound like a pretty long time, but you’re allowing your brain to heal. And you can’t accelerate that process. So I’ve learned that time is my friend, and even today when I’m in the presence of folks that have been doing this a lot longer than I have, I’ll ask, “do you still see measurable gains?” And a hundred percent of the time, the answer is “yes.” And what I use that for, Hackie, is I look at the future and go, “I’m not that suicidal lost soul that I was in 2011. I’ve emerged with a new sense of purpose.” And if you kind of extrapolate that logically, in two, three, four, ten years from now, the David who is won’t be the David who is today. So how can you not have hope? You know?
HR: How has this affected your spirituality?
DG: Wow, you know over the years nobody has asked me that. I’ve come away from the experience with a very deep conviction. My background before my accident, I ran my own business. I was a marketing professional. I developed marketing assets, and marketing collateral for clients in the business base. I developed organizational brands, I worked on social strategies, very much a geek. And there are times that I’ve never really articulated this to anyone. There are times I feel like I may have been–and I don’t want to make it lofty, but I feel like I might have been chosen by whatever you call it. The power of the universe, God, a higher power, the spirit of the universe. Somewhere, somebody said, “He’s got a type of skillset that ultimately when he comes out the other side, can be used by that power to serve others.” So it’s done is a couple of things. I believe that I was supposed to take the hit that day. It’s been tough on everyone but I do believe I’m realizing my fate and living the life that I was destined to live. Many years ago, when I was kind of complaining to my wife, she said to me candidly, “We weren’t serving any–” We’re honorable people. You know, good morals, good values, raising kids. But she said, “We weren’t serving anyone before your accidents.” So that blessing has come out of all this. And the other thing oddly enough is that it’s taken away my fear of death. The day that I was on Main Street, I’m laying there and my body is broken. I can barely move, I just regained consciousness. And I looked down to my feet, and there was a passerby that had their hand–I can’t even tell you the gender, whether it was a man or a women–over their mouth with tears streaming down their face. And I thought, “Oh, shit, I may die today.” This may be it. And I did a mental inventory and I said, “Okay, the last words to my wife were “I love you.” My kids were mostly grown and taken care of. And I had an odd sense of, “if this is my time, like it’s okay.” Like I’ve lived a good life. Never even having, how would I know what was to come to pass because of this? And I no longer fear death.
DG: It’s almost like I’ve stared death in the eye, there’s never victory because the same fate awaits us all. But I’ve looked at my won mortality and reflected on my own life. And even at that point I was happy with the life that I lived. Today, I’m over-the-moon happy with the life that we’ve been blessed to live.
HR: Has your relationship with your whole family improved, been the same, or what? And what advice would you give? It sounds like you have an amazing wife, Sarah, but what advice could you give these families out there?
DG: Personality changes are very common within those that experience brain injury. I’m quicker to hug but I’m quicker to tell you how I really think about things because of some of the frontal lobe damage and the loss of the emotional filter. And in my own realm, you unknowingly hit on one of the most bittersweet parts of the journey. I started writing my first book in 2011, though I didn’t know I was writing a book. I started journaling as things were happening and at one point, I went, “Well this could be a book.” “Metamorphosis: Surviving Brain Injury” was released in 2012. I held off for three or four months in letting my folks read it. One of the chapters in my book was titled, “I lied.” And in it, I talk in very candid detail about lying to those close to me because I did not want them to be burden to the pain I was carrying on the inside. My mom later said, “I read a couple of pages, I cry for a couple of days. I read a couple of pages, I cried for a few more days.” My dad read it all in one sitting, it’s an easy read. And my mom said he got really quiet for about a week. And my mom and dad and I are closer than we have ever been. They have accepted their new son. I’m not the same person that they raised, but they love me unconditionally.
Things were hard for my wife and I for a couple of years. She has openly said, “He is not the same man I married.” We had eighteen years of history as a monogamous couple before my accident. And she has openly and publicly said if we did not have that type of foundation, our marriage would not have survived the injury. She’s moved forward in the career service as somebody helping caregivers. So she’s found her way to give back. She founded and facilitates one of the world’s largest online caregiver support groups. So we’re kind of together as partners in all of this. Where it gets hard is where I go down stream.
My four sons–and it’s very common within the TBI community for folks to think that whoever is the survivor maybe either embellishing or faking some of the challenges. I wrote a piece about it a few years ago called “Are You a TBI Fake?” And a few years ago, vicious rumors started that I was faking my challenges because I wanted attention. And it’s kind of tragic because it happened early on when I was least able to self-advocate and say, “Look, these are the things that are going on.” And the net on that is at one point, all four of my sons walked out on my life, and decided to drink the Kool-Aid, and agree that dad was faking his brain injury stuff. Hackie, and this happened in conjunction with that abysmal first year. Loss of career, loss of self, loss of self-worth, children leaving, and again it was pouring down like black rain. My youngest son, who I’ve always been closer to at one point actually said to me, “Dad, why don’t you just admit it and we could all move on?” And I don’t lie. Lying is not right. And he ended up moving back at one point from his mom’s house back into our home as a teenager. And once he lived with me for about a month, and he would hear me ask him the same question, and then ask him again, and ask him again, or a lot of the other challenges or he’d hear my speech challenges, he and are now closer than we have ever been. My oldest son, I haven’t had a word with since 2011. Now you see him, now you don’t. He barked out of a family cookout and never looked back. And he’s made the decision to fade to black in my life. I cried a couple years worth of rivers of tears. And the outreach became a little less and less. From calling a few times a week to once a week to once a month to texting. You know, let’s just talk. He got married a couple years ago, the internet showed me his wedding pictures. So there’s been no reconciliation there. Where there’s life, there’s hope. So I hold out hope. My second son did the same thing. He jumped very briefly back into my life for a cameo. Other than a few weeks, he’s been gone for over five years. And again, we talked about it earlier and a couple of times. What are you going to focus on? It’s tragic. And frankly, it sucks. And there isn’t a day that goes by where I don’t think about “how are you guys doing, how are your lives, how are you doing professionally, I’d love to meet your wife,” things that you can’t candy-coat or put a positive spin on it. The best that I can do is coexist with it.
My third son was gone for a while. And my wife and I a little over a year ago were going out to North Dakota. And I was in an airport. And I saw a call from my son. And I thought, “Oh my goodness. He’s calling me!” And like, how can you not be excited? I thought maybe the end is over. And I picked it up and I lost him. So I texted him. And I’m like, “You might have butt dialed me. hope things are good.” And he fired back an immediate reply, “You and I need to talk.” Now this is just like–remember the old OJ Simpson commercials when he’s running through the airport, jumping over the barriers to get on a plane? They were now boarding group B, so we had to get on the plane. We had a layover in Minneapolis so I said, “I’ll get back to you when we’re in Minneapolis.” And we only had a couple of minutes in between flights. And as we were boarding I called him.
HR: What happened?
DG: He said, “Dad, we need to talk.” And I said first thing, “Are you okay?” “Yes, I’m okay. I want to share some news with you. My daughter was born last month. I’m now a dad. And you’re now a grandfather. And we need reconciliation.”
DG: We got on the plane. And a day I’ll never forget. I forget a lot but i won’t forget that day. And I joke about it when I speak periodically when they say please put your phones to airplane mode. I’m gonna ask for forgiveness in advance from anybody who may be watching this in the FAA Family. I ignored it. And for the next six or seven minutes, as we taxi, he’s firing me picture after picture after picture of our brand new granddaughter. And we get back after a couple of days, met him the following week. To fast forward to today, Amelia is in our home very Tuesday, we proud of her immediate circle of care. I’ve gone from being David to being grandpa. And again, what are you going to focus on? Am I going to focus on the fact that I’m going to be forever challenged, or that a meaningful life is possible? Am I going to focus on the fact that the relationships of my son may or may not come back, or do I focus on the fact that I’ve go this amazing human life that I will be the only grandpa she knows. She’ll never say, “Remember when we had old grandpa? And new grandpa? Like I’m it!” So to add some closure to that, it’s complicated. Most relationships are more meaningful than they’ve ever been.
There’s an amazing resource out there that I’ll point out to anybody in the brain injury community. It’s called the TBI Guide by a doctor named Dr. Glenn Johnson. And it is the definitive guide for life after brain injury. My wife and I were fortunate in that we found this reasonably soon after my injury. And it was the first piece of literature where he openly said I have never seen an individual come back to 100% after a brain injury to which we replied, “Well we’ll get as close as we can.” But he talks about dynamics, and he said, “Most brain injury survivors lose 80% of their friends in the first year.” Which was our case. People that we’re close to socially new that I was different and human nature is what it is. When things are different, you back away from that of which you don’t understand. But the book goes on to say, “Don’t worry, because the void that was left with those that have left your life will soon become filled with others.” And I look at people who are apart of my inner circle now. And they are the most cherished relationships I’ve ever had. They’re more meaningful, they’re not superficial. And if I sense superficiality, I mentioned in one of my points earlier about surround people with those that have your best interest in heart. If it’s superficial, life is fast. It goes back quickly. And I choose to spend time with those that I cherish. Complicated, not an easy answer, or complicated stuff. But it’s common. I’m not unique in this.
HR: I’ll tell you, its a great answer and it’s a great positive thought complex that has a lot of moving parts. How can our audience who are probably as enthralled as I’ve been listening to this and watching all this–and by the way, we make it accessible as an audio cast, a video cast, a video cast with captions, a transcript, however your brain takes it in we’ll get it to you. But how can people learn more about you.
DG: The easiest way, Hackie, is to just go to tbihopeandinspiration.com. From there, we’ve got links to our social community, to our YouTube channel, twitter, to my blog. I blog regularly about day-to-day life with a brain injury. So we’ll keep it simple. TBIhopeandinspiration.com” And I’ve got to do it, one last plug for the magazine. You can sign up right at the main page. And my wife and I are committed to making sure that this ad infant item remains a free resource for folks. We’ll always keep the digital version available for free. And it’s not a watered down version. The same content as the print version is in the digital version. So it’s not a case of “get the free version that’s not as content rich.”
DG: And the print version is available on amazon.com. And if you just use TBI HOPE Magazine, you’ll find the current and archived issues.
HR: Well David A. Grant, it’s been a pleasure visiting you yet again here for another episode of Exploring Different Brains. Keep being the champion you are of all of those who have a traumatic brain injury, and those of us whose brains are a little bit different in other ways too. Thanks a lot, David!
DG: Thank you, Hackie, it’s nice to be with you yet again. We’re becoming hard and fast friends.