BrainLine talks with Jason and Susannah Ferguson about Jason's traumatic brain injury which he suffered in a car accident. The couple discusses how the injury has affected family life, their marriage, and outlook on life.
BrainLine Talks with Jason and Susannah Ferguson About Family and TBI
We'd been dating 6 months when Jason's TBI happened, and then now it's been 5 1/2 years that we've been together. We got married a year and a half after the accident, and I'll let you tell about how it occurred. >> Oh, how we've been, okay. >> No. (laughs) >> I was a sound engineer, though, before the accident, and I went to one of the places that I had an account to do sound for. I'd been either wake boarding or down at the beach, doing a concert or something. >> Not how we met. >> Oh, I'm sorry. >> How the accident happened. >> Oh, the accident happened. That day I went out, being sneaky--I thought-- went and had a class and everything on diamonds and looking at engagement rings and everything because I couldn't afford the "Tiffany's" of diamonds and stuff. And she's always giving me, "Only Tiffany's will do." (laughs) So I went out looking and-- >> That was always a joke. >> And then I was supposed to go look at Christmas trees, which wouldn't have mattered anyhow because little did we know I wouldn't have been around to see it--I mean--awake. That night I went to one of the establishments where I was working or had the account to work at, and I was there until quite late--I think in the early morning hours until about 4:30, 5:00, with the managers and some cops, and they were still there. Well, and I don't remember any of that, but supposedly, looking at the truck and what happened, as I was going down the highway-- because we were opposite of where I was living--at a high rate of speed. They estimate between 90 and 110 miles an hour. I clipped some barrels on the feeder road on the on ramp, between the feeder road and the highway. Well, it clipped the--I was in a three-quarter ton large truck, and it clipped it and it went up like this, and I came out the side window. The truck ended up way over here--excuse me--and I ended up hitting the stop sign about--they estimate about 200 feet down the road. No one stopped or anything like that. I wasn't wearing my seat belt at the time, something I usually always did. I usually didn't drink hard liquor and all of that stuff, but everything came together, so that was what happened. That was one of the hardest parts about the recovery of everything. I mean--like hey, I messed up. I had this accident. I did this to myself. Thank God that I didn't kill anybody else or hurt anybody else like that, but the truck was--basically the cab was flattened out, and half of the front end was missing. >> And then-- >> He was in a coma? >> Yeah, and what is heartbreaking is that the morning of his accident I'd gotten a page like at 4:30, 5:00 in the morning, and I didn't recognize the number, and so I didn't call it back. I went to work as a regular day and then somewhere around--I don't know-- 9:00 or 10:00 in the morning, I got a call transferred into where I was at in the hospital, and it was his sister telling me that he had been in this horrible accident. I went over, rushed to the hospital. Everything was told to me what had happened, and I looked at the page that I had received that early in the morning, and it was the emergency room at that hospital because they had found my number. And so they were trying to page me to be the contact person of him, and I hadn't returned the call. Then he was in a coma from December 17th through the beginning of January. He had opened his eyes for the first time on New Years Day. >> On New Years Eve, though, that's when I kind of peaked my eyes open at you, though. >> Um-hmm. >> And one of the things I'd like to say is that the only thing I remember from the whole coma and everything is I saw the golden city, which I interpret to be heaven, and I can still remember that like it happened 5 minutes ago, and the story, even through the post-traumatic amnesia when I thought that I was a race car driver or I was a movie star with these people, that has never ever faltered or changed. I can still remember, and I was standing in front of a calm, flowing river, and it wasn't real wide, but there was high heavy grass on each side, and to my left-hand side, there is a small-arch bridge. Across the way was a wall that went as far as you could see for both ways. And behind that wall was the golden city. Behind me was dark woods. But the next thing I knew appeared the 4 horsemen coming riding out of an opening in the wall. And I mainly remember the first one because the horse's belly was about-- it seemed like it was about that big. I had to look up to it, and I just remember that first one because he turned around and pointed for me to go in. I was walking--I was just started. It was beautiful and light wind. It was beautiful, so I started crossing the bridge. Well, I got about halfway across the bridge, and I hear Suzanna in the background come running, and she's running saying, "No, you're trying to go. You can't go." We were in the middle of the bridge, and she embraced me and then I go and we walk back across the bridge, and I didn't die. >> Do you remember waking up? Just briefly maybe tell me the scenario of how long you were in the hospital. You mentioned you were in a wheelchair, and you were told you wouldn't walk again. If you can just tell us briefly about that period before and when you got home. Then we'll talk about the relationship section. Yeah, I went to the rehab hospital after I was in the-- after I opened my eyes, I was still in the coma because when you open your eyes, it isn't, "Oh, he's out of the coma." I was probably still in there for another week or 2--or that's how long I stayed at the hospital. >> Yeah, you were at the--he was at the trauma center for about a month, and then from there, he went to the rehab hospital, and he was there for about 2 weeks, 2 1/2 weeks. When they discharged him from the rehab hospital, he was still using the wheelchair. He was able to walk, but he didn't have strength. The main thing that I remember about his activity in the wheelchair is that he had such a hard time. He had no strength in his upper body whatsoever or no trunk strength, so he's in the wheelchair, but he's falling forward because he can't hold himself up. That was a huge thing with walking was that he didn't have any strength. He had lost approximately 75 pounds from the time of admission to the time of discharge home, so within a month and a half, he lost all of that weight. >> How about talking and cognitive memory? Tell me the scenario with that. >> Very, very slurred--as far as his speech--his speech was very slow. Purposeful, but very, very slow. He was still in what they call post-traumatic amnesia. He couldn't remember from 10 minutes ago, and it was sort of our inside joke kind of thing. He couldn't remember what he had for lunch today, but he could tell me what he had yesterday. Then the next day, he couldn't remember what he had today, but he could then remember what he had the day before, which he couldn't remember. That was one of the things. At that point, they said that he would need 24-hour supervision forever. >> We got married approximately a year and a half after my accident, which is very uncommon as well because most people just leave anyway. They don't want to take that vow, "Well I want to be married to you, but I don't want to marry the injury. The thing that helps us the most--and sometimes we still have trouble-- but that's with every couple. That's life. It's communication. We communicate. She lets me talk to her about something that may embarrass me for a day or really get me down. It may not be much of anything, but it's really got me down. I can't figure it out. She's lets me know that it's okay to still have these feelings and have these thoughts and everything like that, and I'm able to express myself. Then I told her when we got married, I said, "Yeah, we've been through the hard part. Everything else is gravy," but that's some lumpy gravy. You know--it will be forever, but it's so worth it. >> I think, as far as our relationship, it's commitment--commitment to one another, and not just saying that you're committed, but really, truly, in your gut, being committed, no matter what. That is what keeps us together. We're not sane. (laughs) We walk. We walk. >> Yeah, some of the strategy that helps us to make it through everything is the walking. Now only does it help with the exercise to lose the weight because, Lord knows I need to. It helps to just see everything, get the fresh air, clear things out. She's--for her to escape from me, (laughs) she goes take a long, hot shower-- >> I go to work. >> --and she goes to work, and takes a hot--you know--when she gets home, takes a bubble bath. For me, I play dominos. It's on the computer. I got to go play some dominos, and that helps wind me down. I don't know what it is, but that helps wind me down, and then I write. >> One of the other things that I want to say is that if we didn't have faith in God, and we didn't have our religious beliefs, then we would never have made it. And that that has been a huge thing that has kept us not only together, but kept us going for the long haul. Right after his accident, one of the things that I used to feel and say was "This can' t be it. This just can't be it." "God didn't bring us together for this to just be all that there is. There's got to be more." And that became our little slogan is that there's more for us to do, more for him to do. That God didn't save him--I mean--he didn't recover from this, or he didn't live through this injury to go back and doing live music and working in bars. God has more for him to do, more for us to do-- and here he is! (laughs) >> When I said my previous life doesn't matter now, it really-- that was the old Jason, as I like to say it, as many people with TBI do say. That was the old life because I don't really associate with the crowd of people that I did--you know--the fast-- I worked in the music industry, so people weren't there just to be my friend. They were like, "Oh, we didn't come to just see Jason." They wanted to get in and see the show. They wanted to do stuff like that--the drinking, the drugs--sex, drugs, and rock and roll, everything you hear about it. All that stuff you hear about happening on the road, it does. I don't want to be a part of that now. One band said, "When you get better, you're going to come work for us." I said, "No, I'm not." I said, "God didn't keep me here to work in bars every night." She actually--Dr. Sonnen--started out--she was my new psychologist. Then after a year I started out being on the advisory committee, just giving my feedback for the projects and everything because one thing I've learned through working this is whenever a doctor or somebody, just a layman, tells us or whatever, "Oh, I know how you feel. I know what you mean." Well, no, you don't. You tell somebody like myself or anyone else who has it, anyone talking to me, somebody goes, and they had a traumatic brain injury, they know better--I mean--they know how it happened. One of the projects that we worked on the most was the social reintegration project, where peers with brain injury help other peers with brain injuries reintegrate back into society because that's the hardest part of the whole injury. Okay, you lived. You made it back here. You can talk. Now what? You going to sit inside all of the time? No. You get out and be a part of society. That's living. >> With him working there at the brain injury research center, it has really given--to me, my opinion is that it's really given brain injury survivors a voice. Jason is their voice in the research community, in the medical community, to speak out and say, "No, you don't really know." "I do know because I have lived it." And so he offers invaluable advice and recommendations of how better to treat survivors. I take care of our son, Belsy. I am able to write from home some and cover the speaking engagements, with my beautiful wife, but it is something that one, the doctors and pretty much everybody cut out ever-- what I've seen is that people with traumatic brain injury are kind of shunned to the side. People don't think that we can take care of ourselves, much less take care of another life and successfully to raise a child or to have children or be loved. I see so many men that I've met at various camps or whichever or they go in the homes or get put in the homes because their family doesn't know how to put up with "dumb," as they say. >> Yes and no. My family and friends did not understand my decision to be committed to Jason and to go ahead and marry Jason. They thought that I deserved more than to be a caretaker of someone with a traumatic brain injury, but whenever I made my decision and my decision was final, they stood beside me. So they were supportive after they understood that this was the decision, and this was the commitment. Since that decision, no one has second-guessed my judgment and Jason's judgment for Jason to be the primary caregiver while I'm at work. In fact, everyone has applauded his abilities because he does such a wonderful job. And in my opinion, it's such an honor. Not many men get to be that active in their children's life, and I think it's such an honor that Jason is going to be able to mold our child. >> So many times I hear, "Oh, so you're Mr. Mom?" "No, I'm just a a dad." >> Mr. Dad. >> It's great. >> The day that he was born, that was wild. I mean--he's only 5 months. He's 5 months today. >> Today is his fifth month. Whenever--the greatest--there are two--the first was our wedding. Whenever we got married, when I saw her walking, when they opened the doors and I never seen nothing, the wedding dress, or anything. They opened the door and everything that happened for the past year and a half went running through my head, and the emotion, where I hadn't been able to cry before, came out, and I was just bawling. She was so beautiful and just all of the wonderful memories, and the hard part, the hard times and the wonderful were all just going through my head. I was so thankful to be there. Then the most recent one, 5 months ago, was being there with my wife and being there in the room watching our son being born, and being a part of everything and still being able to be a part of everything. >> How about you, Suzanne? >> Oh, it was the same base. To me, it's just so awesome, but it's an everyday thing too. I mean--when I come home from work, and to see how happy the baby is and to see how happy dad is, and where most men-- and I know I'm generalizing--but most men can't handle the stress of baby, and Jason is just calm and cool the whole time and it was exactly the right thing to do and say. It is very comforting. I mean--like with every marriage, there are frustrations, and so I don't know if there is a day or time that I wouldn't want to repeat, only because each thing I've learned from. >> We're still learning, yeah. You know, a lot of people, the first answer would say, "I wouldn't want to repeat the day that his accident happened," and go back and take that away, but in our situation, his accident has made us better people. I wouldn't trade things from happening the way they did at all. I'm glad--and it's sort of odd to say that I'm glad that his accident happened, but it has made us better people for it. >> I'm so thankful for all of the experiences. I've been able to me able to do, be able to experience, to be able to express how I feel about then and to-- nobody likes to hurt or go through bad times in life, but I'm getting the experience of it. I'm getting to do it. You know--look at each other, love each other. I always tell the caregiver to listen, just listen. That's the best part. Suzanne did that for me, and she would say little things--I mean--just some little things to others, but were so big that they just give me a boost of self esteem and let me know that hey, I am somebody that's worthy of love. I shouldn't be--you know--case in point--when people would disregard me or not want to listen to me or they're actually being mean to me, she would be right there to, "No, no, no," and stand up and get bowed up and whip them for me. >> What would you tell a couple? I would tell a couple, if they want their relationship to survive, that they have to make it the most important thing in their life. right underneath God--that they have to make that most important, that the couples that we have been friends with-- most of the couples that we have been friends with that we've met through the brain injury circuit, the couples that have failed are ones that started having outside relationships that they put higher priority than the marriage or than their relationship with the survivor and the caregiver, that that is just key to destruction. (laughs) I mean--it really is. It's the downfall, and if you've got a friendship, whether it's a platonic friendship or not, if that becomes more important than spending time with your survivor or caregiver, or whichever the one has the outside relationship, then that is the downfall. One of the things that I would tell another couple or another survivor, is to make sure that you get lined up with healthcare professionals that really know about brain injury, not just know of a thing called brain injury, but really know about brain injury. That might mean that you're not seeing a regular primary care physician or might not mean you're seeing a regular internal medicine, that you might need to see someone who works in physical medicine rehabilitation, but make sure you're keyed up with someone that understands what's going on because so many times I think that the healthcare community gives the survivor and the caregiver poor advice of how to handle things, and then that can also lead to the destruction of situations. One of the ladies outside after the talk was asking me a question about fatigue, that she's having problems with her husband with fatigue. I told her, "You know--the best thing is just let him have his fatigue. Let him have his sleep, that he needs it." She said that she's been pushing him to stay awake, and her physician has been pushing him to stay awake. It's not as if you can just avoid the symptoms. The symptoms are there because of a reason. If we had found other families who have been through it to give us a heads-up of what to expect-- We didn't know anything. Suzie just went, "Okay, this is what we do." >> From the time of his release from the rehab hospital, he was not with any kind of physical therapy, any kind of rehab period for another year-- a little over a year, and so we were sort of doing it on our own, just sort of, "Okay, this might work." He had problems with fine motor skills. He couldn't pinch things, so I bought him a Lite-Brite, here--you know--start doing-- >> I got to make pretty pictures for her. I felt-- >> It made him feel happy to know that he was making a pretty picture for me. Instead of me being the adult, "Oh, that's childish." I let myself be the child and get excited over little pretty Lite-Brite pictures. It made him feel like he was doing something nice for me. >> Something--you know. >> It's the littlest things, but just to keep trying is the biggest piece of advice that I would say to anyone that has ever had a brain injury, is that-- >> And keep on living. >> life is not over. Just you're still an important person in society. Just because you've got a brain injury doesn't change that. The Lite-Brite was one that we did. We talked about it in the talk--the squeeze ball--those little gel stress balls. >> Could you explain that, as if we hadn't heard that? >> The stress ball we would use, of course, to build up strength in the hands, but then also as an anxiety reliever. Whenever he would get in large crowds, he would become very anxious, having to deal with other people, talk to other people, he would become very anxious. Some of his outbursts of emotion were avoided because he was able to squeeze the stress ball and calm himself down. Then one of the biggest things that is important is for us to get to know each other well enough, to where I can give him cues that aren't embarrassing, to give him non-verbal cues of, okay, you need to go on, because so many times, he'll get into a conversation with people and just go off in left field about who knows what. They're not paying attention. They're wanting to leave. He's not realizing what the situation is. >> --reading body language. >> --and so-- >> Do you have a symbol? >> We gesture. >> Oh, she cuts some eyes. >> I cut my eyes. (laughs) >> I'm just joking about that, but she does make sense of things. Just subtle little things. I might just put my hand on his back, and that gives him the key of okay, I need wrap it up. Then other things like so many times people just make comments and they have good intentions, but he would take things to heart. He would run into someone, "Okay, I'll give you a call tomorrow," or "I'll give you a call sometime," or in a couple of days. That was always it--"I'll give you a call in a couple of days." >> I'd be waiting there right by the phone. >> He would wait right by the phone, anticipating their phone call, but the phone call would never come, and so it's heartbreaking for me to see that happening. Instead of letting it go, we would sit and talk, hours on end, about this is life. These are what people say, but it isn't really what they mean, and it's not any slide against you. It's just--you know--talk. >> As far as one of the greatest things that helped me the most was-- well, the squeeze ball and the Lite-Brite, but also writing because I still write to this day. I wrote that poem just for today, and I love it. People are like,"Oh, you wrote that?" It's something that I look back at because I've written well over 300 different poems now, I say, "Oh, I wrote that?" That's just-- >> I mean--a poem about everything. He'd write a poem whenever he was having to ride the bus, sitting at the bus stop writing a poem about the people that he encountered. And-- >> The Social Security office. >> Yeah. (laughs) >> People cheating the system--you know. >> But it helped to work on not only him and-- (baby sneezed) >> Bless you. >> --his writing skills, but also to help his thought process of trying to work through what is really going on and then getting it out because that was a huge problem in that he wasn't able to articulate what he wanted or what he was thinking, and so therefore because he couldn't articulate, people would assume he isn't thinking anything. I think that's a very common misconception is that people think-- outsiders think that a survivor of a brain injury don't really have anything going on, when, in fact, they do. They just can't get it out. It goes through stages or spurts, it seems like. I know the thing is running, but it's just like at the time you just get embarrassed. Case in point, the other night we were a restaurant, and I started stuttering and I got embarrassed, and the waiter didn't do anything. He didn't say anything, but I started getting a little bit teary-eyed and all because I get embarrassed and then Suzy took-- we walked over to the-- >> We were with some friends, and I said, "Okay, come on. Let's go to the bathroom." And we get up and walk to the bathroom, and we have a little one-on-one pow-pow away from everyone to say-- >> She's not beating me up or anything, but she's just telling me-- >> Saying it's okay--it's okay. You're doing great. >> For the most part, things have gotten a lot easier, especially these--one thing that Suzy told me that I think that really helped me in my whole recovery and dealing with other people is that you can't control other people. You can only control yourself. Whenever I realized that, it took such a weight off of my shoulders because I can only control my--okay, I have to be the better person or have to be the person that says, "Okay, I do what I say I'm going to do," and not worry about them because I can't control them. That's what I mean. >> And you can't control their reaction to how things are. Then the other big thing--I know we talked about it earlier-- was with emotions. That even if it might be trivial, that that might be the way he feels, so like the waiter example, if he gets upset because he can't speak correctly to the waiter, well, I could blow it off and say, "It's just the waiter. Who cares?" but he cares. Jason cares that he can't speak understandably to the waiter. And so that's why it's important. It doesn't matter that--the waiter is trivial, but Jason's feeling of worth, of whether or not he can communicate effectively, is important, and so that's why we focus and we'll talk about whatever situation it is to make sure that he realizes that it's okay.
Posted on BrainLine December 1, 2008.
Produced by Victoria Tilney McDonough and Brian King at the 2008 Williamsburg Brain Injury Services Conference.