Today I have an important guest blogger, my husband Bill. He has a story to tell that is important. In fact, it is one of the things that has been swept under the rug at our house for years, as we have been in survival mode. It is where so much of our lives together have been formed. In this current season of unraveling and looking back to go forward, we have started to dissect some things from the past. We have decided not to suffer in silence any longer. I cannot tell you how proud I am of this man, and how much love I have for him. He is amazing and I thought it appropriate to share this first part of his perspective of how brain injury affects him, on our 31st anniversary. This is taken from conversations we have had together while hiking, or sitting over coffee, or driving in the car. It is the tip of the iceberg. We are thinking of compiling our experiences for a book, at some point in the future. It is kind of random and raw at this point while we are processing. He shares and I write it down for him so he can concentrate on expressing his experiences. I can tell you this, marriage with a TBI has been a hard road, still is, but I have a heart bond with this man. Most couples do not survive TBI, we understand why, but we also are deeply committed to be one of the couples who does. If I had known 31 years ago on our wedding day, what was in store in a year’s time, I still would have married this man I love. Happy Anniversary!
My Hidden Permanent Disability
as told by Bill Gunnin
How do you overcome a disability you cannot see? I wonder how many of my perceived character flaws are really a symptom of my TBI? It’s been so long ago, but they say TBI is forever. What if my character is not flawed as I think it is, but my TBI has redefined my life? It is like a living nightmare to be unable to do things, but to have no idea why I cannot do them. An invisible force prevents me, and it is as if I am boxing an unseen enemy who I cannot identify, and I cannot defeat. It has the advantage over me because not only is it hidden to others, who only see outward appearances, it is imperceptible to me, from inside myself.
There is a long list of symptoms and I have many of them, but I don’t always know. I have to have someone else tell me. There used to be more, but these are the ones I still have trouble with sometimes: Impulse control, memory, ability to attend, focus, brain hyperarousal, agitation, irritability, egocentrism, denial, selective obsession, depression, lack of motivation, social immaturity, social dependency, inability to make decisions, logorrhea (excessive talking), panic, anxiety, frustration, mental fatigue, impatience, being hypercritical, hopelessness, decrease of social interactions, disinhibition (loss of filter), intolerance, inflexibility, setting priorities, word retrieval, and decision making.
It’s embarrassing. People think I am one way because they cannot see the injury. I want to be the person they think I am, instead of who I actually am. I am embarrassed of myself, within myself. When I talk about my deficits and a possible job, I think ‘who would want to hire someone who has all these deficits.’ I don’t want to talk about it. I know I can do the job, at least I think I can, so why talk about possible limitations? But I may not be able to do what I think I can do. I don’t know if I can or not, so should I say something and risk not getting the job at all? It’s discouraging and depressing. I have trouble making decisions. I can’t direct myself to what needs to be done now and what needs to be done later, because of that sometimes I can’t do anything.
I’ve been told of deficits and I’ve read about them. I am more aware of the ones that affect me, after they happen than when they are happening, any recognition I have about myself is all in retrospect. Just now, I realized something, but then I went to get paper to write it down and forgot it. I want to just be me, but I feel I am not acceptable as I am.
Impulse control. Delayed gratification. I cannot delay wanting something. If I want a milkshake, I go get it. In the early days after the accident, this happened in outbursts of anger or other feelings. I could not control my temper, or my tears. I felt things and they just came out. You don’t realize how much your brain helps you to be socially acceptable with your feelings by allowing you to hold them in or let them out appropriately. It is not as much controlling emotions now for me, only when I am tired or overwhelmed, but I can hold them back better. For me, it is more external things for comfort that I cannot seem to stop. I guess it is what some people would call will power. I lack that in some areas. For example, impulse control in conversation…I can’t hold back my thoughts, so I interrupt constantly, and even go in different directions in the conversation. I don’t know it though, not at the time. It requires review after the fact for me to see it. It frustrates my family, or people I am talking to for me to do it, but because I don’t say everything that comes into my head (believe it or not) I think I am doing well. I don’t always see the frustration on someone’s face or pick up on social cues, so I just keep talking. My kids will tell me, or my wife will nudge me under the table, but I don’t see it myself really. So I think I have more control than I do. Like right now, the music that is playing is bothering me while we are talking. I don’t want to hear a song where I recognize the melody, because it pulls my attention away from trying to talk about this with you. I just jumped off topic because of my external environment and my inability to filter it out. If I am in a loud place, like a crowded restaurant it is overwhelming to me. I will stop talking because I cannot keep up with all the stuff going on in there and carry on a conversation too. It also tires me out, so when I leave there I need to go rest so my brain can calm down again.
Memories are a tricky thing. I don’t trust that I am remembering it correctly. When I try to analyze things I can’t, especially under stress. I get agitated when I have to deal with external stressors. A lot of regret about not handling things well…after the fact. Or not being able to remember things that I know I should know.
Symptoms are sporadic and sometimes I can do things…other times I cannot. I hate these problems. They have no solutions. It’s not clear cut…like needing hearing aids, or my knee is hurt, so I cannot walk. Those are direct and easy to understand at least. For me, sometimes I know the issues, and sometimes I can’t see them. So much of it depends on external circumstances that are beyond my control, and it prevents me from showing what I can do. For example, I had a job interview recently. I was in the lobby filling out some short answer type questions where I had to write. There was a baby in the room and there was some confusion as to who was keeping the baby between the two adults there, so one of them could leave. I couldn’t concentrate on what I was writing because of the distraction, but also because I was worried about the baby and the situation even long after they had solved the issue. It’s like it got stuck in my brain. They came and got me for my interview but my questions were not finished, which made me feel like I did something wrong. Employers don’t have any idea what it means to me to say, you can finish it later. I went from the lobby, and my unfinished questions with my feelings of being inadequate, directly into a room with a panel of people asking me about how I would handle made up scenarios. I thought the interview went great, but now looking back at it I can see I totally messed it up and my answers were not good because I could not think clearly. I talked too much, because I do that when I am stressed. When I interview they probably think I can’t handle stress. They think about how those little things, like a baby in a room while writing affects them, not me. I can handle a job, but I never get the chance to show it.
This transfers to other areas, it is easy for me to be critical of other people, but impossible for me to understand what pain they have from their own experiences. People who are discriminated against for color, or religion, no one truly knows what they have been through in their lives. I have the same type issue with my hidden disability…no one knows. It’s invisible. Saying you understand is different than my gut level experiences with rejection.
I have compassion for people who are having trouble, like the elderly, or disabled people. My limitations have taught me patience and given me empathy. I like for the elderly to feel their own autonomy in the small things, like which trash bags they want or other things when they are shopping. I could just pick some things, but I want them to feel they have some control over their lives still. Sometimes they are like children with an intellect. I understand how that feels. I can guide while still letting people feel they are in control. I want to be someone who comes from where they are. No assumptions on my part, instead I want to show empathy. If they are angry and cranky, they don’t have evil intent, they are just frustrated. Cranky old people are misunderstood, the problem is they are losing themselves and it makes them unhappy. I get that. I say let them be who they are. Interesting people. I want someone to let me be who I am, too. Nothing I can do can change what older people think or feel, and just because they are old, people nod and smile and understand them, give them patience. I want people to give me that same kind of understanding.