Accept or Fight

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When another doctor tells you that what you want is not possible and you need to accept that and set more realistic goals for yourself, do you do it or do you keep fighting for what you want?

I have seen a team of neurologists and neuropsychologists now.  They are all singing a similar tune. That I am different. That I have to accept that I cannot return to the previous version of me that I recall before the brain injuries. (I’m not sure if I have discussed the extent of my brain injuries here, I haven’t wanted to talk much about it and writing was so difficult before. But I have some serious cognitive dysfunction, memory gaps, processing delays, visual lags and disturbances, sensory overload….it goes on.) That skills like creativity, and certain personality changes, once altered, do not heal and come back, at least not identical to what they once were. I may be able to enhance what I have, but I will never be who I used to be.

I may never be able to do what I used to do.

Every time I think of this as a fleeting thought, the tears return.

Another esteemed doctor told me this again yesterday. They are well educated, at a great hospital, known for their expertise, and my gut trusts them. However, there is also something in me that is screaming they are wrong. Doctors once told me I may never walk again, that my weakened leg would never regain muscle tone. Well look who is out there attempting to jog. So I don’t accept “never” as a final diagnosis. I feel like I’m still in here, just slowed down.

He recommended I either apply for disability or try to work with a vocational counselor, but he doesn’t think I can keep up with the pace and demands of a job. That was harsh, but possibly true. I may be overestimating my stamina at this point because I want to be better.

He said that I am still traumatized, understandably, and that for me, the trauma never stopped. 40 years of trauma. He said that would be enough to break anyone. But add all my medical issues and it was like adding gasoline to a fire. And then on top of that, a stressful marital relationship, he says it was a cascade of events and none of them were good for brain health.

We talked about my social support network, and I said I’m all alone, completely. I have a few online friends and my counselor. We talked about how I isolate myself and why. I told him about how I have low tolerance for people, no matter how much I try, I can’t enjoy being with them, or think they aren’t good people when they make fun of others, are greedy, I catch them lying or cheating, etc. I said I try to turn down my moral standards but I can’t. He said something I never heard before. He said of course you can’t. You have never felt safe in your life. As soon as someone says or does something that makes them have any possibility of being a bad person, you go into self protection mode and either stop talking, leave the room, or hide or whichever other skills you have learned to avoid conflict and being noticed. This is to keep yourself safe. It makes perfect sense and is your core belief stronger than all others. Safety comes first.

My jaw dropped, and I felt angry a bit, kind of embarrassed, and I wanted to say he was wrong, to fight that, but as it sunk in, and so many social interactions spanning 40 years flashed across my mind. Holy crap. He is right.

Here I was thinking I was over my trauma and it didn’t matter any more. That I was an introvert and yeah maybe I was wired differently, or maybe on the aspberger spectrum, or maybe just get annoyed with small talk and petty people. But no. Every social decision ever has come down to safety.

He said the right trauma based psychologist may be able to assist me with that component and he would help me to locate one near me to work with. He said I can’t live the rest of my life alone, or I will continue to deterioriate.

I don’t know. I feel like I’ve tried. I feel like the people that accepted me never accepted the real me and when I do reveal the real me people run for the hills, unable to handle me. So maybe someone can help me find this tightrope skill of balance of how to build a relationship that I feel safe in, connected to the other person in a real way, without overwhelming the other person with my intensity.

I think figuring that out will help me in any job I may come to have in the future, whether I go through the disabled workers board or get one on my own.

I do know that I want to be a part of the world and connected to people, to good genuine people, and I just don’t know how.

I do know I’m not ready to give up and get on disability and never work again. I think I still have something to offer. I’m still smart in some ways, just really slow, and get tired out quickly. I’m hopeful the new migraine meds will start helping with some of that too. I’m hopeful that my family is done adding trauma to my life and I can finally move ahead on my own. My parents are gone, my brothers aren’t speaking to me. The hole hurts, but an empty hole is a dull ache, not like the tortuous pain of constant flaming daggers tossed at you.

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3 thoughts on “Accept or Fight

  1. I think that in some ways I have no idea what you’re facing, but in others, yes, I do. I do the “honesty” thing too and beat myself up for every immoral, devious piece of myself too. What your doctor said makes sense for me too, although my situation wasn’t as extreme as yours.

    That said? I had no idea I could change as much as I have. I had no idea I could ever be not bitter, hyperalert, cynical, etc. So, take what the doc said about work, etc. as perhaps the worst case and do what you can. You can only do what you can.

    Changing physiology may not be possible, but what you can possibly change is the attitudes, etc., at least somewhat. Instead of trying to go back, find the next, the very next, step in the direction you want to go, and try and do that.

    I have what I call the “Secret to the Universe: Try one more time than you fail or give up.” which I came up with after decades of doing it without language to help me see what I was doing.

    It has been harder to deal with my own less than wonderful parts after I did much of my work. It was awful. That and the shame were the toughest pieces for me to tackle. (I didn’t think I had any shame. I knew I’d been victimized; why shame? Until I stripped away all the other defenses and something kept holding me back — shame.) Granting myself grace was new, I’d always beat myself up for not being perfect enough.

    My wish for you: strength, resilance, grace, and humor!
    Teacup

  2. Making friends and learning to be safe are different skills. You’ve come this far, so I think you have it in you to find a new healthy. Keep fighting for you!

  3. It is important to accept where you are right now but it doesn’t mean you have to stay there. I’m a beat the odds kind of person. I don’t believe we should go backwards from a life changing experience. The reason they are called life changing experiences is because they change your life. It’s OK. The new you is amazing. I was told over 20 years ago that I could never hold down a job. I’ve worked all those years. I was laid off and found a new direction to go that was less demanding, but less pay. We could afford less pay. I am now facing new challenges with a brain tumor and another growth on my thyroid….I’m in the habit of fighting for me what ever me looks like. I also use Lumosity to help with brain training. It costs but I noticed a profound difference. I started karate 4 years ago and I’m astounded by my progress and leaning to handle myself. I don’t know what will work for you. I know that I beat the odds and I like Walt Disney’s quote, “It is kind of fun to do the impossible.” I am learning to strive forward without beating myself when I can’t get off the couch. Determination, persistence, and not giving up on yourself play a much bigger role than most doctors realize. Hugs. Bummer on the brain and family trauma. I wished we lived closer together I think we would enjoy having lunch and talking.

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