I want my brain back

[lance]

I've gone my entire life, which is fifty plus years with a brain like a stroke victims. It is called a nonverbal learning disorder where the right hemisphere of the brain is missing white matter. White matter is the connective tissue that is home to the neurons that complete signals that allow us to think and act. And I don't have a normal amount on the right side of my brain. Now I know why school has been hell, especially in math and anything that uses math. Decades of underemployment, hearing "you know, we thought you were smart, but you just don't apply yourself" in every variation of that iteration of trying as hard as I could and failing. My ex-wife, a pHd chemist tried to tutor me in algebra and chemistry when I was in college and I failed both classes. She said I just wasn't trying hard enough. Yet I was. So in middle age with no job, no degree, no savings, no IRA 401K, no car in my name, no house. Probably the most intelligent thing I did was not to father any kids.

Now I have to go into therapy, the same therapy as someone who has had a stroke or a brain injury in an accident. Wow. I've always thought abnormal was normal. As if celiac disease wasn't enough. And a couple of other chronic diseases. What a gyp. An upside down life suddenly flipped right side up, and I am not handling it well. Right now I'd welcome a stage 4 mass somewhere. At my age, I just don't know how things will turn out.

[Cheldoll]

Hey Lance,

I can relate to your comment about wishing for a stage 4 mass -- it frustrates me that if your conditions were caused by some external accident, everyone would be sympathetic and supportive, you'd have disability rights, and you'd have something else to blame besides yourself for what you're going through.

But the truth of the matter is it is not your fault. None of it is. I wish I could just hug you. Life has dealt you a pretty shitty hand.

[lance]

Thanks. It's just weird to hear a doctor say "you have a brain like a stroke victims. How you managed to get by for long is remarkable!" Gee thanks.
And thank you for the empathy. I appreciate it.

[Jenny Jump]

i'm with chel. love to you. and that doctor sounds like a douche. seriously, i can smell the vinegar.

[lance]

Thank you. I find it ironic that people like me and many others that post here have potential to be wonderful patient advocates for many health issues, yet the fact that we do have health issues, at least in my case anyway, keep us from being able to work towards a such a position. Instead, we get health care workers who have no or few issues who just cannot relate to what a chronic illness of any kind is like to live with. I wish there were a way to change that.

[ghughes1980]

This topic hits me right in the brain, I feel for ya! I too have brain damage and math and reading are difficult. On top of that people telling me to apply myself more is the most frustrating comment anyone can make. I AM! It took me 4 tries to get my high school math etc, and if it was not for spell check I would probably sound like a 4th grader on internet message boards like this one. It hurts my soul when people say things like: "I thought you where smarter than this", "what's wrong with you", "are you retarded?" (got that one a lot, the word should be shunned just like the N word is). I don't wish my brain back as it where but I wish I had a different one let's put it that way. I relate 100% to the stage 4 cancer thing I have fantasized multiple times a day that the cause of my damage would have just taken me, that fantasy is stronger than ANY sexual or emotional dream or thought. The resentment towards the spiritual/religious deity (God/Allah/Yahweh who ever it is, or even the idea that there is a "reason" to be) is like bile filling my eyeballs. Which really screws with my ability to live a centered life. (I'm not saying you have to have a religion! Flame me for that and you missed the point of this rant.)

[lance]

I told my wife that for years I felt like some invisible force was holding me back. I too blamed god because I was trying as hard as I possibly could to do well in math and other things. One of my deepest depressive episodes was having to take a fifth grade level math test to get a job working on the ramp for an airline. I flunked fifth grade math and got sent home without the job. At the time, the only thing I could relate it to was some invisible force fucking with me. Now that I know what it is, no manner of prayer, barganing, wishful thinking, or wiccan candle burning spell stuff can replace missing brain. I fought my own shadow for fifty damn years thinking it was something real. I know exactly how you feel. I learned the hard way that the only person on this earth I can truly rely on is myself. Not god, not my wife, not my family, just me. God doesn't exist, my wife could die or leave me, my parents were and are useless. I think that is a dark outlook on things, but that's what life has taught me. But there is comfort in knowing others have gone through the same thing. Thanks for writing.

[ghughes1980]

A damaged brain feels sort of like a goopy fog at the tip of a thought you know what you want but it keeps being swallowed by this sticky amorphous substance before you can grasp it. It's right there but fighting this goop stings your mind. It makes you fight constantly and to be honest some days I don't want to fight it I want the blob to just swallow me and then it might stop. To be close to a kind of death but even be robbed of that is stressful. Yelling in my head: "Make up your fucking mind! Are you going to be all broken RIGHT NOW? Otherwise could you give me a break please and act at least semi-predictable so I can have a minute or two that isn't confusing!" As I said earlier I don't really want a fixed brain I want a new one. That's not possible so hell, why don't we agree (the brain and I) to hang the gloves up and stop fighting because this hurts all the time and I hate it.