Every single day of my life is a struggle both physically and emotionally. Every single f’ing day. And from conversations that I’ve had with stroke survivors that are years ahead of me in recovery, every single day of my life for the rest of my life is going to be a struggle. Maybe I felt like writing this because I’m having an exceptionally hard time right now emotionally, which was all triggered by a woman who very selfishly called me wanting to talk to me about one of the most painful and devastating experiences in my life. But the fact that I’m having a hard time right now certainly doesn’t change the fact that just being awake is hard.

And no one understands this, well except other stroke survivors. I look really good, I got back to doing a very technical, intricate job.  A job that hopefully someday I will be able to make a major impact on and change some things.  I seem to have totally overcome this to normals who don’t understand anything. I haven’t overcome anything, I’ve learned to live with it. I have no choice and never did have a choice. So I’ve learned to live with all the shit and try to use humor as a way to help me through this. If you’re a frequent reader of this blog, you probably have caught onto the fact that I use self deprecating humor quite a lot. But I certainly don’t want to. I’d rather not have to joke about all the stuff that is in actuality absolutely devastating to me like the fact that I can’t write, I spill EVERYTHING, I can’t cut my own food, I can’t run, I have horrible balance, I get dizzy just watching certain things on TV, I get HORRIBLE migraines once a month.  Etc, etc, etc.  Be careful if you try to make fun of these things about me just because I make jokes about them. Be careful.  2 or 3 people have free reign to joke about these things with me but most people do not. I suggest not trying to use humor with a person with a disability – about their disabilities that is – unless you’ve been given the go ahead, because the things you joke about or say are probably extremely devastating to that person.

Well, that’s it for now. I hope you’re having a better summer than I am.

Categories: Recovery, Stroke stuff

Tags: ,

11 replies

  1. It’s been a beautiful and fun summer here – I’m sorry you’re having a crappy one. Here’s some unsolicited advice: Whatever that armadillo (as Brooke would say) said to you, just be glad you are not that person, be glad you are helping people, not causing pain. Because you help me every time I read your posts (which is every time you post), I end up feeling lighter, less ignorant, more understood, and cared for. I try to stand on my toes every day because you mentioned that in your blog – and I’m getting much better at it. And I think of you every time I do. Please focus on the good that you do, not the little things you find hard. And of course you can cut your food; I can cut anything that’s properly cooked; my only trouble is with shellfish – getting out lobster meat, pulling the clam/mussel from its shell, and boulliabaisse would be a disaster.

  2. I have learned this year most people don’t think my humor is amusing, I will continue to use it anyway. I hope you can think your summer is the best one yet, there are still a few weeks of summer left. I know from experience, you have to think you are worth the things you wish to receive. You are worth so much more than you project to others, so please stop putting yourself down-even if only humorously.

  3. I think one of my biggest struggle with my problem is accepting it. I know that sounds easy but it is one of the hardest thing I have ever had to do. I know that I used to be this person that was full of life and had so much to look forward to. Now I am told the deficits that I have now will be for the rest of my life. I will always feel like this and I need to learn to deal with them. All I can remember is who I used to be and fighting to be that person again! I can’t imagine that I want to live like this for the rest of my life. Always anxious, always in fear of a re-occurrence, always feeling ‘Off’. It’s a very sad life to be honest to look forward to. I in no way want to contemplate death as an escape but I could sure understand those that give up. Like you said Any, no one knows the struggles that we face, I explain to people “have you ever been at work and you start to feel the flu come one? your body starts to get hot, you feel like your stomach is a little upset, you feel faint and not balanced’ well that is how I feel almost ever single day. Nothing feels clear, nothing feels right. I feel like I am bi polar going from one good high day to the next very low day and no one understands. I feel your struggle Amy, if you eve need someone to talk to please feel free to contact me.

  4. Amy, Amy, Amy,
    (sighing and reaching across the distance hugging you)
    Recognize this for what it is…your moment of sitting on the pity pot and frustrated. No one ever said life was going to be a piece of cake (especially not my triple chocolate fudge cake with homemade marshmallow frosting). Before you get mad at me understand it is said with love from someone walking in your shoes.
    You are not as useless as you seem. There is a higher value in you being you now than before. I guarantee that you take nothing for granted. You’ve fought too hard to (re)gain what you have as we all have. That’s more than I can say about a lot of people. You have more will to do, stuff to celebrate, and accomplishments to your credit.

    So what if you can’t do things. If everyone else was as open and honest about their own shortcomings, you’d find it not so lonely where you are. Everybody has difficulties and problems…some more major than the things you mentioned. All’s anyone can do is the best of their ability. If I’m doing the best I can do and you don’t accept that, you have no heart, or understanding. Phooey on them. It’s not your fault they are a rock.

    I usually preface my humor mechanism with an understanding that only I can say it about me. Unless you are one of my children or me, the damaged brain comments are taboo.

    I pee my pants, wear a diaper, get tongue tied, trip and fall over invisible pieces of lint on the floor which jumps up at me, have esophageal spasms that make me sound like I’m dying, am in chronic pain due to fibromyalgia and the spasticity, I can’t work, am ineligible for welfare or disability, husband just died yada, yada, yada too.

    I allow myself to be on the pity pot. I recognize the fact that I am no longer capable of doing certain things. Just the struggle of getting out of bed each morning is tiring, but I do it and so do you. Every day is a struggle to do, but I meet that challenge and so do you. You are are courageous, a hero in the eyes of many, you help others in spite of what you are going through. You are a champion, but even champions get tired and have to let of steam. Go ahead baby. Cry those tears. Get mad and beat up a pillow. Blow off that steam. Then get up. Go to the bathroom and wash your face. And face another day of frustrations. When you need to vent again…we’ll be here listening.

  5. I had a really sad day too. Zack had a rally sad day a few weeks ago. Life after a brain injury is tough. Constant reminders of what was lost and what will/may never be. It’s a hard reality to get up and face everyday. We get it. We are with you. I am sorry that you have to go through this, that anyone does. It’s not right at all. Love to you friend.

  6. All I can say is I hear you, I feel for you, I understand you, same here (well, minus the job). I ended up totally alone and struggle every day to not give up. I’ve made it to three years and one month post stroke. IRL-people brought me to where I just shut up about it all, because whenever I mentioned anything I got either the “oh please, you look just fine” reply or was accused of self-pity. When all I wanted was to talk, just talk. They have no idea, I can’t afford self-pity. The moment I let in self-pity, I will be dead, I know myself that much. Keep up the fight, Amy (and all other survivors here of course)!

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