I was doing a jigsaw puzzle this weekend and it triggered a memory.  When I was about 20, I did a jigsaw puzzle with my mom and when we finished I got really depressed and introspective.  I was like “well now what?”  I thought it was a wonderful metaphor for life.  We completed the puzzle and this thing that I had been working on and obsessed with for weeks – there was no more left to do.  It was done, my goal had been accomplished.  I had nothing left to work for.  Little did I know that in 10 years something was going to happen to me that would give me a goal to work towards for the rest of my life. And little did I know that my doctors would basically tell me I’m screwed and that the rest of my life is gonna suck. So, it’s certainly not an ideal goal, that’s for DAMN sure, but a goal nonetheless.




Categories: Health, Recovery, Stroke stuff

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26 replies

  1. I think what I hate most about this damned recovery is that I will never be able to relax again in my life. I won’t be able to put any part on autopilot and coast. Even sitting or sleeping can’t be put on autopilot.

    • What happens when you fall asleep?

      • When I wake up multiple times during the night, I have to make sure the damnable spastic arm is set in a comfortable position. This can be really entertaining for others when I do this while using a sleeping bag during camping.

    • I can’t speak for him, but I do think Zack would totally be able to connect with this. I also think that this is the exact reason that he can’t gain weight for anything. Everything that man does requires a copious amount of effort, attention, and focus. If he is sitting in a chair with sides, he can relax if he lets his vision focus go, and he can sleep very well. That wasn’t akways the case, that came a few months out. But, yep, any form of movement.

      • Brooke,
        Does he take Keppra by any chance? While I was taking it…I kept losing weight no matter how much I ate. I was getting way too skinny. It totally didn’t agree with me.

        • That’s interesting, Elizabeth. I can’t gain weight — I’m back to my highschool weight–and I’ve been wondering about the Keppra. Also, do you have more energy now that you’re off it?

          • Grace,
            For me, going off keppra was a huge step forward and finding a doctor willing to let me try was like finding a needle in a hay stack. I have many reasons to have seizures…but haven’t had any since my surgery. Thank god! I weaned off slowly under the guidance of my doctor and have improved dramatically. My weight is normal now and I have WAY more energy. The “brain fog” is almost entirely gone too! I feel more like me and its awesome!

        • He does not! He doesn’t take any meds! Totally med free! Thank heavens! He has been for at least 8 months.

  2. that is so true Dean, everything requires attention and planning, but that’s not the worst thing. Before the stroke, I lived an un-conscious life – easier certainly but also with drawbacks. Now my life is full of choices, but I am living much more consciously and gratefully…not a bad thing. Marta

    • Yeah, we all lived an unconscious life, sleepwalking. This certainly has a way of making you live a very, very conscious life!

    • Living more consciously is a great thing. I never thought of it as sleepwalking through life but , yes that certainly fits.
      What gets me now is how many people constantly multi-task. I used to, but not anymore. Now, it’s one thing at a time. I wish that we could make other people see the value in that, without a stroke. It does make life more enjoyable!
      Puzzles – I used to hate finishing them because all of the fun was over. Now, I love finishing a puzzle because it takes months and years to finish them. And then there is this stroke puzzle – not welcome- and we will be working on it forever.

      • Good point. I wish people would see the value of doing things one at a time, no multi-tasking.

        • But the brain can’t do multitasking, it’s physically impossible. What you think is multitasking is incredibly fast switching between tasks. And since nothing post-stroke can be done fast we lost our ability to fake multitask.

          • Yes! No more fake multitasking.
            As an example, when I drive now, I can’t have the radio on, no seat-dancing to music, no talking to passengers or answering the bluetooth, no grabbing anything out of my purse – focus is just on driving and keeping my hand and foot where they should be. I know that it always should have been, but there are a lot of other little things you do without thinking about it – my passengers get upset when I don’t want to talk, so I usually get driven when there is more than just me in the car. Maybe mulitasking isn’t the right word.
            I was sleepdriving before the stroke!

  3. Funny how doctors say, ” Every stroke is different…” because they don’t want to get our hopes up, yet they can say, “you’re screwed,” and, “you’ll never walk …” NOT funny, I mean.

    Dean, I can lie lengthwise on my back on my couch, with my dog stretched out on my belly, without paying attention to anything. He, on the other hand, has to keep himself from sliding off because, based on personal experience, he knows I won’t catch him.

  4. Amy

    Things will work out well for you.
    I know a stroke survivor about your age, she got married and she is going to have a baby soon. So life will turnaround for you too.

  5. I think we all end up with missing pieces at the end from life in general but yes, a stroke really has a unique way of scrambling the pieces and making it extremely difficult.
    I have also learned how to take things very slow and in many ways, I enjoy the little things much more now, I used to move very fast and I always had this feeling of being rushed through life. I had a high-stress job that I should have walked out of years ago. I regret that it took having a damn stroke to slow me down but now,as in the above posts, no more B.S. or “sleepwalking”. So I guess in a way, I am strangely grateful for the extreme wake up call, I had certainly ignored all of the earlier less drastic warning signs.
    I feel bad that your doctors would treat you like that and tell you that your life is “going to suck.” I hope that you are able to find someone who is a lot more compassionate and intelligent, no one needs that kind of bedside manner, talk about BS!
    Your blog is a good resource and a great way to connect with others who have suffered from this trauma that by it’s very nature tends to alienate the survivors from everyone else around them. I am glad that I found it, with your blog you appear to have already found one very worthy goal to work toward.

  6. I am totally gonna vent and this was literally the only place I felt like I could do it because you are the only people I know (kinda) who can connect. Sometimes I want to be the biggest BIOTCH on Facebook because I am so SICK of seeing statuses that read something like, “I’ve been through a lot, but I keep getting back up…” When, in reality, it is their ridiculous choices that have gotten them in the predicaments they have been in. I want to comment and say. NO. No you have not been through a lot… You have made stupid choices. Stop making stupid choices and you wouldn’t have to keep “getting back up again.” I think I am just bothered because some people act like they have had bad things happen to them and they haven’t at all, they did it to themselves. It’s annoying. Vent over. Thanks for listening.

    • Hear hear Brooke, hear hear!!!!!!!!

    • I hear you too Brooke,
      I used to have a Facebook account and I got rid of it after my husband stroke, everybody has perfect life’s besides us so I felt I couldn’t be part of it anymore. Is funny how some people think they have problems and as you say their problems are their bad choices, my husband never drink neither smoke and no health issues but he had a stroke, amazing.
      How come your husband is not taking any meds? My husband takes keppra and simvastatin we ask his neurologist if he could be out of them, but he told us no. His cholesterol is fine and he hasn’t had a seizure for over two years. But just incase is what he told us…….

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