It took me a good 6 or 7 months to realize that “holy shit, my life as I knew it is OVER.”  Not my life, but life as I knew it.  My yoga teacher asked me the other day how I reacted when I woke up and my dad told me I had a stroke.  I was just like “oh, ok yeah I know.”  I didn’t know shit.  I remember being in the hospital thinking of patients of mine and stuff that I had to do at work and I thought “well I’ll need a few months off.”  Ummmm.  Yeah no.  After like 7 months it dawned on me that this is my life now.  Not to say that I wasn’t absolutely unbelievably miserable those first 6 months, BELIEVE me, I was.  But I wasn’t dealing with reality.  First of all, everyone around me was babying me.  Also, some people weren’t up front and honest with me.  It took a while for reality to set in.  I had to find my own way back to life and so do you.  Well, the sick person in your life does.  I’ve said on this blog before that the absolute most loving thing that a caregiver can do is do a ton of research and arm yourself with as much information as possible.  But you can’t do it for her/him.  😦  I know you want to, but all you can do as a caregiver is provide some options that you think will help and present all the information that you have.  But the decision to actually use that information and do those things, up to the sick one.  They have to find their own way back to life and for me that involved A LOT of anger and A LOT of depression and A LOT of crying and A LOT of mood swings and A LOT of hating the world and everyone in it.  But I feel better now.

Categories: Brain stuff, Health, Recovery, Stroke stuff

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24 replies

  1. I’m really glad that you feel better now. First of all because you are a good and kind person and you deserve to feel better, but also because it gives me hope that someday I might feel better too.

    • You will. Believe me I know what you’re feeling like right now. For a long time I just wanted to be dead. Now I don’t feel like that and I’m even optimistic about my future. Sometimes.

      • You really do understand. When other people tell me I’ll feel better eventually I don’t believe them but I do believe you because you have been to the dark place and come back.

        • Yes, it’s hard for me to listen to people who know nothing about stroke tell me that it’ll all get better. I’ll listen to stroke survivors only. when I was in labor for my firstborn, by 10AM, Tom kept telling me the baby would be out by noon. every time he said it, I yelled at him -that he didn’t know what he was talking about, and he should just shut up.; there were lots of swear words involved. BUT, when my doctor arrived at 11, the first thing she said was, “Your baby will be out by noon.”

          You can imagine how insufferable he is now.

  2. It seems like Zack is starting to come to understand what has happened as well…it’s been real gradual but just in the last week, he has become more aware. It has made him want to quit and give up. But he’s pushing through and I am proud of him. He is about 6.5 months into recovery. Onward ho…

  3. I remember thinking that in 6 months I would be back in a whitewater canoe and in 12 months would be able to go on a whitewater canoe trip in Canada. No one talked to me about anything, it was as if you don’t tell the patient anything they won’t fall apart. Someone should have said you old life very likely won’t be returned too. I’m not sure when I figured out I was screwed.

    • Yeah most people that have a stroke have to find a completely brand new purpose to their life.

    • Being an MD I knew I was screwed right away so I told the neurologist that I didn’t want any treatment. Just let me die I told them. Their response was to threaten me with a psych admission. My plan was to die and donate my organs which would have been a worthy end. Or just get better on my own. But no one respected my wishes and my husband was bullied into consenting to neurosurgery that I might not have needed and that almost certainly has resulted in a recovery that is less than it might have been if I had just been left alone because the surgeon infarcted my corona radiata (an important white matter structure) which had been undamaged by the stroke itself. My neurologist confirmed this when I asked him about it. The surgeon (Dr. Philip Stieg, Chief of Neurosurgery at Weill Cornell in New York City) even had the nerve to tell my husband that the surgery had gone smoothly with no problems. Did he think that I would never read my own chart or look at the post-op MRI report that said “NEW corona radiata infarct” or the pathology report that stated that the specimen contained a NORMAL blood vessel that had been removed along with the clot? Dr. Stieg was paid $52,000, yet my recovery was derailed, what was left of my life was ruined, and I was deprived of the opportunity to die the way I wanted to if indeed I was meant to die. I believe that my civil rights were violated repeatedly but getting involved with the legal system right now would take time, energy, and money I don’t have. I would rather pet my cats, play Words With Friends and write searchable comments on my friends’ blogs.

  4. I had mine in Dec 2011, and I have just realised I have to learn this is the way. I always thought I would fully recover, just a hell of a big bump in my road !!!

    • You still might fully recover, just won’t be nearly as fast as you thought at first.

    • Yes, I thought it was an f-ing bump and it would take 6-12 months to recover – because “they” said that’s when recovery happens. Oops, it’s 4 years later and I’m still working on that recalcitrant hand and gimpy leg. Getting better, though.

  5. I’m never giving up on full recovery. It does happen, not often, but it does.

    • Yeah I’m never giving up on full recovery either. But for now I would take full recovery of speech. Oh wait Dean told me not to complain about my speech anymore, sorry.

      • Amy, there is absolutely no reason to listen to me, I haven’t recovered and I’m awful on doing repetitions.

      • I’m not even sure what a “full recovery” is anymore. I’m different in so many ways both good and not so good. I don’t want to give up what I’ve learned and go back to my old ways, but I don’t want to be “limited” by my brain damage. I remain hopeful that I will get where I want to be, which is a completely different place than before all of this. Mostly, I don’t want to be so effing tired….I hate that the most and it interferes with my life the most!!!! Someday….:)

  6. Love reading your blog Amy, my story is it is a bit different to yours as I just say that I retired early !!!! Keep up the good work.

  7. Yep, I know that feeling. I thought a few months and everything would return and I’d get back to my own life. If determination and hard work was all that it took then I’d do it. I used to set goals for for my recovery in 3 month intervals. It took me a year to stop that.
    I’ve been in some pretty dark places but always kept my flashlight. After almost a year and a half, I still wander into the shadows. I’m just focusing on how to do with what I got until I regain more of what I lost.

    • Everyone thinks that. In a few months I’ll be back to “normal.” Sigh.

      • I never thought that I would be back to normal in a few months. Everyone kept telling me to be positive but it was pretty obvious to me just how screwed I was and I turned out to be right. Now they’re telling me I’ll never use my hand again. The mixed messaging can drive you crazy. If I’m negative, they’re positive. If I start feeling positive they tell me I’m delusional. I extended my thumb at the MCP yesterday. It still flexes at the IP but Peter says any movement is good movement so I’m going to go with for now.

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