That First Year

It takes a while after something like this to realize that the existing medical community knows nothing about recovering from a brain injury and you are completely on your own if you want to get better. Me, Dean, Barb, etc… We all know that we have to do our own research on recovering because we’ve all been at this for 3+ years. Well, in a few weeks I’ll be at 3 years post stroke. But the majority of you I think wound up on this blog because you or a loved one recently had a stroke and you’re within that first year or two. Now if you had a little itty bitty baby stroke or a TIA this is not directed at you. If you had a major event like I did and like most people here did and your entire life is completely turned upside down, this is for you. That first year – there’s going to be loads of support. Then it goes away because people go on with their own lives. That’s why a few years later you’re really gonna know who your friends are. That first year – you’re going to be scouring the internet for something that will make it all better. It doesn’t exist. That first year – you’re going to have a ton of doctor appointments and you’re going to think they’ll tell you something helpful and useful. Most likely, they will not. Basically, that first year is absolute hell. Do whatever you can to get through that first year, it gets better.

Categories: Brain stuff, Health, Recovery, Rehab, Stroke stuff

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46 replies

  1. I agree. It DOES get better. Even though I had to let go of the dream that I’d eventually hear of something outside myself that would actually get my AWOL muscles to work, which was a horrifying realization, I have been able to persist in believing I’ll get those muscles back my own way even if it takes my whole life, which is the time I have.

    That’s a seriously pathetic run-on sentence, but it’s hard for me to edit here.

  2. This should be required to be given to all survivors. Almost everyone who contacts me is looking for that magic bullet that will bring back function. Doctors should be required to burst that bubble immediately.

    • Dean, I was one of those asking for the magic formula. I absolutely didn’t want to hear you didn’t have one, even though that’s what you told me. I thought you were just being a pain, until I found out that’s who you are.

  3. Happy stroke anniversary Amy. I know you hate it but because of this I got to meet you. You may consider that an evil consequence but deal with it.

    • There are a few very very good consequences that came of this. Dare I say there were good consequences? Meeting you is one.

      • Get a room you two. Don’t mind me, I’m just an etcetera. Guess that’s how people with little strokes get treated. I feel inadequate.

        • Jim, lol! yes, judging by standard criteria – going home w/o an AFO, being able to swim laps, and successfully returning to your job – I think yours qualifies as a “itty bitty baby” stroke, as Amy so ably identified it. and that’s a GOOD thing.

        • Jim are you 3 years post? I thought you were less than 3.

        • well Jim, I’m by most tribe standards…probably in the tiny…itty bitty group too based on what I can do, but the actual measurements of how much dead brain I have are not exactly small. Dean’s MRI probably shows the most damage ive seen….much more than mine, but even a small amount of damage in the right spot can result in a worse outcome. There are so many factors….size is just one of many. And yes the first year is really hard. I started to be OK after 2 years. The first year was more focused on the physical stuff. year 2 and beyond I started the emotional work. and the third year is just now unfolding….looking forward to seeing what progress comes…so far having a baby and surviving 2 months with no sleep. I think I’m regressing actually. :0

          • aww..I am losing my mind. I’m in year four now….where did the time go? 12/10/10….the day my life changed forever.

          • Hi Elizabeth. I was lucky in that my stroke was both relatively small, and in an area that evidently wasn’t engaged in any meaningful activity. I can’t imagine having a baby. Giving birth after a stroke? You deserve some digression. And on behalf of all men everywhere, I appreciate the “size doesn’t matter” sentiment.

          • Well, as far as MRI’s go…Z hasn’t had one in months but when his swelling finally subsided he had a NORMAL MRI…yes. The findings were “no abnormalities”. uh-huh. Yeah. He can’t walk. He has a hard time speaking. Is far from himself emotionally and though he is still very smart, he has a much more difficult time learning and absorbing information, can’t hold a conversation most of the time and what he can do is far from his normal…The doc herself said that since his damage was cellular they probably wouldn’t see much on MRI…she said down the road he may have “atrophy” or “falling out”. So..MRI my butt. Take one look at zack and you’d know he was jacked the F up. After a year…I could list off the things that are still messed up. But, I won’t because I’m not looking for a pity party. My point is…MRI my ass.

            • Long before the stroke, I had the attitude of MRI, my ass.

            • I’m not sure but I think MRIs only work and show damage on the cerebral layer that is only a couple of millimeters think, the outer layer of the brain, commonly called gray matter, I don’t think it can show damage to the white matter, all the interconnections between different areas of the brain. I think its possible to have a massive stroke and have no evidence of it on a MRI. I bet your neurologist doesn’t have the brains to think thru that possibility. Don’t make me vent on doctors, I’m not nice.

  4. It has only been three months and we already know who we can count on and who we can’t. His family is only making excuses and my family who is an hour away from us is bending over backward to try to help in any way imaginable. He is so disappointed in them and his mother is blaming me for their short comings. It breaks my heart and makes me angry to watch it happen but they just don’t get it. We need support and help, not barking orders and telling him and me that we are doing things wrong and he should be doing more with his time instead of “relaxing”. His mother is also a retired nurse and she never even offered to come and stay with him while I go to work. She is 5 minutes from our house!

    We are getting discharged home tomorrow and already have a ton of appointments, two of which (oncology and brain surgeon) I know are going to be useless and a waist of time and money. I am trying to find any way possible to keep him motivated. The big thing he keeps saying is that therapy is BORING! I have to find a way to spice it up for him. Any ideas??

    Sorry didn’t mean to vent so much. I am truly frustrated and angry at the entire situation (not my husband though).

    • Vent away Jan. Vent away. We all understand quite well anger and frustration at a situation you have little power over.

    • I can totally relate, Jan. My husband is approaching a year from the anniversary of when he got sick. Neither of our families have been perfect, but my husband’s parents have been (in my opinion) pretty damn selfish at times. Example, “Oh! I’m sorry, I can’t take you to your eye doctor appt. in two weeks becasue that is the night of my book study!” What I wanted to say was…”guess what…he hasn’t gone to a book study in a year and neither have I…in fact, neither of us have had time to ourselves in a year!” (that’s a lie…I went on one trip with a girlfriend for two days.) I agree, I feel sorry for my husband. He doesn’t completely see it, though. He never did…even before the injury. He loves his parents to the point that he covers their flaws. My husband is a good man.

      • Brooke, as you know, people do what they can. The really pro-active people with the can-do attitude we know are the ones who showed up, helped without being asked, fed us, and gave Tom a break. I have more of them in my family and friend-circle than Tom has in his (and my family is bigger too). I have four siblings and every one spent a week with me after I was released from rehab and couldn’t be trusted at home alone. Tom has 2 sibs; his mother stayed a week, but it was all about what she wanted to do, not what I asked. (In fact, she mocked me once when I was looking at a Victoria Secret’s catalog to find a bra I might possibly be able to put on. “Looking for something sexy?” she asked.) No, his family has not been supportive of me at all; but I think they just don’t have it in them. Only ONCE has Tom acknowledged that they have not been supportive, and that was only after a particularly egregious interaction. The irony is that I’m the one in my family and he’s the one in his that the rest depend on to do the right thing. Left on their own, my family comes through and his doesn’t. Except for my father: he has expressed no concern that I had a stroke.

      • Ken at least realizes that his family is not there for us. He told his mother exactly what he thought and she told him that who ever was giving him his information is lying (me of course). I told her and he did, that he has heard and seen everything that has happened and not. He isn’t stupid. Then she said in so many words said that the family feels that I am turning Ken against them… Yup, she said that. And still his family thinks that we should bow down and kiss their feet for “all that they have done for us”.

  5. Jan, you need to hand this Letter From Your Brain to everyone.
    Hang in there, this Stroke Tribe can support you.

  6. Jan, it’s amazing how many people have come to me with unsolicited advice. They seem shocked when I kindly tell them I just don’t listen to unsolicited advice; the shock, I think, comes from the fact they believe they are trying to “help,” and I’m just not open-minded enough to listen.

    My unsolicited advice to you is to keep trusting your instincts and make sure you BOTH read and re-read Peter Levine’s book “Stronger After Stroke.”

    And, if you think your comment is venting, you don’t know venting. Stick around.

  7. Dean – That letter made me cry and I am going to frame it and hang it in our house.

    Barb – No advice that I get from here is unsolicited. I welcome any words of wisdom anyone is willing to bestow on me.

    I am reading “Stronger after Stroke” right now. Unfortunately by the time I have anytime to “relax” I am so tired I fall asleep very quickly. Thank you all from the bottom of my heart for helping me and listening to me. It means so much that I can talk to people who know what we are going through and voice it. There has been no one to talk to through out this time so far that understands and that has been hard. I am so glad I found you Amy and company!!! ❤

  8. Everything I have to say has already been said, but no one has said this: I found that ignorance IS bliss. I was so dumb that first year (my brain wasn’t healed, so ok) that the second year, when it was healed, and I realized my balance really sucked and it’s not coming back soon regardless of how hard I worked on it. That was a real wake-up call. Very upsetting. For weeks, months I was upset. Ignorance truly is bliss. Now I’m just mad and embarrassed, but I don’t really kid myself. And yes, finding this group and others where ppl actually UNDERSTAND where I’m coming from is very helpful.

    • Ignorance IS bliss. Oh yeah. Sometimes I wish I was stupid so I wouldn’t know how f’d I am.

      • Most of my ignorance was because of denial. I refused to believe that I couldn’t return to the job I loved because I wasn’t capable enough. I kept insisting I COULD do it even though my OT and physiatrist told me to take 6-9 months off. Instead, I was my regular stubborn self and started working while I was still in the rehab hospital (where I was for 4 weeks post-stroke). what was I thinking? And instead of letting me know I was doing an inadequate job, my boss was just mean to me. F that!

    • Couldn’t agree more. Ignorance is bliss. I am thankful for the ignorance that I lived in for the first six- nine months. I am sure I will look back and be able to see another layer of ignorance that I had been living in these last months. Because I am who I am, I like to think of it as grace. It has been the grace of God that allowed me to be shielded for a time. If I had fully understood what was happening, while it was happening, I don’t think anyone could have gotten me off the floor. I would have been a complete disaster mess.

  9. I am at 19 months now and just about ready to give up. It does get better, but for some of us that will never be good enough. This online community, this tribe is very special – thank you to all of you, even those of you who I regularly butt heads with. You are the most courageous people I have ever known.

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