Survivor Guilt

I miss the days when my blog was super active.  It had become a real supportive place on the internet for other people who have had a stroke.   NO ONE else will ever begin to understand what we went through.  You can explain things until you’re blue in the face and in tears, but insensitive comments and actions will continue to prevail and be made around you – by people who you thought and hoped would be totally safe to be around.  And you realize they’re not.

So, sometimes strangers on the internet are the best people to connect with.  That’s cool in a way but also makes me sad in a way.  I happen to think that social media is responsible for the impending downfall of humanity so that’s a big reason that I’ve not blogged a lot the last couple of years.  I didn’t want to provide a forum that brings up anger and narcissism in people.  I have a ton of anger myself that I’m trying hard to get rid of and I didn’t want to keep spreading it around like I used to do.

But, social is great for connecting people and I know how much this place used to help people. So, I’m torn.  I’ve received e-mails from strangers all over the world telling me how helpful this blog is.  And I’ve gotten a bunch of new followers and comments in the last few months – so, I guess I’ll try to post a blog more often because I know it helps people and it helps me, too.

Anyone else have a problem with survivor guilt?  It’s not really survivor guilt I guess but that’s the closest thing that I can compare it to.  I can walk pretty well now, I can speak pretty well now.  But I still can’t do SO much, there is still a ton of stuff that I can’t do and enjoy.  And I can’t let myself enjoy the progress that I’ve made because I always think about how so many other people can’t do those things and I don’t know how to reconcile being messed up but also feeling ok with the things that I can do now.  Plus, my dysfunctional family system keeps me depressed.  People now just think that I got very sick 7 years ago and I’m doing so well now.  I sure don’t feel like I’m doing very well.

Moving to Florida has not been the emotional panacea that I thought it would be and was hoping for so much.  It still might be in time, me and my husband have added quite a bit of stress to our life in the last year when the whole point of this move was to de-stress.  We sold a house, bought a house, and moved across the country.  Within months of moving, we experienced a category 5 hurricane that all the news people down here were freaking the F out about, and in turn freaking us out. The last year of our life has been insane.  Physically though, things are dramatically better.  My muscles, joints, everything feels better and is functioning better.  Hopefully the mental catches up with the physical.

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37 replies

  1. Amy, I’m in Fort Myers & get what it’s like having gone thru Irma, my first hurricane. As for survivor guilt, along with the times when I get so friggin frustrated with myself and how far I have to go, I also know that living well is the best revenge. I’m not talking about living well partying wise, I mean living well enjoying the simple things, trying to help other stroke survivors and enjoying the simple, but incredible things like the beauty of nature. I’m glad you’re thinking about blogging again!

    • This is a good place to enjoy the beauty of nature! The ‘enjoy’ part is what I’m having a problem with.

      • Possibly allow for just a little enjoyment here or there and see how it goes rather than feeling like you have to enjoy. You’ve been dealing with such a tremendous amount of stuff for so long, feeling joy just doesn’t feel right. There was a 3 year stretch of my life when I lost 5 family members, the last of which was my mom. It got to where I felt like all I could do was be in death mode, it took awhile to get out of that level of intensity.

  2. I do miss your blogging. I probably have survivor guilt also since that is preventing me from volunteering at a stroke hospital to counsel new survivors. I don’t want to give the false hope that they can progress as far, it would be way too dangerous for them.

    • Yeah, that wouldn’t be a good thing for me to do either. Sounds great though!

    • I volunteer at a stroke rehab hospital & am careful to let new survivors know that each stroke is different and that my challenges will be different from theres. I let them know how I felt when it first happened, how the new normal continues to change and that there are different levels of recovery, that recovery never happens fast enough, but what might seem like the smallest insignificant thing we’re now able to do that we couldn’t do in the beginning is cause for celebration and reason to keep going.

  3. Yes, one problem I have is when i’m Commenting on a page in FB and i’m Frustrated by something I cannot do, but a survivor who can’t walk responds. I can do SO much now, but am still annoyed by what I can’t do. It makes me feel like such a whiner.

    I’m sure you’ll de-stress there, given time. Every single change is stressful, so just stop making changes!

  4. Amy I am glad you are doing better. My husband asked me a couple of weeks ago if you had blogged recently. We miss you!!
    Take care,

  5. Hi Amy, boy have I missed you. I am glad that you are doing better and I completely understand where you are coming from. I am just 2 years post my first stroke and 1 year post my 2nd. They took turns, they each effected a different side of my body. The first was the worst and effected the right side, and although I am doing better ( and people love telling me how far I’ve come) I have a L~O~N~G way to go in my opinion.

    I can get around, but can I really walk-NO. I shuffle my feet like a 100 yr old geisha in a kimono when I’m only 58. Rolling over in bed at night, oh how I miss being able to do such a simple normal thing such as that. Now it is a 10 to 15 minute process of waking up, pushing my body up to a sitting position turning the direction I want to turn over, push my body up, hopefully land in the right place. Lay back down fix the sheet, the pillow and then try to go back to sleep. ( and pray I don’t have to go potty before morning)

    Those are just 2 things that a Stroke survivor (at least me) deals with on a daily basis that no one else really understands. Then you add the rest of the other stroke related issues, and every day stresses. Money, or lack there of. family. Having blogs like yours let me know that I am not alone, cuz believe me I sure do feel that way a lot. I live in Arizona with my husband and my young daughter who we brought down here to go to college. I have no friends or other family here. My computer, my TV, my doctors …that’s it. So knowing I;m not alone is a huge help. Thank you

    • Wow! Penny that made me tear up a little bit! Wow. That solidified my decision to start blogging again.

      People LOVE telling me how far I’ve come and that I’m such an inspiration. Nobody should aspire to be like me. I’m a really messed up ball of anger that doesn’t understand life anymore. But, you’re so right that it helps so much to know other people feel that way and kinda hate everyday life haha!

      • I look at myself and I know I have come a long way but the anger, the why me, the what do I do next, how do I go on, why do I go on….. all of that stuff that you can’t ask a “normal” person. They look at you funny and start with the ” look how far you’ve come” crap. And that is not what we need to hear sometimes We need to hear that some one understands, they really KNOW what we mean. They can cry with us. I hope you have some one who can help you de=stress or that there is a pillow big enough to hit hard enough to take out some of that stress on.

        I’ve always thought it would be a great business to start where people would pay to come in and throw plates, glasses, cups at walls to help get their stress and frustration out..

    • By the way, that description of your walking made me LOL. I’m going to start using that in my PT notes to describe someone’s gait.

      When you are able to somehow make someone cry and laugh in the same paragraph, that’s a special skill. Perhaps you should start blogging!!!

  6. I hear what you’re saying. I went through similar problems related to my post-stroke dystonia.

    My own journey required me to recognize that I shouldn’t feel bad because (compared to others) I was doing “so well”. I also have to recognize my limitations. It’s hard. Very hard. But having a blog can be therapeutic.

    Even if there are those who are mean and don’t understand, just know that many of us do. We’re here! 🙂

  7. Hi, Amy! I’ve missed your posts too!

    About “survivors gulit”, I know that feeling all too well. I am five years post cerebellar stroke as of last week. I was told at the time by neurologists and neurosurgeons that I’m lucky to be alive and it’s practically a “miracle” I can speak. Aside from a tremor in my left thumb and first two fingers when trying to pinch things, I have no other deficits. I wouldn’t even consider that a deficit since I’m not left-handed. I have days where I’m gleefully happy to be able to walk yet constantly feel guilty knowing I’m doing so well and others who’ve had strokes (the same or other types) are not.

    Irma was the second hurricane in what was at that point two years since I moved back to FL. I don’t remember any while living here during part of my elementary and part of my junior high school years. It’s definitely nerve racking but it’s not necessarily “common” for those to occur (in my experience anyway). People who have lived here all their lives may say differently.

    I’m glad you’re doing better and hope your stressors lessen so you can more enjoy FL!

  8. I’m so grateful for your blog, and even reading old posts helped me connect when I couldn’t even leave the house. I go to a monthly support group now, but you are absolutely right, it’s just not the same trying to explain it to others. The survivor guilt is real too. I’m well on my path to recovery (the new normal) and people I meet are shocked and surprised that I’m on disability and not working. I used to think like them too, but have a whole new level of empathy for the invisible disabilities. They also don’t see that a short social event (which I couldn’t even handle a few months ago) can completely wipe me out and how much I sleep as a result. There are some great images on the FB page I recently came across “TBI Life Coach”. A lot relate well to stroke and acquired brain injuries. Thanks for your blog, wishing you more bright and happy days.

    • An invisible disability just might be one of the most frustrating things I can think of. It leads to all kinds of insensitivity from people who think you’re just fine. My invisible disability is one of the main reasons that I’ve started to hate everyone around me and want to go live in a cave somewhere by myself. And my husband. I think we could be very happy in a cave.

      • HA! A cave with some windows would be nice.
        I see it now as a personal mission to be an educator on that subject. There are many stroke survivors who don’t have a voice and we can advocate for them. Those who don’t understand often just have no idea what that is like. Your blog brings awareness.

  9. glad to hear from you again, Amy. looking forward to more from you!

  10. Hello. My name is Tina

    (Not sure if this is a good place for me to post, but if not, please help me find a forum)

    Almost one month ago my husband of almost 30 years suffered a cerebellar stroke. Actually more like 2 or 3 of them within a couple of days. The final one ended in a thrombectomy to remove a huge clot in the main artery to his brain which has left him needing to relearn to talk, walk, read, write. He is currently in an inpatient rehab facility.

    I am so afraid he will never be the same again. He is only 57 years old (I am 51) we were very active and healthy. It’s just so unfair and I am struggling very much with this entire thing. One day I am strong and feel optimistic when he has a good day. But the next day, if I don’t see another improvement, I feel like all is lost.

    If there is anyone here who has experienced this, I could sure use a friend. Someone to tell me there is hope.

    Thank you.

    • Hi Tina. I had 3 cerebellar strokes within a matter of days. His story sounds quite similar to mine. All is not lost. How’s his speech? Is he walking?

      • Hi Tina. I’ve had numerous TIA’s according to my MRI’s and 2 Cerebellar Strokes, they are nasty little boogers. I have learned the hard way that every stroke is a bit different. My first Stroke was worst the the 2nd and it effected my Right side. According to my “Doctors” I was lucky because I was so young, 56 at the time. I had to relearn how to walk, and use my right arm and hand. Speaking, that was a hoot, it was someone else’s voices coming out of my mouth and it couldn’t seem to find the right words. My mind would “SEE” the word I wanted to say but either nothing would come out or the stranger in my mouth would say the wrong thing, like it kept calling a Penguin a Peacock. I won’t even go into the issue of balance and vertigo and depression and frustration. Because I could write a 10 page blog about it all.

        But know that YOU are not alone in this. You husband will have good and bad and VERY bad days ahead What he needs from you is going to be the hardest thing you have ever done in your life. Allow him to have good, bad and very bad days. Days where all he wants to do is crawl in bed and never come out, day when he wants to through things across the room, but he can’t even do that because of the stroke.

        TIna, be ready to cry with him, to laugh with him. To share his good days and be angry about his bad ones. Just make sure you let him know that no matter what you love him. Good Luck. Don’t forget to take care of yourself, you matter too..

        • Thank you Penny. You are very kind. I swear I love that man more than ever. I tell him so every day. I am there for him and when I lie next to him in that hospital bed and he hugs me and rubs my back I close my eyes and pretend that life is normal. I guess this IS our new normal.

          Once he comes home in a couple of weeks it will be a bit easier (albeit scary as hell) but right now I am commuting 45 minutes each way to visit. It’s like having a full time job.

          It’s so wonderful to have access to people who have been there. I admire you all so much.

      • Thanks for the reply, Amy. They have him walking in a walker with assistance. He has PT one hour per day. He is still very dizzy, but I see that improving a little bit. His vision is crossed, so he wears an eye patch most of the time, so his perception is off a bit too, which does not help with his balance.

        He speaks in the weakest voice and does not seem to be able to project. With speech therapy we have been able to encourage a tummy breath and forcing out words. With patience and lots of breaths he can communicate what he needs or wants to say.

        Over the past week I have seen a pretty good amount of improvements overall. We are now almost one month since the thrombectomy.

        You already made a difference for me when you suggested that a stroke survivor wants to hear “you are not alone.” He really responded when I told him that. ❤ Thanks.

        • You’re welcome. The walking and talking will get back to a point that only he knows something is off. No one else can tell a thing is wrong with me. That’s cool but also frustrating AS HELL!

          • Tina, don’t forget to take care of yourself. I came home after 3 weeks in the Hospital. Your husband’s recovery in the hospital sounds a lot like mine. I know the thought of “bringing him home” is scary. Having been both a caregiver for my hubby and being a survivor I’ve seen both sides. After my husbands stroke, which the ER refused to call a Stroke, he lost his sight. I was scared to death about how I was going to take care of him without making him feel “Weak” cuz, men hate that.. LOL

            Coming home is the place we want to be. Nothing in “our” world is same anymore, going home is a feeling of being safe. You worry about how much you can do and can you do everything that needs to be done. Your husband is going to be so overwhelmed by his recovery. He’s going to be mad, confused, upset. He will have all kinds of emotions and the worst part (for me any way) was not being able to express them clearly.

            My stroke stole my voice and gave me someone elses. I had a very difficult time talking, the ability to find the word I was searching for, the articulate what I wanted to say. I still have someones eles’ voice, and even though it has been over two years it still sounds funny to me, be prepared for anything and everything .

            Don’t be afraid to ask to help.

            Write down your questions for the doctors and therapist as it is easy to forget them once the doctors start talking, maybe even keeping a journal. It will give you a place to put your frustrations, as well as show your husband the progress he has made.

            Spend time outside (weather permitting) even just 5 to 10 minutes. Listen to the birds sing, breath in the fresh air, smell some flowers. It will help you center yourself which will make you a better caregiver,

            Don’t expect huge positive changes, but celebrate the small ones. Every step in the right direction is moving forward, Just expect the backward steps and don’t get discouraged.

            • That’s all wonderful advice, Penny.

            • Thank you Penny. I am going to take all of your suggestions and apply them to our new life.

              I made the conscious choice 2 days ago to start noticing what he CAN DO not what he CANNOT do. He’s had such good results with upwards progress just within the last week. I’m super optimistic that since he is so strong he will be able to make a good recovery. I’m not thinking that he will be the same as he was before, but an amazing person none the less. We will find new interests and hobbies.

              He tells me almost daily that he wants to go home. I so look forward to reintroducing him to our house. We had only lived here 10 months before his stroke. It was our Dream retirement home. Even though we were not scheduled to retire for four more years.

              A detour. But hopefully we will be able to get back on our intended road.

              You are very kind and I appreciate it so much.

          • Hi Amy. I bet many things can be frustrating during this journey. I will do my best to help him remain patient.

            Oh, question for you. You might have mentioned in another post, but I don’t recall…..did you ever find out why you had the strokes to begin with? That’s my concern at this point, is wondering why the clots formed and what we can do to fix that so he does not have to be on Coumadin for the rest of his life. Is that attainable?

            Thank you so much for being here. It means a lot to me.

            • No, no one ever figured out why. Why I formed a clot, where it came from, nada. It’s very attainable. I’m not on Coumadin and wasn’t ever again after 6 months. However, that said if they DO find a cause that will be the determining factor in whether or not he should be on a blood thinner for life.

  11. I’m over 5 years out from a hemorrhagic stroke that affected my right (dominant) side. I’m in a wheelchair, although I can walk a few dozen yards at a time. What I don’t see most people talk about is the pain. The reason I can only walk that far is it f***ing HURTS! And the drugs are a joke, the last one made my affected leg buckle and collapse. Exactly what I don’t need. Wow, guess I needed to vent. Physical therapy has helped the most, but insurance cut me off.

    If you pick back up on the blogging, I will be here, and I love to talk to stroke survivors; you’re right, no one else understands.

    • Hi Denise! I’ve been incredibly lucky in that other than the bi-weekly migraines I get, I really haven’t had much pain. Just a body full of muscles that don’t work well. Do you have pain all the time or mostly just when you’re doing an activity like attempting to walk?

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