I was at dinner this weekend with my friend and her parents joined us at the end.  Her father said, ‘It’s a blessing that you’re still alive.”  I immediately said “I don’t think that me and Lindsay would call this a blessing, that we are still alive but disabled.”  He agreed and said “maybe that’s selfish of me to think that.”  I totally completely understand that thinking, but a blessing this is not.  My friend has an issue with writing like I do and he told me “the very first thing that Lindsay wrote was a note to her mom saying ‘wake me when this nightmare is over’.”  Yeah…..yeah.  I have learned A TON since the stroke, I have erased all negativity from my life and cleaned up my life a bit by eliminating people who don’t help my recovery.  This means I’ve lost some friends, but I gained a lot of new ones.  A lot of positive stuff has come out of this, but I could have learned these lessons with a much less traumatic, devastating, and disabling illness.  I will never, ever, ever refer to this period of time in my life as a blessing.

Categories: Health, Recovery, Stroke stuff

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41 replies

  1. I’ve always disliked the word blessing, even pre-stroke.

  2. I too would not call this period a blessing.While I am only modestly disabled as a result , I have also learned many things, both about myself and others; mostly I miss the non chalance of my pre stroke life. A time when I didn’t need to think , but just do. I so miss the ease of that. I dop see the benefit of living at a more deliberate pace and not so freneticaly.That has been an improvement, I’ve also had to come to know who I really am, and ironically, feel lot better about myself. What an unexpected outcome. Marta

  3. I’ve also bristled whenever somebody would say it’s a blessing that I’m still alive, because so much about my current existence often feels like a mutant level of hell. I finally came to conclude that they meant it’s a blessing to be alive in any form vs. dead. Whatever pleasure and joy you’re now giving and receiving would not be possible if you were dead. Looking at it that way, I am now starting to periodically see what they mean, such as when I’m enjoying listening to the crickets or laughing at a joke I just heard.

    • My perspective is different partly because my situation going into this was different than most if not all of you. I had “chosen” to undergo a “life saving” surgery. I had almost a year to contemplate if it was the right choice for me and my family. I was progressively deteriorating in that year prior to surgery. I knew death was a very real possibility either way….surgery or not…and disability was finding me already. If I was “lucky” enough to wake up from surgery… I knew I was in fact lucky….no matter my disability….it was inevitable anyway…I was trying to make the best of a completely f’d up situation. I woke up knowing the surgery didn’t go as planned since I couldn’t move anything on the left….but I was thankful for what was right…I knew it could have been worse. I DO definitely consider it to be a blessing that I am alive and not dead. I get to continue to be my son’s mother….which was a huge motivation to go through with the surgery. I “get” to do, experience, lots of things that I wouldn’t be able to if I was dead. And…..I had an amazing recovery..yes things are different, but I am completely thankful that I didn’t die on 12/10/10….it was a very real possibility. Now, I feel charged to make the very best out of what is. It is different but still beautiful and I have learned some lessons that take others a lifetime to learn…I consider that part a gift.

      • I imagine that I too would be thankful that I didn’t die if I too had had an amazing recovery, but I until I do have an amazing recovery, I will continue to believe that I would be better off and my family would be better off if I had died. I have learned nothing from this experience that I would even remotely consider a gift. I’m genuinely happy for anyone who can find something positive in an experience like this but I don’t believe it’s the norm. Society puts such pressure on us to be upbeat, to tell our family and friends that we’re “doing just fine” when what we’re really doing is looking for the nearest bridge to jump off of if only we could climb over the guard rail, so I do think that the least we can do for our fellow stroke survivors is not put that kind of pressure on them as well, holding them to some standard of positivity. Sorry about the rant, Amy, I just really hate the word “blessing”. Feel free to delete me – I won’t blame you for wanting to avoid the inevitable shit storm of comments that will follow.

        • I think one problem with the word “blessing” is it as a religious concept referring to something God has bestowed. And why would God bestow complete recovery on some survivors, but not on me? I have a similar problem with grace before meals; “thank you, God, for providing this food to us.” But don’t you think God could distribute food a little more fairly?

          • OMG Barb, yes! Brooke can you answer this for us?

            • I don’t know if I can answer it. But, it’s a matter of perspective. The world, by and large, has a very OFF perspective of God…who He is, what He does, how He works. God is all-powerful, but has given us the power…actually we took it, and with the power severed our relationship with Him. He spent centuries trying to mend it, but in the end, we never chose Him. So, He made a way, through the person of Jesus Christ, to give us all individually the choice, once and for all, whether or not we want relationship with Him. God did not do this to you, evil did. Just as real as God, is evil and darkness. Look around…it’s almost easier to see the darkness than it is the light. But it’s there. It’s in the gold shade of the clouds when the sun is just peeking through during the early morning hours, it’s in my Charley girl’s crazy giggle, the light breeze that blows through the trees in my backyard in the evening, it’s in the stranger who looks into my brain injured husband’s eyes and shakes his hand like he is a real person and not some invalid who doesn’t understand, it’s in the countless people that have sent us money so we don’t lose our house, it’s in the hug the stranger at the park gave me the other night, it’s in the hope that continues to fill my heart everyday…even when I can’t breathe, even when I think I have cried so much that all my tears are gone, even when Charley is throwing massive fits and I join her, lamenting at why I have to raise a crazy toddler alone. It’s in the dream and hope of something bigger than this life.

              The facts are: we ARE blessed to live in America where, if you’re gonna die…they can save you, the food is plentiful, there are government programs to help people who can’t find a job (or don’t want to), and soup kitchens in every town for those who can’t afford a meal for their family, and so much more. Our culture has become spoiled, entitled, microwaved, gimme, gimme, gimme. I am SO guilty. So guilty. I throw fits on the regular. But, to try and answer your question, as a Christian, I am called to help those people who aren’t as fortunate in the food distribution area. The Bible literally says we (Christians) are supposed to be the hands and feet of Jesus on this Earth. I am blessed, and I get to bless others. As far as recovery and how much one recovers…I can’t answer the whys of that, for obvious reasons. But, I do know, that while God is all-powerful, there are forces of darkness on the Earth that can win, this side of Heaven. But, in the end, God always wins. We may have the shit end of the stick for a few years but nothing can touch us when we get to Heaven…and that’s forever. That’s my ultimate hope. If I didn’t have that…what else would I have? The hope in Doctors? We all know how far that would take us. The hope in ourselves? Crap, I disappoint myself about 20 times a day. But, because I choose to hope in Jesus (it is a choice) then I get to have this amazing grace that fills every nook and cranny of my soul. It’s not perfect, it’s not all butterflies and rainbows…remember my pastor husband who can hardly see and talk, is just getting decent at moving and who hasn’t lived in our home for six months…but it is a life-giving, recharging, hope-filled existence. I get to live for something bigger, something besides this life that has clearly let me down. At the end of my days, even if by some crazy wild chance God isn’t real (I believe with all my heart He is), at least I lived a life of hope, joy, and love (most of the time…not to say I don’t have my crummy days…weeks..etc.) than one of depression, anger, and sorrow.

              I have plenty of reasons to know that God is totally and completely real. He has done so much in my life. This person, wasn’t always me. I came from a very dark place about ten years ago. If you are interested in hearing more, I would love to share. Please email me.

              ❤ you, Amy. You ARE a blessing to me.

          • I think God could at least eliminate high fructose corn syrup.

          • I’m going to open a can of worms with this response. I know it.

            It is God’s grace that you survived when so many don’t. God’s grace takes many forms. Without the day to day problems we all face there is learning and adapting. Yes, it would have been better if we hadn’t had our lives turned upside down. We do manage to get through each and every day. Yes, we may be wishing to stop it all and gain a full recovery, but that isn’t the case with us.

            For every day we are above ground we touch others in ways we didn’t imagine. We inspire others more fortunate to appreciate what they do have. We inspire others like us to strive for recovery. Each baby step forward is a humongous achievement because we know how hard it was to achieve it. Meanwhile we do the best we can.

            The grass is greener on the other side. We know that now in retrospective. We didn’t appreciate it when we were on the other side. We were looking at the other greener pasture. We strive for it and when we had a stroke we landed in a muddy ditch. No, it isn’t fair. It isn’t right. But we are here.

            I could have died a few times in my life. My heart stopped twice during my last cancer surgery, but I didn’t die. I could have died in a helicopter crash two dozen years ago leaving a husband with three young girl and a bot to raise, but I didn’t. I was disabled then, but fought to walk and function again as a bionic woman with artificial parts. I could have died when a crazy unloaded a shotgun into my gut, but I survived to fight for better gun legislation.

            Amy said that she would have learned the lessons she’s learned eventually, but would she really. I’ll bet she has more compassion for what a stroke survivor goes through in recovery than she did in all the time she was an OT. That’s not to say that she was unfeeling as an OT but she has gain a better perspective.

            I wouldn’t wish a stroke on my worst enemy. I hate having to adapt and really dislike changes. But the fact is I’m still living and breathing. And there’s hope.

        • Haha no Julia I would never delete you! If I had any little kids I’m sure that my post would be a lot different, but I don’t and neither does my friend who I had dinner with, she’s only 22.

      • Elizabeth, I feel the same way. You are not alone.

  4. Blessing? Nope! Life affirming? Maybe! A pain in ass and a bitch? Yep!

  5. Yes, people I know consider the fact I’m alive as a blessing. Certainly, there are gifts that came from the stroke. There are times now that I am blissfully happy; but there were times pre-stroke that I was blissfully happy, so that didn’t come from the stroke. One question I wrestle with is whether the gifts ( my career, my attitude, my gratitude, the outpouring of love from others) outweigh the losses. I’m ambivalent about that one; some of the gifts were already there, but I didn’t recognize them – my mistake. Couldn’t I have learned that lesson some kindler, gentler way?

    Also, ironically, I was never even remotely near death – I was awake when it started and stayed conscious throughout; I suppose the damage could have been far worse (and killed me) had I slept late that morning, but I always arise early.

    And yes, most of the time, I consider my life now a much better option than death.

  6. I’m pretty sure after the last “hot topic”, and this one, that my views and opinions are not appreciated here. I will just stay networked with my angioma peeps that share similar views and attitudes. We, as a group, have a different perspective…and embrace more positive attitudes that I like and I want to stay connected with and surrounded by. Julia, in particular, your views sound like you are likely depressed…finding help for…..that if that’s the case…will only help you and your recovery. I wish you all the best on your recoveries.

    • Elizabeth, I always enjoy your perspective. I am by nature optimistic and a workaholic. I WANT to believe I’ll have a full recovery, and everyone I know says that if ANYONE can, I will. My PT told me today that one of the things Diana Nyad said upon completing her swim was, “There’s a way.” I think what she did was even harder than what we are striving for, but I do believe there’s a way for each of us. The rub is that we have to FIND the f-ing way.

    • Elizabeth I think some people is having a harder time accepting what it happen to them because it got them by surprise, they had a healthy life and no signs of a stroke coming into their lifes. You were having a cirgury and in a way you knew the pros and cons. But I also believe that being positive is what keeps you moving and improving. My husband has never complain about what it happen to him, he usually tells me “it just happen” and he believes he is going to get better, he is not angry to anyone and he is not even depress. He has a better attitude about this than I do. Every person is different, every recovery is different but having a stroke or being a caregiver is what brought us together and I appreciate everybody points of view on Amy’s topics because we are learning and we can help each other.

  7. For me it is a blessing because its better than my ex-wifes constant reminders that she should have left me on the floor to die. And now I’m a blessing because I can be blamed for all things bad that happen from now on.
    But life is good for me.

    • She said that to you? Well, I can relate. Some pretty unbelievable, horrible, mean things were said to me by my significant other at the time.

    • Dean, What a f-ing beezy!! Yes, I learned that non-swear on this blog and I’m CERTAIN I’m using it appropriately (thank you, Brooke, for the education, and you, Amy, for the clarification). I like to give people the benefit of the doubt, but she sounds like she was just the person to jettison, as long as you’re okay with it. Because, you know what? Once something as shitty as this happens to you, you get to have it be all about you thereafter. Sure, I love people and am concerned about their welfare; I try to be kind. but my first priority is me. That would change, of course, if anything happened to my kids or my husband. If you have a stroke, you get to be selfish and self-centered. Period.

        • Julia, I wish I knew what you mean by this question.

          • Sorry, Julia, your question nagged at me, so I retread my post. Excuse: I have trouble reading comments on Amy’s blog because each subsequent comment has narrower margins, until it’s down to just a character or two wide, which I can’t rad. Anyway, if you want to quote me re how we get to be selfish, go for it!

      • haha! Yes! Barb used the word, “beezy”! My life is complete…

        Okay, maybe that’s a little dramatic, but I sure am tickled. 🙂

        And, I do concur. What a beezy. Some people are sad. So sorry, Dean and Amy. I am so happy and proud of both of you to make such courageous decisions for yourself in THE most hellacious times of your life.

        • Brooke, I find it amusing to use a non-swear that invokes the swear. It reminds me of my mother , who used to use H-E-double-toothpicks in an attempt to swear. how,exactly, is that not swearing? As a Christian, I feel commanded to not take the Lord’s name in vain, but that removes just ohmygod, god, Jesus, he’ll and damn Fromm list. With those gone, I am allowed a generous portion of the f-word and all others.

          • You’re allowed a generous portion of the f-word. Haha, that’s funny. I swear a lot, as is evidenced by use of swear words in almost every blog post.

          • Saying “freaking” is not nearly as offensive as the real deal. This is why I use that word, beezy and other “replacements”. Swearing is mostly cultural. Therefore the Bible doesn’t say, “don’t swear”. And I don’t swear a lot, but it happens, and I usually don’t feel bad about it…unless I was doing it in anger at someone. But if I, as a church folk, went around cussing all over the place people would inevitably judge me. Right? You are judging the fact that I don’t cuss…but I use a replacement. I am not upset or irritated by this..merely pointing out a fact. It’s not the meaning itself that is offensive…for instance “shit” can be used instead of “awww man” they can mean the exact same thing. So, why can’t I use the word “crap” instead of “shit”? “Shit” is offensive to many people while “crap” is not. It’s all cultural. The bible does talk about the power of our words though…and the only reason I am even going there is because you asked, Barb. I am not the type of Christian that likes to try and squish Jesus talk into every conversation that I am…not like this anyway. I don’t mind reading Amy’s cuss words in her blog…or other people’s when they are sharing. I don’t think everyone has to be just like me. Just for the record. ❤ This is me sharing my heart and not being upset…just so you guys know. STuff can get lost in translation of text at times.

            • Brooke, thanks for the explanation. Although I have been a devout Christian my whole life, including reading the bible daily for years, and I once thought that if ever anything awful happened to me, I would remain my sweet faithful self; people would ask me how I could be that way and I’d say it’s because of my faith. Alas, when I had the stroke, my faith got whacked along with my brain, and I found it impossible to believe that God cares for every flower in the field or every hair on my head. I investigated Buddhism Nd found that it did not satisfy my void the way the Christian faith did. I did not mean to derail this conversation into a religious one – I too do not force others to listen to my beliefs.

    • Dean, Aren’t you glad she’s your ex? That in itself is a huge blessing. (snickers) I normally give people the benefit of the doubt but with a statement like that…
      I believe in treating people like I want to be treated. And to be honest, I may have wished to do bodily harm to my ex, but if he was in a life threatening situation I would help him.

  8. I am sure you “could have learned these lessons with a much less traumatic, devastating, and disabling illness.” Yet, I doubt you would ever have the depth of understanding which you do now.

    I am glad my challenges were faced when they were. I was able to learn everything with my children. I learned to walk when they did. I learned how to get dressed and struggled with how to get my arms through the shirt sleeves when they also struggled with this. Life let me go down a completely different path as a parent then I would have ever imagined. I don’t wish this on anyone, but I also see there was an unexpected gift in the timing of this life experience.

    • My timing is not a gift. There’s a big difference between this happening to someone with a spouse and kids and someone without any of those things.

      • Amy, I agree that the stroke’s timing in your life sucks. You had a different post about what you WOULD HAVE BEEN doing in your 30’s: dating, marrying, having kids, building a career; but, instead, you’re recovering from a stroke. That absolutely sucks. My losses – doing things I love and my beloved job – are nothing. I can’t even believe I just saw it this way for the first time. Maybe my cognitive skills HAVE NOT returned. Sorry to be so slow.

      • Amy, I can’t image the path you have had to travel. You are very courageous. I am glad, some how along this path, I discovered you. The knowledge you offer has helped me continue recovering. Thanks for being there for us in the blog world.

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