I’m nervous about putting this thought of mine out there because I feel guilty about it.  But if I had this thought, I have no doubt that other people have too.  I was talking to a friend the other day and we were talking about my being disabled.  I said it’s better than to have been born with a terrible, awful, lifelong chronic illness.  But then I thought – is it better?  Here’s the thing – all of the people who were born with a horrible, terrible illness that has affected their entire life – it has affected their entire life.  They don’t know any different.  I know way, way, way, way, way, way different than this.  WAY different.  I don’t know, I hope that thinking doesn’t make me a horrible person.  😦

Categories: Brain stuff, Health, Stroke stuff

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32 replies

  1. I definitely feel just a tinge more sad for people who have had things happen to them to make them disabled. But, i also have a newly disabled husband, so i am also slightly partial. I don’t think you are a horrible person. I have thought the same thing. I think it is much more tragic to see some of the people (including my husband, in part) who are at CNS with zack who had a different life before and are now mentally handicapped… Than say, a person who was born with mental retardation. Not that it’s not tragic… And I am sure people who have had kids born with mental handicaps would completely disagree and think I am a wretched person. But, like you said, there was never a before for them. As a parent, giving birth to a child with a disability is a huge fear… Right behind something happening to my husband… Oh look, we already got that one out of the way, looks like it’s bumped to number one, in tandem with something happening to charley. 😛

    I hear ya. I have thought Bout that a lot.

  2. No, it does not make you a horrible person. I have a friend who has been blind since birth. She realizes blindness has limited her but because she has never been able to see she does not realize the extent of what she’s missing and is quite happy. She can’t imagine being sighted her entire life just as we can’t imagine being blind our entire life. Blindness of course can be seen as a less debilitating disability than others.That said, my father is blind from a virus that attacked his lungs and then spread to his eyes. So, he’s been blind about half his life. He knows what he’s missing out on because before his blindness he was “normal”. I think that makes it harder for him to swallow. He was diagnosed with Parkinson’s a few years ago so now he’s even more limited in what he can/can’t do, obviously, and for him that’s even harder to swallow, not to mention more depressing.

  3. Amy, you could not possibly be a horrible person – you are too concerned about people and helping them to ever qualify as horrible. If someone is born with an awful disease, it’s sometimes just the ones who love then whose lives are affected, and they themselves never know what they’re missing. I can’t compare and evaluate it, but it does feel as though someone who NEVER whatever can’t miss something, and that most emotional pain is caused by loss.

    • Amy, you are absolutely not a horrible person, but you are probably correct as it is difficult to miss what you have never known. My life was good, and I want that life back. No matter how much recovery I get in the future I will still want that life back, as well as the years that this stroke has stolen from me and from my family. I will say that the only thing I can think of that would be worse than what I am going through is seeing my daughter go through it. So my heart goes out to the parents of disabled children as I think they suffer more than their kids do. Both my parents and my father-in-law died in 2009 within a few months of each other, and I miss them all terribly. My husband and I could really use some parenting right now, but we also see that in a way, it is a mercy. Seeing me suffer would have broken my parents’ hearts and I am glad that they were spared.

      • Julia, your final comment hits home: my mother was a nurse and, after she contracted TB, spent a year in a sanatoriam, surrounded by patients with different ailments, including stroke survivors. All my life, having a stroke was her biggest fear; having a stroke and living. She died 23 years ago, but I am living her greatest nightmare, which is worse for any parent than having it happen to them. Thank God I lost her before this happened. My father is still alive, and has no concerns about me at all.

  4. I wish your blog is more about recovery process, like what you do which is helping you in your recovery? Do you still see a therapist ? If yes , what do you work with him/ her etc. these kind of information will make it more collaborative and useful for stroke survivors in my opinion .

    • I’m sorry that you don’t like some of my topics, Zpatzer, maybe a different website would suit you better.

      • I have to say that I find Amy’s topics both thought provoking and very relevant to the recovery process. Many of us, myself included, are not just physically disabled but also have spiritual and philosophical issues that we are grappling with. We are more than just recovering stroke victims, we are still thinking human beings. A stroke is not just a devastating physical event – it is an existential crisis and needs to be addressed as such. Thank you, Amy, for raising these issues and being such an excellent moderator of what have been some very interesting discussions.

        • Julia is spot-on: a stroke is an existential crisis. To treat it only as a physical/cognitive problem means that recovering completely is not possible. In my case, anyway.

          I appreciate all of Amy’s topics, especially those that go off on tangents.

      • I love your topics Amy, you’re actually the most entertaining stroke website out there, and the only group of people that put me in my place.

  5. Maybe it depends on age. I had my stroke at 60 after a good and relatively long life, so my vote is that my situation is much preferable than someone who never knows a healthy life. If my stroke had happened when I was young, I might feel differently. My own terrible awful thought is: would it be better to have cognitive impairment if one suffered from significant physical impairment. Would not knowing how bad your quality of life was be better than knowing? An awful thing to think about, I know.

    • I think about that too. There is truth in the saying “ignorance is bliss.”

      • That better cognitive ability is actually more likely to result in depression because you know how badly f*cked up you are.

        • That’s really interesting, Dean. I was “depressed” from day 1, knowing just how totally screwed I was, and all the docs wanted to do was 1- make sure I wasn’t going to off myself on their shift, which, given that I was bed bound would have been damn near impossible anyway, and 2- medicate me for my “depression”. I gave in briefly and ended up a zombie with grand mal seizures. SSRIs lower the seizure threshold, a little fun fact your doctors probably haven’t told you. “Depression” is a normal response to having your life turned to crap in under a minute, but no one wanted to talk about that. Weill Cornell’s response to my “depression” was to send a medical student to talk to me. Frankly, I got a lot more out of the therapy animals I asked to see (a teacup Yorkie named Angstrom who specialized in finger licking, two golden retrievers who worked as a team, and my cousin’s therapy Havanese named Darcy after the ballerina Darcy Kistler) than I ever got out of any of the human shrinks I saw who were, quite frankly, worse than useless, including one who actually told me I was bipolar. Am I still depressed? Yes, but pain can be a great motivator. Would I work at therapy 6-8 hours a day if I was happy? I doubt it.

          • Dean and Julia, not being depressed myself, I can only talk about what I’ve observed in others: grief is not depression; I have a very close friend who is chronically clinically depressed; the best treatment she has had was voluntarily institutionalized as she was weaned off all drugs. She went from being a zombie to a cheerful, active, supportive person who gives a shit, something I had never seen in her before.

            I, on the other hand, am grieving for my losses. Talk helps comfort me, as do my dog, family and friends.

            The thought of living to be 82, when our retirement savings run out, still disabled, makes me even sadder. I might be depressed by then. Who knows?

            • I agree with you that grief is not depression which is why I put the word depression in quotes in my comment. But “depression” is in the DSM (the bible of psychiatric diagnoses) and so can be medicated and billed for. The newest edition of the DSM actually defines the sadness felt after the loss of a loved one as depression. So if you are feeling low after the death of a friend or family member, you are now considered mentally ill by the medical profession. I am ashamed to be a doctor.

    • Jim, I agree that age matters – like, you, I have had a long, happy and productive life. Ever since we were 45 or so, we’ve told our kids that we’re happy with what we’ve done, and experienced, and that, if we were to die tomorrow, not to feel as though we were gypped.
      Our comments were following my father-in-law’s death at 82. He died exactly how he wanted – heart attack in bed waking up in the morning – and just as dementia was setting in. Perfect, in my eyes; and his too, I’m sure. Certainly, I grieved, but I also appreciated that he’d had a long and happy life. Others in the family, though, reacted as though he – and they – had been robbed.

  6. I would agree with that. You’ve known a good life and then you got dumped on – horribly. You know the difference.

    A lot of poor people wouldn’t smile so much had they previously been well off.

  7. Amy,
    No way you could be horrible. People born with disabilities have an advantage over us. They have been adapting their whole life where we are just beginning. People in general hate drastic changes.We, the previously semi-healthy, know a life without drastic changes. The same can be said about those born with disabilities. I look at my daughters, one had a TBI at 3 and another was diagnosed with JRA at 2. They live a fulfilling life not knowing any difference because they have worked around being “normal” their whole life. To them their respective problems are normal for them as is the challenge. For us, we know there is a difference. So it is much harder to adapt. We were set in our ways.

    Yes, I had a stroke, but my stroke does not define me. It is just one part of who I am.

  8. you are not a horrible person, you are entitled to your opinion…..us being unhappy with our life is like taking on the role of becoming the poster child for stroke to those that know us….to some it is a wake up call to live differently…we have to let others know the good and bad that comes with it

  9. Amy, by no means are you a horrible person for this thought. I am glad my challenges did not come until later in life. The old saying runs through my mind, “It is better to have loved and lost than to have never loved at all.” I had a lot of fun in years gone by. I had a great life. I had freedoms completely unattainable to me now. Now, I can remember those days fondly and love my life once again. There will be different passions and excitement. I lost a lot. Yet, now it’s up to me to live a life not consumed by my disabilities but rather embracing my lasting abilities.

  10. How about living with several chronic illnesses and being disabled? I wasn’t born with all the chronic illnesses. I probably started getting sick around 10 or 11 and it just got worse over the years with new diseases popping up. I managed until about 3 years ago when it really started getting bad. I just became disabled last April. It sucks, but what do you do? Just have to keep moving forward. I live one day at a time. No more. No less.

  11. It makes sense. Plus youre a therapist. And you are young. Were about the same age. It does suck. No need to cover it up with happy sayings all the time.

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