3 Years Completed

3 years later, still a prisoner in my own body

Today marks my 3d year of being imprisoned in my own body. It’s been 3 long & short years since the fateful night that forever changed my life.

Some survivors consider this a second chance Anniversary, a re-birthday. Some call it their Strokeversary.  I’m truly happy for them.

I’m not one of them. Those words feel celebratory.

I feel contradictory.

I’m pretty optimistic with a positive outlook. I appreciate what I have. I don’t dwell on the negative. I accepted my situation pretty easily. I work with what I have to move forward on a daily basis.

I DON’T look at today as a celebration of life, which is why I’m unable to use the words anniversary, re-birthday, or Strokeversary to mark today. That night is nothing to celebrate.

Just as I never ever thought I’d have a stroke, I never thought I’d hit the 3 year mark in the shape I’m in. Physically, I’m not even to the point that the majority of survivors are when they leave the hospital or rehab.

I’ll probably never be. No matter how many improvements I experience, I’ll never come close to walking again or using my hand. Yet for some bizarre reason, I still keep trying.

Incessant pain is all I know.

If not close to recovered, I had hoped to be dead by now.

I don’t want to do this for another year. I’m not happy just to be alive. I just struggle through one day at a time, still.

At Least………….

When I hear a sentence that begins with “at least”, I want to explode!

I’m not sure which one irritates me the most:

…You Have Your Health
…You’re Alive

“At least” even bothers me when I hear it said to someone else. When non-strokies vent, people will say, “at least you have your health”.

People have said that one to me too many times.

Health, Seriously???? What does that even mean. The person saying it is usually trying to justify their complaints to me.

I’m in constant pain, only half my body works and is degrading daily from age & carrying around the other dead half, I’m exhausted, my left side is bigger than my right, my skin feels too small from the swelling, I’m trapped in a wheelchair, and if you haven’t noticed yet; I’m mentally unstable.

If this is health, I wonder what sickness is.

None of that ever comes out of my mouth.

When survivors with fewer deficits vent, others say to them “At least you can walk, use your hand, work, think, drive, etc ………..”.

To someone like me who can’t do any of those things, it’s like hearing “if you can’t your life is worthless”.

So non-strokies should be happy because they have their health.

Survivors who can walk or use their hands should be happy they have that.

People like me should just be happy to be alive.

Why shouldn’t everyone be happy just to be alive?

Why isn’t everyone?  Because just breathing isn’t something people appreciate. It’s just what people like me are supposed to be happy about because they can’t think of other things to say to us.

“At least…”, means 2 things to me.

1. They either want to justify their complaints.
2.They think I have something they want.

Please don’t ever say “At least you…” to me – EVER! If you want to complain or vent, just vent! Most of all, please don’t think I have it better somehow.  Each of our issues are the worst we’ve each experienced.  None of us has it better or worse than anyone else.

I’m so sick of people believing the grass is greener. Wanting someone’s good without expecting their issues too is ridiculous.

The grass isn’t fucking greener anywhere. What you think you want or would make you happy, never will. We all have bad to attach to the good.

The good only looks good to the people who don’t have it. Whether it’s walking, talking, having use of two hands, a family, kids, a spouse, a house, money, etc.

After rereading this rant, I’m trying to figure out what caused it (besides my broken brain). I suppose it’s because today is the day I should be grateful to be alive. I am not.

I still believe death 3 years ago would have been better for me and everyone else in my life. I wonder if I’ll feel differently at the completion of year 4.

It’s kinda a standing joke in this house that I’ll live to be 100 because I don’t want to see 50.

I hope one day I’ll feel like other survivors who celebrate life on this day.

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6 Responses to 3 Years Completed

  1. Barb Polan October 8, 2015 at 6:38 am #

    My, my, I don’t remember writing this 3 years ago. Now, at 6 years post-stroke, I can’t do what I expected to be doing within 6 months. I never, ever expected to still be venting about it at 6.

    I am one of those who can walk, but not use my hand. And I can’t resist: at least I have very little pain.

    My anniversary is in November (looming) and I like to say I commemorate the day, typically by doing “something” I have done in 6 years – walk on the beach, for example – and then go to a particular restaurant w my husband. The year that I can finally use both hands, I might do something else – in celebration, that time.

    Sometimes we have to be strong – and live on – because we have no other choice.

    Keep venting! It comes across as honest, rather than a complaint.

    • Leslie October 8, 2015 at 11:04 am #

      You said it perfectly! “We have no other choice” but to continue onward. I ‘m still here so I try to make the best of each day. In rehab, therapists & nurses would tell me I had a great attitude (as I constantly melted, but never quit). I thought they were crazier than I was. What choice did I have but to push forward? Staying in bed wasn’t an option; diapers are not for me.

      I think I neglected to add in this post that “At least I….” isn’t an issue for me. I actually use it a lot to remind myself to appreciate what I have & can do.

      On the other hand, “At least you….” , triggers my anger. The last thing we need is others deciding what we should appreciate.

      I look forward to reading your 6 year reflection.

  2. Chris Shield December 1, 2015 at 1:41 pm #

    I don’t celebrate the anniversary of my strokes, any of them. There are too many for my feeble brain to remember, lol! But, I am glad to still be here… life is not easy now, but for me it never has been.

    I can’t stand it when peole say “AT least you…” to me. It angers me more than anything else, along with ” You are so lucky”, emphasis on the SO. Tell me one thing that is lucky about having had 4 strokes, or Crohn’s Disease, or Hashimoto’s Thyroiditis, or inflammatory arthritis, or migraines, or whatever. I used to get so angry when people told me that I was lucky because I was able to stay skinny… if they only knew the reason I was skinny was because I couldn’t eat, and if I did I had to run the the toilet (sometimes during the meal) to either throw up or void my bowels, because I couldn’t take the meds that might have been able to help.

    There have been many times in my life when I just wished I would die, because the pain was just too much for me to handle. But I came through it everytime, with a grimace (sometimes that is what passes for a smile).

    Life is a struggle for almost everyone, it’s just that some of us have “visailities” and some of us have “invisibilities.” (I think I’m off-track here”) But I really see no point in celebrating something as traumatic as a stroke, no matter how severe it was. Move on…

    • Leslie December 1, 2015 at 2:04 pm #

      I am sorry you have had so many challenges but am sooooo glad you survived them all. Getting to know you has been an awesome experience.

      I don’t think you veered off-track; I think you nailed it. People don’t see the “invisibilities” so they forget they exist and base their comments on the “visibilities”.

  3. LFischer December 21, 2016 at 10:13 am #

    Hi Leslie and to all of you who participate here!

    (I have been emailing you, I am that psychology student that would like to analyse blogs and forums on Stroke survivors).

    Reading this specific blog I couldnt help but notice that it seems as though you are so torn between extremely negative and more positive emotions.
    Can you identify any triggers that make you feel this desperation or triggers that make the negativity worse? is there anything that helps you to overcome these emotions?

    I read also that you believe that alternative treatments are helpful for you, do you think that more information should be provided regarding broader options after rehab or hospital discharge?
    It appears that stroke survivors feel somewhat isolated, ignored, missunderstood or lacking contact to others with similar experiences.

    I do not want to draw any conclusions on your experiences so please excuse me if it may seem that way.
    I would be really grateful to hear from any of you if you could share your thoughts with me on some of these issues.

    thank you
    Laura Fischer

  4. Leslie December 21, 2016 at 2:11 pm #

    Wow……………. I’m actually thinking this response may require an entire post of its own. After rereading the post & the comments, I know it deserves its own fresh post. I’ll start working on one. (Hopefully, one that encourages other survivors to chime in).

    Thanks Laura for taking such an interest in the aftermath of stroke. In my opinion, it’s an area highly overlooked, especially by people as insightful as you.

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