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Still the same


Pearls

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Noooooooooooooooo!!! Tired of hearing the old cliche. No i am not still the same. I am different. My life is different. I will never be who i used to be again. I am that brain damaged woman hobbling down the street with the wide eyed gaze, the odd smile,moving at a snail's pace. People feel they have to tell me how good i look for "someone who has had a stroke". I may be brain damaged but i am not blind. And it's not just looks. I am a shattered soul, inside and outside. The tell me i am a new normal. No i am not. I am a disabled old normal. Give me a break all you well intentioned normal people. Let's be honest. Iam a cripple and all your optimistic platitudes will not change that. Bring it on. Call me a hero for surviving. I don't have a choice, all i can do is survive. i keep wondering when do i stop doing therapy five days a week. When do i let go and accept with grace and fortitude? Other people have jobs. I have therapy. Never give up, never give up. When do i get to return to a normal life? Don't you just love it when someone tells you changes can happen ten years down the road. Should i put my life on hold for ten years waiting for a miracle! This does not encourage me. My new aspiration is to be a Walmart Greeter. I feel like i am living on a different planet. Good morning. How are you today? We have bananas on sale today. I had one with my oatmeal this morning. I am going to buy a bunch on my lunchbreak and make banana bread....if someone will help me. Please don't buy all the bananas though. Save some for me. Halloween costumes are on special today also. Time to stock up on Halloween candy for all those trick or treaters. The best selection is right now. Btw i applaud the Greeters. They always make me smile. Thank you walmart for putting one of us front and center. Thank you for the wheelchair scooters. But could you make the aisles a little wider so i don't get tangled up in the women's clothing. I end up wearing half of what i scoot by. Time to go and get ready for therapy and hear about how awesome i am doing this week....soooooo much better than last week......all my hard work is paying off . ;)

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I hope that venting made you feel at least a bit better. I'm not sure it did for many who read it, however. Cynicism is certainly understandable but it is rarely helpful. I hope you find a way to conquer your own. I mean that sincerely, not in a patronizing way. 

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Some days are good some days are bad. This is a blog where i share my own feelings. They are honest feelings, brutally honest. Some days i can smile and bring happiness to all the normal people and some days are so painful i don't know which way is up. For some it may be hard to listen to but for others it is helpful to know that they are not alone , that others feel like they do. I hope i find a way to conquer all the pain also. Pretending to be strong and pleased with my life is not a solution. I am trying to claw my way back up to the top to where i can feel like a whole person. It's hard work and this is part of my journey. I am grieving for the person i lost, for all the years of hard work i've lost, for all the dreams i've lost. Having a stroke is not pretty. This is my reality whether i choose it or not. This is the only place i can go to for support.

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Pearls, vent away, your feelings are your feelings.  I am not going to tell you it will be better, how should I know?  But do make your life as good as you can, you're the one who has to live it. Ray and I had good times and bad times, him as the survivor, me as the full-time caregiver but I betcha both of us would have swapped back to our old lives in a heart  beat.  Unfortunately that has been left out of the options list.

 

Keep on blogging. With (((hugs))) from Sue. 

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Pearl :

 

you are smart woman, and you realize this down day shall pass too. I spent first two years wishing my old life back till I realize I am missing out on my present life. I was fortunate once I realize how my negativity affected my young son I picked myself up & made best lemonade possible for our life. Though I have since then realized only control in my life I have is on my thoughts & I believe happiness is a choice, and my thoughts have immense power to make me happy or sad, so I choose my thoughts wisely.

 

Asha

 

 

Asha

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Pearl, I understand your need to vent and I would never discourage you from doing so. However, I think Asha makes some very valid points about happiness in her posting above this one. My wife's life has been dramatically changed by the stroke she had nearly a year ago but her generally positive attitude has been helpful not only to her but to me and the rest of our family members. I both admire and appreciate that. Sure, she has her down moments but they don't last long. I'm reminded of what a strong and good woman she has been for all of the nearly 50 years we've been together. I love her now more than ever and I feel grateful that I am able to be her caregiver now.

Cursing the darkness is understandable and even at times useful. But it does not produce light.

Good luck to you.

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After two years of therapy I made the choice of living my life not try and get back 100% of what I lost. And I will tell you I am happier now not living my life around therapy apts. . Kristen

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Thank you Kristin. At some point we need to let go and let God. That is a big question for me. We can't live on dreams of recovery forever. For some of us it just isn't going to happen, that is the elephant in the room that no one wants to talk about. My life has been centered around therapy appts five days a week, sometimes six, for almost six months. I am not a slacker, i work at it I am glad your decision has brought some peace into your life so you can once again live your life.

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Ron, i agree it is great to have a positive attitude. What is not great is having to smile on the outside while you are screaming on the inside. That never ends well. Everyone enjoys being around happy people. I get frustrated with the lack of honesty of pretending that everything is going to be alright of expecting me to function and feel like everything is just rainbows. I am trying to whistle a happy tune but why does the survivor have to be responsible for making everyone else happy?? Why can't i be honest? Grief and depression are not things. to be shoved under the rug. Because i am depressed does not mean i am weak. Rehab spends a lot of time on all the physical results of stroke but not enough on the emotional and psychological. If we don't talk about it no one will hear our screams. BtW i had a great day yesterday my DH took me shopping . Where i live it is a 50 mile trip. And i survived using public bathrooms by myself. I topped it off with an hour of PT and slept peacefully last night. And the last two days i have been hungry and food is stsrting to taste like food again. It has been 4 mo. Since i have tasted food and not been repulsed by it. Yaaaay.

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Hi Pearl, so please that food  is tasting like food again.  I understand about "why  should put on a happy face," when inside you feel anything like been happy. I remember after my stroke and first visit  to the doctors office, I was asked by the nurse " if I felt sad?", inside I was thinking, I just had a stroke, my right side is unless, my brain is in a mess, and I am in pain, how would you feel? 

 

  After four years, I am over the silly questions.  I just nod my head or act like I did not hear,  Pearl,  people have  no idea, what we been through.  I do not look back, stop asking why, just go forward, enjoying my life, with my family and true friends.

 

Go well my dear

 

Yvonne

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Pearls, I agree with everything you just said. And I am delighted by the two good days you just had, especially the return of food pleasure. So you ARE progressing. I think it is mostly good and healthy to be honest and to vent your fears, frustrations and doubts. The challenge lies in not allowing those feelings to become dominant and consume you. I think focusing on those ever-so-slight gains is usually a better approach. I don't think you or any other stroke victim should ever feel obligated to smile on the outside. If it isn't sincere, don't do it. Frankly, people can usually tell when it's fake anyway.

I've read enough and lived enough and observed enough to know that hope is never pointless. Yes, full recovery is a long shot and it is rare but it is still possible, albeit remotely in most cases. Hope is also what keeps people moving ahead against all odds and that in turn often makes them better off than they were. Meanwhile, depression is very destructive and unpleasant so it is something to be resisted, perhaps with help.

Pearls, I really wish you the very best. Notice that I didn't just sit here and cheer you on and tell you that you're going to do fine as long as you maintain a positive attitude. If that is all it took, everyone would recover fully from everything. But I do think that things aren't as hopeless as you sometimes believe. I also think that focusing on the possible feels a lot more pleasant than focusing on the probable. So hang in there, Pearls. There is a reason why hope springs eternal.

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Just thinking. Someone said happiness is a choice. It is. But you know what depression is not a choice. A stroke is not a choice. When i say depression i don' t mean sadness or down in the dumps. I mean total despair. Depression from a stroke is not simply how you choose to react to the stroke. It is part of the stroke just like paralysis or aphasia. It is brain damage. Depression is much more than unpleasant. That is an understatement . It is the blackest of hells but it is important to understand it and accept it as part of the brain damage that has been wreaked on us and not feel like it is something we chose. But that part of our brain can heal also.

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Vent away sometimes it just helps to acknowledge that it sucks right now and that feeling of despair is real and being frustrated when people don't get it. No your life will never be the same and answering the same questions every day by the therapists who want to know "how are we doing today?" Used to make my husband crazy. He would look at them like they were crazy didn't they know he just had a stroke....that he will probably not work again. Seriously. He did go to therapy around 3times a week for about 18 months and did finally get to the point of accepting it. As someone who could only watch and try and help as much as I could, I had to wait for him to accept the fact that he was still alive and here to be loved by all of us. It isn't all rainbows and happy times. Surviving a stroke is hard work which is why we call you survivors. I think it is important to go through all of the emotions but if you get stuck and the despair doesn't seem to end please reach out and talk about it. Your recovery is your recovery and it will take as long as it takes. So vent on the bad days and celebrate the little joys on the good days. Wishing you many more joys than pain.

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Was doing fairly well this week. But i am really missing "me" today. I want to be " me" again. I was at that point in my life where i had just got my second wind. I was on a roll at work, being productive and successful and feeling good about life. You spend most of your life learning and honing your skills and at some poinit iit is all brought to fruiition. I wasn"t totally there yet but i was coming close. My dh and i were finally doing some travelling which we had put off for 30 years for one reason or another. Life was exciting. And then it all fell apart and i really don"t even know where to start again. I want the happy laughing me back. I want the person i grew into. I just want " ME"!!! I do not want a new me. I want the old ORIGINAL me. I want to resurrect her from the ashes.i have lost me. Damn. I started this with many good things to say. I don't know what happened. I am lonely without myself.

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Pearls, I am glad you are using this forum to vent your frustrations and despair. I know how very difficult it must be for you to come to grips with all that has befallen you. I understand how you long for the "orginal me" and how depressing it is for you to accept that the original may be lost forever no matter how much you want to recapture it, no matter how hard you work. I would only remind you that there is no reason you can't build and shape a new version of the old you. Sure, it may not move as fast or work as well but it can still do plenty. It can obviously write beautifully. It can, as you have experienced, be productive and successful. I am sure it can, with good planning, still travel. The key is to coach the most out of whatever you have. The results may surprise you in a good way.

I agree with one of your earlier postings in which you quite accurately observed that depression is not a choice. However, that does not mean you are powerless to fight it either individually or with help. Sometimes medication works too. I am very mindful of the lethal dangers of depression. I lost my best friend and two close uncles to it many years ago. So whatever you do, Pearls, don't surrender to it. There is nothing to gain from that and a great deal to lose. You are still alive. That's something to celebrate. 

Take care.

Ron

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