One day I hope you get the chance, to live like you were dying

I am very fortunate to be as strong and healthy as I am today. It is astounding how far I have come. Two years ago today, I would have still been in the ICU with GBS…now I realize, that medically I was not dying, because GBS was not actually killing me. But mentally, I thought and prayed that I was dying. I know that had things been differently, I could have died, had I not made it onto a breathing tube in time, or had they not been able to repair my ruptured artery in surgery. So to me, what I went through is comparable to dying. And I honestly feel that going through what I went through has now given me the chance to “live like I was dying”.

I know what it’s like to have your life ripped away from you in the blink of an eye, to truly believe that you will spend the rest of your life in a hospital bed in the Intensive Care Unit- unable to move, speak or breathe on your own. I know what it’s like to believe that you are never going to be a real mother to the child you just gave birth to. I know what it’s like to be in so much pain and suffering that dying is a better alternative to living. And I know what it’s like to believe that there is no hope for a future.

After ICU, I saw myself improving and I saw myself slowly getting better; stronger and healthier. But although death no longer crossed my mind, I had a whole new set of problems and fears. No one came out and said it, but I knew that there was a chance that I would not walk again. So I know what it’s like to believe that you will be in a wheelchair for the rest of your life; having your family feed, wash and dress you every day. I know what it’s like to think about all the things you won’t ever be able to do again. And I know what it’s like to believe that your life is over.

So no, I was not dying. But all of these things that I felt have now allowed me to truly live like I was.

GBS has changed me completely. And although I’m sure some people can’t say they have seen a drastic difference in me, I know it’s there. Being able to “live like I was dying” has changed my whole attitude on life. Because of the fact that I was able to accomplish all of the things that I thought I wouldn’t be able to, I am much more appreciative now – ESPECIALLY when it comes to my health. I am appreciative that I can walk and do the things that so many of you take for granted. You just can’t imagine what it’s like to not be able to move your legs. Whenever I see someone in a wheelchair, I smile at them with so much respect. I know what they have to go through; I remember the amount of effort that goes into transferring in and out of your chair and all the difficulties with getting into places that are not wheelchair accessible. I know all the little challenges that come along with being in a wheelchair that most people would never even think about. I also have a new sense of empathy towards others dealing with any sort of health issues; an understanding of what they are going through, to some extent anyways. I know what it’s like to not know what is happening to your body and to wonder if you will make it out of this alive.

Being able to “live like I was dying” has changed my entire attitude towards exercise. I have always enjoyed working out, but generally it was something that I would do a day a week (at most) for a few months, and then would stop for a six month period. After GBS, I suffered from poor body-image – I had lost 30 pounds when I was in the hospital and although I was very thin and weighed barely anything, everything was “jiggly’ because I had lost a drastic amount of muscle from being in a bed for 4 months. I also still had a lot of loose skin from having a baby so I absolutely hated the way I looked. Then on top of all that, I was still very weak. I had finished all my physiotherapy and the PT’s had helped me as much as they could from their end, so I knew it was all on me. I was the only one that had control of it and that if I wanted to change it, I would have to do something about it. I knew that working out was the only way I was ever going to tone up and get stronger. And I knew that life was too short to not start right away. So I did, and two years later I am definitely in the best shape of my life. Working out has now become a part of my lifestyle – I am doing it at least three days a week and have been for over a year. And like I have said in previous posts, I have GBS to thank for that.

“Living like I was dying” has made a huge impact on my relationships as well. I know I may not always be, but I am certainly trying to be the friend my family and friends would want to have. My experience with GBS reminded me of all the great people in my life and that I needed to to spend more time with them all. I am surrounded by an amazing support system and I will always try to make time for those that matter.

Being able to “live like I was dying” has shown me how short life really is. I know that I need to get out and do the things I’ve always wanted to do and not put it off for years to come. You aren’t ever promised tomorrow. You never know when your life can be changed in the blink of an eye. I know now that I need to go after my dreams, and fight for the things I want, now. I don’t want to look back on my life and regret not doing things when I had the chance. I want my daughter to experience as much fun as she can and I want her to be able to look back on her childhood with love. So I am trying to give her the best childhood that I can. I don’t sweat the small stuff anymore; there are just so many minor problems that seem so minuscule in the grand scheme of things. And I assure you that your minor problems just aren’t worth the stress. I’ll say it again, life is too short.

“Living like I was dying” has even changed my relationship with myself as well. For those of you that know my mother Marilyn– you know how outgoing and charismatic she is. She has always been trying to make a difference in the world, and inspiring others with anything and everything that she is involved in. My mother actually does inspirational speaking for a living, and can walk into a room full of thousands of people and light it up. I have always looked at her with so much admiration, but I have always wondered why I didn’t get that part of her genetics – I am a very shy person (when I first meet people) and I despise public speaking. And I just never saw myself as ever being an inspiration to others. But that has all changed. Knowing the things I have accomplished – like learning to walk again, writing a book, and completing Insanity – it has all shown me that if I put my mind towards something, I can do it! I know how much I am helping others around the world, from the hundreds of messages and emails I receive. And I am so thrilled that I am inspiring others around me. This in itself has given me a new level of confidence and I can honestly say that it has changed how I interact with people – I am a lot less shy with new people and I have even done a few of my own (small) public speaking events.

Guillain-Barre was honestly one of the best things to happen to me. Life is so different now, and so much better. I am truly able to live my life to the fullest. And you don’t have to do what I did – wait until you get some terrible disease to start living like this. Now is the time to be that amazing person you have always wanted to be. Now is the time to be happy. I had my ENTIRE life taken away from me for months, and then…I was given it all back. You can’t imagine what that feels like – to think your life is over, and then one day you realize that it isn’t. That is a feeling I wish you could all experience, because it gives you a sense of appreciation like no other. And one day I hope you get the chance, to live like you were dying.

Live like you were dying – by Tim McGraw

He said I was in my early forties
With a lot of life before me
When a moment came that stopped me on a dime
I spent most of the next days, Looking at the x-rays
Talking about the options, talking about sweet time

And I asked him, when it sank in
That this might really be the real end
How it hits you, when you get that kind of news?
Man, what’d you do?

(He said)
I went sky diving
I went rocky mountain climbing
I went two point seven seconds, on a bull named Fu Man Chu.
And I loved deeper and I spoke sweeter
And gave forgiveness I’d been denying
And he said some day I hope you get the chance
To live like you were dying

He said I was finally the husband
That most the time I wasn’t
I became a friend a friend would like to have
And all of a sudden, going fishin
Wasn’t such an imposition
And I went three time that year I lost my dad

Well I finally read the good book
And I took a good long hard look
At what I’d do if I could do it all again…
I went sky diving
I went rocky mountain climbing
I went two point seven seconds, on a bull named Fu Man Chu.
And I loved deeper and I spoke sweeter
And gave forgiveness I’d been denying
And he said some day I hope you get the chance
To live like you were dying

Like tomorrow was a gift
And you’ve got eternity to think about
What you’d do with it?
What did you do with it?
What did I do with it?


About hollyaftergbs

Author of Happily Ever After - My Journey with Guillain-Barre Syndrome and How I Got My Life Back.
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2 Responses to One day I hope you get the chance, to live like you were dying

  1. lovely story see my daughters story about me,if anyone can be of help please contact Bob Martin.

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