Life Goes On…

I can’t believe it’s already November…the months are just flying by lately. Having a young daughter that literally seems to be growing before my eyes definitely doesn’t slow time down either, that’s for sure. It’s crazy how much she changes from week to week! She is such a little sunshine and brings so much joy, love and laughter into my life
An update on some of the things that have occurred since my last post:

My girlfriend Sarah and I completed the 5 km “Climb of Hope” run in September, which was such an amazing accomplishment for me. Although this was my second 5km race, this was the first time I ran one – and this was no easy course!!! It was in a ravine so a lot of it was uphill, it was plus 20 and very sunny, plus we had to climb a huge staircase near the end of it!! My thighs were burning for days after! I was very pleased with myself; I knew that this was not a very competitive race (its purpose was fundraising for Cancer) and a lot of people weren’t running all out for it, but I was still able to keep up with the more serious runners. For someone that has had GBS, I think that’s pretty amazing.

Although I had known where the race was, I wasn’t quite sure where we would end up, and I couldn’t help but smile when we ran across the pedestrian bridge over the North Saskatchewan River and through the river valley. It was almost exactly 2 years prior to the day that I went to the exact same spot for my first “official” walk after GBS. I talk about that walk in my book – about how I couldn’t go more than ten minutes because my legs weren’t strong enough yet – and I just thought it was really neat that two years later I was able to do that same path, only running! It was such a great achievement, and it made me even prouder when I saw that I placed 77 out of 315 people. Not bad at all!!

Although I stay in contact with many GBS patients around the world through email, I don’t get to meet any of them in person- which makes it tough when all I really want to do is show them that they will get better, like I have. But recently I had the pleasure of meeting a young woman who was diagnosed with GBS a few months ago, in person.  A mutual friend got me in touch with her family, and I went to visit her in hopes of lifting her spirits.

Not only was she in the same hospital that I was, she was in the very same room in the Intensive Care Unit that I was two and a half years ago. It gave me shivers to think of being back in that room; although I have been back to the ICU many times, I have not stepped into that room since I was rolled out of there on my air bed in May of 2011. Being back in ICU always brings back memories for me; the smell of the air, the sound of the machines beeping and the overall atmosphere- it all brings me back to the time I spent there. But I can handle it and it is never hard going back. However, I was nervous about going back into my old room and I wondered if being back in there would be too hard. This was the room where I spent 70 days laying paralyzed, the room where I went through the most pain and suffering I’ve ever been through, and the room where I had come to terms that I was probably going to die in. But despite these feelings, I was determined to walk in there with my head held high and be as positive as I could for the young woman with GBS; because I knew that’s what she needed.

As it turned out, when I got to ICU to see her, I received the wonderful news that she had improved and was moved to a regular ward. I’ll admit I did feel a sense of relief that I didn’t have to go back into my old room! When I got to her room to meet her, it was definitely hard to see her in the state that she was in; physically unable to move much of her body, and emotionally drained. I could tell that she was in so much pain both physically and mentally. She constantly shifted her body, struggling to find a comfy position that would ease the pain, likely wondering when she could get her next dose of medication. I had actually forgotten about all the pain but as I watched her it all came back to me. She had tears in her eyes for most of the time I was with her, likely trying to hold back the tears just like I had so many times. She made one comment about how she just wanted to wake up from this nightmare and I just wanted to cry. Because I knew exactly what she meant. It didn’t matter that she was being told that she would get through this one day, what mattered to her was that she was going through hell now. I knew it all too well.

I spent about an hour with her; she asked me questions and I tried to answer them in the most honest yet motivating way possible. She needed to know that yes, this was going to be a very difficult journey – learning to walk again would be one of the hardest things she would ever have to do in her life, but she would get through it, and she would come out of it even stronger, just like I did.

I had tears in my eyes when I left her room that day, just knowing exactly how she was feeling. But deep down, I knew that one day she would get back to her life, even if she didn’t believe that quite yet. I had so much faith in her, even if she didn’t have it for herself.

I have visited her since then and brought along a picture with the quote “Courage does not always roar. Sometimes courage is the quiet voice at days end, saying, I will try again tomorrow.” This is the picture that I had hanging on the wall in front of my bed in the ICU. We put it in front of her bed as well, so that she could look at it every day, just like I did for many weeks. I knew it was just words on piece of paper, but I hoped that these words inspired her the way that they did for me.

I recently received the exciting news that she was transferred to the Glenrose for rehab…I am very excited for her as I know how amazing the Glenrose is and how much it will help her get back to her life. And I look forward to seeing her again soon and seeing all of her progress!

Litfest was just a few weeks ago, and I was so honored to be a part of such a wonderful festival. Along with a few other authors, I did a reading at the Writer’s Cabaret, where I shared a little bit about my story and read a piece from my book. Like I have mentioned before, I hate public speaking but slowly but surely I am getting more comfortable in front of an audience. I think it definitely helps that I am talking about something that I know so well and that I hold so dear to my heart!

Being a part of Litfest gave me the ability to partake in other author events, and one that I was extremely excited to attend was the one for Amanda Lindhout. She was the young journalist that was kidnapped in Somolia and held captive for 15 months, and she wrote about her journey, in the book titled “A House in the Sky.” She has had a lot of publicity; she is on Oprah’s book list; and not surprisingly, the event was sold out. Within minutes of hearing her speak, I couldn’t help but feel a connection to her. Now obviously what we went through was COMPLETELY different; I can’t even imagine what it was like for her to be kidnapped and brutally abused for 15 months in captivity, but there were definitely some similarities that I felt from my story to hers. We were the same age when we experienced these dramatic events, and these events were completely life changing to the both of us. Hearing her talk about how she struggled to make it through every minute of every day certainly reminded me of my own time that I struggled. How she talked about what she would do if she made it out alive; how she sometimes prayed that she would just die instead, these things I felt as well. But the thing that I connected with her the most on was the way that she came out of this. After all that she had been through, she has come out as an even stronger person. She is now doing all she can to help others, and she has even started The Global Enrichment Foundation, a non-profit organization dedicated to igniting leadership in Somalia through educational and community-based empowerment programs.  I read her book in under a week and wow is all I have to say – the things that she did with her mind to be able to get through the horrendous things that happened to her is beyond inspiring. I strongly recommend reading this book; it is definitely eye opening and extremely inspirational!

Being a part of Litfest opened up the door for some free publicity, and I was approached to do interviews with two Edmonton based media outlets. The first was AMI-TV, a Canadian television channel that broadcasts media to those that are blind, deaf, learning disabled, or learning English as a second language. The second was CJSR; the campus based radio station at the University of Alberta.  I am always grateful for the continued interest in my story – being able to share my experience with them is such a great way to create awareness about Guillain-Barre syndrome. The interview with AMI-TV aired at the end of October, which can be viewed HERE. The interview with CJSR is still being edited but I will post once it has aired.

I am very excited for my next big endeavor – my first speaking engagement at a Women’s Empowerment Conference, this upcoming weekend. I am very excited to share my experience with GBS with the women at the conference and hope that my story inspires and empowers them to live their lives to the absolute fullest!

In my personal life, things have been a little crazy and hectic, and like I mentioned before, this seems to get in the way of me writing as often as I would like to….but I will certainly try to keep you updated as often as I can!

Like I have written about many times, Guillain-Barre has changed me so much as a person, and continues to change me every day. Although it was almost three years ago that I was diagnosed- and there are often days where I go by without thinking about it – there is not a day that goes by where I am not making decisions based on my experience.

What I went through changed my entire outlook on life. I am constantly thinking about who I am and who I want to be, and aspiring to become that person. And unfortunately, (or maybe fortunately, I don’t quite know) this has caused me quite a bit of confusion about the life that I am leading today. I am taking some time on my own to do some major soul searching and hope that the answers will soon come to me.

I know a lot of people can’t relate to what I went through, as most people don’t experience a near death experience under 30. But what people need to realize, is that near death experiences profoundly change people’s lives. My experience with GBS was a life changing event; it moved me, it shook me up, and it completely changed my perspective, on EVERYTHING. And I have embarked on this new road to self-discovery and self-development. Most people don’t get serious about bettering themselves as a person until they experience a life-changing event, and this is where I am currently at. I know how short life is, and just how quickly things can change at any minute. Life is too short to be anything but the person you want to be.  So bear with me as I continue on this journey of mine that I call “Life”.

And one thing that I have learned about life, is that it always goes on. Not matter what, we all get through the hard times, and come out even stronger than when we went in. In the end, everything always works out the way that it is meant to.


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 Life Goes On…

  1. DeniseGlidden says:

    i too had GBS at age 21. Have some residual and can relate to all your stories. I just ordered the book .

  2. Marilyn Rose says:

    Once again I cried…only this time I cried tears of joy and pride for the Inspiring Woman you have become. You always enjoyed life and lived it with joy and excitement, before your experience with GBS, now you have just added a new dimension and connection to your inner self. You have already figured out what it took 50+ years for me to realize…that what happens in life, happens for us not to us and that our experiences can bring deeper meaning into our lives, or break our Spirits. You have choosen to accept the gifts your experience with GBS as given you, with Grace rather than fear. Congratulations That takes a lot of courage. And courage lives in the heart not the head.The journey from the head to the heart is often the hardest journey to enbark on, and staying in one’s heart, takes practice.Thanks for showing so many other, the only way to get there is by being real and by finding the gifts in everything. You are a true hero! Love you so much!!

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