What lies within us…

It’s been quite a while since I last wrote. As I mentioned in my last post back in November, things were a little crazy in my personal life. And the last few months have continued to be a bit of a roller coaster ride, so I haven’t had the focus or the time needed to write. However, things have finally settled down and things are looking up, so I am back!

I was recently invited by a doctor to speak at the University of Alberta, where I shared my experience with GBS, with over two hundred 2nd year medical students. Being able to talk to future doctors was an amazing opportunity for me, and I knew that by sharing my story, I would be educating them what Guillain-Barre is, from a PATIENT’s perspective.

Talking to them about GBS felt a little strange at first, considering it’s usually the medical field that does the talking when it comes to rare medical conditions… however it was a very important message for me to deliver since I had my fair share of challenges with doctors and nurses along the way. And not because they were difficult or challenging, (because most were actually amazing and accommodating) just at times, some of them didn’t quite know how to deal with GBS because they had never dealt with it before.

My goal in speaking with these medical students – if they ever have a patient with Guillain-Barre – was to teach them to truly get to know these patients and their cases individually. GBS is so different from case to case, and what someone’s experiences, struggles and even recovery looks like, can be completely different from the next person’s. It is important that these doctors realise that they can’t just go by the “textbook case” every time. There is no “textbook” case of GBS and everyone’s experience is different. In a “textbook case”, I should have hit my plateau (absolute worst) a lot sooner than I did. In a “textbook case”, I shouldn’t have had issues with my eyes, or severe nausea, but I did. In a “textbook case”, I should not have been walking for at least 2 years, but I walked in less than 5 months. Sometimes, what the books, or even what the tests tell them about GBS, are not the way that things will go.

I’ve met some GBS patients that were paralyzed but had zero pain, where I was dealing with pain that was often unmanageable. I’ve met patients that their muscle function came back in their feet and legs first, and then in their hands and arms – where with me it was the other way around. I’ve met patients that spent as little as a few days in ICU, and others that spent over 6 months. I’ve met patients that were told that they would be at their absolute best after 2 years (which is also what I was told) but 5 years later, they are still improving and getting stronger. I continue to say time and time again – everyone’s experience with GBS is their own and may not look like someone else’s. The doctors (and nurses) need to get to know exactly what the needs of that patient are and go from there. What works for one patient may not work for another.

For example, with me, my psychological needs were more important than my physical needs – to me, it was more important that I be at home with my newborn daughter, than it was to spend another few weeks in rehab. Maybe I would have gotten stronger and walked a little sooner had I stayed, but that wasn’t my priority, being with Casey was. Luckily, my neurologist at the Glenrose hospital understood that and released me after three weeks instead of another several.

Overall, the talk went really well, and I got to answer some questions, which I thought was very neat. The most important thing that I hoped that these medical students got out of my talk was for them to treat each and every case of GBS individually.

With regards to other advocacy work I have going on, I continue to do whatever I can to create awareness. I still put on a support group in Edmonton every three months and I continue to email people around the world that have questions for me about Guillain-Barre. In May, I will be attending a GBS/CIDP conference in Vancouver, and we will also be putting on our annual Awareness Picnic for GBS/CIDP Awareness Month the weekend after. Stay tuned for more details!!

In my personal life, as I mentioned before, I have gone through quite a substantial amount of soul searching, and I can say that I have grown and changed more in the last six months than I have in my entire life. GBS changed my entire outlook on life and I have been aspiring to not only give myself the life that I have always wanted, but to also be the person that I have always wanted to be… I know firsthand that life is just too short not to do that now.

My life has been going through a lot of changes in the last six months, one of those changes being that my husband and I have decided to move forward with a permanent separation. What led to the breakdown of our marriage is not something that can be explained in one conversation, nor should it be, but we are doing what is best for the three of us. And what’s best for us is that James and I move forward as friends. Our number one priority will always be our daughter Casey and the three of us will always be a family. Yes, our relationship looks a little different now than it did six months ago when we were still together, but I know that we will continue to be in each other’s lives as great friends.

I will forever appreciate all that James did for me when I was in the hospital dealing with GBS, and there isn’t anyone that I could imagine going through that experience with. I could have not gotten to where I am today had it not been for all of his love and support along the way. He is a huge reason that I was able to get back to my life. And although I did write my experience with GBS, in my book titled, Happily Ever After, I still believe that I am going to live my version of “Happily Ever After”, it will just look a little bit different now. And I am ok with that.

I think it is very important (for everyone) to take a look at the situations we are put into; at the struggles that we are faced with, and keep moving forward. Yes, of course there are going to be hard days, but what will get you through those days, is trusting that you will make it through them, and trusting that everything happens for a reason.

I constantly get asked how I am coping and how I am managing to stay so positive through all of this, and the key to my happiness, is accepting where I am in my life, and making the best of it every day. And that doesn’t just apply to my situation, it applies to any situation. Life isn’t always perfect, but as I have learned from GBS, it is most definitely worth it.

Looking back on my experience, I see that GBS was a blessing, as it has prepared me for every challenge that I will ever have to face in my life. Because in retrospect, no matter how shitty of a day I may have, no matter what sort of drama comes into my life, nothing can compare to what I went through with GBS. Even in my darkest days in ICU, when I thought I was going to die, I eventually got through it. There were times that I didn’t think I would, but I did, and now I’m a lot stronger, and a lot more capable of handling tough situations. I realize, and I hope others realize that even when things are going so terrible you almost can’t breathe; it won’t always be like this. Things will get better. And not only will you get through it, you will be stronger because of it. You just have to take each day, one obstacle at a time.

Because of my experience with GBS – knowing everything that I made it through in the past- I have been able to maintain a very positive outlook in the challenges I have faced over the last few months. And now that I’ve gotten past them, I am in a very good place. I am happy and very excited about my future and what’s to come in the next chapter of my life!

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3 Responses to What lies within us…

  1. Brooke Adkins says:

    Holly,

    I just read your story and had to email you. On August 4, 2014 I was diagnosed with mild case GBS. It started in my legs and then moved to my arms and hands. I was in the hospital for 2 weeks and was able to go home to my two children and wonderful husband. I am going through OT and PT now and as you know it is very painful. After seeing your video I realized that I am so blessed to have caught GBS at an early stage. All of the test and medication is nothing like what you went through but I feel connected to your story. Thank you for being a strong model for me to look up to. I have some challenges but I am now able to face them with a renewed vision.

  2. Pete Reid says:

    Holly very inspired by your video. I to got GBS, in May 2011. I’m just starting to walk without anything. I still use a wheelchair, 4 prone cane around the house. But I’ve been walking more lately. Outside I use a walker. I know each persons recovery is different, can you share with me, if you still have joint pain, muscle stiffness and any balance issues. It’s going on 4 years for me and I just wanted to know. Also my fingers are still curled and loose but weak.

    God Bless You.

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