My GBS Journey One Year Later
September 26, 2018 at 11:15 pm
“Life is a journey, not a destination.” This is one of my favorite quotes. Tomorrow, I will return to work on a part-time basis after nearly a year. When I left for work on the morning of October 19th, I never could imagine that 4hrs later I would be paralyzed from the neck down with difficulty breathing, seeing and speaking at times.
Over the last 11 months, I’ve had to learn how to do everyday task all over again. Some I still am unable to do or do with limited capacity. I went through every stage of grief, but NEVER questioned God why. At first, I was in such denial. It was almost like I was an outsider looking in. It wasn’t until the 2nd code that was called on me while I was in the MRI suite that this nightmare became real. I found myself begging the ICU attending to keep me alive. I had such a hard time breathing at this point. The doctor told me that he had a low threshold for intubation. I told him I had 3 kids and a husband and that I needed to live for them. That same evening I found myself making my sister and brother promise me that if I didn’t make it that they would help my husband raise my children. I spoke to my husband about my final wishes re: my life insurance policies, trust for the kids and things I wanted them to know about me. We all know that we are going to die one day, but it’s vastly different when it’s staring you in the face.
There I was lying in the ICU after a very traumatic day of test, IVs, central lines and plasmapheresis. I was tired, but determined if I had to talk all night so my right lung muscles (my left already felt weak) wouldn’t weaken then that’s what I was going to do. I asked God to get me thru that night and not end up on the ventilator or the worse case scenario. He answered my prayer.
During my recovery, I’ve never asked WHY me. I’ve desperately tried to concentrate on one thing I could do today that I couldn’t yesterday. I’ve tried to be positive. It’s been tough and still continues to be. An independent woman, use to caring for herself and others is now totally dependent on others for her most basic needs.
At almost a year, I’m back to 80% of my baseline function. Although I’m not sure if I’ll ever be back fully, I’m grateful for how far I’ve come. Don’t let the smiles fool you. I struggle DAILY with pain and ambulation. But I would have NEVER gotten this far without my family, friends, neighbors, and thousands of physicians from around the world. GBS, is such a rare disease and patients often feel lonely in their journey. With the love and support of my community, I never felt that way. The amount of visitors, calls, texts, FB messages, gifts for my family, care packages, meals, and cards from all over the world, my family was blessed beyond measure. My heart is overwhelmed with the generosity of so many people, many I’ve never met before. The love I felt from so many and still feel today is what continues to get me thru the daily challenges of living with GBS.
The biggest takeaways from this GBS journey is that I love a little harder and truly live each day like it may be my last. It’s ok that what I wanted to accomplish today goes undone and that I can’t do it all. It’s ok to eat that bowl of ice cream, take a nap, and get my weekly therapeutic massages. I’ve learned self care and have become unapologetic in my thinking. My journey with GBS shows how someone’s life can be truly be changed in a matter of hours. I’m grateful for this journey for it truly has made me a better wife, mother, sister, daughter, friend and physician.
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