Yesterday was a big day! It was the one-year anniversary of my GBS diagnosis - one year, one very long year. The lyrics to Seasons of Love from Rent keep running through my mind - “Five hundred twenty-five thousand six hundred minutes - how do you measure, measure a year?” In my case, by Months in the hospital? Weeks in Rehab? Days spent managing my care? Minutes waiting for doctors? Or, maybe, Months spent with my children? Weeks at the beach? Days spent with friends? Minutes enjoying plays and concerts? How about both? 

Yes, there are negatives. I feel like I lost a good chunk of this year. I have experienced excruciating pain and still have pain in my feet and back. I can’t work full-time. My mental health has been affected and I’m managing that but I have a way to go. 

There are many positives too. I learned that I am stronger than I realized and to accept my limitations.  Accepting help isn’t a sign of weakness. To me, it is allowing my vulnerability to be seen and being humbled and grateful by the outpouring of support. Your health is precious so don’t take it for granted. I found a new passion in advocating for others with GBS. I’ve done a few things I never would have done before. See the attached photo for proof. I would have never considered myself a tattoo person but here I am. 

I chose the turtle who is the mascot of GBS and three of them with colored hearts on their backs to represent my three children who were my rocks and inspired me to get better. They were incredibly diligent on “Mom Duty” and I’m not sure I could have survived without them. GBS has left a mark on my life and those of my loved ones. I wanted a permanent mark on the outside to remind me of everything I overcame. When I’m discouraged about something I can look at it and remember how far I’ve come.

Here are some random things I learned this year:

• Prayer, good thoughts, and positive vibes are real and extremely helpful. I have felt them throughout my journey;
• Follow the Golden Rule - Do unto others as you would have them do unto you. You don’t know your impact on people throughout your life as I have learned through this experience. I was given help by people from all phases of my life. In many cases, I have no idea how I affected those people but clearly I did;
• “Be kind for everyone you meet is fighting a battle you know nothing about.” This quote is attributed to many people but it is very true. Having an invisible disease has really brought this home for me;
• Plasma saves lives. Please donate!
• CPR saves lives. Please learn CPR and how to use an AED!

It is impossible to thank you all for your support this last year.  I wish I had some incredible words of wisdom after this crazy year, but, as my dear friend Teresa said, all you need to say is thank you so…

THANK YOU!

With Love,

Jackie

P.S. I doubt I’ll post here much anymore but if you want to contact me, please feel free to email me at jfkmadden@gmail.com.