May is Ehlers-Danlos awareness month. There is no one who was more eager and willing to take on the challenge of raising awareness for Ehlers-Danlos than Jaquie Beckwith more affectionately known as Chronically Jaquie.
It was in great shock that I found out last week that Jaquie went home to be with the Lord on April 29th.
The news found me as I was mindlessly scrolling through social media while on the phone with my pharmacy. I thought it was just a rumor and that it couldn’t be true. The pharmacy ended up hanging up on me after a few moments of no sound coming from my end. It took me a minute to process and another minute to find the note online from Jaquie’s husband, Judd, before the news hit me that she was truly gone.
Chronically Jaquie is the first person that made me realize that maybe people actually care what life with chronic illness looks like. Jaquie allowed the world to follow her journey with: her service dog Harlow aka Hippo, her life with EDS, POTS, MCAS and her laundry list of other diagnoses, her life with her husband Judd and everything else that came along with her life.
I was one of the 135 thousand subscribers to the YouTube channel “Chronically Jaquie.” If you watch any of Jaquie’s videos you will quickly realize that the 2 of us had a lot in common, from our numerous overlapping diagnoses to our EDS/ POTS service dogs, our love of pink and our mutual trust in the fact that God has a plan.
I’m not going to lie, it’s hard to trust in the plan right now because at 23 years old, Jaquie seemed way too young and with way too much life ahead of her for God to call her home. Death was never in God’s plan, neither was sickness, but evil has corrupted God’s plan and we now deal with these things on a daily basis.
I’m joyful knowing that Jaquie no longer has any tubes in her body and no more pain and I’m grateful for Jaquie and her family for allowing the world to witness the courage, steadfastness, perseverance, and joy that Chronically Jaquie demonstrated.
My heart is humbled as I realize without Jaquie’s boldness and vulnerability, I would not have my independence through Magnolia (my service dog) or have had the courage to take the next step in my own health journey regarding receiving fluids and placing my port. My life is better because of Jacquie’s influence on it.
To her family…I want you to know that it was Jaquie who made us feel not alone in our battles and now it is our turn to let you know that you are not alone in your grieving. We are Jaquie strong and we will “Keep Moving Forward.”
A tribute video to Jaquie was made and is beautiful, but just as beautiful are the comments on the video from spoonies and others who wanted to pay tribute to a beautiful person…
You can find the YouTube channel, “Chronically Jaquie” below…https://www.youtube.com/channel/UCKaX0dQwEUgTafzCZ2yEjUQ/featured
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