An Open Letter to the Spoonie who has had to Reinvent Themselves

Dear Fellow Spoonie,

First of all I want to say that I am sorry. I am sorry that your life didn’t go the way you planned and I am sorry for the heartbreak you have had or are currently bearing. I am sorry for everything you have and will have to give up because of your diagnosis. I am sorry that all anyone can say is sorry and things like “everything happens for a reason” or “you have to hit rock bottom before you go up.” No one tells you that when you are diagnosed with a chronic illness that if your chronic illness is progressive, like mine, that you will have to reinvent yourself and your life sometimes more than once.

I want you to know that you are strong and I respect the hell out of you for getting back up. I want you to know that you are literally facing one of toughest mental and emotional battles of your life and certain heartbreaks will never completely go away. I want you to know that I understand your battle.

When you reinvent something it means the former version has died and you are keeping some things the same but changing others. After I was diagnosed in 2010, I had to change my life and my lifestyle to battle the RSD/CRPS. In 2012, I had a career ending injury (that was EDS related we just didn’t know that at the time) and started teaching and getting my certifications. In 2014, I got my certs, created a new career for myself, despite my age I was a respected teacher, and started college. In November of 2014, I had a reaction to a medication and almost died in the hospital. Over the course Nov 2014-Nov 2015 I had almost died, had ICU stays, surgery, infusions, amnesia, EDS diagnosis, multiple subluxations/dislocations, had to leave university, and was in a wheelchair. The kicker was that I lost another career as a teacher. To be honest I lost everything, including myself. In 2016, I got back on my feet (literally), back in school and started my own company. At the end of 2016 I had a studio owner threaten to sue me over something I had no involvement in and the EDS started to become more progressive and had even more subluxations/dislocations. In 2017, I had to officially put school on hold when I started fainting and suffered some serious falls which resulted in the Dysautonomia diagnosis. During that year though I was able to build my company and build my career all while having the most progressive part of EDS attack my hips and whole body. Knowing your connective tissue is deteriorating inside of you and dying is horrible. Knowing that my doctors can’t do much more is heartbreaking, and knowing that I can’t do all I want to for and with Off Season Training is heartbreaking. Now it is 2018 and I have in total, since July 2015, had too many subluxations/dislocations to count and have so much excitement and so much sadness in my life at the same time. I am sure you feel or have felt the same way.

If you are struggling what I want you to know is that you are never going to stop reinventing yourself- even if you hadn’t gotten sick. Every day plans I have change because of my body, and the goals I have get pushed to tomorrow. Everyday I get to become a better me, even if and especially if a better me is lying in bed listening to my body. Everyday I get to grow this company even if it is not how people traditionally do and even though it is not how I imagined it.

Most importantly though every day you get the same opportunities. 

Having to reinvent yourself in some ways is good because you never stop growing, but it is also hard to be content if you can never stay in the same place. My career is very important to me and I’m only in my early 20’s and have lost 2 careers and am onto the 3rd. I wish I could do things the way everyone else can, but I also wouldn’t be able to be as good as I am at my job if I hadn’t gone through all of this. I wouldn’t be writing this letter if I hadn’t gone through this myself, and you wouldn’t be reading this if you haven’t gone through or weren’t going through this.

I know you never expected to have to do this.

I know it is unfair.

I know you are tired.

I know you are overwhelmed.

I know your are frustrated.

I know that you are screaming at God and don’t understand His plan.

I know that you cry in the shower so others can’t hear you.

I know that you feel your life isn’t worth living.

I know you just want to be DONE.

I know.

Nevertheless I know that you will persist.

I know you will carry on.

and I know you will turn your setbacks into comebacks.

Because thats what fighters do. They just keep going. You are a fighter and you will too. Maybe you are reading this and don’t believe me and aren’t there yet, and THAT IS OKAY. It took me lots of grieving and still some continual grieving to feel that way too… and some days I don’t feel this way at all. You are allowed to feel the way you are feeling and you are allowed your ten minutes. I may not know you personally (even though I would love to) but I know that you are strong and relentless and will find a way to get where you want to be. I didn’t start out as a chronic overcomer, I became one overtime and you will too. There are many ways to reach a goal I should know, I’ve tried a million different ways and am slowly getting to where I want to be.

So if you are currently reinventing yourself I salute you and am cheering for you. You will do it even though the heartbreak of loss is heavy. If you are a Christian, you already know that God sees your struggle and hears you and wants the best for you. Sadly we live in a world of sin and bad things sometimes happen to good people. If you let Him though He will give you the strength you need to bear this burden and start again.

“For I am about to do something new.
    See, I have already begun! Do you not see it?
I will make a pathway through the wilderness.
    I will create rivers in the dry wasteland.”

Isaiah 43:19

I know the task at hand is large but you are capable and when you are ready will be able to overcome.


A spoonie that nevertheless persisted and is a chronic overcomer

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