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Getting Diagnosed With MS on Top of Multiple Other Conditions

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I never quite let my mother be bored when I was a child. From being born c-section with spina bifida two weeks late, to having over 100 surgeries since then, and now, at 27, she’s coming with me on a new journey.

Primary progressive multiple sclerosis.

I told you about those 100 surgeries, right? Well…I would sooner go through all 100+ of them again before having to watch my mother struggle through learning that her oldest son has a disease that will never go away, and to date has no cure.


We joked about PPMS. I mean, I’m a left-handed red head with spina bifida, hydrocephalus and Arnold-Chiari malformation, who has walked with crutches, beaten countless life-threatening infections and graduated from all the things the “professionals” said I never would.

So I’m a pretty small statistic.

When we learned of my MS, that stat got a whole lot smaller. It was like learning you were standing on a train track and your shoes were glued and your laces weren’t coming open. This thing is coming and it’s going to hit me and there is nothing I can do this time.

I went through all the stages of loss. It sucked because I’m the guy my friends look to for strength. I’m the “big brother” to my friends 10 years older than me. I’m just that guy. I learned what it was like to be under that cloud…but I also learned what it was like coming out from under it too, and let me tell you – it’s glorious!

I found myself a new person full of drive, and now I have a renewed idea of what it means to be alive. I will keep fighting for equal rights to access the same buildings I have for 20 years, I will fight for employment rights, I will fight for those who do not have a voice.

I would love to start a worldwide push for access. Let us not avoid places that aren’t accessible – let us push to make everywhere accessible!

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Thinkstock photo via Ruslanshug.

Originally published: June 23, 2017
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