Keep On Keeping On

Another myasthenia gravis (MG) awareness month has come and gone. It felt like it flew by this year. I was battling a stubborn upper respiratory infection, finally got in to see a new MG specialist, attended my first art event as a guest of honor, and organized the art auction to benefit the Myasthenia Gravis Foundation of America (MGFA).

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I already shared in an earlier post about what precipitated the crazy idealistic idea to organize an online art auction to raise funds and awareness for myasthenia gravis. I reached out to a handful of friends in the art community that I’ve gotten to know through intentional communities of artists like CYL Community and Rising Tide Society. I also got in touch with my friends in the MG community who, like me, found art to be a beneficial part of life after diagnosis. Some of these contributors are also friends and family of MG patients who jumped on board too. 

So in those 6 weeks, we gathered 18 contributors and 34 items from across the US and Canada. And in those 4 days that the auction was live, we raised $1,092 for the MGFA. Below are just a few of the items that were part of the auction. I’m working on packaging and mailing them (after I finish this post and my cup of coffee!).

Even more important than the money raised was being able to watch my worlds collide – communities coming together to support an organization and a fierce/tight knit community of patients who often go unnoticed. I am totally exhausted in the best way possible because I was reminded of exactly the reason why art means so much to me. It draws us together. That gives us the tools we need to be purposeful. And then it turns us outward, allowing a positive impact to be made in our surroundings and our communities. Just with a little art.


 Why do I continue to do this awareness thing year after year?

It might get old to see MG posts from me every year around this time, or to see the medical updates I post when I get important news. Dealing with MG gets old, so if someone might feel exhausted by my posts I would encourage them to stop and think for a minute, “if I am getting tired of seeing these posts, then I imagine Kait is probably feeling very tired of managing this incurable disease for the last 15 years and for the foreseeable future.” MG stays with me year after year with no end in sight. I’ve committed to continue sharing my story because life with MG is something I have to manage day in and day out long after the walks roll through town and awareness month is over. I’m not alone either. There are about 100,000 of us in the United States.

Doesn’t it get repetitive and discouraging to do the same thing over and over again?

Yes, sometimes it does. There are days and seasons where I honestly do not want to try anymore. And my husband usually holds my hand, calls the dog over to sit right next to me, and tells me why I need to keep enduring, keep sharing, and keep on keeping on.

There are people I know and care about who just can’t connect with me over this. There are other people who ignore it or mock and judge my efforts. It comes with the territory. When you are publicly vulnerable, you leave yourself open to disappointment and criticism. But honestly, that is their decision and I can’t do anything to change their mind. What I can do is remember that for every instance that I could let turn into swelling disappointment, there is an alternative. I am encouraged, supported, and surprised by someone else who wants to dig in the figurative dirt with me. They might not fully understand MG, but they want to try so they dig right in.

So to those of you who choose to jump right in with me on this, I am grateful beyond measure. Even your smallest and most nuanced acts of kindness and support buoy me up to get through the days were life feels like a flood. And to those of you reading who aren’t quite there yet – I hope one day you will be.

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