The Blog

Everything is Awesome, Even When It’s Not

I spent two whole days making these piles, now you have to look at them.

I spent two whole days making these piles, now you have to look at them.

Hey folks. I would’ve written sooner, but I was buried under a mountain of Hospital and Insurance paperwork.

So, how am I doing?

I’m pissed. I had already started a big essay on gratitude and how you should always count your blessings, no matter what problems you’re facing–and then I got one of the most undeniable blessings of my life.

Well, writing is hard, and I’m not gonna let some good news screw up a perfectly good blog post, so I’ll save the news for later.

For now, I’m going to expound upon…


Shit happens.

Personally, I’m dealing with PNH and Aplastic Anemia, but it’s been an extra-specially shitty year for a lot of people. Michael Brown. Robin Williams. Harold Ramis. I’ve seen old friends pass away far too soon. Serial rape, mass murder, and the worst of humanity are constantly present in our lives.

For some, even the Cowboys losing to the Redskins can be pretty tough.

At times like this, it’s easy to feel like the whole world is burning. But guess what?

There has ALWAYS been shit.

For all human beings, since time immemorial. And there will be plenty of shit in the future. But if you’re reading this, you’re STILL HERE. Don’t forget THAT shit.

And if I’ve been able to keep MY shit together, I know you can, too. We’re all much tougher than we think or feel.

So when you feel like you just can’t take this shit any more, remember that all you can really do, is keep putting one foot in front of the other–which is also the only thing you can do when shit is awesome.

So let that shit swirl around, and try to appreciate your life for a minute, shithead.

Now, as required by my elementary school teachers, I’m listing the things I’m thankful for.

– I’m thankful for meditation, which allows my frazzled mind to find rest. For a westerner’s look at Zen and getting centered, I recommend the classic Zen in the Art of Archery. [Bonus: only 70ish pages].

– For my friends and family, who’ve sent food, given blood, and sent hundreds of messages online–I really can’t quite put it into words, how much you’ve actually given me strength, but thank you. Many of you have been swabbin’ cheeks and takin’ names, for the Bone Marrow Donor Registry–know that you are doing a great thing.

For those who don’t realize just how easy it is to join, my brother Neil shows you here—the cheek swab takes about 30 seconds.

I'm not proud that others' misfortune puts me in such a better mood, but I am grateful.

I’m not proud that others’ misfortune puts me in such a better mood, but I am grateful.

– I’m grateful for the little things: the fact that Sour Patch Kids get quite a bit softer if you leave the package in the sun for 25 minutes (NOTE: This may also cause cancer), and that my badass, cancer-surviving Uncle Joe, emailed me the picture at right.

– I’m grateful for the privileged perspective I’ve been given by these chronic conditions. I may be emotionally hardened, but I’ll never again take life for granted, or let it kill my spirit. It’s grounded me, revealed my priorities, and focused my writing, which allows me to deal with it all through something I enjoy.

– I’m grateful for modern medicine, and the doctors who’ve made it their life’s work to treat Aplastic Anemia and PNH, which is so rare that many doctors have never heard of it. I was diagnosed within 36 hours at Cedars, and after 4 weeks on Soliris (which took 14 years and $1 Billion to develop), my level of red blood cell destruction (hemolysis) has returned to NORMAL! This means I’m no longer at increased risk for deadly blood clots or stroke. It’s not the Mardi Gras-Shaming, Party-throwing result I mentioned, as my bone marrow condition has not lifted, but we’re on our way to the good news…

– I’m very thankful Stephanie and I are GOING HOME FOR CHRISTMAS this year! We’ll be memorializing Aunt Anne instead of laughing and arguing with her, but we weren’t even sure a trip would be possible until Dr. Lill decided to hold off on my ATG treatment (immune-suppression…a week in hospital & 3 months of drugs) til after the holidays. But even that is not the good news I was alluding to…

The test results are in, and my sister Meghan is a MATCH.


That means, if we end up going through with the bone marrow transplant, there’s no need for a long, anxious search—we know who my donor will be. Now, if the ATG doesn’t work…I’ve got a trump card. I’m a “hope for the best, plan for the worst” kind of guy–well, “the worst” just got a whole lot better, and my hope is feeling stronger.

Meghan was a 1-in-4 chance to be a match, and this after I just hit a 1-in-a-million rare disease diagnosis.

The McDevitt hot streak continues.


Those of you who’ve yet to sign up to Be the Match may now be saying, “Well, my friend doesn’t need my help, I don’t know if I want to go through all that for Joe Schmo.” Did you think you were gonna be a match for ME?? That is a 1-in-a-quintillion shot, my friend.

This was ALWAYS about Joe Schmo. I’ve seen, read, and heard a lot about people who’ve gone through transplants without a perfect match, and there is a very high rate of intense suffering and mortality. You can save a real person from that fate.

And since I consider transplant patients to be a huge segment of my audience, you really would be helping me. I mean, I finally found an AUDIENCE, and it’s like, 20 people who have my rare disease. So if you could help them stay alive, that would be huge for my career!

It’s easy to sign up, and I promise you the donation process has almost no downside. So don’t be a jerk–swab like it’s your job.

Knowing that I’ve got my match, I feel a HUGE sense of relief–I hope my fellow patients feel that same relief soon. I am extremely, extremely BLESSED, and I want you to know–I would’ve felt that way no matter what the results were.

"Adult human people who purchased season passes to 6 Flags"

Adult human people who purchased season passes to 6 Flags

This process has been a rollercoaster ride (super-original metaphor, right?? Let’s freshen it up and say it’s a mine cart ride), and I feel like Steph and I have reached the crest of that BIG drop–we can finally see what’s ahead of us, and the tracks don’t look quite as rickety as we feared.

The carts in front of us even seem to be landing in one piece. I’m gonna be okay.


As grateful as I am, it’s hard to fully process the good news, amidst all the shit

So I’m just gonna hold my hands up outside the cart, take the plunge, and SCREAM the words to this song…

Everything IS awesome–whether you’re down or you’re celebrating.

Happy Thanksgiving, folks.




Got something to say? Feel free, I want to hear from you! Leave a Comment

  1. Mom says:

    Kevin, you are a wonder. So proud to be your Mom. You are a h____of a writer.
    You are dealing with more than I ever imagined and are showing such courage. Couldn’t love you more.

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  1. What Could Be Worse than Blood Diseases and BMTs? - Kevin McDevitt - Writer. Filmmaker. Rare Disease Hunter.Kevin McDevitt — Writer. Filmmaker. Rare Disease Hunter.

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