Nine Lives

This heartbreaker turns 5 in a couple weeks. No one can make me laugh or throw my hands in the air like Adelaide does. She was mad at me for taking her photo here but cuddling me 5 minutes later. She’s oh so sweet and oh so sour. A real life Sour Patch Kid. I could not love her more. (at West Long Branch, New Jersey) https://www.instagram.com/p/CH8oprcgzj8-Na8q8G5bPB8THanbjjYDw5g0JY0/?igshid=1kqauwdv0nxhe

GREETINGS FROM NIH! Everything is groovy, baby. A bit of a lupus flare but we’re cruising onward. My doctor got this miracle study drug I’m on approved for another six months which means I don’t have to go back to daily infusions at the hospital. Which is a relief because that was kind of crushing, mentally speaking. So I’m looking forward. What’s next? I don’t know. It’s hard to plan your life in the midst of a pandemic, a few short months out from a major health crisis. I’m getting my bearings again. I’m figuring it out. Stay tuned. For now, I’ll keep going and hoping for continued disease stability. What a gift. ♥️ #thatsicklife (at National Institutes of Health (NIH)) https://www.instagram.com/p/CF-YnHTATAX/?igshid=4g378gj446zj

Anyone here?

Sometimes it brings me to my knees. I lie on heating pads, I guzzle Advil and Tramadol and Oxy; still, I wake up at 4:30, my sheets knotted around me. I grasp the pillow and turn it to the cool side to blot out the fever and the tears I shed while I cried in my sleep. It’s so fucking hard and it’s also bearable; it depends on the hour. I’m thinking every day about what it would be like to die during this transplant and how brave I will have to be to accept the odds and go through with it. How choosing to do it will be choosing to believe in science, in myself, in my family and friends. I think of the girls constantly. And there are so many good hours in this day that began in pain. And some days we run toward baby goats. This shit luck, this garbage body— they are not gifts. I’ll never say that. But every day I am doing my damn best on borrowed time, and I can’t hate it for that. I am living.

When I say she’s sweet, I also mean she’s pure. She can be fresh and backtalk like a normal 5 year old, but Sadie never makes me wonder why she said what she said. She doesn’t understand bias, sexism; I have to explain racism and homophobia; she is blessed with enormous privilege. I tell her how that, how lucky she is. But about that sweetness! I am so rough around the edges and too cool for school and this kid skins open my tender heart. I want to love everyone, go into everything the way she does. I hugged her goodbye earlier today; she kept giving me extra hugs since she wouldn’t see me for a few days. When we wish on my crystals, she always wishes we had a sleepover every night. She used to take naps on my chest; she still falls asleep during sleepovers clutching my shirt or nose or hair. Best friends forever, she sings. Anything for you, Sadie. See you Friday, kid. #dopeniece #love #familyfuntimesforever #soulmate #fiveyearsold (at Baltimore County, Maryland)

I have to go to NIH on Sunday, which means more lost days, and more tiny traumas that settle into my skin and wait for a moment to disturb me. I have to go. I have to let them find a way to help me, even if it is hard and cruel and harsh. But more lost days. I want to make more of an impression. I want to leave a bigger footprint on the moon but I would just settle for Adelaide to remember me in case I am gone too long. Next week is just a week, though. #kpbgoestonih (at Asbury Park Boardwalk)

The NIH took my case on in January and in March, we found out my brother was a full bone marrow match. I’ve spent at least a week of every month of this year in the hospital but we still found a a way to have some fun in the summer and visiting my West Coast fam in the fall. In December we began to schedule this risky business but in the meantime, 2017 was a mixed bag, full of so much kindness toward me (I really milked this thing), my nieces lifting me up and my family and friends continuing to take care of me. I never pretend any of this is easy or without pain but I feel like the path I’m clearing on my way to survival is dotted with things that make me uniquely me, and I am only able to beat this path because of your support and love (see middle picture.) I also want to embrace those who suffer in silence in order to protect me; I hear you, I’m here for you, and I want to do better to be there for you; I can handle it! Thank you all so much, and happy new year. Let’s party before my transplant—I’ll be throwing a Goodbye Kelly’s Current Garbage Immune System in March. All welcome. (at The Corner of Genetically Mutated and Diabetic)

The NIH gingerbread house contest is dope as hell. Which one should I vote for? (It’s going to be Harry Potter.) Also, a warning: the security guards frown upon you licking the structures. (at National Institutes of Health (NIH))

I love all the #woodenwallsproject art, but this one resonates today. I've dealt with depression and anxiety for a long time, mostly as a byproduct of my physical illness. Constantly being interrupted by pain and infection, lab tests and hospitalizations can make it nearly impossible to find peace. Over the years, I've found medicine and meditation and a great therapist I cherish, but it is something I deal with every day. It's so much easier to talk about what physically hurts, about cancer and diabetes, but my mental health has been just as important as my physical ailments. I am the sum of many people and medicines that keep me upright. Please don't be ashamed to seek help. I'm tough as hell and I have been diminished by depression. It is not a sign of weakness; seeking help shows how strong you really are. #mentalhealthawareness (at Asbury Park Convention Hall)

On such a hard and sad day, I'm so glad I have this love to cheer me up. We are basking in hugs and cookies and Tom Petty. Wishing you all the same.

Thanks @beyondtype1! 5 years with type 1 diabetes, my least favorite out of my countless bodily errors. This disease requires constant thought, an ability to do quick math, lots of injections and pokes and a good sense of humor to keep you sane. So grateful to have found a community with Beyond Type 1 and my dreams of meeting our founder Nick Jonas remain strong, if not completely creepy. Here's to a cure, if not for me, then for the thousands of young children that will be diagnosed this year. #insulinforthewin #beyondtype1 #t1dlookslikeme 🥂💉❤️

Five years ago, I came home from LA for the summer to wait for Sadie. And then she arrived, and I changed my mind about where I wanted to live, and who I wanted to be around. Through all of the sickness and hospitalizations, she has saved me. Sending me videos, FaceTimeing me in the ICU, she has made me a better, more loving person. It's not bad here. In fact, it's lovely. And it's made lovelier by my Sadie. My number one girl, and the greatest stroke of luck God's given me. She is the light at the end of all the shitty medical tunnels. This is the drive I make to her house. I wouldn't change the last five years, not even a little bit. (at Highlands – Sea Bright Bridge)

Jack Antonoff bringing the damn house down. He says it's his best night of the year. #asburypark (at Stone Pony Summer Stage)