As many folks now know, I lost my little brother Jason to HLH on Friday, June 22nd after a long hospital stay. I anticipate that I’ll be grieving for the rest of my life. My village has been incredibly supportive through this difficult time. Many of my loved ones have asked me how they can help me, and so I wanted to create a list of ways that I’m channeling my grief to honor Jason’s life and invite my community to join me:
- Register to run a 5K to raise awareness about HLH and raise dollars for research into this extremely aggressive & fucking mean autoimmune disease. After checking in with a close friend who works in medical research, and telling him how helpless I felt, he told me that one of the things that’s really needed is greater awareness into rare diseases so that we can better understand them and better treat them. Almost no one has heard of HLH. I’d never heard of it. It stands for hemaphagocytic lymphohistiocytosis — and it’s essentially an autoimmune disease that sends the immune system on overdrive. It attacked my brother’s organs — shutting down his kidneys, then his lungs in a matter of days. It’s currently treated with a protocol that starts with chemotherapy to suppress the immune system while the trigger must simultaneously be treated. In my brother’s case, he had mono and a terrible cold, and one or both of these had been the suspected trigger. However, if the trigger is misidentified, the treatment won’t be enough, and there isn’t enough research into what triggers HLH. In my brother’s case, it turned out to be a dental infectionethat hadn’t been identified. On July 22nd, exactly one month after my brother’s death, there will be a 5K to Fight Histio in NYC, and I’m running to raise awareness, to raise dollars, and to find a cure. Join me, or support me!
- 2. Join the bone marrow registry. Had my brother Jason survived, he would have likely needed a bone marrow transplant. As his sister, I had hoped I could be his match, and so I tried to mostly abstain from drinking and eat semi-healthy foods (this was a really stressful and traumatic fucking month, so let’s be real, some alcohol and candy also happened). It’s fairly simple to join the registry. Go to BeTheMatch.org, and request a swab kit. Then, just swab your cheek, place the samples back into the prepaid envelope, and send it back! Full disclosure, from what I’ve read, the actual process of donating bone marrow seems invasive and can be painful, but it can also be life-saving. It’s especially important for nonwhite folks to become donors: Right now, 2 out of 3 white people will likely find a match, and only 1 in 4 nonwhite folks will find a match. Register here!
3. Donate blood or platelets. I used to donate blood often in college, and I even organized a couple of blood drives, because UCLA very conveniently had a blood and platelet center right on campus, and they’d give you orange juice and cookies for your blood. I haven’t given blood in many years. You get older, and you forget that your 15 minutes of time and single pint of blood can save three lives. My brother relied heavily on blood and platelet donations to sustain him for nearly one month in the hospital. If you aren’t affected by the extremely homophobic ban on gay blood, schedule an appointment!
I’ll be giving *platelets* on July 9th to coincide with the blood drive that Stepinac High School is organizing in honor of Jason.
4. Look into becoming a volunteer firefighter, and then recognize when that may be too far outside your purview, so instead finally contact your landlord about replacing fire alarms. My little brother wanted to be a firefighter, and the test results that arrived the week he died showed that he scored very high on the most recent firefighter exam. I’ve heard rumblings before about volunteer fire departments and so I spent some time investigating this as a possibility before realizing that this was likely not something I’d be able to do. HOWEVER, like six months ago, my fire alarms were completely out of whack and ringing/buzzing/making fire alarm sounds in the middle of the night, so I disengaged them and went back to sleep and never thought about them again. In retrospect, this is an extreme fire hazard. So I finally wrote my landlord an email and asked him to fix them. Thank you for the reminder, Jay.
5. Because no matter how many times you burn me, I just can’t quit you, DC politics: Donate to the campaign of at-large DC Council candidate Elissa Silverman, a local champion for paid family leave. Without paid family leave, I would not have been able to be at my little brother’s bedside during his final weeks of life. When Jason was unconscious, he needed family to be his advocates in the hospital. Nurses changed over every two days, and anything that hadn’t been documented didn’t get communicated to the next set of nurses. With advice from a friend, and because I yearned to feel less helpless, I appointed myself hospital note-taker and worked to fill in the gaps during some of these transitions. Not only was it important for Jason to be surrounded by love during the end of his life, he also needed advocates and people who could make informed, potentially life-saving medical decisions while he was unconscious. This shouldn’t be a luxury for the few; it’s a basic necessity. I read this WaPo article over the weekend about this horrendous attack on paid family leave by former local legislators who hope to prevent one of our most progressive Council members from being re-elected, and if that article doesn’t make you want to support her campaign, well then maybe you have other good reasons, but I’ll be giving what I can. Give here! You can also directly support the campaign for paid family leave in DC. Give to the DC Paid Family leave campaign, or sign the petition!
- 6. Play “Somewhere” from West Side Story on repeat for an indefinite amount of days. This actually does nothing for anyone, but it helps me cry, which I assume helps me heal and healing may help me be less irritable toward others, I assume. Jason loved this song, and his high school’s choir sang it at his funeral service, and it’s been in my head and on my heart ever since.
Also, on my playlist on repeat is the song “You’ll Be in my Heart” by Phil Collins, because Tarzan was Jason’s favorite movie when he was little, and he loved the song so much back then. And Jay, you’ll be in my heart for as long as I live.
7. Last, as many of you are mobilizing to #KeepFamiliesTogether, remember that families are separated in the U.S. all the time — through all forms of state violence against parents and children of color, whether these are immigrant families who are separated, detained, and criminalized or youth in the foster system like me and my siblings who were separated for years when we were young. State violence isn’t new, and family separation isn’t new, and we have work to do in our our own backyards to build safe and accountable communities where we all take responsibility for each other’s well-being, without involving institutions that frequently cause more harm. The ask here is: Be a good neighbor, be a good village. Be like Jason, and wake your sister up and make her French toast for no reason at all.
For those who may be reading this who may be grieving Jason with me, I invite you to come cry with me on this playlist, and share with me memories you may have of Jay.
And, while I sadly couldn’t put this on a Spotify playlist, you can listen to my brother singing Frank Sinatra’s “Come Fly With Me” below.