Saying goodbye to someone is a very surreal experience. You don’t want the moment to be fraught with grief but yet you can’t escape the sorrow that hangs in the air.
My memories of the day leading up to my brother’s death are hazy. It was 7 or 8 at night when my brother Ben received a phone call from Jake. Jake had tried to call my mother and me, but we both missed his many calls.
Jake thought he was having a heart attack. He was screaming in pain on the phone. Ben tried to convince him to call 911, Jake refused. He couldn’t afford a hospital visit. Ben got in touch with my mother and she called 911. She then called Jake and to tell him the ambulance was coming. He screamed “no, I don’t want to go to the hospital” and hung up on her.
He tried to refuse treatment when the paramedics arrived, but it was protocol that they take him. At first they didn’t know what was going on. Later that night, they ruled that it wasn’t a cardiac event, but wanted him to have further testing.
That’s when they found out what it really was. An aortic aneurysm, likely caused by our mitochondrial disorder. Typically, these things can be repaired, but his aneurysm had happened some time ago. He either didn’t realize it happened (because it was so small) or shrugged off the pain because he couldn’t afford a doctor. By the time he got to the hospital one of his kidneys was already dying.
When I heard that news, I told my mother “he can have one of my kidneys.” That’s a silly thing to say because my organs are not exactly in tip top shape, but when someone you love is dying you don’t think about those things. You only think about giving everything you have to save them – it doesn’t matter what it costs you.
Things spiraled from there. After more tests they discovered that more of his organs were damaged. Still, the doctors had hope, so they were going to perform surgery to fix the aneurysm.
Jake called me at around 3am on Friday, March 15. He was waiting to be airlifted to a different hospital with better surgeons. He sounded exhausted, but the pain medicines hadn’t fully kicked in yet, so he was still coherent.
He was very pragmatic on the phone. He told me what was going on. He told me he loved me. Then he said “I’m probably not going to make it out of this, so here’s my Facebook password. Make sure you tell everyone what happened and that I love them.” He had an immense network of online friends, it’s what happens when you’ve been online since before Usenet. We shared many of the same friends because we had many of the same internet haunts. It cannot be understated how much these people meant to him.
Then he talked about his kids and how much he worried for them. I wanted to burst into tears, but I couldn’t. He couldn’t leave this world with my grief. So I told him about all of the people that love his children, that we would all help them through this. They would be alright. They would thrive.
We talked a bit longer and shared more “I love yous” and that was that.
He was in surgery for more than 7 hours. Early in the morning they told us that they were still trying to repair the damage but complications from his mitochondrial disorder made that difficult. If he did survive, he would have severe brain damage.
I didn’t know what to do with myself. So I worked and I tweeted occasionally, sharing my stress with my friends online. I updated his Facebook page with the news that I had – which wasn’t much.
I don’t remember what time the call came. I remember that I had texted my mother asking her if she’d heard any news and she never responded…. probably because that was the moment the doctor was telling her what happened. I don’t think I will ever forget hearing her say “Jake has died” or the sound that came out of my mouth when I heard her say it. The scream was instinctual… involuntary.
That scream is seared into my soul and there will always be a part of me that screams constantly over the loss of one of the people that I loved most in this world.