What I want Covid-19 affected families to know

I had just moved to Japan when my brother in California would fall out of remission and into a steep decline. The cancer wasn’t just back - it was back with a vengeance. Again.

I received Skype calls from my parents keeping me informed. The hospital even sent a Red Cross notice to the island to notify me. He wasn’t doing well this time. He lost his voice first. His brain began to jumble letters and his writing, the only way he could communicate, was now in some foreign language none of us could decipher.

His eyes would track his wife back and forth across the room.

I knew all of us this because of these video calls. It was 3am. I couldn’t just hop a flight the next day - it would literally require help from the US military because of my visa. I felt stuck. My family was somehow optimistic. I unconsciously and robotically started packing a bag and even asked “which black dress do you think he’d like me to wear?” when my now ex husband told me everything would be okay. My internal rhythm was off. And I knew he would be gone soon.

He coded. Three times. In the minutes, that felt like hours, that followed I told my mom to put the phone up to his ear. I told him I loved him, he didn’t need to worry I would take care of our family. And then he was gone. I collapsed to the floor and uncontrollably cried. I lost track of time.

You see death isn’t about them anymore. It’s about those of us left behind. And it’s shitty. Somehow I knew in my heart he heard me. 

In the years following his death I was immersed in guilt. I should have been there physically. I should have sat there holding his hand. I should have known it would come back. I should have done more. My imagination can be a dark place, and I lived in that guilt.

It’s been a decade now and somehow I find solace in not reliving the nightmare that it must have been for my mother and father, and for a dear friend who was with him the last time he coded. The same nightmares that our nurses and doctors live through every day. I truly can only imagine how they all feel right now. “It’s scary” is an understatement. 

The brain is marvelous and wicked. I don’t wake up screaming, reliving moments anymore. My dreams of my brother in the hospital include the time he was in the children’s oncology ward (the adult ward was too full at MD Anderson). We strummed the guitar slowly to be careful of his PICC Line and played video games until he fell asleep. We munched on pizza from the hospital cafeteria. I watched him sleep and I gazed out the window wondering how the fuck we got here. It also brings me to the time when his Stem Cell treatment left him isolated for 30+ days. Our family decided none of us would visit, for fear we would make him sick and risk the procedure failing. The smell and sounds of those hospitals are still just a thought away.

I go back to all of the memories of us fighting as kids, playing and laughing together over the simple things like pickles, sports, and Nintendo. I go back to baseballs games in the cul-du-sac, crowd surfing at a POD concert (sorry Mom!), and getting into his hot rod thinking — I’m proud to be his little sister. This is what I cling to now. I think less about not holding his hand at the very end because I held it through our lives together. 

I still have ups and downs and this pandemic brings a lot to the surface. I feel your pain at not being there. Being told you can’t go inside. Not knowing if they’ll ever recover. This is the very reason I’m writing — Because if I can help just one person in sharing this story, that’s all that matters. This grief I feel of not being there for my brother isn’t exactly the same as it is for you right now. I honor that. I had more time to process the statistics of if he would survive. I was able to stand at his grave side and sing at his funeral. Death rituals are sacred. 

What you are feeling right now is heavy, dark, and unfair. The grief feels unbearable. If I had to pin point what many of you may be feeling is the lack of fairness in all of this. This isn’t how you imagined ever saying goodbye to the person you love. This isn’t the story you imagined for your life, or theirs. Saying it hurts doesn’t even scratch the surface. I’m here to tell you — it isn’t fair.  And it isn’t okay. And it cuts deep.

In 10 years you won’t be “fine” and you’ll learn that your strength, even in the darkest moments, will be the reason you’re still above water. You’ll realize that not being able to hold their hand is not your fault. And your loved one, laying in that bed is not alone. Your energy surrounds them. Your love is deeply imprinted on their soul. The nurses and doctors in those rooms give more shits than we all give them credit for — and there is still love and kindness with them right now. Take it from someone who said their goodbye from thousands of miles away on a spotty cell phone. I feel your collective grief. They know you love them. And you are doing enough.