I don’t write much about Steve. Maybe you’ve noticed. You may find that odd if you know us.
That is because Steve doesn’t exist for me. We don’t see each other and when we do, I can’t.
I write and he reads.
He reads everything. He knows every clinical trial, he knows every drugs interaction with the other drugs. He is seven steps ahead of any possible disaster. He’s doing “that” stuff.
“That” is actually how he moves all through life, seven steps ahead of disaster. This time the stakes are high so he is in hyper drive.
A bit about Steve. Oh where to begin! So many good examples of what “Steve Brody” is like.
I’ll give one, but there are many!
In our basement, we have enough water to last 10 years. You may say that isn’t super impressive (especially those who live in the burbs), but do you know that your Poland spring bottle and all water bottles bought at a grocery store expire? Or are not good after a while for reason? Well Steve does.
Of course, he does.
We some have some “science water” stocked in our apartment in sealed cans; we have food for a couple of months; we have medicine; we have defibrillators, and during that whole North Korea scare (although did that really ever end?) Steve figured how to make our basement into a fallout shelter.
I kid you not. And that is just the tip of the iceberg. I can hear my friends laughing right now reading this. I’m sure they can opine. Actually, do that! Comment. I would love to hear your stories. They make me laugh.
Steve is well…one of a kind.
He’s my kind.
Nope! He’s every kind. There is literally nothing not to like. He does everything. He knows everything and he is a good person. Funny too. He has zero faults. He is perfection.
But I write and he reads
I’m here and he’s there
We just don’t see each other much.
When I see him, I am paralyzed. It hurts so much. It’s hard to be near him, but it’s so good at the same time. It is like this crazy cocktail. Having a strawberry daiquiri laced with arsenic. Being in paradise and also hell.
I know that he is here.
I am aware that his physical atoms are here. I see him. I also know I’m talking to him. I know all of these things. I know I’m not crazy.
But…Maybe I am.
I am living this entire journey from TWO story lines and I CAN’T STOP.
I really want to stop.
I really want to.
I really do, but it is just a movie playing on a loop.
Every thirty seconds or so of every day, I literally think I’m doing this alone. And by no means do I mean absolutely alone. I have my family and my friends, but Steve is not there. He is not there. It is my reality. I walk alone. I “mom show” alone.
Oddly I can talk to him on the phone which is usually just a logistical talk about next steps, but when he shows up…
I remember he is here. It hits me. I realize that he is here! AND he has done SO much for Jacob and our family. He has more sweatpants for me. He has seven new ideas on how to help Jacob. He is dealing with everyone and everything. All I do is entertain. He has taken care of our family. He has gone into battle every day for us. He knows this cancer inside and out. He’s spoken to every researcher in the field. Hell, he is a doctor!
He has tasked list the shit out of this.
And I’m so thankful that it rocks me to the core. Literally core. I can’t stop crying. Thank you. Thank you. Light, God, energy. Thank you.
because he almost wasn’t here.
How would I have done this? How would I survive? How would I take care of Jacob? How would I take care of Benno?
And I cry. My heart breaks, because I remember it all of it over again. I remember.
Actually that doesn’t describe it. I’m experiencing it.
No, that’s not it either.
I’m DOING it. Its like I’m going through Steve’s cancer, but REALLY doing it this time. I was lucky that I didn’t have to do it when it was happening. I was just Steve’s personal assistant last time. I ran the errands and got him his food.
With Steve’s cancer it was GO GO GO. And Steve led it. He lead his own treatment. Hell, he led his diagnosis. Steve saved himself.
I will digress to share Steve’s cancer story as it just is another example of Steve.
Steve decided to get a x-ray for a cough. The Dr. (and his wife) said this is a cold. Steve never gets sick (of course he doesn’t!), but he still wanted it. Steve wants everything. Steve likes things. He likes owning gadgets (only the best!). He needs stuff in all its forms, physical and digital. He breathes data. His “food” is information. Its how he computes.
So he got a script for an X-ray. Two days prior the cough went away. Ha! He did have a cold. I told him not to go. Unnecessary radiation. But he went. He likes gadgets. He likes information.
This gadget said: lung cancer. Stage 3 or 4, we got both diagnosis, but it didn’t matter, it was BIG.
But it was quick. In 2 weeks it was over. They cut they sucker out of him. He recovered at Superman speed. And we bought a boat. And fuck we bought a boat! Lot of work to do. I got a boaters license and Steve well…read. He learned how to be a captain, an engineer, a freaking bad ass man of the sea. And yes…he bought gadgets. He was BUSY!
And we sailed away.
Literally sailed away.
Sailed from the memory
Sailed from the past
We adventured! My dream and we did it with a floating home. Benno will always have a home base for his anxiety. We built a dream that we all could love. And we loved it!
I never really thought about him ever getting sick again nor cried about it. Steve never spoke about it. We spoke about it when asked, but it was a positive story. We’re so lucky!
That was in the past. We were living in the NOW.
But now I’m feeling it. NOW! Fucking NOW!
Every time I see him, I remember almost losing him.
Its awful. So awful.
And he starts talking to me. Of course he does I’m right there and he has something to say. It’s always helpful, nice, or just logistical, but I can’t take it. It makes it so much worse because there he is talking to me, he’s alive and I see all the things he did today and I feel so thankful, but yet I grieve. I cry my eyes out. How can I live without you?
I seriously can’t explain it well. I’m trying.
But this sucks. I LOVE my husband and I want to be with him and he NEEDS me. He needs me. He needs me. I need him too.
So tonight (I got another “night off”. This time my Jacob wanted my mom), I vowed to do better. I came home and sat outside in our courtyard and listened to music (on shuffle). I felt strong. I would be strong.
I grounded myself in reality. I get to go home to my husband. Hes here
But then I saw his now bald head and how handsome he looks, I did it again. Lost it.
How could I do that to Steve?!!! He has so much on his plate and now a wife he can’t console. Now a wife that can’t explain to him why she’s crying. Its not his fault.
He’s there for all of us and I want to hold him, but it’s hard to be near him. It’s hard to go back there.
I can’t imagine his perspective. He just did this fight! How must he be feeling! He already does everything. He needs his wife. He needs his energy. He needs his power cord and WE need him to have energy, he needs to save Jacob.
I’m fighting two cancers.
One real and one imaginary.
I live in two worlds.