How are you doing this?
It is so kind that you ask. You always do. You ask about Jacob and then you ask how you can help me. I know I’ve never answered. It’s not easy to answer and I hate giving you nothing for your kindness.
There is nothing anyone can do to help me, except be there. I only want for one thing, health. This whole nightmare to end and I need your prayers. But sadly, no, there is nothing concretely you can do for me. And I know that makes you feel helpless, because I know what it is like. I feel helpless for all of the families I’ve met. The “unseen.”
So how am I surviving?
I don’t answer, because everyday is different and it’s a strange way to live. I have no idea where the day will begin or end. But I do have my own “protocol” to get through the days. My own care routine and sadly, I’m realizing I will have to change it. I wouldn’t call it the healthiest example, but I want to be honest about it as you moms have been with me. I have heard from some moms that have not even spoken to their best friends about this nightmare. They pretend they “moved.” They speak/spoke to no one. We all cope differently.
How I survive the days (currently):
I wear my armor- sweatpants, t-shirt, sneakers, and my flair (more on that another time). I hardly see the sky. We are either hunkering or in the hospital so this uniform feels appropriate. My armor brings comfort.
I read a lot. Not fun fiction. No beach reads here, but non-fiction all on cancer, especially the history. I read about all of the warriors before us. All of the incredible people who championed this cause. This helps me feel knowledgeable. It helps me feel a bit more in control.
I write when I can so I can remember what I learned from the day.
And I work when I can. Still working for cancer. Cancer is my biggest stake holder in Mind the Gap.
But basically during the day, I do anything to make meaning out of the last 6 months. I try and work on curing cancer.
I know that is an absurd thing to say, but is it really?
Looking at the history of cancer, the people who have made the most Impact collided with doctors. They were outsiders. Most medicines that are used to “cure” cancer didn’t even come from the search to cure cancer, but rather were stumbled upon for other pursuits that include the Manhattan Project and clothing dye during the industrial revolution.
And saying absurd things is just what I do. I am absurd. I take pride in that. But I’ve never backed down from a problem. I’ve never. And I’m not about to start now.
So that’s how I survive the days when I have the ability to break away from Jacob, Benno etc. That is my survival day regime.
How I survive the nights (currently):
If at the hospital…I don’t. I am surrounded by sick children and I do not fare well there. I’m up all night. Up all night not reading, not making meaning, but staring at the walls, crying. I know that is a waste of energy and not the right thing to do for Jacob or myself, but I succumb. I am also aware that I have a LONG stay in the hospital coming up. This I am nervous for. Maybe it will be different this time. Maybe I’m stronger. Possibly…
When I’m not at the hospital the self medication begins. WARNING this is not doctor approved. I smoke a joint and drink two glasses of wine and then Steve shoves a xanax in my mouth. I hate medications. I truly do, but of course, Steve has me wearing a sleep track ring and when I don’t take medication, I don’t sleep. He now has the data to prove it. So I take the pill like a good girl. He’s right though I need sleep. I recognize that. Just wish I could do it the normal way.
This is nothing to be proud of, but that is the truth.
But this has to change. The whole thing has to change. This is not sustainable. This is not healthy and this is a long road…longer than I think I was willing to accept. This is the new normal. The unpredictable normal.
We are all here for you guys!
Sending you all so much love and prayers and continuing to flick 🙏❤️
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