March 13, 2023 – Visiting Barbara

Today I visited Barbara Costerus with Miranda. Barbara is a kidney transplant recipient for 22 years and she is currently on hospice. She is amazing – she was on hospice for a year already and she is still here. Her hospice contract was renewed for another 2 months.

Barbara looked better than I expected. I met her and her husband Bart for the first time and what a horrible way to meet. However, anyone who has had a transplant for that long and survived is an inspiration. I told Barbara thank you for the inspiration she gives us.

Barbara told us about her life. She has two sons and both of them also had lupus. Her older son just passed away last year at 57 waiting for a kidney transplant. Barbara said it was hard, is hard. My mom says that grief manifests itself in physical ways. She thinks Isa has cancer because of the grief after her twin sister Ana passed away. Maybe that’s why Barbara is in hospice, because she can’t handle the pain of living after her son passed away. However, Barbara seems to be very determined to keep on living. She is frustrated that she can’t talk or contact her nephrologists or transplant doctors for advice. I mean, she was on hospice for a year and she’s still alive. However, her other son is doing well because he had a kidney transplant also around a year ago. That news delighted me so much.

After I visited Barbara I fought with Miranda. I said some things I shouldn’t have during the visit and Miranda pointed it out. I said “you’re so brave” because I did think she was brave! She’s staring death in the face and during the visit she’s asking questions about us, our transplant, and limiting the conversation to herself. I mean, if I was her, I’d probably be shitting myself, crying, moaning, complaining – being anything but graceful. How does Barbara maintain her composure in this time of crisis? Probably the most critical time of her life, the most acceptable time to be a crying mess, and she is a champ. She looks good too! She talked for us for 40 minutes. She is brave.

I snapped at Miranda. I yelled at her because she was listing off reasons that you shouldn’t say “you’re so brave” to someone in hospice and I said that I already felt bad enough it was like she was rubbing salt in the wound. Earlier, just after we finished the visit, I said I was sad. Miranda told me not to be sad because Barbara’s life is beautiful. She was able to live such a long life and death is not a natural part of life. I said that’s true, but it’s still sad. I mean, it’s okay to be sad visiting someone is hospice!

Miranda said she already accepted her own death. And then I said, are you for real? Because, like, are you for real? She’s 19. I’m 20. How could she accept her own death? She said that if she died tomorrow, it would be okay, because she already accpeted her own death.

For the first time ever, I saw the dark side of Miranda. I always thought I was the worrier, the paranoia, and the pessimist. Miranda was the optimist and reasoner. But now I was the optomist. I refused to accept my own death because I wasn’t going to die. Not now… not after everything we’ve been through. We need to fight with everything we have, even if the battles are long and hard.

The day before I made brownies with Miranda. That’s what I delivered to Barbara (along with bread). However, I forgot to give them to Miranda after we fought. So I cooled off walking my dog and just couldn’t in the middle. I collapsed in the park and literally sat limp in the grass. The visit affected me more than I realized. Then I drove to Bob Moss’ house and talked with him. He cheered me up because he’s always a good person. Then I drove to Miranda’s house, because it’s not far from Bob, and gave her the brownies. We hugged and mad up, although there wasn’t much to say. What can you say? These are scars we carry for life. The best we can do is eat our brownies and wait for the sun to rise again.

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