Acceptance is a very difficult concept.
I get this. I am in no way whatsoever trying to minimize that.
I have learned that everyone has varying definitions of acceptance, impacted by the lives that they’ve led, the things they’ve experienced, and the ways in which they view the world. I want to start by saying I don’t discredit the way any person looks at acceptance. I just realized in a heartbreaking and liberating moment that today, I understand how I have come to view and face acceptance.
Strength during my struggles
My 93 year old papa has been one of the most inspirational people in my life, and my biggest source of strength during the several years it took for me to get diagnosed with Crohn’s disease, and the numerous flares and hospitalizations that have occurred since then. I have been so blessed to have his presence in my life, and at 32 years old, I have never taken that for granted.
Early last year, my papa went from strong and healthy to requiring regular blood transfusions and IV medications to sustain his life. We found out that his dormant prostate cancer had spread to his bone marrow and was now significantly affecting his quality of life. His oncologist was able to find him an oral medication which gave him so many good months, and I felt relief and gratitude in being able to spend more time together. He was even able to see me get married and to bestow a lifetime of marriage advice onto my husband and I during the ceremony. This was a beautiful moment which I will cherish forever.
This winter, it became evident that his miracle drug had stopped working, and the time since then has been difficult for both him and our family. I have tried to provide all of the advice I have on using medications like prednisone, managing a central line, staying hydrated, and beyond. But those things are just tiny drops in the bucket of his overall health. The picture is bigger than we could previously see. Over the last few days, things have shifted to an increasingly more difficult situation, and it seems that hospice may begin much sooner than he had been hoping for.
Now, I think that’s incredible and brave, and honest that my papa isn’t ready yet. He doesn’t want to have to say goodbye. But as someone who lives with a fairly impactful chronic illness, I consider myself incredibly invested in this thought. The notion that biology can always trump science. Medicine cannot fix all of our problems, and even if it could, it always comes with challenges of its own.
I don’t know how to say that to him, or to my mother, his only child. I don’t know how to say that I’ve learned the truth the hard way. We have very little control over when we enter or leave this earth, and what happens to our bodies during our time here is only briefly moderated by us.
Life isn't fair
IBD patients know better than most that life wasn’t built to be fair.
I remind my mom, and my nana and papa that 93+ years old is a major blessing and accomplishment for anyone, and even if he was as healthy as a horse he could say goodnight and goodbye in one quiet swoop. I don’t at all mean to be callous by saying this. In fact, I think by sharing this I’m trying to be bravely honest. Health is something we don’t have the luxury to joke about, and without it - well, we all know how difficult that is.
I will miss my papa tremendously when he is gone. But I also know that unfortunately, there’s very little left in anyone’s control besides keeping him “comfortable” and surrounded with love. I’ve realized that I would so much rather we do those things, rather than running around, panicking, trying last-ditch attempts without proven benefits just to say that we didn’t give up, and miss whatever quality time he might have left. I wouldn’t want that, if it was me.
What IBD has taught me
After thinking about all of this, I called my mom and told her that I appreciate all of her updates. That I’m so sorry. And that I’m okay. That I support her, and my papa, and will be here throughout whatever happens next to help in any ways that I can. But most importantly, I told her that I’m okay. That I understand. And that I have accepted the reality. I am talking about his reality here, but I think I mean mine too.
I will be devastated when my papa leaves this earth, but I am so grateful it will not be a surprise, and for me, it will not be traumatic. To be honest, I’ve had way too much of that. Maybe that’s why my perception of acceptance has shifted so greatly. Maybe after all these years, my struggles with IBD have taught me how to walk with acceptance as well?
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