It has been hard writing about Mark’s condition in the last few months. When Blue Cross Blue Shield of Michigan & his former doctor decided they couldn’t agree on billing codes and all physical therapy stopped over the summer, I desperately worked for hours every week to try to get things moving. We had got him standing again, we had him moving. It felt like a race against time, and I was losing.

I finally gave up. I could only do so much and the mental and emotional toll of fighting with another social worker or insurance rep just clocking hours without a care was overwhelming.

“Insurance companies don’t get giant office buildings because they fulfill claims,” someone said.

My desperation led me to a direct doctor who doesn’t take insurance. We pay a monthly fee to get care, and it’s all tele-health and phone calls. We started therapy with another company and some really whack things happened, so that stopped.

How it’s going

When people ask me how Mark is doing, I don’t feel like I have answers. Ultimately, he’s fine. He’s made progress in some areas and he’s gotten worse in others. Daily life is hard, but not impossible. He likes watching travel and nature shows on YouTube. Sometimes he’ll listen to music with me. I can put on an old 70s or 80s song and he’ll sing along. He protests physical therapy. He finds delight like a little kid in a Jersey Mike’s sub. He belly laughs at fart jokes on TikTok. He rarely gets as agitated or upset as he did in the first 6 months. He doesn’t care about politics. He feels safe here. He sleeps deeply and for long periods of time.

For those who have known him over the years, he’s more of that pure joyful fun exuberant Mark than ever. Even though he’s more limited, I think he might be happier.

The long goodbye

But it feels like a long goodbye. I’ve lost who he was, and I miss him.

I’ve lost a lot of things to a pretty big vacuum in my life. I’ve had to become someone else.

I’m okay with that. I like who I am, and I’m probably more me, confident, and happy with who I am than I have ever been.

During all of the trauma of losing his magnetic presence, I’ve grown. It feels like the longest goodbye as I ease into more of me. It is a strange juxtaposition.

Photo of Foggy Forest

It’s hard to not want to keep everything the way it was, pining for my pines in Mount Shasta and my beautiful home there with the inches of my kids’ growth marked on the wall that I couldn’t take with me.

I’m grateful for the memories and wouldn’t change anything. I know that if I were still in Mount Shasta, I wouldn’t be who I am now, and I would still pine for the way things used to be.

I remain present in presence with the little things that matter most and soak in every moment with intentionality. I know I’m here for a reason, and the ginormous Mark shaped hole in my life is being filled in slowly with little pieces of me. I find gratitude that he is still here to the point where I can tell him daily exactly what he means to me and see the delight on his face at the small things that matter. I find gratitude in his childlike joy and happiness that have replaced many of his old anxieties.

We’re all losing

I know I’m losing him just like I have lost the self that used to comfortably rest in his shadow. I have lost my little kids to these amazing adult sized incredible humans that have huge hearts and minds and make the world better just by being here. I have lost dogs, cats, friends, and an environment that feeds my soul while I have new experiences of all of that which makes it easier.

I have to fight my own instincts to hold on to what I have had so that what is more may come into being.

But I hate losing, and I hate goodbyes. All I can do is center myself in that larger part of me, the part of me that can never get lost.

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