I don’t like to talk about my pain. Physical pain. Only a few people truly know how insidious and debilitating it is, but I need to be open about it. Simply, my spine bends incorrectly and is covered with arthritis from cervical spine to lumbar (or top to bottom). I have fibromyalgia and a couple of other autoimmune disorders. I try hard to accept it, take my meds, and enjoy the life I am grateful to have.

But sometimes, exclusion from activities makes it difficult and makes me sad. This past weekend was one of those times.

This was the weekend of Camp Brave Heart, a special time of healing for bereaved children and their families. I’ve had the opportunity to go as a volunteer for most of the past dozen years, and I’ve come home with a lightness in my soul. Seeing those children’s faces transform from fear and sadness to laughter and friendship, as they face and share their grief with others who have also experienced a loss, is a gift. Being a volunteer and giving back has meant a great deal to me. And full truth – Camp has helped me release my own grief.

But the reality of my pain is that I just can’t do it. I no longer have the capacity to stand for long periods or walk any distance. My spine shoots pain through my nerves from neck to feet.

So I sent my heart to Camp this weekend, knowing the staff and volunteers would be working their magic. I hated not being there, and I know I’ll probably never go again. That is a different kind of pain I must endure.

Also this weekend, No Kings demonstrations were held across the country. I was proud my conservative city had 2 of them, with thousands of protesters. I wanted to join them, to hold a sign, and to march to our congressman’s office. I wanted to be a part of the movement in person, not virtually.

However, I can barely hold up a book, much less a sign. My neck and shoulders would never tolerate it. I wouldn’t be able to stand or walk for long. My spirit marched with my friends and like-minded community. I was sad I couldn’t be with them.

I could scream all day about the unfairness of my pain. It just doesn’t go away. Ever. I’m not looking for pity; I tell my story to explain my reality. Sometimes I say “no” because I must. Just know there is more to the story.