I was hoping to stay out of The Cave for longer. Yet here I am. 

I don’t like being back here. It feels like a failure. I know it’s not. It’s just that I had such a good run of things.  I almost believed I had entered into some sort of magical, prolonged state of acceptance. 

The problem with a progressive disease is that the losses and limitations keep mutating into increasingly harder-to-cope-with forms. It feels impossible to remain immune to the grief of having to continually surrender and let go.

I so wish this process were easier. I wish the healthiest way through for me wasn’t also the most exquisitely painful. I wish I had a finite loss that I could mourn, accept and adapt to. Oh, how I fantasize about how well I could work with the same familiar disability, day after day.

I allow myself that wish, simply because it is true. And when I am in here, I must leave no tombstone unturned. 

The tombstones I’ve carried into The Cave this time include a recent diagnosis of “severe osteoporosis” with an accelerated rate of bone loss for my age.  (Somehow this shocked me, despite making perfect physiological sense.) 

That was soon followed by my most random injury to date: 

I was traveling at full speed (inadvertently) in my wheelchair, with my head down so as to clear the small entrance into a recreated traditional Chumash ‘ap (a dome-shaped hut) crafted by my husband’s best friend for the students at the boarding school where he lives, and my back got stuck. I heard what felt like a loud vertebral crunch.

For the first time in my life, I was truly short of breath- unsure if a rib had punctured a lung or I was having a sympathetic nervous system response to the terror of being momentarily trapped.  After a couple minutes, my breathing reset and we concluded that I didn’t need a trip to the ER. 

It has now been a month. It still hurts with most movements and most unfortunately, with deep breaths. But that same day, I purchased an at-home spirometer- a cheap plastic device that encourages deep breathing- in service of exerting some control somewhere, and I’ve been trying my best to be patient as I quietly and somewhat nervously hope my body heals completely. 

As my husband and I drove back, we stopped on the side of the road where I saw a mystifyingly beautiful rose and then, a double rainbow. All of a sudden, out came the sobs. To behold such beauty in the midst of such pain. I felt overwhelmed with gratitude for the reminder. 

That it’s all the things. 

That I am all the things. 

That I feel as excited and awe- inspired as deeply as I feel pain and discomfort. 

Oh, how I wish I could have the former without the latter. 

Or do I?

I recently came across the Albert Camus quote, “Men must live and create. Live to the point of tears.” A call to throw oneself into human existence with high intensity. To embrace the full, unadulterated range of human emotion. As writer NY Ivan interprets it, “to be so utterly present that you are just as likely to weep from astonishing joy as you are from devastating sorrow.”

Live to the point of tears. 

There it was. I couldn’t believe I had never heard it before. One sentence that so perfectly captured what I’ve been doing during my time here. Perhaps this is what being human looks and feels like when we allow ourselves to feel it all and not turn away.  

For me, it’s how I feel most alive. 

I am inscribing this quote on the wall of The Cave as I make my way out, so that the next time I find myself here, in the darkness, I’ll be reminded of a fundamental truth: 

I am simply a human having a human experience.

It’s not right, wrong, good or bad. 

It just is. 

I just am.