Cave Dwelling and Grieving Your Way to Happiness

I recently received an email from Mail Chimp warning me that my free account would be terminated (along with all prior mailings) if it remained inactive. Turns out I haven’t posted in over three years. Wild. 

I’ve spent the last few years traveling; to some far away places and deep within. A lot has changed. My disease has progressed farther than it was ever supposed to. I’ve retired my sporty little tricycle-like electric scooter and now rely on a power wheelchair outside of the home, save for very short distances and only when linked to someone’s arm. I use an adjustable bed to help me sit up. I have a “lift chair” in the living room because I could no longer get off the sofa by myself. And though I can mostly still dress and feed myself, I need adaptive tools for zippers and buttons, help putting on socks and shoes, and sometimes, someone to cut my food.

This March marked the 20 year anniversary of my GNE Myopathy (formerly HIBM) diagnosis. That’s a long time. Forty percent of my life. And March marked only the first 20 years. In fact, likely the best 20 years of my body with this disease. The loss is ongoing. And exponential. 

Sometimes, when I stare directly at myself and then ahead at the next 20 years, I get pulled into the cave, or what I used to call, “the vortex.” Earlier this year, I was stuck in a very dark corner of it. I’d never been in that deep and wasn’t sure I’d find my way out. 

Eventually, l felt my way out.  The way I always do- I cried by myself, with my husband, to my sister, with my close friends. None of them ever afraid to be in it with me.

And now, there’s something very peculiar happening. Or maybe not at all. I have not just emerged, but I’ve entered into a light shining so brightly that I am not even sure I recognize it. It feels paradoxical. Almost a betrayal to my grief. It shouldn’t make sense. I keep losing- my physical strength, control, independence. And yet.

The uninvited wisdom I’ve acquired along the way- the truths I’ve resisted surrendering to- I am befriending them now.  I am increasingly attuned to what matters. More consciously aware than ever that yes, I wish I had my strong, playful, non-deformed body back and also, I have all that really matters in life.

I find myself wanting to share how I arrived here with anyone who will listen. Not from an intellectual or theoretical angle, but through my lived experience. If I can do it, you can too. 

I joke that I’m too lazabled to ever actually write a book, but if I did, the title would be, “How to Grieve Your Way to Happiness.” Something of a self- help memoir.

Here’s some of what I’d want to cover:

1. Don’t be afraid of the dark. It’s uncomfortable, it’s not unsafe. Our survival used to depend on staying away from it, now it depends on moving through it.

2. Don’t try to find your way out. Feel your way out. You can only get so far in your head. Eventually, you must put aside the thinking brain, the great intellectual defensive protector, and drop into your body and heart. Not everyone has the luxury of feeling safe  there. Do the work to get there. It’s worth it.

3. You don’t have to know how, you just have to trust that you will. Our psyches are wired for healing. We have been grieving since the beginning of time. The feelings themselves aren’t the problem, interfering with them is. Trust that your psyche knows what to do. Even if you’re scared.

4. The darker you go, the brighter you emerge.  Nothing is more liberating or empowering than going to the brink of emotional survival, and then surviving. True catharsis. “The purification and purgation of thoughts and emotions by way of expressing them, resulting in an emotional state of a renewal and restoration.”  Once you’ve lived through it, you don’t have to live in fear of it. It is the ultimate natural high.

5. Stop trying to control. Start learning to adapt. You can expend all your emotional energy trying to manage, control and prevent bad outcomes, desperately seeking reassurance that if you do, it will all be okay. Or, you can invest in coping strategies for when it’s not okay. Stop trying to make unknowns known. Know that you can and will adapt. Adaptation is how we’ve survived.

6. See yourself and let yourself be seen.  Look at yourself honestly and with compassion. Vulnerability is scary. But ultimately, it’s what will keep you safe. Community is how we survive. It won’t change your reality, but letting others hold it with you will lighten the load and prevent you from getting crushed.

7. You can simultaneously trust that life is unfolding as it’s meant to and still rage against it. Both truths can coexist. When I was younger, I tried to adopt the “everything happens for a reason” or “it wasn’t meant to be” approach. It was presented as a healthy way of coping, a way to stay positive. In actuality, it was a spiritual bypass designed to avoid natural feelings of upset and disappointment.       

Then, when I was diagnosed, I rejected anything resembling predetermination. It wasn’t “meant to be” or “a gift” or because “God thinks I’m a bad ass.” It was because of science and genetics and bad luck. Why me? Why not me. There was no meaning to be made. 

Twenty years in, I have chosen to believe that there is meaning in how my life is unfolding. I don’t have to like it, I may never fully understand it, but I can try to trust in it. Not in service of avoidance, but of allowance and acceptance. Not to justify passivity or complacency, but to actively work to find the teachings and growth opportunities within it. Finding meaning in my suffering allows me to suffer less. 

8. Music. 

9. Nature. 

10. LOVE.                          

I will have to dedicate a separate post to these final three. They are my most favorite, reliably effective coping tools. (They also happen to be very accessible, even if not in the ways I wish they were.) They are also what make numbers 1-7 above doable. 

Especially love. 

Love gives life meaning. 

Love is what makes the cave survivable.

…

I usually write from inside the cave. It’s fun for a change to write from the outside. I enjoy being here.  I don’t know for how long I will stay, but I do know that no matter how far I travel, the cave is always in my visual field. And that’s okay. That’s my reality. I am aware of what still lurks inside it- more frustration, sedentariness, dependence, longing, tears- but I am no longer afraid. I will continue to enter when I need to grieve the death of the most recent version of my physical self. And when I’m ready, I will come back out, and enjoy being here, until it’s time to go back in again. I will continue moving in and out, each time emerging physically weaker, but with newer adaptations allowing me to live an even bigger and fuller life. Each time, inviting loved ones to sit right beside me. Each time feeling more free and less afraid of surrendering to what is. Each time trusting that the darker I go, the brighter I will emerge.