This post is not for those of you who have a career, a partner, friends, and pastimes. It’s for those who feel like you have to sit on the sidelines of life and wait for grace’s goodwill to wave you back into the game. This is for those of you who wonder if you’ll ever get to come out to play again. It’s for those brave souls who have been asked to walk a very different path, an often lonely, excruciating path. This one’s for you…(I am you).
Have you ever heard this expression, ‘Fear Of Missing Out’ or seen it’s acronym F.O.M.O.? This expression is usually reserved for those who have to choose whether they’ll go to this party or that one and secretly fear that whichever party they go to the other one will turn out to be better. For those of us who don’t get to go to parties at all (or anywhere else, really) this seems like a really great problem to have. For those of us who are ‘benched’ by chronic illness, pain, depression, or whatever else has called us to the side lines…we don’t just have a fear of missing out—we have to deal with the visceral experience of missing out every single day—not just on the fun stuff, but on the ordinary stuff healthy people take for granted like being able to go grocery shopping or out to eat.
For many of us the ‘missing out’ is so extreme it’s almost like dying while still being alive. We’re no longer able to work or earn a livelihood, no longer able to maintain a social life due to debilitating symptoms, and no longer able to pursue our dreams or things we loved like travel or taking classes. Life goes on all around us but we’re not actually ‘in it.’
I know about this all too well. When I got sick with Lyme, I had to stop living the life I had created. The dancer, the yogini, the entrepreneur, the social butterfly I knew myself to be…the entire story I had going about who I was, what I did, and what life was about crumbled all around me. My life didn’t just crumble but slowly even the crumbs disintegrated until all that was left of my former life—my work, my friends, my activities—had turned to dust. It’s as though ‘I’ had died.
I didn’t realize what was happening at the time but I realize looking back that I had to grieve my former self. Slowly but surely, I went through layer after layer of a grieving process—anger and bitterness, bargaining with god, despair and hopelessness, acceptance, and back again. I don’t think the grief cycle ever really stops for those of us living with chronic illness, we just keep cycling back through the stages again and again. (I’ll share more about that another day.)
No one could really tell me what was happening to me. All I knew was that no matter how tightly I clung onto it, I was no longer who I used to be, who I thought I was, and my former life was no longer my life. Eventually I got tiered of trying to hold on, like clawing mercilessly at hard dirt—there was nothing to grab onto—and eventually I had to let go out of sheer exhaustion.
Okay spirit…you take it, take all of it.
Here I am a four years later. I didn’t really die. Interestingly, my healing has had very little to do with ‘re-covery’. I am not ‘recovering’ anything. No. I’ve been blown wide open and there is no closing down and no going back to who I used to be or to the life I used to have. That life is long gone. I’m still not able to resume ‘normal’ activities. All around me life has gone on as usual. People are working, going out for drinks, attending yoga classes, taking trips, checking out events, falling in love, and having babies.
I’m surprisingly often at peace with this strange feeling of being ‘benched’ or on the sidelines as I attend to what’s become a long-term healing process. I’m learning that this process is life too. I’m learning that I am not separate from life even though it may look or feel that way a lot of the time.
Other times, I feel so bitter, grief-stricken, and angry at the sheer extreme of what I’m being asked to live through. The feeling of missing out on life is unbearable at times. I watch people take trips and go to events and sometimes my own sadness is just too all consuming for me to even be able to feel happy for them. People all around me are still participating in life and at times it feels like everybody is rubbing it in my face (although I’m sure they don’t mean to). The truth is that they get to do everything I’m not able to. Some days I feel like I’m falling behind, I’m losing the game, and like I’ll never be able to make up the years I’ve lost.
I don’t think there is any way around these strong emotions and I’m learning that feeling them is part of my journey, and part of what (on some level) I signed up for. There are times when I feel deeply at peace with what I’m living, I see the value in my own journey, and I know that others are actually missing out on the experience I’m having!
It’s a twisted privilege but a privilege nonetheless that I get to have a grand pause of solitude, reflection, stillness, and healing amidst the insane busyness of life. This is the only way that I would’ve stopped and gone this deep. I know that. I had to be forced otherwise I’d just keep going on the merry-go-round like everybody else.
There are some days for me (and others like me) that we are in so much pain, so grief-stricken, or so downright ill that we can’t see the value in our experience; we can’t have gratitude for the gifts in our little corner of the universe.
You know what? Even healthy people who are out and about feel like this sometimes. There are hard days no matter what cards you’ve been dealt.
I’m learning that everyone has their challenges, their secret pain, and hardship, even those who take the amazing holidays we envy or seem to have fortune and fame. There are certain aspects of the human experience that no one escapes from regardless of how it may appear.
So, brave souls, how do we deal with the cards we’ve been dealt? A tiny little bit at a time and with all the courage we can muster. We slowly learn how to live a life that is totally not what we had planned. Eventually we see that this too IS life.
As cliché and trivial as it may sound, I recommend keeping a gratitude journal. Because I’ve been feeling bitter and grief-stricken about my own situation lately I’ve resumed a nightly gratitude practice that involves writing half a page of things I give thanks for in my journal. These things are often the same every night…my cat Injeia who is my remarkable little angel of love, the support and generous ongoing presence of my mom, having nourishing healthy food, and a warm, safe place to rest and heal. This gratitude practice reminds me that things could be much worse and somehow that makes me feel a tiny bit better.
:: CREATE ::
I invite you to create your own daily gratitude ritual that you’ll weave into your routines. You could do it first thing in the morning when you wake up, when you eat one of your meals, while you bathe, or like I do, in your journal before you go to sleep at night. Create a ritual that is easeful and feasible for you. Are you too sick to write? Perhaps you just say your gratitude out loud or hold them in your imagination or your minds eye. Create a gratitude ritual that is a simple addition to your daily routines and tie it to another activity like brushing your teeth, eating, or waking up in the morning so it’s easy to remember.
I am grateful for you, whoever you are, wherever you are. You are not alone.
Copyright © 2015 Marie-Ève Bonneau