The bed in that photo is mine. It’s where I spend most of my time. It’s where I’ve spent most of my time for the last 6 years or so. Well, we’ve gotten a new bed since then, but I just swapped one memory foam surface for another and carried on like before. I lay in that bed day after day and try to find ways to make my life feel big and still a part of the lives that are out there, beyond.
Outside my bedroom window is where my friends and family and strangers alike all go about living. Work meetings. Brisk walks to the mail. Longer walks to the ocean. Popping into the store for something they forgot to buy earlier. Travels near and far. Sometimes I get to go with them. I only get to go if it’s with them. But more times than not I just wait in this bed for reports about what it was like out there. I live vicariously.
When I started getting sicker and the fatigue crept into my bones to make my body heavier and heavier, I developed this fear of the world going on while I lay here. Which is what it did, does. That’s how these things work. But even though I knew it was inevitable, it was still hard to accept that – to worry about being left behind. And I do miss out on things. A lot of things. But I don’t always feel like I’m being left behind. My loved ones, the people who really care, they have tethered themselves to me. They try their best. And I try my best. And sometimes those bests can meet in the middle to give me a sense of normalcy, a glimpse into how it was before. And sometimes there isn’t enough slack in the cords so we fall short and things just feel like a shadow of what could have been for me.
But I only really notice that lurking shadow when I’m straining to see out the window, past these four walls. In here, even on the worst days, things are still in vibrant colour. My loved ones come and sit next to me and live part of their lives from this bed, too. There’s comfort, terrible jokes, games, movies – normal things that people do to make memories. There’s support in big ways that bond me more tightly to these people, and in smaller ways that someone might not notice if they didn’t look closely. There’s still joy. Creature comforts. Things are different and sometimes impossibly hard but somehow also just fine. Nice, even.
It’s hard to find the words to describe what it’s like to have your world change so much, become smaller in this way. It’s worse than you could probably imagine. But it’s also more beautiful and meaningful than you’ll likely ever give it credit for.
So much exists in this one room, in this one body that bends in ways that were never intended.
Andrea Gibson wrote a poem that I think about a lot.
“A difficult life is not less
worth living than a gentle one.
Joy is simply easier to carry
than sorrow. And your heart
could lift a city from how long
you’ve spent holding what’s been
nearly impossible to hold.
This world needs those
who know how to do that.
Those who could find a tunnel
that has no light at the end of it,
and hold it up like a telescope
to know the darkness
also contains truths that could
bring the light to its knees.
Grief astronomer, adjust the lens,
look close, tell us what you see.”
I see a life that is not often kind to me in the big, big ways. But one that is so gentle to me in response to that. There are little signs everywhere that it’s trying to make it up to me. It’s all different than I thought it would be. But I think there’s more love than I expected. On the outside looking in it might not look like much, this life spent in this bed. But it’s something. And it’s mine. And I can see that it’s worth living.
Janice PruchnickiMarch 13, 2022 at 1:55 pm (1 year ago)
Beautifully said. I needed to see and feel these words as much as you needed to share them. Thanks for posting.
damselinadressMarch 13, 2022 at 2:37 pm (1 year ago)
Thank you so much! I’m glad I wrote something that you needed to read.
BethMarch 14, 2022 at 1:41 am (1 year ago)
I loved this so much.
And I couldn’t relate more if I tried. ♥️
ClaireMarch 14, 2022 at 4:01 am (1 year ago)
Beautifully expressed, thank you for sharing your words with us. Life with significant health limitations is very challenging at times, thank you for reminding me of the softer side of this life…it’s something I appreciate being reminded of, particularly as life has many “sharp edges” just now…feeling more hope for these softer times ahead
MargaretMarch 14, 2022 at 7:54 am (1 year ago)
Lisa, my dear, you have such a gift for sharing and making us feel! During these lonely times of Covid, I, for one, can vouch for this article helping to put things in perspective. Thank you and God bless.
BettyMarch 16, 2022 at 5:36 pm (1 year ago)
Thank you SO much for this ! My wheelchair is a year old and I’m trying to find a ‘normal’, too. Slowly, slowly!
Thank you for being you ❤
KathyMarch 18, 2022 at 5:18 pm (1 year ago)
Your words and the poem really touched me. Sending gentle hugs your way.
Barry TaylorMarch 19, 2022 at 11:26 pm (1 year ago)
Hi Lisa that is a very moving story.i have degenerating discs in my lower back & need a brace on my left leg,I also have no bladder control so have an indwelling Foley catheter sticking out of my manhood & a pee bag strapped to my leg,before I go out I have to find what local toilets are open with disabled facilities! And I am profoundly deaf having worn hearing aids for over 35 yrs! I have usher’s syndrome type 3 which affects my sight too! So I know what it’s like to watch the world go by & need help from loved ones! I use a surgical neck brace on bad days & one on my hand! It feels like nothing wants to work sometimes! I do follow you on Instagram! It looks nice where you live! Love your hair colour & your nice outfits! It’s good you have a wheelchair that looks light weight & modern not a hospital special! All the best from Barry Taylor.
AngNovember 22, 2022 at 10:39 pm (7 months ago)
Wow, thank you for positing this. I am in the process of trying to get a diagnosis and never have a read a post that resonated with me more.