Tag Archives: Spoonie

Broken, not broken enough…

My broken is not broken enough
to get the help I need
to stop the bleed

of endless co-pays and medical bills
of supplement costs
of specialist fees.

any adventure I manage to have
any life I squeeze
any pleasure I tease

from this tattered body and shattered dreams
becomes the reason You see
to refuse the need.

my broken is not broken enough
i should be deteriorating more
lying prone on the floor

or screaming in torment and pain
unable to enjoy a thing
enterally suffering.

my walk with the dog around the block
isn’t a sign that I’m lying
i don’t have to be constantly crying

to need help and support
from my village
it isn’t my intent to pillage

i would work if I could.

You would see the food thrown to the crows
rather than let it slip
through my lips

because it might have been earned with your labor
and You never need a favor
everything You have You worked for.

You personally paid for the street that was laid
for your car to traverse
on your way to work.

And the water You mindlessly drink
from your kitchen sink
comes from your well

dug with your own hands at your own cost
You got nothing from us
never even rode a bus.

My broken isn’t broken enough
to stir empathy
in your heart

You lack the sympathy
to understand
You won’t lend a hand

You are your own man.

Self Care = Work

It sounds so relaxing doesn’t it? I’m going to practice self care. It sounds like bubble baths with a good book and relaxation days at a spa.

It doesn’t sound like forcing yourself to eat when you are nauseated or to exercise when every nerve in your body is already screaming or getting enough sleep with insomnia or taking a shower when touching your skin hurts you.

It doesn’t sound like applying for SSDI or acknowledging your disability or cancelling plans because you are over taxed. It doesn’t sound like doing laundry or making your bed.

That is what self-care is. It is doing the hard thing for yourself because you know it will make the rest of your day a teensy bit better.

Really it’s self-work. It’s adulting. It’s setting boundaries and learning to say no. It’s making your space pleasant for you so when you are forced to spend a lot of time in it you aren’t looking around thinking about all the tasks you should be doing. It’s making doctors appointments when you need them and avoiding triggering foods.

And sometimes it’s getting a massage when your skin can’t handle being touched because the underlying muscles need it and if you are lucky you might have relief in a few days after you deal with the bio-feedback from the massage.

And it’s missing the days when a massage was just a massage instead of a medical treatment.

And it’s acknowledging it here on your blog and then letting it go.

Much love to my spoonietribe. Keep on keeping on.

Life’s little surprises…

It feels a little redundant to say life has been difficult lately. Is there anyone I know who couldn’t say that? Everything is turned upside down by the pandemic and it feels as though the whole world is holding its breath and hoping the great orange asshat doesn’t blow us all up by inadvertently sitting on the big red button. Still, life has been difficult lately.

I’ve been struggling. Really struggling. The kind of struggling no amount of Pollyanna-ing can get you out of. The kind you just have to sit around with until you acknowledge it enough you can move on.

I’ve been in a bit of a funk, one might say.

Then my husband gave me a box from my mother in law.

I knew what was in the box, it was a quilt. She makes these lovely quilts for people who are struggling and I love seeing her quilts come through the house as we help her spread her love around the world. It was strange that he would bring one upstairs but ok, cool. I knew it wasn’t for me because she has already given me an absolutely stunning comfort quilt that I curl up under all the time. While I would cheerfully hoard all the quilts in the world I try not to be greedy. I know how much work they are to make and I know how many people could use cheering up.

His face was weird. He was up to something.

I opened the box. There was indeed a quilt in it. I said something like “Who’s it for?” and he answered something like “It’s for you.” I told him I already had a comfort quilt and it couldn’t be for me. He told me it wasn’t a comfort quilt.

And that’s when I pulled out the lovely fleece backed quilt, saw the messages and signatures from my family and friends, and promptly scared the life out of my husband by bursting into tears and burying my face in his chest.

I cried for a while. Kind of a long while.

You see, there were several things going on in my non-verbal head at that moment. One was the recognition of the sheer amount of effort that had gone in to such a gift along side a feeling that I didn’t deserve it. Another was a sense of just how lonely I’d been feeling. Despite speaking up on Facebook or here now and then I keep my pain pretty private. I don’t want to intrude, you see. Also, I feel like there’s nothing new to talk about, that it’s boring, that it makes people uncomfortable, etc. So I’d been carrying it around with me all day every day and mostly ignoring it, all the while feeling more and more isolated by it.

And here was a lovely, soft, amazing quilt with loving messages from the very people I’d been feeling isolated from.

“You are loved. “

“I know it’s hard”

“Thinking about you.”

Messages of love, messages of hope, messages of humor. All sewn together by a woman who loves me so much she went to this much effort, herded all the cats, to get me a tangible example of exactly how alone I am not.

Tears.

I’m a don’t be nice to me or I’ll cry kind of person. This was so far beyond nice.

When I finally stopped bawling in general I began reading the love notes and began bawling specifically until I had read each and every one. Then I called my mother-in-law and cried on the phone with her for a while as I tried to thank her and accurately express my messy morass of feelings. I’m pretty sure “I have all the feels” was as close as I got.

Then I thanked everyone on Facebook and curled up under my amazing new quilt and took the first successful nap I have taken in ages.

The lovely, amazing, deeply personal and out of this world quilt
The world’s best signature block from the world’s best Mother-in-law.

Life is still difficult. I still really struggle. Now, however, instead of feeling isolated and sad when I struggle, I curl up underneath all the love wrapped up in this amazing gift and I remember; I am not alone.

Yep, there’s a big headache in that head there. Guess what though? There’s also a great big pile of love working on mending it.