I’ve been reflecting a lot this month on the progression of things. Loss, what it’s like to live and love with an illness that’s uncertain and chronic for 15 years now. What growth looks like in that space.
What having your community show the fuck up for you feels like. What withdrawing into yourself feels like, because while support is always lovely some journeys we must take alone.
What does 1 night in the ER, 1 day in ICU and 4 days in the hospital add up to?
The feeling of what it’s like to stand completely still when everyone else forges ahead.
I have experienced major life changes this past month. Someone who I had deep soul ties with and loved deeply died. A week later I experienced my 2nd stroke in 8 years, I’m 27 for reference. Then I quit my job, for numerous reasons. Mainly to focus on recovery and my next steps in private. Also because we were planning on moving, which is no longer a thing.
When I experienced this stroke I felt my hand clamp down on my fork and had my inner voice abruptly and loudly instructed me to “ get up” I stood up quietly and announced to my partner at a family goodbye dinner/ birthday celebration that we had to go. By the time I got to my parent’s steps 2 minutes later I could no longer walk. My partner had to help me in the truck, in the ride over I could no longer orient myself in the space. I had double vision and couldn’t orient my body or find a door handle to save my life.
10 minutes later I’m at the hospital and my partner finds a wheelchair and scoops me out of the truck and wheels me into the hospital quickly alerting medical staff. The rest is black. I’m out for 12 hours. My family is told I may not wake up. I did wake up. I luckily retained most if not all of my vocabulary, motor function, etc. That’s not to say some things haven’t been hard.
If I were being poetic, I have a hole in my heart, I hope that would mean that my love is able to seep out more. But if we’re being realistic it sounds more like I was born with a PFO, and have multiple autoimmune diseases and it allows blood clots to shoot up to my brain.
To walk around with half the illnesses I have and still be somewhat fearless and optimistic, some may call stupid or naive or some sort of a survival method. But it’s really all I’ve known.
All of this opens the door for uncertainty in my life, but all of life is uncertain and where there is uncertainty there is opportunity.
As a Jupiter in 1st house and Sagittarius Rising optimism is basically my middle name. I look to the bright side in most situations, optimism while it can’t get you everywhere will at least help you open the door. That’s not to say everything is amazing, I’ve had some dark thoughts and days. L ike do I really want to keep doing this? Should I get a ‘Do not resuscitate’ tattoo? How do I move forward this time? Do I want to move forward? I honestly kind of want to throw in the towel.
Right now I am struggling with the feeling that I am being forced to retrace my steps, like I dropped my tent halfway down the mountain and I didn’t realize it till just now. The nice part about being on the mountain is even if it’s cold and raining the view is still usually pretty nice.
And while I am here retracing my steps, my peers seem to be forging ahead. I know however that we all have different struggles, and instagram creates a narrative of “everyone is doing better than you are babe. “ Also it’s important to remember it’s not a competition. We have the option to make it a collaboration.
If for some reason you also are being forced to retrace your steps when you want to be moving ahead… I have some tips I’ve learned from being a chronically ill person for over half my life.
Ditch the plan
Seriously let it go. Embrace calculated spontaneity. In short don’t blow your life up, but shake things up where you need too.
Allow yourself time and space to grieve whatever you need to, all life changes typically benefit from a grieving process. What that looks like will be up to you.
Create some sort of a routine, preferably one with healthy habits involved and one that’s flexible and realistic.
One that involves whole food, at least a bit of exercise and making sure you get dressed in something you feel good in or at the very least showering. You know… the basics, we are avoiding depression here.
Now that you have a foundation consider adding in meditating, journaling, writing, some time outside, or reading… really anything that brings you joy. I’ve been coloring a lot.
We are allowing ourselves to take our sweet ass time here, there is no rush. We will have bad days, we will have good days. Take your time. As I write this I will admit that I spent most of today in bed feeling sorry for myself and out of touch with reality. That’s ok. I got up at 5pm and did some laundry, showered and texted a friend. That’s a win if you ask me. We’re moving at our own pace.
Create a new flexible plan aligned with your new life circumstances.
What is it you want? Maybe youre at the stage where you really just DGAF and are wandering aimlessly thats ok too. Try something new then. We’re tailoring our lives here to suit us, not forcing ourselves to fit into boxes that aren’t our size anymore.
Truly accept where you’re at
Recently I read Audre Lordes ‘The Cancer Journals.’ And I think what inspired me the most outside of what was truly a wonderful read was her refusal to pretend she still had two breasts. She metaphorically walked through fire and the heat caused a chemical reaction and she emmerged in a new form. And instead of pretending to go on as if nothing had happened (which I have done before and see women and men handle their traumatic experiences like this often) she owned it. She embodied it. No hiding, just truth. Which I think many of could benefit from incorporating some of that into our own lives.
Eyes on your own paper.
This is about you. not your best friend, not your coworker. We are moving through grief, there’s no time for comparison here. It’s tempting to compare ourselves. Susie may just have finished writing a book, and Rick got a promotion? Cool, this doesnt apply to our situation. We need to find what’s relevant to us to help us move through grief and pain. Comparing yourself to others when you’re in the trenches benefits no one.
Just a pinch of Optimism…
You may feel stuck but we are always in motion. No matter how hopeless something feels if we find something positive within it we are able to move through it with new breath
We get to have bad days but we also get to let go of despair and embrace change at some point. Phoenix moments. I fucking love a Phoenix moment.
TAKE YOUR TIME.
Despite the world continuing to spin furiously it’s ok to have a pause. I promise you will be better for it.
When you fall off a horse generally you’re encouraged to get back on. Once I was 12 and I fell off before a jump, my horse stepped on my back and I laid there, I did not get back on that day. I let the EMT evaluate my condition before I got up and told my trainer I was never showing again. (I showed again. ) and then I somewhat dramatically made my mother take me for an X-ray. It’s ok to lay on the ground in despair for a bit. There’s no rush, this is a slow burn. Let it be what it is for now.
A change of scenery
I’m fortunate I’ve had the opportunity to spend the last few days and next week recalibrating In Hawaii away from home. Traveling often reminds us of how small and insignificant our “problems” often are, of how important rest can be. Of how beautiful life can be. Sometimes even just traveling to the next town over, or visiting a national park can be rejuvenating and much needed. If you can give yourself a change of pace, a new perspective, even if only for a weekend.
Verdure and Venus 