I was out someplace. Someplace where I sorta-did/sorta-didn’t, know most of the other folk there. Everyone’s doing their own thing at Someplace.
I remember the state I felt I was in. I remember I’d dragged myself, with every ounce of I-Think-I-Can, to Someplace, that day.
I had been *regular person* sick for a couple of months (3 flues and a chest infection), but I’d also been behind the *regular person* scenes sick, for a bit longer now (blowing my stomach ulcer open which lead to vomiting multiple cups of straight up blood and my body deciding to not keep food down, a mast cell flare up which saw me covered in rashes and my body just generally reacting to everything, and, finally, some weird anomalies turning up in my lungs, intestines and brain.) I was fucked.
I was so done.
I’d reached I-don’t-give-a-shit-creek, my life raft was dodgy as fuck and letting in shit like there was no yesterday, and I was now unashamedly allowing myself to be taken by it.
I had surrendered to Shit Creek.
So back to Someplace and that day. As soon as I got to the door one of the sorta-know-hers took one look at me and said, with eyes a’widening: “Oh my god, are you sick again?”
I replied: “Not sick again, just still sick.”
She looked, understandably, like she hadn’t ever seen or heard anything like it.
She couldn’t wrap her head around how I could be hit with illness after illness? How a human could look so awful, without there being a reasonable explanation and/or a fix for this horror show she was watching.
As I lay, folded up trying to ignore my aching body, and clutching my soul, I watched her doing her pull-ups and realised that we weren’t just different — we were polar opposites.
Her idea of what ‘sore’ feels like, her experience getting medical help, her ability to remain fit and (most of the time) illness-free, her ability to just keep getting as strong and fit as she desires with so many less roadblocks than me — and the radically different way society would judge the two of us on exactly the same topics … like fitness or our body sizes and my being overweight; on the days when I am not in the wheelchair, I would definitely be seen as overweight due to just not putting the effort in. Ah, jeez, the irony of that notion! That’ll fill another several blog messages.
Anyway, as I pondered all that, she lowered from one of her pull-ups, turned to me, and asked:
“AND YOU’VE SEEN A DOCTOR?”
By this point that question just makes me laugh.
It shouldn’t make me laugh. But my life’s experience has taught me that there’s laugh or fall into a deep dark depression.
And somehow my choice is mostly to laugh.
I nodded and mumbled a ‘Yeah, yeah.’ And then I saw it. That look on someones face when they can no longer even digest anything you say about your health. I saw it on her face.
So I quickly said:
“IT REALLY DOESN’T MATTER!”
I said this as a really fast reflex … to stop the swirling of going-nowhere thoughts that I could see were running round her mind.
And it worked.
She shrugged sympathetically, but then I could see her face relax and she got on with her business at Someplace.
Later that evening I had a moment of physical reprieve, which allowed a very clear thought to occur to me, and that thought was…
IT REALLY SHOULD MATTER!
Why on earth was I thinking or saying that it doesn’t matter?
Sadly, it showed me how much the medical community has mentally battered and bruised me during my lifetime thus far.
Positively, it showed me how much the medical community has mentally battered and bruised me during my lifetime thus far AND how angry I am at that AND that I am determined to see this changed.
People think/talk all the time about what imprint they want to leave on the Earth.
Well I hope to leave the Earth a place where people with invisible chronic illnesses NEVER EVER say ‘It doesn’t really matter.’ Where they never BELIEVE It/They don’t really matter, because they absolutely do.
I’m coming to the end of a 19 year marriage. It’s amicable. It’s a peaceful finale. I’m constantly aware of the reasons, the logic, the adjustments … they’re all easy to see, they’re ever-present.
As it turns out, the end isn’t the hardest part for me.
For me, the hardest part of the end is remembering the beginning.
The beginning is an innocent. It knows only of hope and endless possibilities.
It’s a beacon of light, reminding hearts of their way home to one another.
It’s a soft place to land.
In the beginning — there was no end.
And however real, the end I’m now standing in may be, it doesn’t make it any easier when I remember what the beginning felt like.
But I do recognise that I’m not the only person to have ever gone through this experience. Obviously!
And I can see that so many people go through this situation and have so many different experiences, all the time.
So I want to put forth the notion that in this emotionally confusing time when we are separating from loved ones, we might also be able to take action, no matter the size, and help remind other people going through this, that whilst they are separating from a loved one, they’re not separated from everyone.
So this is my action. A small blog post, telling a bit of my story, for my own therapeutic benefit, as well as to possibly help someone who may stumble across it and feel a little more connected, during their time of separating.
And especially express that I don’t believe there is any “normal” way to experience this. However you’re feeling, is your way, and that’s okay. We all have our own ways and they’re all okay.
We’re all okay. No matter how fragile we feel and for how long we feel that way.
Separated but together … we’re all okay.
Be good to you.
Currently All Round Messy and Emotionally Confused but Getting There,
But it’s okay, because all I have to do is look at nature’s flowers and my spirits are uplifted, I’m suddenly riding a raging florgy.
And I can always just think of happy thoughts and that will make me well again, too.
The only thing I’m more tired of, than feeling tired of feeling tired, is the bombardment of people (both on and offline) telling me that all my health concerns will be gone if I’m just more positive, or if a do their latest favourite juice cleanse or whatever other naive piece of advice they desperately need to offload onto me.
I am waaaaay too tired for this shit. It makes people frustrated when others give this sort of unsolicited advice, and it gives way to much power to the shame game.
Miracle cures … something, that after 30 odd years of hoping for, I now have a healthy understanding of just how non-existent they are.
I wish we all, in the health/chronic illness realm, could support and respect each other and not force the strategies that work for us, down other’s throats.
Note I used the term ‘force’. I think it’s great for us to share the things that work for us, but I also think it’s very important to do so with the acknowledgement that we realise our strategies might not work for everyone. This is how we share information that might actually serve our community, that might be incredibly helpful, whilst also supporting and holding each other up.
Crazy health journeys are difficult and isolating enough.
Let us celebrate our shared experiences as well as our differences.
I’m the only one of me. And you’re the only one of you.
We can only manage our lives with what works for us individually.
So if flowers and nature does help you, fantastic.
If your hobby helps you, great.
If your job helps you, brilliant.
If animals or your family do it for you (in an appropriately boundaried manner), fan-bloody-tastic!
All I’m really saying is that I think it’s so wonderful and useful to have something in your life that helps you to keep on keeping on, but let’s not become part of the shame game — let’s continue to help a spoonie out.
P.S. *Spoonie, in short, references to people living with chronic illnesses.
A well established self-saboteur who can see something good coming her way, but is trying to intercept the self-sabotage reflex = me needing some hoodie hibernation time.
Not everyone will understand this photo and statement, but for those who do, I want you to know if you’re trying to change that habit, you’re not alone.
This might look like a ridiculous photo to many people. And that’s okay. For those it looks ridiculous to, congrats on not needing to bury yourself in a hoodie. You can scroll right past this post.
But to those who relate to this. To the hoodie hibernators , I say this…
You are working on creating a new normal, and creating a new normal is painful, courageous and insightful. It also comes with a side dish of blow-you-the-fuck-wide-open, which just never ceases to catch me by surprise. You must face feeling an intense level of vulnerability that is rarely felt. You feel translucent.
You have to face your internal dialogue, which for me is feeling foolish, idiotic, undeserving, worthless, pathetic and more. But I have to feel all that, and continue on my path anyway. Otherwise the new normal never eventuates.
And sometimes, hoodie hibernation is all that can ease some of that discomfort for me.
So, to myself, and everyone else who is creating a new normal … I highly recommend a little hoodie hibernation time when things feel like they’re getting too much.
Just close that hoodie down and sit there for a while. Then when things have settled a bit, release those hoodie strings, set a small goal, and head towards it.
Here’s to creating a new normal! Everyone can do it, but it takes a truckload of grit.
Make the choice to be your own hero today/tonight. And take one step towards your new normal.
Not a day goes by that I don’t think of the fight I’m in right now and the fight that I have ahead of me, in order to get some kind of a life back.
I see photos like this one (below), from before my health spiral/degeneration, and it’s a bittersweet feeling that surrounds me.
But ultimately I can either choose to find hope and hold onto it with all my might, or give up.
And I suppose in a twisted way, it’s the knowledge I have of where I’ll end up if I don’t keep going, keep clinging to the search for hope, believing I’ll find it someday and believing that I am strong enough to make it through this reconditioning-storm, that keeps me headed in that direction.
Sometimes you’ve gotta see how bad it could get before you understand the changes you have to make in order to not end up in that worst case scenario.
I fully understand how lucky I am that I CAN see that other path. That I do FEEL I have a choice.