Warning, massive rant below lol.
Anyhow first of all I’d like to preface this rather depressing yet realistic rant by saying that I’ve been very alone lately. There’s been a war in my head. Or much like I wrote somewhere recently ‘I’m always surrounded by people but often very lonely’. I think it’s still human connection that I crave – let me explain.
See I’ve been crazy sick again, battling to stay afloat, then on top of that I’ve had so so many of life’s other stresses showing up. The main ones have been (obviously) dealing with my crumbling body, trying to juggle my new meds and their side effects (and searching for a cure), nowadays finding staff to fill all these extra one-on-one hours that I have, to then the pressures of my own ambitions.
And I have no real place to debrief or vent about any of this – actually I’ve heard that’s what friends are for!?
Now to go a little deeper along these lines, I kinda don’t really have any friends. Like sure I definitely have the long term I might see them three times a year friends, but in the daily or weekly grind I have nobody. Not even work mates or that cute checkout chick I might flirt with at the grocery store. Hence though, what I’m really saying here is that I’m always trying to do it all alone – well apart from my super awesome Naturopath and my Dad, and Jenny (a Carer who helps me heaps).
Look I guess I’d be a pretty shit friend anyways, I am a burden. I’m far too sick to do most things. And for anyone who can see beyond my daunting existence, my life is now entirely consumed by health protocols and restrictions – and even while I am out doing things as well. You know it’d just be great to go out and share a meal with friends, or just to go bowling or some shit, without constantly being at the mercy of my ball and chain.
Being the human that I was born to be.
I mean in terms of testing myself (and what I’m made of) this life it’s awesome, but a little help from the universe (or some sort of teamwork) wouldn’t go astray. I just feel abandoned in some regards, or in many regards (yet not in others).
Like recently I’ve been going on and on about making Youtube videos, well I can’t afford to pay anyone to do it so I’m going to have to figure it all out myself. It’s always hard work (figuring shit out) but I kind of love it now too. In fact it’s been like this for over 10 years, just working it out as I haven’t had much other choice (particularly healthwise) – yet I do wonder if I ever recover if I’ll then have to deal with PTSD. The anxieties of my life and this predicament are real and raw.
Then this week, a stress that I thought would’ve been a success, I appeared in this little featurette on ESPN. And truthfully I’m so honoured and humbled to make an appearance on ‘the big screen’ in the way that I did; it was pretty cool – but I just look so damn sick in the video. Well I am so damn sick. It’s just seeing that, a part of my heart broke.
You know I wish I could be happy about something without all my insecurities (usually health insecurities) shutting it down.
Everything is always so damn bitter sweet.
Also, I think people are starting to realise some of the finer details of my predicament. I mean sure I’ve talked a lot about ‘I can’t move, I can’t breathe, I can’t talk, I can’t eat’ but I think it’s finally starting to sink in for people. I’m a head lol. Especially if they watched that ESPN feature. And I believe a number of people are quite confronted and shocked by the whole thing.
This scares me a little.
Really all I do have is my words – which I type with my head.
I still can’t believe my life has turned out like this; especially considering the brute of a man I once was.
Actually I had an amazing conversation about all this last night with a Carer (one of the real true gems that I know), and he really helped me with some of this shit. He again talked to me about my situation being confronting for most, and the reality is that many people don’t know how to respond. Or that they express empathy (and mostly online), but does that count for real human connection? I suppose it sorta does? I mean it’s definitely better than nothing but where’s the balance?
As in (and this is more of what we were talking about) I have no doubt people sit there at their blue screens reading all my shit, and they might even feel inspired or grateful for what they have, or gain an insight – but for me I still feel so alone sporadically interacting with this computer screen. It’s like having a conversation with a charismatic brick wall lol. And sadly, fastly this is becoming all that I have. It feels so unfair right now.
You know social media shits me, social media these days is just full of people trying to be famous (I use that term broadly) before they’ve actually achieved anything. If you read any post, it’s often all about their agenda.
Heck maybe that’s all I do too.
And then to the people in my life, the Carers mostly, it’s just not feasible to expect to converse with them with such depth or in such a ‘friendly’ manner. As in burden them with my ‘real’ life. And sure I’m more than just a body in a bed, but at times I wonder if these people would even talk to me at all in ‘the real world’. Or to some, they’re completely numbed now as to how shattered my life really is, and others just don’t have the mental capacity to engage. Bloody hell some even talk to me with a baby voice – like I’m fucking stupid or something.
True love and support is very hard to cultivate in such an environment. And the Carers are here by choice, I’m not!
Disclaimer haha: yes there are a very select few Carers I am fond of, and I would be mates with beyond this workplace. You know like the dude I was chatting with last night.
Still, and moving right along… to then the expectation of those family members closest to me, I feel like I’m letting them down because I can’t be ‘me’. Instead I’m this sick guy who feels like I’m doing all I can just to please them, and please me. To be the person I am capable of being. Actually it’s so fucked, I’m always pushing myself – at times dangerously just to be ‘me’.
And I have very few outlets (that’s why I rant like this).
I mean, so to conclude this rather emphatic rant, I’d say no-one truly understands. I get that now. Much like how and why I have no-one to hold me emotionally. How can anybody ever understand my 15 year heartache – which still continues to this day. In actual fact (as I couldn’t find a support group), I’ve even been thinking about seeing a counsellor instead – only I can’t speak to explain my drama (I guess that’s why I always write here – which is actually helping – despite what I mentioned about social media earlier).
Nevertheless I’m starting to wonder how much weight I can bare before I break. There has to be an easier way.
Much love,
Mark
Mark My Words 
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