My Space
Pale skin, ash hair. Blue peeling nail varnish. I reach for some pills, it's been nearly four hours. I can't slow down, there's no time. Thoughts catch in a net between my brain and consciousness, my bones ache so deep I feel I have bone where it can't possibly exist. I push, mentally, and chide myself for slacking. The questions come back, they are a curse I'm forced to experience every day of my life.
Her Space
"I have a friend, you know, Angie? Her husband, Dean, he's got bi-polar disorder. She drinks quite a lot, she has a problem with drinking. It's so hard for her to live with Dean, he can be really difficult! You know she had lung cancer, you know that don't you?" "Yes, of course, I know Dean and Angie." I nod and frown, the nodding goes on too long and too hard, and the frown is so deep I'm sure it will leave a mark. I just want her to stop talking. "She manages very well, despite everything she has to deal with. They're both successful and they manage." More vigourous nodding. My mouth is clamped shut, words are precious and cost a lot. "If they can manage then you should be able to as well. What's stopping you? Why aren't you managing?" There it is. "I'm trying! Everything is just really difficult. I'm in pain everyday, everything is really hard. I don't have enough resources to get things done, not even to live, I'm barely surviving!" All my effort goes into the words, with as much emphasis as possible, but it still sounds weak and pathetic. What do you mean everything is "difficult", what is "difficult"? how is it difficult? I feel pressured to justify every thought and feeling, but I lack the words to express what I know is true. You sound like you're making excuses, and nobody believes you anyway. nothing you say means anything to them, they don't feel what you do, they don't compensate like you do. Or do they? They must. It must be tough for them too. Like it is for me. "You've had it really easy, there are people living in awful conditions all over the world." You don't have an excuse. Defeat. She sweeps away my pain, my struggle, my feelings. One sweep, then another. Repeatedly sweeping. Every time I speak, every time I show her. She sweeps away my will, my fight. I feel my mind turning mushy and dim. My whole being crumples up on itself. Defeated. Numb. Useless. I nod. This time it's barely noticeable. Maybe she'll think I'm being rude, disrespectful. Or maybe she'll think I agree with her. I worry. It's only a fleeting moment. I shut it down quickly, probably taking a few other functions with it. No worry left. No brain power either. No thoughts. No feelings. No energy. Energy. The most elusive substance in my dim reality. How can you tear apart these pompous barriers when you are constantly hit back? Dismissed. Undermined. Belittled. Disbelieved. No empathy. Not even any sympathy. They don't walk where I walk.
Sanctuary - later on
The warehouse is full tonight. Pleasure fills the deepest part of my stomach, a glowing, tingling sensation that moves, wave after wave, through my whole body. This is home. "Hiya, how are you doing?" "I'm good, and you?" "Not bad, not bad." "I spoke to Eva yesterday and she said she was given the red pills. I've already had mine and I think they're pretty good, they're quite easy to swallow and then you see results really quickly! That's the best thing." "Yeah, they sound good, I haven't been given any yet, I haven't brought back my check sheet. I haven't filled it in yet actually." One of those camaraderie smiles crosses her lips and she nods her head. "Ok, well I have to get back to my group. We're trying the wave treatment today. I'm really pleased actually, I think it's going to be really good. Have you tried it yet?" "No I haven't, I'm still really behind, you know, because of my situation. That's great you've got the wave treatment, I'd like that! I spoke to Martha recently and she said the treatment gets good results and didn't cause her much trouble. It's such pot luck though, so many Experimentals, but so few resources, so few studies." "Yes I heard it's good too. I know, it's tough, that's why we're all here though isn't it?" "Yeah I guess that's true. Ok then, I'll talk to you later. Have fun!". A pleased smile passes between us and we bob our heads in farewell. My feet carry me briskly, my mind fired up with good feelings, egging my body to keep up.
OPEN DOCTORS
Collaborative Support
Agenda
- Pain management treatments this month
- Guest speakers
- Donations
- New members
- Prosthetics - 5(i) hair - 5(ii) eyes
- Mobility testing - seated hover scooters
- Upcoming events and fundraiser
I feel more comfortable than usual, a glow of satisfaction. 15 minutes to go.
The Meet
"Hello Outsiders, I hope you are all managing your time wisely this week! Today we have 2 treatments to present. The first is the electricity treatment, ElectroNode. We suggest this for those of you who experience nerve pain, or any sharp stabbing pains which are shorter lasting. Dylan will be presenting ElectroNode on table A. The second is hydrotherapy. We have two machines available to those most likely to benefit. This is a particularly experimental treatment testing temperature sensitivity and it aims to adapt the body's reaction to external stimuli. That's table B with Andre. Now for the first guest speaker Alex Norman.
"Thank you. Hello and welcome to another meet. Tell me, has anyone ever heard of the term Sanctifiable when talking about those who are ill or disabled? No? Well I'm going to tell you a bit about my experience. Last year I was working in Guadalupe researching some little used plants for a new remedy which I was combining with the latest technology. I spent a lot of time with the local people and learnt a lot about their culture. As a disabled medic I was met with very varied attitudes, and very often people would see me as all good or all bad. They moved between the two depending on our conversation... depending on their value of my interests and expertise, or maybe on their perceived influence over me. Many of them had a real fear of me... What I'm going to tell you next may be shocking and upsetting.
It was one day about four months after I'd arrived and I was invited to take part in a ritual. Now it's important to know that it is common practice in Guadalupe; to sacrifice people to the gods. A confidant of mine explained to me that the locals had decided I must be offered to the gods. I was to be left in a deep pit for 3 days to be tested. If the gods took my soul, the town would be blessed. If the gods did not, they would be cursed."
He pauses for effect. His words seem exaggerated, I have to constantly remind myself of the Tribe Wars in those awfully afflicted pockets of the world. I guess we knew we'd end up losing the advances we gained... Lost technology, lost connectedness. If only they had stayed away...
I look around and see the audience glancing at each other as though they are having the same thoughts. The speaker steams ahead, clearly pleased with the impact of his words. He is very self assured.
"Yes, yes I know, it's a harsh time we have lived through. So difficult to feel trust and closeness to those you know fear you and misunderstand you. There are still many who will never ever fully relate to your illness or disability, those who at times turn towards you and at other times turn away in fear and anger. The gulf has widened substantially, but we must stick together!"
My mind wanders, I faze out, feeling uneasy. Sanctifiable. Dispensible. Feared. How can we ever truly get away from it? How can we connect?
Back to failing structures
"So, please explain again, what's the problem?" Everything! What do you mean? I thought you could tell me! I don't think you can help me. I don't even know why I'm here. "I've filled in this form, I'm applying for support, but they've said I'm not eligible." "Well, mmm, yes. You should have replied within one month if you wanted to appeal. Why didn't you come earlier." I feel my face redden, I start to feel flustered. I feel my mouth clamp shut and my eyes just stare. What can I say to that? What about... No. It'll sound like excuses "I thought I would apply for the extended support." I change approach, staring at the concrete walls and piles of papers. "Extended support is for people who need to be cared for at home and who struggle with mobility." She gives me a hard stare and leaves a long pause for effect. My gaze feels blank in response. I can feel my insides churning and I wish I would be swallowed up by the ground. I can hear others' murmuring voices carry over the wooden dividers. I don't want to be here! Why did I come? What a waste of time. I wish I was back at home. "You can apply for support. You can appeal this decision or you can fill in a new claim." False light heartedness and a change of tact on her side. "But I can still apply for extended support can't I?" "Well you can apply if you want to. It's really for people who need care and have mobility problems." The hard glare returns. Dead end. Nod, nod, nod. Repeat. I'm struggling to think. I should probably stop nodding, it feels weird and doesn't add anything to the conversation at all. In fact it's completely misleading! Damn it I just want to leave now. "Ok." I pack up, ready to leave. "Well, let me talk to my supervisor and see if they can tell me anything. I'll make a copy of your claim." She stands up and steps over the papers. "Ok." "Can you fill this in please." It's an attendance card. "Ok..." I hesitate, unsure of myself. I gather up some courage and blurt out; "...It seems like you don't really understand why I'm here!" Maybe I can convince her I'm genuine. I wish it didn't matter. I want her acknowledgement and acceptance. Her understanding "Oh I do understand, you're here because you're not making enough money and you want to apply for support." Well, that's one way of putting it. Just keep your distance, it's not like it means anything to me. What you're really saying is you don't understand. Not really. Not the daily reality of living like I do. You just don't get it. You're part of the Bureaucracy. You had it easy after the wars started. Handed out your home, your energy. Everything there and ready. The structure from the ashes. Phoenix State. Yeah, sure. "Ok." Defeat. "Thanks. I'll give my supervisor a ring and see what I can do." Sympathetic cock of the head. Great. So she feels something now. That's just awkward. I didn't say I want your pity, or your puppy eyes, your reserved-for-the-needy hushed voice. I want real understanding and action. I do get it. It's either I'm a phoney and she can get rid of me quick or I'm helpless and desperate and she can't help, so she feels bad. "Ok. Bye." We're in the lobby, I linger and then catch myself offering explanations as my body is halfway out the door. I feel observed as a mother stares at me. Her and her daughter push past me. I manage to get out the door. Rushed. That feeling I'm about to cry trembles in the core of my being, like the world will simply disintegrate around me.
The Family
"I don't know why she behaves like that. You didn't bring her up like that. I'm sure it's that Doctor of hers. It wasn't right that they moved in together. She's just an experiment to him. A fleeting obsession." Melinda's grey wiry hair is sticking out at odd angles and she peers over the top of her oversized glasses. "I know. I just don't know what else to do, I've tried everything! The poor darling. He's so manipulative and controlling." Gerta's voice breaks and shouts Sad. Weak. Helpless. By contrast her body posture is stiff and unyielding, giving away her cold and hard personality. "She could do much better than him. I don't know why she's with him. I wish she was more of a feminist" Her expression suggests she's contemplating something. "I'm not backing down. She has to find a way to deal with it herself. She's not my problem, not my responsibility now!"
Later - on the phone
"You aren't listening to me. You aren't respecting my perspective. I feel hurt now. It's not kind. It's my truth and you don't believe me." How did we get here? Work brain, work! We were talking about when I fell ill. I told her that I want a dialogue, I want to be understood, listened to. It's my body, she doesn't get to have her own truth there!! Why is it about her suddenly?? It's ok my mother didn't do anything about it, well it's not really, but I have to start somewhere. The past can stay in the past. I've been here before. There's no way out of this one. "Melinda, I'm not being intentionally unkind. I'm sorry you feel hurt. We were talking about my health difficulties. Can we try again?"
Between phone booth and bed
I've got to do something. The guilt brings tears. Pain. Guilt. Where does it end? It's because I look "normal". They don't see me as disabled. They don't want to. It would shatter those rose-tinted glasses they love to wear, it would question their perception of themselves. They would have to take responsibility. Then they would be the ones feeling guilt, they would be feeling the distance. Somebody has to be able to close the gulf. I keep hitting one brick wall after another.
Home
"Hi honey. I'm back." "Hey! How was your day?" "It was fine." "Hmm, you're talkative..." "Yeah. I want to plug in for a while. I'll take the liquids now. It's all that keeps me sane." My body aches with a sadness I know is reflected in my face. "Ok." He walks close to me and embraces me gently, kissing my forehead tenderly. My spirits are lifted and I lean into his body, feeling safe and loved.
My Room
I walk over to the machine. It's the only hope I have. Today is one of those days when I'm so absorbed in my own thoughts and the pain, that I despise the world.
Then I plug in. I log into the online world with the machine afforded to so few. All those hundreds of people, wanting to know how it feels to be me.
The pain, the isolation, the everything. 290 followers. I wonder, how beneficial is it really? Are they sadists? Are they people who are also on the edge of society, but without a serious and chronic illness? Maybe they get a kick of altruistic happiness when they do it? I know they are really a very mixed bunch. Actually I don't know that. I just imagine...
I need to get comfy before I open the chat menu... The names are probably filtered through some semi-functioning part of my brain but I don't want to engage. Memories come back to me. I let them wash over me and my eyes glaze over. They fill the machine with lines of code and I chose the output half heartedly.
I see my pain points lighting up in the usual places.
Back to the Family
"I told her I won't get her the injections. It's just unnatural. Everyone else we know manages just fine without them. Everyone has their problems don't they?" She sounds angry, self-righteous almost. "I completely understand. Why should you pay for them anyway? You've done so much for her. You've really tried your best and that's all us mothers can do isn't it?" Reassuring words. They make them both complacent. "As much gratitude as we get in return hey?!" An out of place chuckle at her own wit. "I've felt so hurt. What she has done is so awful. It's selfish isn't it? She's so hateful" Projected anger, misplaced and self-absorbed hurt, her words and feelings flow without restraint. "I did all I could. I really tried!" Tears well in her eyes. She throws herself into her emotions. "Oh why did my poor darling have to leave us? She was such a sweet little thing, used to make me feel so happy..."
Why
Why do people have such unrealistic expectations? Why are they all so caught up in the drama their bodies and minds constantly create? It's just a distraction. Immaturity, selfishness. They are all so visible. I can't afford to be that way. But the doing. The doing that they do and I can't. That makes me sad. Defeated.
I have so many questions. All the time. I want to know what it is that is eating at my body and soul. I want answers, but no matter where I look, I find none. We need more. A change has to come. I've placed my faith in the Doctor-Outsider Faction, I want to see our future realised.
Written by Tala703.