Lie #5: “I can’t handle this right now” and going on.

I’ve been hit by one of the most painful lies from a few different sides over the last few days.
When I listed the lies the other day, I missed this lie, a lie the person saying it tells themselves, to excuse what they are about to do to you. It hurts me the worst, and hits at the lowest parts of my life. Variation are “I just can’t read your letters/blog because I can’t handle any more bad news right now.”, “I just need time to step back and ‘process this’”, “I don’t know how to handle this”, or “I just can’t deal.” These statements come from AB people, probably you thought of as friends, people you may have been there for in the past. But when your time of trouble comes, when your illness comes, when your diagnosis comes, when you start getting visibly ill THEN like shaking a tree for rotten fruit, friends fall into two groups: those who stay (the few) and those who run away (with a lie to make it a virtue).

Those who are burnt-out can’t even survive really by themselves. I can understand that. Someone in a deep depression is just hanging on and surviving is all they can. I understand that (in fact, this person usually will have the ‘I can’t handle the negative place you are’ bailout of friends also when most needed).

People will decides that they do not want to face the facts and consequences of a friend/partner/mother/father/grandparent/child who is dying/has chronic condition/has chronic invisible condition or is going through burn-out/unemployment. And let us not delude ourselves, it IS a decision: they come up with an excuse and run away.
For those who act that way, I still care for them as a person. I find their acts despicable.

Why? Because that child, or friend, that mother, or partner who is dying, who has a chronic condition like depression, or other visible or invisible ones: they CAN’T run away. Oh, they want to. Some days they might pretend for a while that they can, but in the end, the requirements of living with these conditions means that if not managed, if not resisted, if not maintained, if medication is not taken, then the consequences are extreme. So no, they can’t run. And so they watch the back of a so called friend or family as they run off.
Running away is easy. It is always easy. It also makes the burden harder for those who stay, and for the person who is struggling.

Okay, hands up anyone who WANTS to get a diagnosis of cancer today? Okay how about ALS/MND? CFS/M.E.? Bipolar disorder/Unipolar Depression? Lupus? Lymes? Who wants an accident which will affect their spinal column and thus the nerves below that point? How about a layoff and unemployment? Come on, I can’t see any hands raised! What, no one wants a nice terminal illness today?!

No, nobody WANTS those things to happen to them, which is why when an AB friend tells you that ‘they just can’t handle it’ explaining why they will be/have been ignoring you, then it really puts the boot into you. You think, “What, because they thought I could?”

Be honest. Say, “I am self centered and cowardly and while you might be there for me, and care about me, if I CARE about YOU, that means that I might get depressed and when I go out to dinner, start my exercise program, go to movies or when I am on vacation, that CARING could make me feel…..bad. And I don’t want that.”

Yes it could make you feel bad. Because when you care about someone who has something bad happen to them, then you feel bad too. And sure, people have their own lives and issues and need to take breaks and can’t be there all I time. I can’t. There are more I would like to be there for, but I can’t even control or predict my consciousness. I try. That means trying to read blogs once a week, or two, or sending emails back once a week, I try.

Why, beyond the cruelty of a ‘me, me, me’ generation does this matter? Because this is the lie that will hold you in a prison of isolation. Because every person alive will go through a dark time; their period of suffering. And if all you know how to do is run. Then you have no friends. Because every time a ‘friend’ has bad news, isn’t cheerful or funny anymore because their child died, or they have a Flare, or an MS diagnosis, and you ran, who do you expect to be there for you? Who will care about you? No one.

And you will face that darkness alone.

If you are reading this, commenting, then this isn’t about you. In fact, you are probably one of the people who have been ‘gifted’ with those things no one wants to raise a hand to receive.

I have been ill, coughing up bits of aspirated food and other particles. Apparently last night I was delusional and telling Linda that the ‘radio in my stomach’ was telling me to do things. Pain, exhaustion, fatigue will do that. Make you curl up for some time.
But then you get up again. Not because you want to, not because it is fair, but because whether you can ‘handle it’ or not, no one will save you but yourself. Today, a doctor who said last time that this had become ridiculous and they would take me as a GP told Linda and I that “Well, I can’t really take on the responsibility.” What is that? #30? So we suck it up and go on. I went to badminton tonight. I will post the pictures tomorrow. Because keeping me healthy and alive is my job, my full time job. Whether I am ready to ‘take on the responsibility’ or not.

Part II: "And let there be light.."

And there was light.
It is not always darkest before the dawn; it is often darkest when it IS darkest. ‘Do not be overcome by the world.’ Do not be overcome.... If I suffer and if I am in darkness then let me fight. Help me up so that I can fight! Because I do not need to know how to fall, everyone knows pain, everyone knows suffering, everyone knows what falling is.
In the series Air, she has progressive peripheral neuropathy and once it reaches completion, she will die. And I suppose, so will I. The question then isn’t will I suffer? As I will. Nor is how long will I live as I live as long as can be. The question is will I attempt to represent the impossible in unimaginable circumstances? In every action, in each act of resistance, I tilt at the greatest windmill. I resist. I am not, I will not be what is expected of me. I will speak of the unspeakable, I will speak for the unheard. And I will act. But how? And what is possible? I don't know yet. See, THIS girl has gotta fly. But first I need a little vision, and help from my friends.

A DNR is meaningless as Linda and I already know what extraordinary efforts are. They are when a blood stranger comes over every weekend to assist my living and my dreams. They are passing out and then pulling myself into a wheelchair to write an email ‘because I gave my word.’ They are getting up every night to give me pain pills so that I can sleep. I know this is my future....because it is my present. So yes, I will rest...when I cannot drag myself further. Or because I have stopped to cradle Linda.

I do not plan to die for a long, long time to come, whether that is a month or five years. Because I want to know what comes next, don’t you? Yes, I am scared (aren't we all at times, times like these?), and so we use up more toilet paper crying in this house than we do in the bathroom. But please, not quite yet, because I am still learning how to use these new wings. And if I can only fly for a couple minutes watching a video, it is better than staring at a wall.

The video these images came from, winner of several AMV awards, can be seen full screen here or hit play on the screen below for the small screen version.

Living. Suffering.

I have had a headache for most of three weeks. I wasn’t sure how to start this so I would start with that, a binding headache, make your eyes bulge out, the back of your head blow out but held by hair and skin headache.

For me, the entire day is a racing against time, against sleep, to try and get things done. There are people who need caring, and I do care deeply. I cry for others because I don’t know how to cry for myself. I know what it feels to be alone and pounded daily, to have acid pouring down from people, from faceless organizations, raining acid. I want to save anyone from having to feel what I feel. I act, I reach out so that no one will ever be me. Never like me. Because I don’t know how to stop the pain, and emotional pain makes my own body ache, the bones old and brittle, the body ripped apart and set on fire until if feels like the skin holds only a shell and smell of ash. I want others to smile because I rarely do.

I was to see a cat on Wednesday, but that was cancelled by the cat owner. I don’t see people. I have not had an eight hour night sleep in over a month, or a six hour night sleep in over ten days. I am not getting better, as I require 11 hours sleep a day or systems will fail and the most common is oxygen. So it fails, and my muscles cry from oxygen deprivation. Because the body is a survivor, it rips oxygen from anyway or any part it can, from muscles from organs, from the structure of cells themselves, leaving them broken and oozing. The pain it leaves is exquisite.

I cannot remember a time when I did not lie for a hour or more in pain instead of sleeping, where I did not wake after two hours in pain: the pain that would make me pace or walk to endure it. But I can’t walk so I just writhe in bed, and cover my mouth so as not to wake Linda. At times, when I can’t stop moaning, I have begged for a gag. I cannot stop suffering but that doesn’t mean Linda has to.

I have chosen living because living is choosing. I try to clamp off my body, which shrieks pain in my bones, my joints, my muscles, my skin, lungs, heart, organs every minute I am conscious, and often unconscious. As I was recommended by USA specialist and Canadian doctors to have better pain killers in April but my wait for an appointment for the pain clinic was cancelled. So the seconds pass in pain, 1, 2, 3 until 60, and the minutes until 60, and the hours, and the days, and the months and I am still in pain. If I did not have pain, I would not if I was awake.

Here is a dream I had recently:

I was a detective, and this man was in a frenzy because his wife and baby were missing, and off he went with his gun. In trying to find out the solution I ran into people, one shot me in the shoulder, another stabbed me, and another broke my foot. But I found out, and I found the man who had taken over an office meeting room full of people. So I confronted him, bleeding and limping on a broken foot, and in the way of dreams it was both the boardroom and his bedroom. He had set his wife and child on fire. I got the people out and confronted him, trying to tell him that the bones on the bed were his wife, and he had killed her. That is why she was missing. He set fire to the room, trying to block it out. So I stood in the fire, cradling a dead baby, burnt, the black skin sloughing off in my hands, slick from mucus and slippery, the face sliding off and showed him that the baby was dead. Talking to him while I burned, the flames obscuring my view. I burned on, and on, and even after he put down the gun I kept burning, and the pain of it, radiating everywhere woke me.

I lie there, the pain the same, and realize that my maximum strength pills for sleeping had worn off early.

Another dream I had recently was where someone take a sledge hammer to my hands and feet. These are not nightmares, not the burning, not this as I feel no fear, it is just, ‘Oh, I wonder how I will escape now that my arm is broken, I guess I will drag myself.” And then they used a hacksaw with my feet and eventually cut them off, and I thought only, ‘I wonder if I can escape on the stumps.” Why would this be a nightmare as how would a stabbing or shooting make pain more? Why would I fear someone making me feel what I live every day? I saw a movie with a plane crash and people were burning, part of their body on fire and they were running and screaming, even avoiding help in their screaming. I could only think puzzled, “Why are they screaming....that doesn’t stop the pain?” I guess, if they would show it, I would be the person on fire hunched over a desk, doing.

I tried screaming in the first while, maybe months, maybe a few years and some times I do scream from the pain but now, I look at my feet and wonder which toes are broken and then have a shower, what is the point?

I guess I am surviving, except that I don’t know if I have the most basic level on Maslow’s hierarchy of needs: love. I suppose it is hard to see the love when a hug puts the pain so high I pass out. When touching me sometimes makes me stifle a scream and a ‘sorry about that’. It is important to be polite.

I have been pounded emotionally on a daily basis for at least three weeks. I have had hope taken away. I have been turned into a non-person. My actions of buying, my desire for manga is a form of nesting I do....a last resort to find an escape, an emotion or feel emotions I don’t have, even for a time. The last time I had collected 25 DVD sets to watch, to make sure I was safe, but that didn't build a wall to stop the emotional pain and so tried to kill myself. And Linda kicked down the door, and later I tried to kill myself, and I tried to kill myself until I had a safe room with no way to throw myself out; where Linda could lock me in, with books and other things but nothing I could hurt myself with. And I had a contract on when to put me in the safe room.

But here, and now I don’t have a safe room, or a contract, just pain and a life without hope medically: no GP, no specialist, the approval for IVIG but no one will sign to say, "I'll give it." I went to the doctor and they would not look at anything, not a bruise, not a vaginal sore, they said, 'you need to go to the ER', they don't deal with me except for prescription refills anymore. I don’t get my medical treatment at a walk-in medical clinic but at a pharmacy. The rest just goes on, or rots, if there are bruises or breaks. Without hope.

I am so far from joy that I don't know how to even consider it.
I’m sorry. I think I am a disappointment. I’m blogging every day because I said I would. But I don’t know if the phrase ‘better’ makes sense in applying it to me.

I still try to collect manga, even if I am too frantic or too much in pain to read it this moment in the hopes that I can find a place a space where I can and I won’t kill myself. Is that hope or survival?
I cannot think of autumn and winter, of snow and rain and being inside and with frostbiten hands. I am not joking as much anymore about the indignities and pain. I cannot think about it because I am climbing mountains every day just to stay in the living and the struggles of winter is too much to think about. It is the alps and I don’t know if I can want to imagine things getting so much harder, so much more painful.

When I wake in pain there is nothing Linda can do. So I lie there until there is no skin on my bottom lip from biting and the pillow is wet from the tears that run down the sides of my face.

I want to fight for life, for living. If I have a disease so rare, then why not be the person who is also so rare in the statistics that I live on for years. Except I can’t imagine this winter. Except my heart and lungs were collapsing this morning. Except that I had help breathing yesterday, and the day before. Not help with oxygen but the breathing too. The pain of breathing is like running your little toe at full speed into an oak table. It hurts like that to open my ribs. And I have to do it, consciously, breathe in, try not to scream, breathe out. Until the pills kick in and I sleep. I wake 90 minutes later begging for more pain pills. I have given up praying for no pain, or even for death, I just pray that Linda can sleep.