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.

Pain and dying: lay down your life.

Pain. Last night my pain was so severe that I used up the 24 hours of pain medication including my ‘breakthrough’ pain medication in the first 4 hours. The weight of my body, my limbs were crushing me in pain. I used my sedatives, a day’s supply, to try and get sleep. When I did it was of a guy hunting me down and hitting me with a baseball bat, or being thrown off the side of a building. In one unusual dream I was on board the Shuttle Challenger as it blew up. I used every opiate and painkiller I had and it didn’t stop the pain. I used all the nerve blockers and it didn’t stop the pain.

Nothing stopped the pain.

I groaned in my sleep, I groaned myself awake; and begged for more pain killers only there was nothing for me to take, not for another hour if I did not want to die of liver failure. How long does it take to die of liver failure? Three days? But I get my pain relief now? Great!

No, I was told.

But now, awake, as much as I feel like a cat who has been petted the wrong way for MANY hours, this is where I want to be. Alive. Alive and with my daily battle, how to make the greatest choice a human can have: to make a positive difference. I can, in my way, fight against apathy and the voice that says inside, “it is too big”, “you don’t matter”, “you can’t make a difference.” Last night, because someone fought for ME, I had extra padding on my bed: I was cradled as an egg. My pain was bad, but I was able to get some sleep. Hundreds of miles away, THEY had eased my pain, as they will ease it tonight. They fought for me when I lay helpless. They were there for me.

What or who do you fight for? If you are not struggling, whether it is to make yourself, your family, your friends, or your community, into something better, then perhaps you are already dead. Being a parent is a struggle, being a good partner is a struggle. Following your dreams is a struggle. Loving someone and being a good friend also means you will have bad times, you will do something stupid, you will cry. It HURTS. But it is worth fighting for. I know. I know.

I have almost died/died or been revived several times, but I’ve never been the one to fight, to be awake to pay ALL the cost. This time, coming back from Seattle and at Cheryls’ house I was the one fighthing, for hour upon hour. If I wanted life, I paid.

I was desperate. Not desperate people get when they are late for a ferry. Desperate like needing a miracle, and needing to make it happen now.

Because if I did not figure out how to put two systems back in line before I slept, it seemed, and after a few hours it became VERY clear, as the bright red blood was pouring over me, over my hands, that I would die. Not just pass out and let Cheryl and Linda deal with it. Dead. I was desperate to do things previously unthinkable, overcome phobias: if I needed to shove a needle into my heart, I would have done it. I was shaking, in shock and I couldn’t tell Cheryl or Linda how bad it was. I hadn’t told them in the 145 minute drive that my left leg was useless, my right leg becoming so. They were worse than useless, as muscle groups were locked, due to pressure on my spinal for hours. It was agony and I think the muscles were so tight in one calf section they ripped apart from the tension: one strand shredding, then another. But that agony was secondary to dying. “Just get me inside” I begged.

Agony was living. I had to figure out how to stay alive.

Somewhere after five or six hours of trying and agony and nothing working we took a break, and tried a short nap, though my breathing was cutting in and out. It was a gamble of a chance death over the growing probability I would soon fall over and bleed out. It was a prayer.

When I woke up, I was feverish, hallucinating and I still had to fix my body up. I had some horrific problems. I tried again, with desperation to do what needed doing, and this time it worked (EDS people, I now have some idea of what you might go through). I did not know if I had been internally bleeding for the last hour. If I had I was already statistically already dead. Because from my reading, at my level of anemia, any anesthetic and I wasn’t coming back out. So I was carried to the bathroom and waited to see if a liter or more of fresh blood poured out of me. If it did, I would have to go to the hospital because they were my only chance of living, to find what had ripped open inside and burn it closed, all without anesthetic. How much blood had I lost already? As once they put me out, would I ever wake up again. My research said no. It takes blood 21 days to replenish...if a delay in producing blood isn’t what is causing the anemia.

But there was no fountain of blood. It had healed somehow, some dark binding blood and that’s it. And only then did I let Cheryl check my abdomen for rigidity (sign of internal bleeding). My skin so thin she could feel the coils of my intestines. I was on oxygen the whole time but by this time my hands and fingers were purple/blue and I didn’t know if I was de-compensating (dying) or just if my body had pulled all reserves back to the core, abandoning my arms. So we slept. That was my second prayer.

I woke up. I couldn’t control my limbs but I woke up. I was alive and it was daylight. So I decided we were catching the ferry in 95 minutes. Nothing like exerting a little insane control to try and deny that sometimes we have no control at all. I had treated Cheryl badly, less as a colleague than an enemy, someone who might figure out how bad it was and call an ambulance and I would be dead and Linda would have a bill. Of course when you are delirious and hallucinating, it is unclear how clever at hiding things you really are. If I made the boat and lived for 60 minutes we would cross into Canadian waters, and the rescue copter and hospital would be paid for.

On the boat ride back, I entertained a 15 month old who played peek-a-boo. I showed her the pictures from the postcards I had with me. All still lying down. Still hooked up to oxygen. And I finally understood, what it was to lay down your life. To fight and spend your life with purpose.

I am alive. I should, with my memory problems; my health problems and my financial situation live a life in total fear. The only reason I don’t is because other people carry my burdens for me and fight for me. I was able to eat lunch because someone bought me utensils I can hold. I am alive tonight because Cheryl has watched over me, she knows when I am likely to stop breathing or when I have a fever (as I did off and on until this morning). I can sleep because Linda watches over me, literally carries me when I need it. Others watch over me, from helping me with the postcard project, to writing me weekly, to calling me to let me know that someone out there gives a damn. They haven’t given up on me. And if they won’t give up on me, I won’t either, however much my inner voices tell me I am not worth fighting for at all. For I am a thing, an animal, a sub-human. I don’t always look like a human, I scream and grunt and breathe in short choking breaths at times. I turn odd colors, and this planet doesn’t agree with me that much. I fight against my voices to give proper value to the gifts and sacrifices others make for me, on my behalf.

Spending our life is something we do everyday, sometimes in frustration (traffic!), and sometimes (more rarely) in deliberate action. But it is spent either way.

When someone spends part of their life for me: whether that is the money they have earned, the time they spend writing a card, or making or shopping something for me, deliberate acts people have done: this is a gift of greatness. Thank you.

I will try to list, another time, the long list of people who have done what I believe is the spark of the divine in humanity; to lay down their life for another.

No, not to die, to lay down LIFE, their life, the time they have to spend, they spent on me. They laid it down for another. And the other was I. I know of no way to give adequate thanks for that. But I can recognize it, honor it and emulate it.

I have run into people, recently, who are sick, not sick in the way I am, for all I have is pain and a body going to rot, but I LIVE. They don’t. They let others spend their life, they have decided not to fight for anything, including themselves. And they think of this as good, as normal. It makes me angry. No, it is not normal to ‘accept your bit’ and let it lie at that. Or to think politics and morals are the same. No law can contain the human body; lawmakers can only show their ignorance by deciding by law that one human is property of another, or one human is 3/5ths of a human being. Or that humans joined of different sexual orientations are not equal (Doesn’t God get a say….nope, the state constitution overrides God it seems). And that those who are disabled or elderly are to be weighed in economic terms.

When I first became severely disabled I asked, “What purpose do I serve in society that justifies the costs of my existence?” See how I had accepted the inequality of humans (of course, the same argument was made on the use of child labor 150 years ago). I am a human being. That society does not know how to incorporate me and others like me into the spectrum of what is human experience is not my fault. I hope Society can grow up, can learn, but the disabled, the elderly, the dying are still equally human.

In our culture, we DO treat the dying as sub-human. There is a circle of life (not a straight line into infinity, sorry to disappoint) and while we treasure and have protections for those who choose pregnancy and children, we have nothing really for those who are dying. Yet, it is the same circle. It is just there is no place for us. No societal aspect in which we are accommodated or even expectations we would be out in public at all! You know the one word I was too ashamed, too socially pressured not to EVER say for all the time I was away from home, the word I can only say on-line and in my own home. No, not ‘lesbian’, I can say that fine, I can shout it along with ‘Boobies!’. It was ‘terminal.’ Over and over people projected onto me that I was just like them, just sitting down and I let them. They acted as if I was stupid (“So you’ve….taken….a course at university?”), or if I was heroic (“That’s the way to show them”), or a stereotype, (“Are you wheelchair BOUND?”) but I never said the truth. I’m dying. I’m terminal. I have a degenerative condition. Because I knew they would have no way to deal with that. And socially neither did I. And yet, it is a shame because we are all dying. Only it is a few of us who know that, and the rest, well, they just stare in surprise.

I wasn’t doing anyone any favors by staying in the closet about death and dying. In fact, my denial, my need to feed their vision of me probably helped facilitate my OWN delusions and brought me to the closest I have been to dying while conscious.

On the ferry I thought of the Greek and other city states, who had a designated group who were those who helped decide the rights of the city against other cities. In one specific city, the women learned the sword, the men the spear and the armor to crush. These were people for whom all knew that someone would die every time they marched out. They fell in love, became friends and lovers, and then that group marched out and killed another’s lover or did not come back themselves. I am a pacifist, and an idealist but I can understand the appeal and ease in which one simply is, to represent your friends and family as you go to fight. It is harder to live, and to lay down your life, every day. People are broken. Children are broken and scarred. This is not fixed by marching out to kill someone: it is fixed by laying down a part of your life over and over and over again.

The things worth ‘fighting for’ are we, our lives and how they are spent. This is what I see in people. What I see reflected in those I know. They fight to remember that they are spending their life deliberately, laying down their life and that it matters. They fight while working long hours in a hospital; fight to save animals who are abandoned and in pain; fight to save humans who are abandoned; fight against yourself and your disease to BE there for those who fight for you. There are those who fight to have clean blood so that when, as I have been bleeding almost constantly since late Monday, as I may need to go to the hospital soon for a transfusion, that blood will be there. It matters. You have to remember that. Yes, it is a job, it is politics and jerks; it is dealing with a disease that never quits, that punishes you for nothing at all. We keep on because someone like me waits. I wait, for that blood, that letter, or for a smile of greeting from you. And when you have HAD it with the kids, when you have an argument with a friend, when you are hurt and instead of speaking what first comes to mind you think and remember the love you have for them. That is fighting within you for something that matters.

When I was able bodied I was a fool, believing that ‘once I get my job teaching’ or ‘once I get tenure’ or ‘once I get a deposit on an apartment for Linda and I, THEN I will make a difference.’ My disease has many gifts, the pain I love not so much. But I love the freedom, and the insight. For now, with all the power in my being I fight. Because there are so many things worth fighting for: things for which I am going to lay down my life.

Every postcard is my arrow, my act of resistance. Every package, every note, every email is my attempt to drive back this idea that somehow people don’t matter, or some people don’t matter or that people don’t matter equally. Like I said, it is a sickness. And it is my intention, entirely, for my next trick, to live a good many years, which I believe is possible, if only I were in charge of all the hospitals and could get things done (nice dream eh?). But if that doesn’t work, I will work my havoc here and there. I am taking GOOD care of this body, as I have another 1000 postcards to write. I will tell people over and over again that they matter, until they realize one day that they have been telling people the same thing because it IS true.

I do this not because I am in any way sanctified. But because I am one of those people who are broken, and maybe, because of the people who fight for me, that which is broken will heal a little.

Then one day, I will ascend to human. And I will matter.

I am not “bound”

Regardless of what newspapers constantly print about wheelies or people with illness or disability, I am not “Wheelchair bound”, nor am I “bound by my disease” or “bound by disability.” And I am NOT “House bound.” I say that because today, while I went down to the video store on the off chance they had released Supernatural Season 3 early (they do sometimes if it is a long weekend). The person denied that and wondered why I didn’t call and then said, “Oh….that’s right, you like to go outside.” Spoken to me as if I was some rare and unusual form of human or odd for a person with a disability.

Yes, I like going outside. On my high school question sheet: “What do you want to be/do when you grow up?” I did not answer either, “In a small prison cell” or “In a locked sanitarium.” Does anyone?

It vexes me (yes, use the lisp, “I am Vexed, and Very Vexed!”), that “person with severe disability” and “person who is ill and stays in home a lot” someone makes my going outside to be an oddity, instead of a natural human desire (since I have notice most people DO go OUTSIDE!).
I will admit, when you have a severe disability going out is a risk, how long will you be stable, what if something happens? While at home everything is set up for you, as you like it, and if needed you can always go to bed, your medicine from pain to anything else is right there. It is a safe space.

I have found that new things and risks follow the rules of three, whether that is just going outside to look at things, going to a new restaurant or a vaction or a new whatever (like a sport). 1/3 of the time it will be horrid. It will be the vacation from hell. It will be the restaurant trip of disaster. Or if you have just gone out to look at the flowers, you will be stung by bees, have a pollen attack and be in bed for two days. BUT 1/3 of the time it will be OKAY. It will be a little bland, nothing super but not that awful either. And then 1/3rd of the time, it will be GREAT! These are the time when you go out to do a little gardening and see humming birds, or go to a restaurant and there is a woman who starts singing opera. This is the time you go for a picnic and see foxes or squirrels or deer.

But if you don’t RISK and have the 1/3 BAD experience and then TRY AGAIN, you don’t get the chance “Great” experience.

So first I am going to tell you how I am doing. I am in bad shape. REALLY bad shape. And the last three days I keep TRYING to get better, but somehow I get worse. So now, I cannot really move, and I need support for my head and I am in a lot of pain, and I need oxygen and did I mention the pain because it is so THERE that I think I am going to mention it twice. So that is where I am at (plus I didn't sleep much last night - pain again).

But this is what I am going to do, and this is what I am going to challenge YOU to do. Because I’m your friend, and that is what friends do, challenge us to go skydiving with them (not LIKELY!), or invite us places or push our boundries: but also be there to support us.

So, this is what I will do. I will go out this long weekend (for North Americans it is a long weekend). I will go OUT. I don’t know if that is to the park, so I can see squirrels or just to go around the block and photograph flowers but I will go out and I will record what I did this weekend. So that is part I (that means there is a part II).

So my challenge whether you are disabled, or not disabled, as your friend is to ask you, to challenge you, to go OUT. Go do something. Get outta here! Stop reading (wait until the end) and think about what you are going to do! Okay.

Now if that means that you get your caregiver to help you to the porch, that’s fine, that is OUT, outside. And if you are in the UK or here and it is raining, maybe you will need to wait a day or find somewhere ELSE indoors. But the thing is, we as human beings take BIG risks and we take little risks, and every time we go out, we are risking ourselves emotionally (we have expectations!) and physically (for some of us that is a higher risk than others). So being able bodied or disabled we are all human beings, and we all have fear and we all NEED to take risks (hey taking a shower is one of the riskier things around!). So go outside, take a risk, and see what happens.

The second thing is that this week I was sort of accused again of being a liar because I guess when you see me on youtube and pictures and all that, well, that just can’t be true or something. Or I am one of those unemployed people with some ‘fake’ disability who just suck down money from hard working people and the system (Except I don’t receive a penny from any agency). So for me, I will GIVE something to someone this weekend. That is a very human act I think, the act of giving.

I have been blessed from readers and other people who have given me things: postcards, hello kitty stuff and last week an anonymous gift of a human heart (seriously! It was very sort of E. A. Poe. Also what about me says "Give human heart" - never mind, don't answer that, I actually know that answer.). I appreciate each postcard and act that goes behind the gift. And sometimes I am able to tell them that and sometimes I am not but it doesn’t negate the act, or the effect, does it?

So my second challenge on this long weekend is to GIVE something to someone, or prepare to, if it requires mailing. If you are looking for something small and manageable I recommend a postcard or a letter – you probably own it already and then there is just a cost of a stamp, or you can hand deliver it if that is possible. Or give a book. Or give a flower.

I would ask this actually NOT be an act of spontanous kindness, to NOT be paying the change of the person ahead of you in line or counting helping someone carry groceries. Not that I am anti-kindness and kittens. I am very MUCH for kindness (and kittens). I think helping people is super!

But here is the challange to GIVE, to choose, to think, to decide who and what and why it is right for them is not spontanous, but something altogether different. It is the tangible way we humans say, “You make a difference to me.” Or “I care about you.” Or “I though you might like this.” Or “I wanted you to know I was thinking about you” or whatever the message is in why you give what you give (please, NO LUMPS OF COAL!).

So that is it, 1) Get out of here, go outside (just once in three days is enough to please me).
And 2) GIVE – give something to someone, if that is possible at all.

Why, because we are not people BOUND, we are not BOUND to our house, BOUND to the ideas that people have of us, BOUND by fear, BOUND by the idea that risk of doing anything is too great.

And as humans, it is rather normal to think of us, of ME, quite honestly, and while ME is a word that is fine and good, I am asking as a friend, pushing a little if that is how it feels to you, to think of how to make someone else happy. And I know that there might be in your life the pain and the stress and the condition, the family problems, the work and relationships issues. But just a little time, a little something for someone. Surely there is a co-worker or a relative you don’t HATE (well maybe at least a co-worker!). Someone you know, someone you have heard about, some child (kids actually LIKE presents), some old classmate or friend whose address you have sitting around and you just happen to have a pen and paper…hint, hint!

I will report back how things go. You can too if you want, or keep it private if you want or say “Elizabeth is a freaking nutcase”, if you want.

Also if you have no postcard and WANT a BLANK postcard sent to you, so you can send a postcard to someone else, let me know okay? I did a post on my last little batch over at the Postcard Project if you want some ideas(I made a new post today - hint, hint; you can go look even if you don't want some ideas - hint hint. You could even whisper: leave a comment).

Go outside – take a risk and care about yourself
Give something – take a risk and care about someone else.

This isn't a challenge to you, this is a challenge for me; it is just I want a little company for my risk taking.

We are not bound, I am not bound. I am not a person who is ODD because I have my conditions and yet I still choose to go outside. Part of being human is the ability of choice. I choose to expand my life, I choose to try and expand another’s life. I am a human being, unbound.

Going on

Today I have been thinking a lot about ‘going back’ in different contexts. I think we believe that all of us get second and third chances. And we do. My response to a person who says, “Oh, I’ve always wanted to play the piano…..” is to say, “If you call for a basic lesson tomorrow, in five years you will be able to say, ‘I’ve been playing now for five years’.”

But also, after a hectic schedule like the last 20 days of medical tests and seizures, a feeling of needing to go to a life where I live without stress, where there is a routine, but often referred to as “going back to our routine…” Except, now, I realize that there is no phrase, ‘going back’, there is ahead, there is what will come and that is all.
Linda and I talked tonight about how nice it would be to take a few weeks to just create a routine; me doing the postcards and her making her bosses at work happy. Her immediate supervisor has heavily implied that since I am making Linda miss work, it would be better for everyone if I was put in a ‘home’ where I could be taken care of. That effectively she divorces me. I am certain that as we approach our 15th anniversary, it is not the government of BC’s position that if their spouses get sick, they divorce or abandon them to be more productive managers. Linda’s supervisor is just an able bodied bigot, and I told Linda to tell her quite plainly that I am dying, since that makes 99% of the population run away.

But if we do that, slip into the routine we will not see that neurologist by the end of August, and if we don’t, I am not sure what point there might be after that (in terms of strength or ability to do tests or get usable treatment). So that’s it, for me ‘living’ means that the neurologist says, “This stabilizes at point X for a year or two” or “With treatment Y, we can go on for at least a year, who knows how much more..” There is no going back, and I go on whether I want to or not.
People ask me questions, questions I cannot emotionally answer. Questions which are the equivalent of ‘choose one more thing you want to do while there is still time.” It is like choosing a coffin. Something I could have easily done a couple years ago; “Hey, this one looks nice.” Only now, have some mob guy stuff you into a car, pull you out in front of a funeral home and put a gun to your head. Listen as the trigger pulls back and the barrel indents into the back of your head. “Choose a coffin.” You are ordered.

Different isn’t it.

There is no opportunity for “do overs”, there is no chance for “fresh starts”, I look at my life and I think, Did I do all that I could at THAT time, or was I always waiting, waiting for my degree to be over and see where that led, waiting….

If Linda were not in my life, would my life be one that was worthwhile? Is my only true accomplishment that I have loved one person without reserve?

I built my life on the tenet of service and personal freedom through truth. And much of that will die with me. But I will die a woman who does not participate or collaborate in the facades of our dysfunction; personal or collective. Is that enough? Probably not.

I want the Angel to wrestle with me. Before I had so many fears about pain, about pride, about how I am viewed. I think most of that is burned out of me; I have begged, I have no fear for what normal people would fear about pain as it is one of the things I am losing. Today, going into the heat, I bled internally in three places I could SEE and yet, felt nothing. Oh, are you going to smash my toe with a hammer, haha. Oh no, are you going to leave me helpless, unable to move or speak? haha. Blind me? That happens almost daily. I lose hearing, and am losing hearing permanently. I woke today, as I do other days when the pain rose me to consciousness. Dragged myself, literally, out of bed because of the pain. I have pulled myself across urine, across unwashed bathrooms, leaned my head against toilets, bruised and torn muscles to stay alive, to reach my objectives. This is real. This isn’t a dream. This is what it means when you can’t breath, or your body is spasming and you are going to go into heat stroke.

Come Angel and wrestle with me. There is something more dangerous than someone with nothing more to lose. Someone who has and is losing everything and CAN’T FEEL their body. Emotionally I can be hurt, but that is because I choose to be. That is a choice I made, part of going on.

The truth is all of us are going on, yes, sometimes we can try again, or go back and get that degree we wanted, spend those 10 years in the job we dreamed of. But sometimes we can’t. I didn’t write the script.

If you spoke to Moses, speak to me!

I am scared, scared of the future, scared of no future, scared because every month past was better than the one here. And will the weeks be like that? But fear and being scared is natural. I will continue to live and take chances. LIVE. LAUGH. WEEP. Up to now, it has been easy, a few days of recovery, a few hours of pain free. Now, everything I do isn’t a minute equals an hour of pure pain but a minute equals five hours of total pain; insanity inducing pain, soon it will be a minute equals 12 hours. Now it will be hard. Everything will be hard. That is what “going on” will mean. Now we will see what drives me. And what supports me.
Tonight I labeled and matched 20 names to 20 postcards. I mailed three postcards. I talked to Linda for an hour. Then another half hour.

The doctors, the politicians, the people walking by on the street don’t care because they don’t have to care. I am just one of a thousand faces. And soon, after a vacation and a few lattes, I will be gone, in bed, out of sight. If I burned this city, they would care, because they would be angry, because they had lost THINGS, and they would be angry. Angry at me. Who should I be angry at?

When I go, be it now, next month, five months or a year or more, they will find a box of postcards, a box of stickers.

What was she doing? Someone will ask.

Fighting the wind.