I did not choose this disease, but it is mine.

This has been the weekend that felt like a gut hit: when you found your school had been turned into an hair-gel warehouse, and your family home is now a set for TV ‘comedy of slum dwellers’ pulling in 26 million viewers. And they haven’t even taken down your posters or your ‘third place pretty miss junior high’ award from the wall. It wasn’t pretty. Linda is sick. I got a fever and wrote the last postcards to post on the floor after I fell over and was too weak to get up (don’t even remember what I wrote so if you get some scrawl, you know what happened).

The Specialist, my last hope for treatment said he WOULD have helped us if only we had seen him 18 months ago….except we did see him 18 months ago….and then he wouldn’t help us. ‘Not my inch’ I went in INDY. Specialist actually said, “Well, you know there is no treatment for your condition…” Well, not the autonomic part. I passed out tonight because my heart stopped. It now has an evening habit, if I breathe, it stops, as I don’t have the strength to breath and have my heart beat at the same time. It is surreal, watching it on ‘the big screen’ I call my heart monitor now – “oh, it’s stopped!” Linda says, while I clutch my chest, old news to me.

Friday Linda and I spent seven to eight hours because with she is the primary care giver and sometimes it is hard not to hate the disease, and also hard not to fuse the disease and the person. It is hard not to feel, when any forgetting causes others pain, that you are failing. I am failing because I cannot remember three days ago, she is failing because the medicine isn’t here, etc.

I decided that I am not actually responsible for getting this disease. I did not buy it, or test drive it, or pick it out at a factory. I can’t remember things. If a person makes a snide or pointed remark about that, then that is their problem, and they need to go somewhere and solve it, like therapy.

I did not know if Linda was going to build walls in her heart, if this was as far as she went or not. It feels to both of us like the big descent. The top of the roller-coaster where there seems no bottom as the car keeps turning further and further towards the ground and then you start to drop. For me, there is no ‘chicken line’ for getting out, there is no closing the eyes, there is only what I call ‘The Fire’ and that is all. And few if any will go the distance, and I know that. It hurts, to be alone, to know the isolation will get worse, but people don't want to see what it looks like when all falls down.

We talked, and expressed fears, and anger, and irritation and I am trying to create multiple weekly respites for Linda, I am going to try to be more positive. She is going to make a place where I can feel safe. And I am not going into a Care Home. Because there is a fantasy that if I go to Home that we can spent the time together as ‘quality time’. Except the same paid people who don’t care for me here will be caring for me there, and for me there is only one thing keeping me going: Survival. And survival in a Care Home would be doing what it takes, and that isn’t sitting on the porch in case Linda drops by so we can have quality time. And what is that? Talk about five years ago when I remembered things.

This IS the time. If we want quality time or better quality, we have ourselves to find it. This, right now, might be as good as it gets. The people who are here, like Linda, get so used to me in pain, and so tired, very tired, that me in pain has no meaning. Linda would run to help someone who twisted an ankle but after several hundred nights of tears running down the sides of my face, or moans, I am just a lump that stops sleep. That is what it is sometimes. Hopefully not all the time.

“The Fire”? It takes you to the limit of what can be survived, both as a human being living it, or someone watching it. And that is FAR beyond what can be stood. What can be borne. At some point you have to turn away, if only a bit, to shield yourself. There is something for each of us that we can’t stand to watch. For most care workers it is ME, in a level 2 seizure (a level 6 would rip muscles, leave bruises, or internal bleeding). And knowing that EVERY single thing will get worse, will stop working, or hurt more, whether it is simple as swallowing (3 days or an IV), or new ways of pain. And there are so many types of pain. At some point, the eyes and heart need a break. For those who care.

Except for me. I am strapped in and will ride the whole way. If I want to survive, not just as a body in a bed, but as Elizabeth, as I AM then I must always turn to face the fire. No matter how hard or impossible, I HAVE to do it.

In the Bible, Daniel , three of his friends are to be thrown into a fire so hot that it kills people who even approach it. It is made because the king made a gold image of himself and only three would not worship the king every time he felt like it. Shadrack, an ex-prince of Israel, tied like cordwood faced Nebuchadnezzar and told him that even if their god did not save them, it changed nothing, and they would not worship him. The king in a rage had them thrown into the fire, so hot that the soldiers which threw them in fell down dead.

Weird story right? But for me, it means so much because Shadrack said he COULD be saved, but did not expect it. Nor did how he feel change, or how he choose change regardless. He would not do whatever someone who bullied and threatened wanted.

I never wanted to have Autoimmune Disease Autonomic Failure and Peripherial Neuropathy with a Seizure disorder. I didn’t ask for it. And yet, unless there was a way to stop or cure it, I would not give it up. There is no way I would ask for another to carry this, if giving it up meant that some other person, some other statistic got what I have already lived. Even though I pray, I beg, (at times) for death, for not waking up from sleep, or a seizure, for a massive stroke, but then I work full time on surviving again. It is MY path. I will not accept that I deserve it, or that it is my fault.

In a world where ‘someone must be responsible’ that is so ‘wrong’. I do not deserve this disease. You do not deserve your disease. I will do everything I can to improve my quality of life but I will not tolerate another to mock or abuse me or another because of a disability and disease I or they had no control over. Yet, this is where I am. And while I could have been saved, I likely will not. So now it is time to face the Fire.

The Fire means that my ‘right now’ may get five or 10 times worse. On my 1-10 scale, for almost all, my 2 is your 15. It is your worst fear, going on for days, then weeks, then months. Why do you think I have guys who hit my head for 9 minutes in boxing and LAUGH while it is going on?

Even what I can’t feel hurts. The bone hurts, the bone marrow hurts, the muscles ache, they scream, they explode like a strike of lightning and that is just one of the over 200 bones in the body. Does my pelvis hurt? Yes. Does my horsehair nerves hurt? Yes. Does my FACE hurt? Yes. That is just life.

The worse things get, the less I can get out, the less I can have fun – Oh I tried to go to see the squirrels twice recently, but it was a disaster, the less people want to watch. But I will keep trying. Always trying, always striving to be more, to be MORE. To grin more. To watch me crawl across 50 feet of broken glass with a grin between the other expressions, the blood coming out my mouth, it would make people ill. I spat out the blood this morning from a couple bad ones last night. It is what isn’t filmed or photographed. And it will get worse.

I am lucky. Linda and I have made a pact. I don’t know how much longer I can keep going, or what it will look like, but I will keep breathing as and when I can. Orwell said in 1984 that "In the face of pain there are no heroes." I don’t believe that. I believe that hundreds to thousands of homes, behind the veil that we as a society pull over the sick, dying and disabled, that there are plenty of heroes. I watch the Olympics and I envy them, knowing the hours of practice at a sport they love. People think they are heroes, doing what they love? I think of those who competed while injured and that is hard, and yeah, inspires me on a bad day, but that was just a day or two or a while, but some people, they face the pain and go on for months, years. Orwell could not imagine a world where someone would face the pain and chose it anyway, and then do MORE.

‘Enter the Hero’ says one of my favorite characters, Peco, in a film called Ping Pong (nominated for 8 Academy Awards). He says it every time he enters the competition in Ping Pong, only he has natural skill but is lazy, and loses. And then he pouts….and throws things. And some point, having dropped out, almost, he starts again, and trains, and trains. Meanwhile, his friend, nicknamed ‘Smile’ as he never smiles, and has no natural skill, just pure hard work, starts winning. Smile kind of hates Ping Pong but likes friendship, and at the final competition sits in the stairwell, while Peco has worked his way back into the quarterfinals.

“Do you believe in Heroes?” Smile asks his coach. Who tells him no, just hard work.

Smile says, as he listens to the crowd, cheering Peco win to the next level, “I’ve been waiting for you.” Sometimes it is enough to be a hero to just one person.

When things are bad, very, very bad, and all I can feel is a hand, or smell something, or see white, I go on, and try to think of a joke, between the pain. I will hear myself scream and wonder why there are so many ways to hurt and not near enough to orgasm. Ha. See, I did it. To be gone for a time, to come in, dopsy in my face, in INDY and have someone, without hesitation say, “Good to see you” and grip my hand, it is, something that is valuable beyond words.

I work so that I may be ready, to be the arm, the voice, the person who reaches out when there is nothing left to hold. I work so that I am that again with Linda.

“Enter the Hero”

A type of hero: a brush with greatness.

I think many people as they are children, as they grow up, pretending at heroes, or reading about heroes in comics decides they want to BE a hero. I think of the story of one woman who had heard so much about Abraham Lincoln and admired him that when she was finally shown him close up pass by the woman said, “Well, he’s not much to look at is he?”

There are different types of heroes. Yes, there are those who train to go into burning buildings, who we call upon in times of need, who are there for our medical and other emergencies. That is one type of hero. I have to admit I was attracted to the Welsh police for if not for the stupid hats the women are required to wear.

Then there are the types of heroes that change lives in quiet ways, those like David of the Japan Cat Project, like Tammy with her Cat Refuge and Shelter; like the teachers, parents, the pastors, the people who by day to day work make this world a better place. Those who change lives by reaching out, by noticing the quiet child or the acting out child and work to help them instead of label them a problem. These are heroes and a lot of us have memories of a teacher who made a difference, emotional, intellectual, the gift they gave change from person to person but those people are heroes too.

Someone today said that often people choose the easy answer over the complex one. That’s how we like our heroes, to be Supermen, or people with extraordinary ability. People tend not to think about what someone like Stephen Hawking had to overcome to educate and revolutionize the way we understand our universe.

In the film To Kill a Mocking Bird there is a scene after Atticus has fought hard, fought clearly in a trial against a black man sexually touching a white woman. The courtroom is empty except for the gallery where his two children young female Scout and her older brother Jem are with the black community. “Get up,” one man tells Scout, and she looks at him in puzzlement, and he just says, “Your father is coming.” And as Atticus walked out of the courtroom, empty but for the gallery where every person rose to stand as Atticus passed by. He was a man who spoke for those who were denied a voice; a person who would not relent or compromise himself to public opinion, a person who gave it all, even when the outcome was predetermined from the onset. He was a hero. A rare and special type of hero, and for once, while still living, he was recognized as such. He, for a time, wore the cloak of greatness.

I knew when I read that book and saw that film, what kind of hero I wanted to be. The hard kind. Don’t mistake me, the people who do all those things, day after day for 10 years and change the world, they are heroes, unacknowledged heroes. But to act, because you know it is right. Not because you believe it is right, but because you KNOW it is right, and everyone else knows it too, but no one else will act, and you do. That is hard. That is greatness.

I know the feeling because there is total terror inside. Because you have no idea what will happen next, and that is terrifying. And yet you still have to act. Perhaps, probably there will be violence against you, perhaps, probably you will be hated, spurned, rejected.

When I was a child and I was being hit, and cut, and tortured and raped, I waited, I BELIEVED that someone would come. That a hero would come and I would be saved. No one came. I have ached looking out over the city to be the person to break down the door and save the girl or boy who is lying there thinking the same thing. They have been told they will be protected, or that God is watching over them, or if there is trouble the police will come and yet no one comes.When I started to talk about my sexual abuse experiences, I talked to my therapist/counselor about talking about it, and I was warned, told that I could be physically attacked. I was told that it is not uncommon for mothers to try to shut up the voice that is saying what they don’t want to hear so badly that they try to strangle the person. That the family would rather believe the person crazy than it is the truth. That idea is EASY, the truth is complex and difficult. But for every man or woman who writes, or speaks, or publishes about this; 5, 10, 100, 1,000 – I don’t know how many children won’t have to lie there begging inside for a hero to come. That’s because one already stood up; they took the abuse for talking about it and the anger from the family and society about this taboo subject so that the world would change. They speak for themselves but also for those who have no voice. They speak to give fear and pause to those who would sexually exploit or rape, that what they do in darkness will be examined in the light.

Talking or writing about it gives you panic attacks; it makes you feel like vomiting as you do it (at least it does me). And when you realize that the people you are talking about would rather kill you than hear you it is terrifying. But it isn’t really for them. And yes, the parents, the protectors often would rather hurt you, any way they can, from abandonment, to gossip, to verbal and physical attacks in order to just SHUT YOU UP. There is ALWAYS a reason for ‘not now’ or to not talk about it. What reason is there for the children who lie tonight praying for a hero? What is so important, what reputation, or unpleasant, or social taboo subject is so important that a person really has a valid reason if 100 of them live without that hell, if 50 could, if 10 could, if 5 could, if just one life could be changed?But to speak, to write, to change the world, until there are no children or others to need to wait for a hero to come and save them from that particularly hell, that makes these people are heroes. They save lives. Yet no one will say, “Stand up, SHE/HE is passing.” But heroes all the same.

I have only wanted to live and die in service. To die knowing that the other person was safe. I learned late that simply living the truth, and refusing to give in to demands to shut up about it (whatever ‘it’ happens to be this time) or pretend otherwise can produce the most extreme reactions. Day upon day and month upon month of vicious attacks simply because you are still alive. I am finding that when my care agency threatens to remove all care because I call the police on a worker, that maybe there is another group which has no voice. That people seem to think ‘keeping my job’ is more important than ‘doing my job’ and when not doing the job causes potential injury or suffering to people, a person who speaks about that is hated by all those ‘keeping their job’. A person, like me, who opens up investigations by the government branch against their own care manager DOES feels a bit sick in the stomach. Particularly when the care manager tries four times in one meeting earlier this week to get me put into care; a care center where I would be younger by 50 years than others and bound to my bed and finally UNDER CONTROL. I mean, under care.

I realize that I am not exactly going to be killed leading the charge of the resistance, or saving a drowning child. That is not my fate. That for me now, staying breathing is often the battle. That degenerate diseases and disabilities have their own battles which are unseen, unimagined. Yet, oddly it is here, that I can honestly say I have met heroes. People who, in pain, affected by disease and impairment, go on, regardless and bring purpose and joy to others. It does not diminish the pain, the fatigue, the progression of the symptoms, the medical debt, the thousand little things that drain away energy. No, but they continue on, doing their jobs, or waiting lying in beds, building, planning for the days they emerge again, because they have a heroes spirit. Just because they are trampled, they are crushed under the weight of social alienation and medical conditions beyond bearing, not for months but for YEARS, for DECADES and yet they go on. Sometimes just surviving the day is going on, sometimes preparing just ONE MEAL for another is going on, sometimes they take care of others if only just for a day. Or for some days they have a job, they share part of themselves. They resist the call to give up. I find myself in a company of heroes, in wheelchairs, in braces, in scooters, in beds, in hands covered with bits of superglue.

No, you will not be recognized for your actions. Nor your resistance, your going on. Instead you will pitied, or looked down upon. But I can see who you are. And while you will not likely receive it elsewhere in your life; know this, that inside I am standing because I recognize that a touch of greatness is passing by.

Falling: the opportunity, the choice

Falling isn’t the opportunity, nor the choice, falling often isn’t something you only know you are involved in until you are already there. For me there is falling down physically, falling out of bed, falling while trying to transfer, falling while rolling in my wheelchair outside, falling while doing sports in the wheelchair and falling during and after seizures. Plus I get down, depressed, in a funk. Often falling can be psychological, mental and physical. In many cases, when I have diminished capacity, I sleep better, because I only understand the most limited aspects of what is going around me. People say I am safe, so I believe them. People tell me when to eat, or drink. It is not that bad a life, honestly, when one merely needs to meow if you can’t speak and someone brings something nice to eat. And if they bring something not nice, just turn your face away and keep meowing (No, I’m not joking, I’ve done this. It isn’t a conscious thing, it is just a form of diminished mental capacity).

Then there are the seizures, and the mini strokes. Of which lately there have been many every day. Indeed, so many that it if continues, Cheryl and I are concerned that I will die; my concern from simply hemorrhaging in the brain. Cheryl is more pragmatic: I have a tendency in some seizures to eat my tongue and/or lip and if that is followed by a Grand Mal then the blood will choke me to death. I had three Grand Mal’s during almost an continuous hour of seizures on Saturday night. I don’t know what they look like but the descriptions aren’t comforting.

What I know is this; how would you like if someone picked you up out of your chair, spun around and then released you so you sailed through the air, smashing through things and into the wall. Then they picked you up and THREW you full force at the ground, and did it again, and again, and again, and again, and again. Know how much time that is? About 90 seconds or so: about half of a typical Grand Mal. Or they could slam your head against something for say, three or four minutes, while kicking your ribs. That’s getting to ONE Grand Mal. You are terrified, you are in pain. Now, you can’t breathe, in fact your saliva and maybe some blood is going into your lungs and all you know is that you are choking. There is a froth around your mouth and someone picks you and sits you up and you half vomit/half gag out all the liquid you can. Then you have another seizure. Someone checks to see if you have blowm a pupil, if there is blood spreading in your brain (blood is like acid to brain cells, it eats them and kills them FOREVER). But then high amounts of electricity known as a seizure are BURNING a scar into your brain. It is a scar so strong that they often have to CUT OUT the section of brain where it is to stop the seizures. But you don’t care about that because someone is slamming you against the ground and your neck is spained, and your ribs are sprained, and your wrist is sprained, and your muscles against your spine are ripped, and the back of your head is bruised. And blood is coming out of your nose, or dripping down the back of your throat so you keep spitting it out. And you still have 25 more minutes to go. That’s is what an hour of seizures are like (it kinda sucks!).

So lying there, helpless, I (or anyone) has limited choices but the people around have choices too. First off is the choice to make you feel safe. You don’t need to have a seizure to want or need this (close your eyes, a bit of heterosexuality coming up!). You can have a hard day, or just feel the need to be loved, to be in a space where someone is watching over you. And that is a choice for both people, an opportunity, to trust, to care, to be there so someone you know has a place where they can feel secure. I am lucky to have people who do this for me, otherwise I would just like there, alone. Well not exactly like this, because if THIS was me I would be lying there and thinking, “Hot damn! And hour of thrashing, and loss of memory, fine, I HAVE C-CUPS, NO MAKE THAT D-CUP! Woo Hoo, when I can move I am going to go flaunt this all over town! Haha, no one will be looking at my face for WEEKS! Dude, I’m up here, hehe! Oh, OW!!!!” Um, sorry, took a little fantasy jaunt.

But the truth is that all around us, in society people are falling. People fall. They are falling emotionally, they are falling in confidence, they are falling literally. Yes, sometimes when I fall, people come to help, sometimes, after watching me struggle for over a minute, someone is shamed into helping and sometimes I fallen and people have walked away (“Oh wheelchair, that might be complicated”), certainly when a seizure is involved. Then it is 'Run away, it is someone else’s problem.' No, actually, it is YOUR opportunity. When I was harassed in my workplace, no one stood up for me; when Linda goes in to be demeaned, in her workplace, do her coworkers stand up and knock on the door and say, “I think this is inappropriate.” Or do they look down, like people who are uncomfortable hearing a lesbian joke but just say nothing. Will they watch the person who is falling walk by, their shoulders slumped, trying not to cry, and worry about their own job, or be thankful it isn’t them, or pretend they saw nothing. There are ALWAYS going to be people in the crowd, indeed a majority of people in the crowd who will do nothing.

And SO WHAT? I am not talking to a “crowd” I am talking to individuals. Crowds down read blogs, people do. Individuals who today, or tomorrow, or sometime soon will have a loved one, a friend, a partner, an associate, a stranger who is or has fallen.

So.....what will you do?

This is an opportunity, because if you were a kid like most kids (including me!); I wanted to be a hero. I wanted to save people like on TV. I wanted to rescue people from burning buildings, or find people lost in the forest. And here I meet Cheryl who has done just that and who IS DOING THAT....with me. And yet, in so many ways, I would almost weekly come across someone who was falling or had fallen. A older woman obviously on a limited income struggling to carry the bulk food back, going a few yards at a time. “Please, can I help you.” I don’t know how many times I have carried groceries even now in a wheelchair, helped out. I remember this one woman because she was so grateful (we lived in the UK), “I know you aren’t from around here.”

I said, “Is it my Canadian accent.”

She said, “It is because you stopped and helped.”

What will you do?

I hope that when the time comes, you are a person who can be leaned on. I hope that you are the hero who steps up, regardless of age, ethnicity, orientation or gender. I hope you are MY hero, the woman who cradled my head after I had been thrown from my chair. A few minutes of her life, yet a memory in me that stays when others disappear.

But what if you aren't the hero, but the one falling. Well, for me, lying there, fallen, there are options. Sometimes I do need to rest. In fact this is a bit of a problem with me (the resting) since that night I tried with my single moving digit, a pinky finger, which I had wrapped around a chair leg, to try and pull my entire body to the study, when actually resting might have been better. I could have choosen to let others help me, and sometimes that is a choice a gift that NEEDS to be given. Sometimes trying so hard just starts another seizure.

Accept it, McClung, you are not superwoman, you are not wonder woman! I did not manage to get to the study dragging myself with one pinky finger. I did however manage to move my body a bit so I could then curl my pinky around Linda’s shoelaces to untie them in hopes she would take her shoes off. Because then I could curl my finger around HER foot and SHE could drag me to the study (see, there WAS a plan!). What I am saying is that there is a balance; I could easily say, “Hey, I’ve had seizures, I’m really sick, that’s it.” And spend the rest of the time lying watching TV or having a rub down or whatever would happen if I actually rested (I'm guessing, I don't know what would happen if I rested because so far, I've never taken that option).

But resting is one way, or I could get myself put back in the chair, finish my long blog, which I spent all day doing and then continue for a few hours matching and helping stamp postcards. I didn’t get a lot of postcards finished this weekend, and what I did was entirely due to the help of Cheryl. I did however accomplish another project. And that was due to the help of Cheryl and Linda (who said, “I never believed, even though I was helping that we could do it.”).

Of course, that had costs! Being there for Linda had costs, and I don’t regret those. I have had seizures today and times I cannot speak (including now, and I started this blog with my eyepatch on), and today I have been in bed more than usual. I have not been outside in a very long time. I might look a bit like this. Bandaged, exhausted, on oxygen from an hour after waking up until bed (okay, Linda doesn’t actually let me take the knife to bed anymore!). But I did that so that I could be here for Linda when Linda needs me. Today, she didn’t, or not so much, I needed her more today.

But I wrote that post, one about my fears; I actually have nightmares and altered states where I believe I have been put in a home. I exposed myself and my concerns on the costs both financial and physical of me being a burden.

SharonMV in her comment tody pointed out that my being there, or rather if I was NOT there, if my presence was not there trying to drag myself to the study with one finger while Cheryl watched, then THAT would be a burden. That not blogging, that not making jokes, that not being ME, would burden a lot of people. I had not thought about that until now.

Because of that post, which was just for me about my fears about the last remembered while and the time before that was seen as an opportunity for many people. I don't know, but from Linda it seems that she was contacted and I was contacted by people saying, "Eat!" That they said, "Lean on us, for a bit." That they were heroes. They were determined not to let someone fall; be it Linda OR me. While for me, SharonMV reminded me that greatness is not only in doing great deeds but sometimes in hanging on, in being there, in not withdrawing, in articulating fears so that others can understand the disability experience. That greatness is in reaching out to others, in forms of cards, or postcards, or stickers or emails or in some cases a medical kit of Hello Kitty Goth band-aids.

In life, fathers and mothers strive and struggle to continue to be there financial, phsyically and emotionally for their children. Partners offer safe moments and havens for their loved one; supporting each other through life. It is not the act of jumping from a burning building that is the act of a hero, but the act of putting out a hand. Of saying, come, be with us, we want to be with you, we’ll share our food with you. Of making choices out of the opportunities that come our way. Of staying when things get tough.

One thing that being disabled and being in a wheelchair has taught me is that falling is inevitable. Hitting hard is inevitable. Being down, being depressed, being angry, being frustrated, having to be in bed ANOTHER day is inevitable. But how I choose to view those falls, and myself is NOT inevitable. And how the people around me react is not inevitable. And thank you for that. Thank you for each person who has over the last (insert time period longer than a few days - month/s?) has stepped up to stop ANYONE, not just me, indeed ANYONE from falling...on that day (we can't always control everything, we can stop someone falling...that day. Or we can be there to comfort them after the fall...that day.)

While it looks like I will NOT be doing the 8K this month, unless it is this weekend and I can convince Linda to let me do “just one more stupid thing!” But you know what, I will take up boxing again. In these moments where the pain killers (actually doubling them is helping me a bit!) make breathing only slightly ongoingly painful I know who I am and what I do.

I will box again. I will play badminton. I will go rock climbing (even though I haven’t for over a year and a half). I will find a NEW sport that no one thought anyone in a wheelchair could do. I will focus my will and I will return, no not to the health I had before, but the belief that what Elizabeth F. McClung wishes to do, will be done, no matter HOW many times I fall, or cry before I succeed. I am a living conscious choice. Yes, I have diminished brain capacity (we can talk about that another day) and diminished strength, the inability to heal, and some other minor/major issues. But I do not fear falling, I fear the time I stop making that choice to push BEYOND the fall.