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.
6 hours ago