Tuesday, January 08, 2008

How disability changed me and how I think of you.

Everyone out there who is feeling weak and lonely try to raise your hand (struggles pathetically). Yeah me too. I got back from a very quick shopping trip to Seattle to face going into the dentist under sedation 12 hours later. The dental work is done and I slept off the sedation. Last night after sneezing blood I had to return today to the dentist so the pointy “bits” were ground down. So with Linda away at a four-day manager training course the closest I had to dialogue was nattering to a dental assistant that I had finally found the Japanese location of Ninja Town (tourist attraction where you learn ninja arts!).

The post I made while in Seattle was lost by Technorati so no one on email was notified; it has it’s own humor and can be read here.

What I want, maybe need to write about may make you uncomfortable because what I am going to write about you: the readers, the comments and my feelings of helplessness. I have been receiving support emotionally, in comments and even gifts from readers. And whether I deserve that support or not, I am very thankful for it. And I wish I could be there like that too. I lie in bed and think that ‘if only’ I was stronger, or could be awake more then I could at LEAST show my appreciation by commenting on your blogs as well, but often I do not have the psychical ability to do that. Which doesn’t mean that I don’t think about you, about the problems I read that you struggle with, the medical and social conditions you are in, and the ways I read you try to keep your spirits up, the ways you hit dark patches, all of it. So it means more that, in the midst of often your own shit you take the effort come and let me know, “Hey, I’m here listening, I like hearing you. You matter.” And that often I cannot do the same back, leaves me with a feeling not of guilt, but of frustration and helplessness.

This is how I feel: I lived the life of privilege that being an able bodied person gives. I did not think of any of you at all. I had other causes to fight like LGBT rights and feminism and sorting my crap out. I was living the life I “deserved” (insert hollow laughter), that I had worked hard to get my book published and my academic achievements. But now, my publisher hasn’t contacted me since getting sick (I don’t know if they even know), and all those people who shared Ph.d offices with me or those other interests couldn’t give two shits about what happens to me day to day. They are still off pursuing that life of privilege which able bodied people do. But the tips and tricks on living this disabled life, from dealing with pain to taking on agencies and paperwork has been given to me by people HERE online, those who have a pretty full plate medically. The people who have kept me going, have written me, have supported me are people who I finally SEE (well, not literally because I haven’t met any of you yet).

I have had my road to Damascus experience and what use is it, now that I am too fucking weak to be there for you when you need me? The truth, though you have no need to believe it, is that I think about you, the ones who share on your blog (I don’t want to list names) and I cry. I weep, partially because that no one, NO ONE should face a medical system alone, should face life with a disability alone, should face what so many face without the support they deserve. But equally the tears of frustrations that there is absolutely nothing I can do, right now, and maybe ever. I can’t even always return emails. My conversation with God recently has been a bit like this:

Why? Why would you show me this, help me understand their lives, their frustrations, their hurts, their human needs of comfort, or simple freedom from pain if there is NOTHING I CAN DO. What is the point of enlightening me if the most I can do is watch? If I could take on their situations, or pain, or conditions, I would. Not because I am a masochist but because I don’t believe good people can sit by, having been enlightened and pretend to not care.

But of course, I can’t take on your pain, or swoop to the rescue, and sometimes I can’t even comment back because I am on my own path which leaves me, right now, with only one determined and focused outlet. The voice. I can’t know or speak for people with disabilities; I won’t. But I can speak for one voice and maybe in it others will find echoes of their own. That is all I can do now, is write. It isn’t enough, and that is what this apology is about. As well as the thanks for all those who are and continue to be there. And maybe there is something wrong about me going to sleep thinking about people I have never met and would willingly suffer for if there WERE a way to take “the blue pill” which transferred your condition to me. Maybe your blog isn’t all of you or who you are ‘really’ and you know what, I don’t care. If you are hurting and struggling and if I could take that away I would. I would. I don’t need to meet you or determine your worth or how much I like you. That’s either what I have learned or just who or where I am.

Too late enlightened. I wish I had 'woken up' and had my eyes opened when I could have made a real difference. I wanted you to know that though I blog about me; I think a lot about you. It is just this is the only way I know how to help. Maybe to reflect a thought, or insert a laugh. I wish it were more. I’ll stop now because I’m pretty sure we are all embarrassed enough.


doctor trousers said...

Yes, but what you do for us is bear witness to our struggles - how much more terrifying to be alone, hardship unmeasured by others. It is such a comfort to simply have another being in sympathy, (empathy?)

I think of sitting with people while they die. I can't do a single thing to stop them dying, but what I can do is be with them - it's an honour and it's such comfort. I have been with people close to death and they tell their stories, to me, a complete stranger! And it a comfort to them to have someone bear witness to their lives, and a tremendous privilege to be allowed it.

Don't think you're not DOING anything by only BEING.

The Goldfish said...

I feel very much the same. Sometimes it is very frustrating; in fact I have often been here thinking "What I know might be really useful if only I could just get it out in a sensible way, with sentences and punctuation...", staring at the empty box for a bit before giving up.

But I guess that proves that there is more mutuality than you think. You are not a virtual invalid which the rest of us dutifully visit out of kindness, but a part of a community. I feel bad that I can't very often comment here because I am grateful for comments you have left and everything you write here.

rachelcreative said...

I wish I had something proper to say. Words fail me. But I want you to know I am out there (here). Reading, thinking, hoping, caring, knowing you matter - trying to matter too.

Tayi said...

It helps, you know. Sitting here at my computer, reading what you write, it helps. Not that it makes the pain any less, you can't take that away. But to know that there is someone else out there who faces what I face... it helps. If I can be so impertinent as to quote you back at yourself: "I don't know if I can stand the pain, I guess humans can stand anything, but I can't stand being ALONE with the pain."

Even if you don't write as much as you'd like, or leave as many comments as you'd like, people can read what you write here. The volume is not so important as the bare fact of writing. And everyone who reads what you write knows that they're not alone, so don't feel helpless!

gina said...

You say - "But I can speak for one voice and maybe in it others will find echoes of their own." Yes, yes and yes again. Stop apologizing - you sound as is writing is insufficient in some way - whereas I find your voice more powerful and compeling than any action I will ever have to offer.

I can't write well, I build. So your words and the echoes I hear in my thoughts become part of how I can learn to grow older in a changing body. As the goldish says, you are part of a community - one that includes some folks that value you highly.

Thank you -

Gaina said...

I got an email notifying me of your US shopping trip blog (which I enjoyed immensely) so I don't know what was going on with that (?).

It's no good me talking about god, because I don't believe in he/she/it, but I have to say that you do a lot for those of us dealing with pain and frustration by taking the time to read our blogs. I for one appreciate how much stamina it takes for you to do very simple things so to know that you read my babblings is much appreciated. As someone mostly surrounded by able bodied people who, as good as they are can never really understand what you're saying about certain things, it's good to know someone who *does* get exactly what you're trying to say.

Why didn't you have this awareness sooner? You weren't ready, that's why. I firmly believe that everything has it's time to occur so wishing things would have happened differently is not really productive. I have a little motto that I repeat to myself when it's all hitting the fan - 'Life is perfect, even when it's shite'. Meaning that what I'm going through is supposed to happen, it has a purpose and as long as I can figure that out, then I will handle whatever's being thrown at me.

This blog is all the thanks or acknowledgement we need. We understand that you can't reply to emails or comment as much as you'd like to, probably because we've mostly been doing this a lot longer than you have so we don't expect things by 'normal' standards and understand that sometimes as much as you might want to do something, sometimes your body won't let you, so don't be too hard on yourself ;).

Gaina said...

I just realised that 'technorati' is a blogger site and not a pet name for the technical staff here.

I'm such a dunce! haha.

Elizabeth McClung said...

Doctor trousers: (interesting name), yes, I've sat with people dying. Sometimes it is better than expected. Well, if it is enough for you, who am I to complain, I guess?

the goldfish: yes, I have the same feelings at your site; I want to say something which has meaning, which reflects the effort your put in writing and I in reading and "Golly, nice post" just doesn't seem to do it.

Community of the virtual!

Rachelcreative: Ditto back at you - I have been looking at your stuff on youtube - what dedication, you have your own voice that you don't give up on. I am curious, after a year, will there be a "Best of" self portraits?

Tayi: Yeah, thank techs for computers, we can be home and still read familiar voices. The next step is turning them into subliminal tapes for people in power. Thank you for coming and letting me know - and yeah, quoting myself back to myself.

Gina: thank you, well, at least I'M getting embarressed. Writing for me is, as the speech goes, more and more important. And to know that it means something; that is important to me too. I just keep thinking "Too wise, too late."

Gaina: I guess I'm having a hard time with the figuring out the purpose. I do like that here, online, I can find people who "get" when I say I am fatigued so did nothing today - which I wish people here did get - instead of, "Why don't you go for a long wheel in the sunshine, that will cheer you up!" - hello? Fatigue.

I'm glad you are letting me off the hook a bit but as to: "don't be too hard on yourself" - never really got that one down before and it doesn't seem the enlightenment has reached that far. So probably still have that baggage for a while.

ms bond said...

Silly...you probably impact more people every day than most people do in a week. And for me, a virtual reader, you seem a lot more real than the people I meet everyday. I have the best family, I have great friends, I have an understanding workplace but even I feel alone sometimes. And you don't just share the pain, lonliness and frustration of disability. You share the humor, the happiness and the wonder. You are a very wise peson and I might be just a little jealous. I think of you as a teacher...thanks for taking the time and effort.

Zephyr said...

Fight your own fight. Become as strong as you can be, and fight for youself. When you fight for your own rights, you fight for ours' too. Always remember that, honey. We're all one.

But I often feel the same way too. I feel really fortunate that I'm in place now where I can help the people I love in different ways, and give back. Make yourself strong and I can't say you'll get there too, for sure, but it won't happen if you don't take care of Elizabeth first.

glassroses said...

Your blog itself is the gift, and I don't think people here will feel deprived if you're not commenting since they probably find themselves in the same situation. Many of us with disabilities daily have to make choices about where we can put our limited time and energy.

Depleting your energies is going would mean less blogging and fewer great ideas out in the world. You'd write a great book on disability rights if that's something you want to or can direct your energies toward sometime. Women carry around a lot of guilt, but your only responsibility is to yourself.

As far as disability awareness goes, I still find myself not aware enough sometimes of others' limitations and chide myself for it. The thing is, we've all been taught that, to take a wheelchair as an example, that it equalizes the "playing field" and that disabled people are just like everyone else, and that it's discriminatory to think otherwise. That supposed "nonprejudice" is actually a prejudice meant to keep us from seeing others' difficulties even getting to a location or juggling a work schedule amidst hours and hours of drs. appts and high pain levels. And it sometimes makes it difficult even for those of us with disabilities to see the challenges of people with disabilities different from our own.

I would love to increase people's understanding of disability, but am not sure how. So often I get in angry, confrontational mode (as when a man pushed me a foot forward in a chair today because I didn't get up fast enough or when someone is sitting in disablity parking while I'm waiting for the spot). There's a certain place for that kind of anger, though I worry that people won't get the message if I'm cross, that they'll just get defensive in return or think that I'm just impatient or unreasonable.

glassroses said...

...Plus I think you're giving the rest of us permission not to do/be everything, too.

Wheelchair Dancer said...

ya know? It's kinda cool this internetweb thing.



Elizabeth McClung said...

Ms Bond: well, I am glad you have the friends and family and support. I am also glad that what I write helps too, thank you for taking the time to tell me that.

Zephyr: You're right on the money; and encouraging me to fight is a pretty good psych tactic (you know me too well). I am working and doing the paperwork stuff to try and get to a place where I can have options, to give back maybe. But geez does Canada have a lot of paperwork. I should get another degree for all this. I will take your advice and take care of Elizabeth (unless it gets in the way of another goal....)

Glassroses: I do want to write the book: "A First Year in a Wheelchair" - because I don't want to forget the feelings and getting deep sixed into medical land that so soon becomes commonplace. I want to advocate rights but I think I want more to do what others did for me; help them survive an emotionally painful and confusing time.

I like your anger example because why shouldn't we have the right to anger anymore? When we have often so much to be justly angry about? Boy, I would have to be really out of it before someone would push me forward and not feel my "your brain is going to explode" mind rays!

Wheelchair dancer: yeah it is; you're another person I want to meet, though the question is which do I want more, to see you, or to spin in your apartment?

Dave Hingsburger said...

I've come here three times with an idea of what I wanted to post here in the comment box but each time I reread what you wrote my comment sounded silly in my head. I like the idea of community and reciprocity - we blog writers all give what we can, when we can, how we can. I'm amazed that you manage to always respond to the comments here, something I never do at Chewing the Fat - I decided that if I did that I wouldn't have time to write the blog and I didn't know what to say. I liked the comment about us all being part of a community, all made richer by each other's presence all made more whole by each other's stories. I think that's enough ... at least it is for me.

Marla said...

I love this post. Beautiful. Thank you. It is sooo hard to keep up on all the blogs and read all the blogs too. I totally understand and figure you read when you can. Don't worry about! You are too sweet.

Donimo said...

I'm having a "staring at the empty box" moment (like Goldfish describes). My pain and fatigue muddled brain took in all of your words and of those who commented and it has all been very moving. Now, if only I could write.

I can't be very articulate tonight, but I do want to say that I recognize your grief when you write about not being able to participate as much as you'd like in commenting on other's blogs. I struggle with this myself. I can't always read through as many posts as I'd like. Sometimes, I can barely skim. And often, when I'm done... I know I am moved and have something to say but the words are throttled because of pain. Or it takes a long, long time just to get a few things out.

And now I know that I'm not alone in this, either. So, we move along, we write along, we comment or stare, we try... and we create a world that acknowledges all ways of living and being and connecting.

Katja said...

Thank you for your blog. As others have said, it is a witness and a gift.

I'm having a hard time recently with online communication, and haven't been able to say what I really feel, so I'll leave it at that.

Elizabeth McClung said...

Dave: I know the pressures on you and thank you for commenting and I agree, we are a community, a strong one I think.

Marla: you are so understanding, I will try to be there for you and Maizie as long and as frequently as I can.

Domino: Thank you, thanks you for comments and being open and honest and I know where you are I think and you know where I am and I think that we just get on as and when we can and that is enough - thanks.

Katja: Thank you for commenting and helping me feel it is worth it - I am not sure about the gift part on some of the bad days but I try to be a witness. I know the limitations of communication (irony for someone with 1000 word posts but it is true) I have hours to think on those, but only minutes to stare at the comment box - thank you for letting me know it matters.

Liz said...

Yeah, this blogging thing matters. Don't worry about comment reciprocity. You so kick ass and thanks for putting everything out there.