Saturday, January 14, 2012


From falling down in training, to falling down in a fencing tournament then on to being in a wheelchair and the attempts to find a job (in a country with a 10 time unemployment rate for those in wheelchairs), I felt, through it all, shame.

Shame for every trip to the hospital. Shame for the $60+ for each ambulance trip and $80+ for each EMT call-out. Shame for every afternoon or evening ruined because I couldn’t go out, or worse had heart problems, or a micro stroke (TIA), or seizure cycle. There is the shame for the year and year where Linda was stuck in worse than Limbo, but rather a partner who, after a couple years, it became clear would not get better, and so our relationship, our holding each other up during down times was broken, by me and me alone. No extra odd jobs for me, no more hustling two or three minimum wage jobs to make the rent.

We don’t have euthanasia here nor does the ‘socialized medicine’ cover the costs of medicine, not even close. They cover part of the cost of an air conditioner if you have autonomic failure but not the cost of electricity, or anything else.

I can tell you that 1 in 35 women get MS, or 1 in 750 get MS and probably the stats are less for women who get cancer, and I can’t tell you what others feel but I feel shame. I am EXPECTED to feel shame. An RN comes into my home and walks out without putting on pain medication, indeed, she puts on two patches backward, soaking my top with Fentanyl, but leaves, job undone because as we reduce into the rudeness of undeclared hostility, she sees herself as doing a FAVOR for me, an act of kindess which I MUST act grateful for. That she gets $50,000 and is indeed part of a service industry, that she should be asking ‘how else can I assist?’ and have slogans like ‘we do it the way YOU want’ is ignored because I am a burden.

One of the first things I was told was that I am not craven enough to be disabled. I needed to publicly acknowledge my sub-human status in order to get the largess of care. So my GP calls my questions ‘time wasting’ and me ‘stupid’, ‘idiotic’ and worse. VIHA has in four years, only affirmed, twice, that they discriminate against me due to my disease. And the palliative unit Victoria was, until the late 80’s only used for those with cancer and openly questions if other dying people ‘should be allowed.’ (The answer is yes, but not those who die of old age, only the ‘right type’)

If I did not feel shame, I would be reminded of it at every turn. I am the problem: the doctor says it, the health agency says it, the caregiver groups say it. And if, at first accused, I am not a mental case but someone dying of physical cause, the attitudes do not improve, they get worse. Every appointment I miss, and I have missed and missed and missed appointments. I cannot have aid breathing at night because I missed the oxymeter test, then they were sick, then Xmas holiday, and missed the echocardiogram to determine how much my heart is enlarging as I die, and yet my GP is frustrated that I still live. I hear from Linda that her government boss is pressured to put down how my illness makes Linda a bad worker, the same complaint from 3 years ago, four years ago…

How can I not have blame, and shame for stealing years from Linda. For stealing her ability to smile, or laugh. Hurting her impeccable job performance causes me shame. How many events have I missed due to being ill? How much life do I have now to give? And when are they going to realize that without extra-ordinary circumstances, I don’t know how long it will take to die. But I will only be making less of the lives of those around me.

Maybe it is like when raped or abused, the victim is held up to a viewpoint that it must have happened due to them in SOME way. So there is shame here, as I MUST have been able to prevent it or changed it or made it different or better, or gotten the treatments which would have stabilized it, though I have asked EACH accessible neurologist in Victoria for application of IVIG, and two inaccessible, as well as every other specialist and person with hospital privilege.

I did this. I brought what we all fear and hate, Death, into your life, into your living room.

How can’t I be ashamed.


Baba Yaga said...

I don't know how you can not be ashamed. Alas. We're social animals, and we respond to the animals around us. And feel shame when not responded to.

Abuse strengthens that: shame becomes a default, and looking for the origin of things in the self ditto. Cultural stupidity strengthens it, from the insane division of the world into 'good people' and 'bad people', to the idea that bad things somehow should not happen to 'good people' - and that if Very Bad Things Happen, the person to whom they happen must have had a role in bringing them about. Well, it preserves the illusion of control a little longer, in those lucky enough to have the illusion.

But no, you did not bring death into my living room, or even yours. Your illness did - only so many years earlier than just life itself would normally do so. Your bloody-minded determination has also brought much of life into your living room; and at second hand, into mine.

My decision to click on this bookmark brings death into my living room. Obviously, I believe that to be of value.

You are of value, and beautiful. Shame misleads.

Neil said...

No, Beth, this time you're wrong - not that there's any shame in that: everyone's wrong sometimes, y'know).

You did not bring shame upon Linda, nor me, nor my living room, nor even upon yourself. You are not to blame for your disease. And rape victims are seldom, if ever, to blame for being raped.

Do you love Linda? There's no shame in love. And there's no shame in Linda loving you. She chose to marry you, after all, with all the hopes and love and dreams and aspirations marriage involves.

You've told us that your disease is hereditary; unless you could have chosen different parents, that heredity is nothing you could avoid.

From what I have understood in this blog, you have been abused in various by authority figures for much of your life, and you have been told that the abuse is your fault. Well, authority figures often get confused about their roles and responsibilities - if something is good, they'll happily accept the credit; but if something bad happens, then it's someone else's fault. Hell, just look at any politician for a good example of that!

No, Beth, YOU are a shining example of a loving, caring person. Your drive to succeed should have made you a superstar, and it would have, if your disease had not popped up to say hello.

Okay, maybe you weren't the best fencer (sorry if that's the wrong term - my bad choice of words and lack of knowledge/research) in Canada, but that's not your fault; on the contrary, it is to your CREDIT that you fought your disease as long as you did, and that you managed to get as far as you did in fencing is a testament to your drive and determination to succeed. You got that high in your sport DESPITE FALLING.

Elizabeth McClung, you didn't bring death into my living room; you have brought life, love, beauty, joy, hope, dreams, and a LOT of knowledge into my living room, and I thank you for that.

Oh, you're also responsible for some of the DVDs and literature in my living room. While it was your choice to offer them, it was my choice to accept your offers. Good choices, I'd say. Well, mostly. There have been a couple of books that I didn't care for, but they all taught me something, and I thank you for the offers.

Speaking of literature (such as it is), I have now finished all five volumes of the ECHO series by Terry Moore, and it looks like there may be more coming. Surely that can't be the end of it? Thanks for recommending it!

Now, stop listening to the self-doubt and the night-time voices (I know about them, 'cause I have them too!) and start listening to your friends and those who love you. Next time you start arguing with Linda, remember to tell her that you love her. There's no shame in how you have lived your life; there is no shame in arguing if you are arguing for the right reasons; there's no shame in fighting if it's for the right reason; and there is no shame in choosing to try to live.

Your choice in your disease has been to seek treatment; it was those damned authority figures who denied it, and blamed you for their failure. If it's wrong to try to cure sickness, then it would be your fault; as it is, it's to your credit that you have tried so hard to get treatment. Thank you for refusing to lie down and die on command, Beth! You have fought for treatment, fought to stay alive. There may come a day when you will choose to stop fighting, and that choice will be an honourable one. But more likely, I think, you will fight your disease to the death. It's just unfortunate that death will likely win.

For everything you have chosen to offer me, I thank you. For everything I have chosen to accept from you - love, friendship, tears of joy and of frustration, images of Hawaii and Japan, of you and Linda hugging and sharing a kiss or two, for exposing the weaknesses of the BC medicare system, for stories that have made me laugh: I thank you for all those.

Love and zen hugs,

Tina Russell said...

Awwwww, darling! (hugs) There’s no shame in dying and there’s no shame in wanting as good a life as you can, first. Linda wouldn’t do so much for you if she didn’t love you, if she weren’t in love with you, giving so much to make sure what’s left of your life is as good as possible. I’m sure you already know all that, but at times like this I know it can help to hear again.

I know how you mean, that people want to make it seem like it’s your fault you’re dying. I’ve always gathered, and I’m sure your thoughts are similar, that the reason people ask rape victims “were you drinking?” and returning veterans “did you kill anybody?” (both remarkably insensitive and irrelevant questions) is because they are trying to explain away what happened. If someone is raped, or forced to go to war, or dying of a degenerative disease, people around them tend to want an excuse to avert their eyes. The thought of things that bad happening to people (without some sort of qualification to make it “their fault”), especially people they’re close to or work with, is too much for most to handle. It makes their world too complicated, too bleak, require too much thinking. I think they’re stupid, though, and should learn that horrible things happen in the world, even to beautiful and wonderful people like you who’ve shared nothing but kindness and love with the world. (sigh) It’s all so... dumb.

Ugh, sorry if I’m just being depressing, or going over things you already know. Anyway, I think you’re amazing, you help me know how to live my life, give my love, and persevere in trying times. You’re my role model, my inspiration. You’re great, Beth, and don’t forget it!

Anonymous said...

I know this is all about you, however, I would love to have Linda come out to CA one day and let me take care of her. She is such a beautiful soul who always give of herself. She deserves to be taken care of and loved. For all that you complain about, maybe you should take a step back and appreciate what and WHO you do have in your life and all they do for you. I only wish to have someone like Linda in my life one day.

Bonnie said...

Anonymous, did you really just say that? Blaming Beth for not loving Linda *enough* Do you even READ this blog?
Oh, but you want an excuse to poach another woman's wife. That's despicable. Why don't you try a dating site for creeps, instead of trying to break up a marriage of over a decade?
Oh, yeah, that's right, you're cowering behind your claims of caring about Linda.
Please go away and don't sully my friends blog any more.

Anonymous said...

Um, Bonnie, no not trying to break up anything. Sorry to disappoint you. Last I checked Beth has this as a public blog. I am just saying that I admire the person Linda is. The sick aren't the only ones that suffer ya know.

Anonymous said...

Oh and for the record Bonnie, I'm a woman and proud of it!

Elizabeth McClung said...

Okay, her email is on girl's gotta fly, please email her there and forward the airplane tickets. Would that Linda had a better life than this, for in illness all suffer. I don't understand why some are painted as saints for we are all sinners and all saints in unequal degree. Nor the assumption that she is solely a caregiver and not a care reciever one that is true. I suppose in the years I was caregiving to Linda, I could have accepted such offers in theory but not in practice as it would not have been part of the caregiving she needed. I think she would be happier in Cali in winter than summer.

cheryl g said...

It angers me that so many have treated you so callously in your illness. It angers and saddens me that this is a society where it seems to be acceptable to make those who are most in need of help feel ashamed for asking for or taking that help.

I admit to feeling ashamed of my behavior and myself at times, especially when my actions or words cause you hurt. I have never been ashamed of you. I am extremely proud you are my sister.

You have not brought death into my life anymore than it was already there as it is in everyone’s life no matter how much they would deny that. What you have brought to my life is your caring and generosity, knowledge, new wonderful experiences, your unflagging support, your encouragement to take risks and grow. You did not bring death. Instead you brought the encouragement and lessons to help me become a better person. If I were magically taken back to the point where I reached out and met you, knowing what I know now and having been through everything, I would make the same choice without hesitation. If our roles were reversed I have no doubt you would do the same and more for me.

You are indeed beautiful and of value.

I watch Linda care for you and I watch you care for Linda and I have no doubt of your commitment to each other. I wish you both moments of respite and many moments to reaffirm your love for each other. I wish you freedom from the feelings of shame. I wish you peace and no pain and all the care and love you give to others returned to you in kind.

wendryn said...

Sometimes people suck. You don't.

I know people (the aforementioned sucktackular people) want others to feel ashamed because of things they cannot control. I know you feel it, but I also know that you shouldn't have to. You are living as fully as you can, and you should receive support for that from the community, not the responses you are getting.

You have not brought death into my house. You have brought an appreciation for life. You have shown me incredible courage. Our daughter has your name because you are amazing and we want her to know, always, that there are amazing people who will keep trying, keep fighting, even past when everyone thought they couldn't.

You have been attacked by an illness, and it is not your fault. You have done more than anyone could expect to fight it. You have reason for pride; I wish I could show you that.

I come here, I read, I care, because you matter.

TAZ said...

I agree, that it is almost impossible to NOT feel shame, for we are constantly told that we are somehow doing something evil for valuing or loving ourselves enough to ask to be treated with simple human dignity and respect. I too feel the same sense of shame.

*hugs* It's also when we are help responsible for others actions against us, you haven't done anything wrong Elizabeth, its the people who have treated you so badly who one would think would feel ashamed. But the world is screwed. And the bullies, it seems, in the end, always win. *hugs*

Anonymous said...

you just prove that life is a gift to be cherished and fought for- if those twits cant see it.. THEY not YOU are the waste of space. my love and prayers go with you both.

Lene Andersen said...

I can say rational things such as shame means you've done something wrong. Something you chose to do. You haven't chosen to be sick.

But it doesn't matter, that rational stuff. because when you get message after message from all these people somehow communicating that you have a choice (when they should know better), it's really hard to separate what's true and what's crap. Yes, you are a problem - again, not by choice, but the damn health professionals who have a job because of you feel free to treat you horribly. It's abuse, but it's systemic, subtle abuse and no one sees it.

I wish I could make them feel shame for what they do to you.

Just Kathy said...

I wish you didn't feel shame - because it sucks to feel that way - but I will not tell you that you shouldn't. I have felt shame for various reasons and being told I shouldn't feel that way only made me feel more shame. I admire and respect your honesty and transparency. Your willingness to give voice to your feelings and to say things at the risk of being slammed by strangers amazes me. I don't think I could be so brave. I see what you do not as "complaining" but as being honest and realistic about your feelings.

I have briefly been in both roles (caregiver and receiver) and I can tell you that for me it was hundreds of times worse to be on the receiving end. Not only did I have my own uncertainty, fear, pain, confusion, limitations, etc. to deal with (from which you never get a break), I was mentally the same independent person inside who still wanted to be doing things for myself. I worried constantly about the pressure I put on my caregiver - was she getting enough rest? Was she growing impatient and resentful? Would we have enough money to survive this?

As caregiver, I can tell you that I felt so blessed to be well enough and strong enough to be there for my partner in that capacity. It is actually a great gift to be able to care for someone you love and be there when they need you. Not to downplay the role/stressors/feelings of a caregiver by any means but like I said, I'd much rather be on that end!

You're right, our society loves to blame the "victim". I feel it is our own fear that causes that. We can create the illusion of safety if we believe that our own actions are solely responsible for our outcomes. On the outside looking in, one can say that they would have done things differenly and therefore had a different outcome. It looks like judgement but I honestly believe it is just deeply rooted fear.

I hope this feeling lifts soon and you can let go of some of those thoughts...we love you.

Olivia said...

Others have commented so eloquently on this post and I can only agree - I know you know the shame is imposed by society and not what you SHOULD be feeling. You have done an enormous amount of good by talking openly on this blog, and that work will reverberate in people's lives for a long time.

I think the mechanism for the shame thing is, unfortunately, simple and mostly unthinking - here's someone who had something bad happen, I don't want the bad thing to happen to me, quick! find a reason that they brought it on themselves, so I can feel safe. Or if I can't find a reason, just treat them like it's their fault, soon they will show shame, and that will justify the feeling that it MUST be their fault.

Lorna, Bob and Liam said...

I'm having some health issues here, so my lack of lengthy response is because of lack of ability,not lack of caring.

Shame? What everyone else here has said. Just. No.

Sending, as always, love and hope your way and Linda's...

Lorna, Bob and Liam