She sat with me for a moment, just a moment, and began to catch up with me. We hadn't seen each other for a very long time. I could tell something was wrong and I asked if everything was OK. She told me that cancer was back. When I had first heard about her diagnosis and that she was going in for treatment, I called her. We talked shortly afterwards and she said that the doctors were pretty positive that they'd got it all. Now I learn, they didn't.
There really aren't any right words for moments like these, so instead, I said the usual words. She looked at me with tears in her eyes and then, after a pause, said that it wasn't fair. It just wasn't fair. She was so young, she had always exercised, watched her diet, took care of herself. Her frustration built up as she spoke these words, then she said, "and yet people like ..." (pause) ... "you ... you know, the wheelchair, the weight. Well, its not fair. Just not fair." I swallowed back my shock and slowly we ended the conversation and she left.
I sat there.
Stunned.
I was surprised to hear about the return of her cancer.
Stunned.
I was surprised to hear that it should have been me. That would have been 'fair.'
I have had versions of this for as long as I can remember. Early on in my career when I began to travel and to lecture. A guy I knew pretty well, we would have, back then, called each other friends. Burst out that it wasn't fair that I was getting these opportunities, he had wanted to be a trainer, and he, well, he was trim and fit and much better looking than me. It wasn't fair. Just wasn't fair.
But this ... this was much worse.
I deserve death.
She deserves life.
That's how it breaks down. My fat, disabled body moves me from the category of one who has the same right to life and to love and to purpose to the category of person who is simply expendable. I can easily imagine a group of students given the exercise of choosing which one of the passengers would be thrown off the boat to save the others. I'm that guy. I had suspected all along that I'd be that guy - but now I know, for certain, that I am.
I have always been terrified by the slow crawl our society is making towards embracing the idea that it's OK to kill someone for their own good and for the good of the tribe. I am terrified even more now.
If my value as a working, contributing person, who has social connections, who lives with love at home, who finds joy in his life, who strives to make the world a better place - is trumped so easily by the thin abled bodied, all is lost.
I imagine myself ill.
I imagine people deciding that I need, not repair but elimination. That I need medicine but not the kind that eradicates disease or illness but the kind that eradicates the 'likes of me.'
It had begun as a conversation of two people catching up and it ended with one person letting another know that in a fair world - my life would be taken, swapped for someone more worthy.
In a fair world.
I'd get what I deserved.
Yet people tell me, those who support the kind killing of disabled people, that I have to trust that it would be done in a fair and compassionate way.
Well, I guess, I wonder 'whose' fair would that be?
And, I guess, I wonder 'whose' compassion would that be?
I love my life. That may may not be fair. But I do.
25 comments:
People who are in pain rarely chose the best words. "But I say unto you which hear, Love your enemies, do good to them which hate you,Bless them that curse you, and pray for them which despitefully use you. (Luke 6:27-28)
I'm sorry that she used her as her target of resentment. I pray for healing for both of you.
I guess we ought to be thankful that "life" isn't fair. I started life as a stillborn. I am now 65 years old and have lived my life with cerebral palsy. Because my body has tight and uncontrollable muscles and use a scooter for mobility, I am often seen as "sickly." Ironically, I am healthier than some of my able-bodied friends, who have become disabled through MS, stroke, or the aging process.As challenging as life with CP has been, I would never wish it off on someone else. I often say, "I love my life." And maybe that's the key--we have worked extremely hard to have a life, so we embrace and appreciate the life we have. My mother taught me to live by the Serenity Prayer: God give me the serenity to accept the things I can not change, the courage to change the things I can, and the wisdom to know the difference. It works for me.
Part 1: "It's not fair that this happened to me." does not imply Part 2: "This should have happened to you, because I'm better than you."
If I were in a less-charitable mood, I would say the cancer chose the right person to eliminate from society.
We don't EARN the right to live. It is given freely. Is it fair when a child is ill, a child dies? Of course not - does that mean we should wish it were a different child? No.
I must confess to schadenfreude - for just a second - when all the money in the world can't buy a rich person more time on Earth. It's bad enough that their money buys them the best surgeons, the best hospitals. Then I'm properly ashamed of myself.
Life isn't fair. Why should good health ALSO be given to someone who is thin and pretty? That's what isn't fair.
I really hope she didn't mean it, except in some vague sense of 'I did everything right so I should be immune to pain,' which is a natural reaction to having cancer return - for the sake of her soul. I'm having that feeling myself right now in a somewhat similar circumstance. But I would never wish that my burden be placed on someone else 'less worthy.'
I hope you said something to her.
Alicia
Dear Dave:
I am stunned too. The first thing that comes to my mind is I love your life too! Mine is richer for having you in it.
I am trying to believe that this woman was just in shock but I am not quite making it.
This is why euthanasia laws are such a dreadful idea. I saw a poster somewhere that said, I believe in the right to die - you go first.
Glad you're on the planet Dave. Hope you stick around for a while.
Colleen
Turn that around. Life is not fair. Indeed. You got a dose of unfair when you were dealt genes that predisposed you to gain weight. You got a second serving of unfair when you became disabled. And here she is serving you a dessert of unfair with her ableist attitude... Oh, getting cancer is definitely unfair. So she is getting her fair share of unfair....
Yeah, I know you wouldn't really say that.
She said that out loud?????????????
Also, yes. Fortune's a moral agent, people suppose. The fortunate deserve more fortune, the unfortunate less.
Yours, another expendable
(a non-working, minimally contributing person, who has some social connections, who doesn't live with love at home, who sometimes finds joy in his life, who strives to make the world a better place)
I'm so sorry that you and my daughter and every disabled person has to live with this daily onslaught. It terrifies me. I plan that one day nobody will think that one life is worth more than another.
Bite two of the cherry. I'm sorry you heard that from a peer, or anyone.
I'm bothered, too. That old instinct, you tell me I don't qualify, I prove I do.
Proving it only ever moves disqualifaction to other people. All the fat wheelies minus the fortune of employment and love, the never-worked, the grouches who never have known joy, and need the chance all the more, the depressed who've forgotten it, people who can't say they value their own lives even though others don't.
You didn't mean that. She did. What you didn't mean stings anyway.
Sorry, Dave.
Until I read your reaction, I interpreted her comment completely differently. I thought she was saying it wasn't fair that you, the good person you are, had to deal with the challenges of weight and wheelchair. Another example of things not being "fair". Do you think she could have meant it that way?
Dave, I posted at Bad Cripple about your post today. Wonderful and thought provoking. You made me think back in time when I learned life was not fair. Hard to imagine an adult stating this in the way you describe. Hard here means the ignorance and bigotry so obviously evident.
I've just linked to it on the blog but I'm going to give you the link to William's Bad Cripple post: http://badcripple.blogspot.ca/2014/05/life-is-not-fair-moving-past-trite-old.html
Ugh, sorry. What a horrible conversation - and all the worse to have come from a friend.
I would like to think society is generally lurching in the right direction. Maybe with some bumps & backwards steps along the way but generally forward & up. I think about the institutionalization, infanticide, & isolation people w/disabilities faced 50 or 100 years ago and compare it to now with the ADA and EHA/IDEA on the books (sorry, I only know the US laws) and my daughter's teachers' assumptions that she WILL be included. Is it perfect? Good God, no. I regularly dream about moving to a deserted island, but I was never told, as Baby Doe's parents were, that my child wasn't worth the cost of surgery.
But then again maybe life has always been cheap and now the targets are just more focused & visible. *sigh*
Oh Dave. I just wanted to let you know in my Community Services Course recently we did that exercise and only 50% of the class threw the disabled boy overboard. I didn't. I'm not disabled, but I do carry some weight. I'm not rich and have had some tough times and that is even seen as a reason to not allow a person an opportunity in this world. People seem to think if you have not reached a certain age or time of your life and not achieved the things they see as success, you should be written off. I believe it is those who live with love in their lives that deserve the opportunities, sadly, maybe for those who don't have love in their hears, it makes way for misfortune? I hope you continue to find Joy and Peace and don't let the disappointment of other's judgement find its way into your heart. Sandra xo
What we believe subconsciously can come out under pressure, I think. What came out may have surprised her too, if the underlying belief or message within her words was challenged. I bet she didn't connect the dots as you did, but she deserves to know what she really said.
Dear 'Bite Two of the Cherry' ... maybe I wasn't clear enough when I wrote the passage you refered to: f my value as a working, contributing person, who has social connections, who lives with love at home, who finds joy in his life, who strives to make the world a better place - is trumped so easily by the thin abled bodied, all is lost.
What I meant was what you have said in your comment. If all those things about me that other people value or others say are valuable ... are still trumped by ableness ... then all hope is lost. We are destined for the dust heap simply because of one fact alone, and we shouldn't be tricked into thinking otherwise.
Thanks, Dave. My knee jerked a bit. I knew what I read wasn't a thing you could mean.
You're right - if the glorious sum of human value is negated by one thing, then we are lost.
We are and I'm sorry you had to feel the shock of it.
Bite two. ;)
Dave,
1. I love that you are on this planet at the same time I happen to be here!
2. People who have painful, life threathening diseases are not always fair. (Fear of death, of loosing what you have; your loved ones, your family, fear of the unknown in death does thatbto you.)
3. You only fear death if you feel like loosing too much, or not worth being in another ubknown place.
Sometimes these ideas are hard, but it is harder to ignore them. I am glad, even though you were hurt, that you brought those experiences up again, to contemplate about.
Julia
Í'm going to be unpopular but I am going to try to be kind in my dissenting opinion. For the record, I am both fat and disabled. Just to be more unpopular, I'm a smoker, too (and that more than anything makes me want to stay a "cowardly" anonymous person. I have never commented here before though I have read for a long time and value what you have taught me so very much).
People with cancer are going through trauma. It's normal and understandable to question "why me?". It doesn't mean in the slightest that they think you deserve to die. Your friend misspoke, did not consider her words carefully before speaking, but that doesn't mean she thinks you have no right to live.
Offer friendship and compassion anyway. Compassion is never, ever misplaced, and never wrong, even when people are not compassionate towards you. Sometimes it's not about you, and the Christian thing to do is see that and continue to love.
Dave! I am fierce and outraged. And so glad you are here. That's all I can say. Speechless for the most part. No explanations, no rationalizations, no trying to "make this better for you". Just outrage and ferocity (well, OK, that wasn't totally speechless).
Love you.
Unpopular Anonymous, You are way to kind. Psychological angst does not give a person permission to spew degrading and hurtful observations. Why me is an utter waste of time. Never understood this. I would suggest Dave attempt to educate if he desires. But compassion? Sorry, but no.
Other anon.: why not both? Recognise the painful truth in what's said, also recognise that saying it was born of pain, and offer kindness. That is, if it remains emotionally safe to do so.
I expect that's what Dave did.
Bite two.
"There is no wrong way to have a body." -Glenn Marla
Oh Dave. A punch in the head would have quicker and violence more obvious. I'm so sorry.
Hi Dave,
I had a huge life change and have not been able to keep up with your blog for almost a year. A few thoughts. 1. I consider you the kindest, clearest teacher I have ever had the privilege to learn with. 2. Is it possible your friend was not wishing her fate on you, but trying to connect with you? Perhaps saying (in a tactless way) she sees the way the way you live as "not fair". Maybe she feels you should be slim and walking and that would be "fair"? The same way her cancer remaining in remission would have seemed "fair". If you need a reminder, I appreciate you.
Be well.
Donna,formerly of Boston now in Colorado!
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