Thursday, February 17, 2011

The Biology of Blame

One of the biggest struggle in ongoing illness is the constant apologizing that you're forced into. I missed 'work' this morning because I'm feeling so exhausted and generally 'ill' (that runny nose, cloudy head and sore throat feeling most people would call a cold) that permeates every cell of my body. I could sleep for a thousand years, if only I could fall asleep. The body is tired, ill and exhausted while the brain is bouncing around, jutting off corners and keeping me awake.

Illness removes the cycle of normality from your life. And unless you hermit yourself away in a small oceanside cottage, you have to cycle your normality in with the rest of the world. And it's difficult. Because the rest of the world is so caught up in maintaining that cycle themselves they can't make many entrances and exits for your wonky illness cycle of normality.

I spend the majority of my day apologizing.

I'm sorry, I couldn't hear that; I'm losing my hearing. Could you repeat that?

I'm sorry I missed that deadline. I was completely overwhelmed with life and pain killers.

I'm sorry I'm late. I couldn't walk too fast this morning and the hills were a problem.

But there are parts of life that you can't continue to apologize for because it becomes too painful. Denial also prohibits some of the apologizing because it is so painful to admit.

I'm sorry you were late for work this morning because of my arthritis. I'm sorry she was late, that hill is killing me.

I'm sorry I couldn't come in today. My child is more important than your organisation and I need to conserve energy.

I'm sorry we don't have much money, even though you work your butt off for our family. My health insurance is so important and so very, very expensive.

I'm sorry we can't buy that baby. Mama needs the money to pay for pain killers that aren't subisidized.

I'm sorry we can't go play this afternoon. Mama hurts and the pain is so overwhelming I am wanting to run away.

No, it's not you sweetie. Mama's just tired and grumpy today. I'm sorry for hurting your feelings.

I'm sorry I'm not earning an income to pay for all my costs -- it's impossible to find someone to take me on paid staff due to my illness and shortcomings.

It takes a lot out of a patient to even admit these feelings, let alone name them, speak them, address them. But we do. And it's hard and painful and emotionally devestating.

People react very differently to these apologies. Some people brush them off -- oh you don't need to do that! they grump.

But I DO need to make this apology. This is my reality. This is the consequence of my illness. And I WANT to and NEED to make you and I aware of this. This is my cycle of normality trying to engage in your cycle of normality. Let me do this, please!

Other people stop you from even speaking, cutting you off with a wave of the hand or other gesture.

How dare you? I'm a human being and just because you don't understand and respect what I'm saying doesn't mean you get to stop me from speaking. I'm sorry that you're so single minded you don't respect my feelings, or are feeling guilty that you're well and I am not. I'm sorry my illness is making you uncomfortable, but I am also living on this planet and have a right to do so.

And occasionally, you'll get the person who wants to remind you of the blame of illness.

You know, they start. I know this woman who read this book about being positive and how positive thinking brought her money and good health.

Some call it The Secret, some have other names for it. It's this belief that by thinking positive, they will somehow exert control over their lives. And truly, it doesn't bother me. If you think money is coming to you, all the best.

You want to control all the red lights in town, have at it!

But it bothers me when you start exerting blame onto me for my illness.

If you were more positive, you would feel better. Your cells wouldn't be ill. Your DNA would change and you could get better.

Having a genetic disease, that last bit always gets under my skin. My DNA, by default, is different from yours. But my DNA, as proved by genetic testing, has a malfunction that results in illness.

So, by using the positive thinking hypothesis, I could have somehow altered my DNA to become normal by being happy? I somehow altered my DNA to the malfunction state because I chose to? Because I did something wrong?

My daughter, a young child trying to live her life well with illness, is somehow to blame for malfunctioning DNA? Did I curse her with this during pregnancy because I was ill and struggling? I fail to understand the principle.

I get that positive people have an easier time with illness because they can push their way through. But they're still pushing. And they're still getting ill. Some of the most prominent faces of illness are these very people. They ARE positive, happy people who ARE ill.

And some of them die from the illness.

Happy, positive people make for interesting articles. That's why these people are fronting organisations. Because they're nice to reporters. Reporters would have a field day with Oscar the Grouch turning up and berating the reporter.

But it doesn't mean that Oscar the Grouch became ill BECAUSE he is a trash-can living grump. He got ill because he got ill. Illness, like happiness, happens.

For every cancer sufferer who faces ideas of pessimism and a life of hardship, there is a cancer sufferer who spent a life full of optimism and peace. Cancer happens. Regardless of whether you spent your teens and twenties and thirties seeing the glass as half-full or half-empty.

To suggest otherwise is cruel.

Am I sick because I came from a family of dysfunction and didn't have the social skills to enter society as an optimist? Am I sick because I spent a period of time facing depression as a result of sexual abuse? Am I sick because I didn't embrace my illness with positivity and optimism?

No. I'm sick because I'm sick. I was sick from the moment I was conceived and I will be sick until the day I day. It's in my DNA.

Certainly, the way in which one handles illness certainly begets the quality of life one will have while ill. And that's something I have spent the past 12 months learning, getting counseling for and bearing change into our family. It is the message I am teaching my ill daughter.

But I will not stand for someone telling her that she is ill because she has somehow done something to deserve it.

I did nothing to deserve this illness. The illness is cruel enough; living life with this illness is hard enough without some jackass telling me that if ONLY I had... And that my life would become easier if ONLY I would...

To suggest that I can re-alter my DNA and that my illness will go away if I simply retrain my thoughts is informercial fodder.

One such book proclaims: "It shows that genes and DNA do not control our biology; that instead DNA is controlled by signals from outside the cell, including the energetic messages emanating from our positive and negative thoughts...a major breakthrough showing that our bodies can be changed as we retrain our thinking."

I agree to an extent that we do control our destiny with what we do and how we think. When I lived with uncontrolled pain, I hated the world. It was a dark grey blob of existence that no one needed. Death was welcomed.

But once I re-emerged into the world, I saw how amazing and fun and truly wonderful life could be. So yes, to an extent, my positive thinking changed my world. But those positive thoughts only came once my biology was controlled.

I still struggle with the pain. When the pain is so cruel I want to rip joints from my flesh with a kitchen knife, I hate everything. I just want the pain to stop. It's hard, in that moment, to see the beauty in nature, in people, in just breathing.

But days spent with friends and being and feeling happy reminds me that those bleak moments are fewer and fewer.

When an illness is uncontrolled and the patient is living in a hell, being told that they would be better if they just thought positive is cruel. That patient IS thinking positive. They are repeating that the pain is going to go away and it's not going to come back. They are repeating, mantra style, that the pain will be gone in 5 minutes. Those 5 minutes may pass, but they keep bleating on that the pain WILL stop and they WILL be ok.

Fear, desperate fear of the pain not stopping is keeping them pushing forward in their lives; but they are positive in those moments of desperation, willing the pain away. Some depression patients cite this as to how they chose not to attempt suicide. They kept repeating that the feelings would pass. That is optimism.

That IS positive thinking.

No, it's not the 'My body is beautiful and whole' business some people want you to keep practicing, but it IS positive. And in that moment of desperation, of struggling and drowning in pain, it's all you can muster. But it IS positive. And you are NOT doing anything but surviving and how dare anyone accuse you of creating or maintaining your illness by virtue of thought.

There is a place in illness and recovery for positive thinking, for positive euphemisms, for sunshine and rainbows and unicorns and fluffy bunnies. But, as someone who is ill, I am spending my life desperately trying to make my norm fit yours, and as a result, constantly apologizing for my shortfalls.

And for you to suggest that I could, simply and without any drugs, money spent or time spent with my doctor, repel my illness simply by reconstructing my thoughts, is just plain ignorant and heartless.

I don't suggest to you, in polite company or not, that you would fit your trousers better if you didn't drink all that beer, so why can you suggest that I am to blame for my illness simply because I don't spend my time running through fields of daisies in the company of bunnies, unicorns and anime characters?

What is it about uncontrolled and chronic illness that allows people to insert blame into our lives? People long gave up blaming birth defects on the actions of pregnant mothers, so why is it still acceptable to assert blame on survivors of illness?

And how useful is it to do so?

I feel enough blame and sadness for the struggles of my family. I don't need more.

As anyone with ongoing illness, we are probably one of the most blindly optimistic people you will meet. Perhaps not publically, perhaps not triumphantly, but we are. How many of you have tried products off the shelf with hope it will help? How many of you have met with new doctors, often at a high cost to yourself, with hope he will change your life? How many of you have read books, repeated mantras, burnt candles, rubbed oils and prayed and cried to G-d for help?

I'd say 9 out 10 have gambled with herbs, diet alterations, crystals, oils, people, in a blind hope and faith that it would help.

How is that not positive thinking? How is HOPE not seen as the most active and attractive form of positivity? Isn't hope the eternal flame that keeps humans plodding along?

How can you, blind to my life and all I've been through and keep subscribing to and trying, suggest that I am to blame for my illness?

Maybe it's because of facing the fear and the sorrow and the pain in my life that I have the capacity to feel hopeful. Maybe because I AM honest and feel sadness in my life that I CAN see the joy. Maybe trying to cover it all up with a bandaid of fake positivty might do more harm?

If you want to be supportive and helpful; if you want to love me and embrace my life, if you want to introduce positivity and mediation and other forms of your 'positive thinking' then allow me to explain whether there is time, energy and need for that in my life.

You might be surprised with how positive I already am.

You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. ~Eleanor Roosevelt


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