Friday, February 18, 2011

A little more Badger

I'm always hesitant when the phone rings. I don't know if it's a general phone avoidance or phone phobia, but I get this internal cringe when the phone rings. It's not like I've had many horrible phone experiences in my life, but I am, decidedly, anti-phone these days.

It takes a lot of effort to remove oneself from a comfy couch and walk to the phone. You'd think, being in the company of one who loves emerging technology, we'd have a portable phone but pshh. Seriously, who uses those things? We have 1 phone jack and an antiquated non-cordless phone.

When the phone rings, it takes a lot to answer it. It's either someone confirming an appointment or someone changing an appointment or someone trying to change my power company. No one ever rings to offer me a million dollars or a chat. Not that I'd be keen on a chat. I'd have to sit on the stairs and that's really uncomfy.

And I'm exactly the same way with my mobile. It's more likely to run out of batteries than be used, though I am trying to get better at texting people. I just enjoy socialising when it's my own decision.

I spent some time this morning trying to pass on and receive messages with my gastro. He's been quite a find, after the first gastro was a complete waste, so I look forward to hearing from him. He is genuinely interested in the TRAPS disease and wants to know more. He also, genuinely, wants to help.

So when he mentioned that he'd try to see me ASAP when symptoms started forming a pattern, I leapt on that. Are you sure?? I asked, aghast that someone was actually taking me seriously. Really? And in my head I'm thinking, pinch me! Pinch me! I'm dreaming!

Last Friday morning, thursday night I guess, I noticed a pinching feeling in the area surrounding my right kidney. It was enough to wake me several times. Ow, I thought. That's not good. But I went on into 'work' and dutifully ignored it.

Saturday morning it was more than a pinch and more than an occasional Ow. It was more of a sustained owwwww but still only coming in periodic waves.

Today, now a week on, it's more of the 'why do I need a kidney and for the love of G-d would you stop' sensation. I rang my GP's office on Monday looking for an appointment. 'You need to ring a week in advance' the woman tells me curtly (as though I plan these things, as you would a teeth cleaning). He can see you 3:15 next Monday. Oh, I say. That's quite a ways away. Take it or leave it she tells me. Yikes! Drives a hard bargain, these headphone equipped women.

So, here we are. It's Friday. It hurts and I see the doctor on Monday. Options available to me are the 'after hours' or accident/emergency variety of doctor. The emergency room (seems a bit OTT, you know?) or wait.

So I rang the Gastro, thinking of his offer. I get put onto his PA, a wonderful and lovely and patient girl. Oh, she says, are you the TRAPS lady? I hate to call you that, she says.

Oh no, I butt in. I've been called worse. It is me and I've got these symptoms and he said he wanted to know when it was happening. Tell him that it's mild now but it's going to get worse and I thought he ought to know.

I like how you're so calm, she says. Like you know it's going to get worse and yet you're so calm.

Well, I think to myself. I've done the panic and cry thing in the past and all I did was upset everyone around me. Besides, it's not going to kill me...yet.

My counselor and I have agreed that I enjoy the art of grim and depressing humour. Not in the Hannibal Lecter sort of way, though I do enjoy a nice Chianti. I still have a couple bottles in the cellar and need to check their drink by dates. (What? Didn't you spend your 20s cellaring imported Italian wines? No?)

I don't know what it is about me, but I have a tendency to deflect situations into some macabre, satiric humour. I read once that comedians are funny because they're brutally honest about their pain and they're ok with it. I think of myself as an excellent comedian. It is how I deflect pain. It's how I degrade myself and it's how I am brutally honest with my own limitations.

And I adore making people laugh. Laughter is a nice way of someone saying they accept you. I don't think people expect it when they meet me. Sitting in a doctor's office and dealing with these concepts and walking away with him laughing is a highlight for me. I've had doctors comment that they adore working with me because we get to be so real and so informal. I also enjoy when they curse.

I once had a GP, who I was very fond of, bang his head on his desk when he realised he was completely overwhelmed with being able to help me and said: Frankly, I should just discharge you because you're too hard. But I like you too much.

And maybe that's the thing. I like that people like me, and I like to make things easier for them. Because life is hard. I know how hard it can be. So a light moment for them and for me is pure gold.

My counselor says it's a self-soothing mechanism that I've taught myself over time. That by somehow finding a spark of humour, I've accepted the bleak, decided I'm over the bleak, and can move on to positive things.

See, I AM positive. It's just my positivity isn't rainbows, bunnies and fluffy. It's decidedly dark, meaty and more Philly Cheesesteak than brown rice and miso.

So when the lovely PA responds that I'm calm despite what's going on, to me it's a non-issue. And I actually sort of thought, well, what would you prefer? Me sobbing on the phone and clutching the ground in agony? But then I thought, omg, maybe I am going to die and I should head her warning and, yeah, nah. Not going to happen.

It gives me mental clarity, the grim Jennifer. It lets me get the crap out of the way and get onto business. It also lightens the load. I don't want your sadness, I'm not pitying myself so let's get to the real business of making me better.

I'm finding it hard to curb the habit though. In front of my daughter, I don't want to joke about her health. I'll joke about her high energy, her inability to sleep before 10pm, but this disease, nope. Not funny. Not to me. I'm a real badger about it.

We're not going to dismiss it. I'm not going to allow you to lessen this illness. I'm not going to allow you to replace your discomfort with a blase attitude. And maybe it makes me appear boring and serious and a real stick in the mud.

I started seeing my first specialist, a gyn when I was 13 about the intense pelvic pain I was experiencing. My mother, who never experienced more than 'bad cramps', didn't get what was going on. It felt like a weedwhacker was tearing my uterus apart. I would bleed in excess and pass clots. I would vomit from the pain of the cramping. And yet, it was the 'take 2 tylenol and get over it' attitude I hated the most.

I almost feel sad to admit, but I was a geek. I adored school work and writing essays. Having to miss drama or video production was horror for me. I wanted to be at school for those bits (the other bits like math or science or pe I could happily miss) but I wanted to go to play practice. And yet, it was always, oh Jennifer is an attention seeker and keeping me home was regarded as this generous, excessive and euphoric reward I was being granted and not the kind and caring regard to my pain and my health. There was no humanity in my childhood.

Kids her age don't get pelvic pain. It's growing pains. She'll get over it. She likes the attention and even negative attention is attention.

I didn't get over it. Because there was and is nothing to 'get over'. It's a lifelong commitment, being ill. It will last longer than any friendship, and longer than my own lifetime.

So I saw my first gyn. I was given monthly prescriptions for Vicodin. And it did nothing for me. It was suggested I have a laparoscopy at the age of 14, but my mother said no. I think about the relief I found after my lap in 2003, at the age of 22, and think how much better the previous 8 years could have been.

It wasn't long-lasting, the relief, but it was relief nonetheless. I often question why those of us with adhesions don't get yearly laps, besides the cost and the recovery period.

I had a major kidney infection when I was 15. I had just finished driver's ed and literally, overnight, struck down. The symptoms had been ongoing, but due to the drama caused by me wanting to see a doctor, I ignored it. After 2 ERs, it was found that my right kidney had abscessed.

It took several hours of fluids and kind nurses taking my abuse as they forced the pus from the kidney. That event most likely has paved the way for the recurrent kidney inflammation now. I was in kidney failure.

And I don't want that for my child. Yes, I know how hard it is for you to look at your precious child and imagine the effects of illness. And to admit it to yourself, to other people. I know that people will accuse you of attention seeking, or being mad and off your rocker, but it is worth it to have someone else repeat your fears and worries.

When the paed told me that he suspected that there was arthritis in my daughter's knees, my heart stopped momentarily. I knew what was coming for her. A lifetime of hurt and pain and drugs and sadness. Of limitations and always, always pushing through, but my g-d my heart lifted and I thought, yes! Someone else gets it.

The unresolved pain of my own diagnosis still lingers in me. I think that anger is the force behind my momentum. It powers my satiric nature. It is the power that pushes me through pain, through illness. And I don't want that for her.

I want her force to be fuller. To be brighter. To be of love and confidence and the power of her.

I think, for the most part, the calmness comes because of that simply and easily discarded word: Diagnosis. I got mine. It's my golden ticket. It, all at once, makes me and destroys me. I am finally real. No one can brush me off now. And yet, what an absolutely shitty gift.

I want the same for her. I want her to achieve her golden ticket status early so that we can brush it off and move forward.

I also really want this liver/kidney pain to stop. And knowing that it won't, I open myself up a little more. A little more vulnerable. A little more grey and depressing.

A little more badger.

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

The Obligatory I'm Sorry Post

Dear Blog and Blog readers,

I'm sorry for my absence and lack of writing. I've got a thousand excuses but denial is probably the real reason for me not addressing my illness and writing. But I'll be back shortly.