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

On Illness and Defeat

Study has always been a good outlet for me. I'd consider myself bright, not exactly smart per se, but bright, able to tackle concepts and write about them. I've done well academically, did well with my SATs and my ACT. I've breezed through university classes, often at the top of the class. And yet, as I approach my 30th birthday, with a number of years of higher education behind me, I still have yet to achieved a diploma or those fancy letters after my name.

It's been a combination of battling depression and becoming ill as well as moving away from an area in which I could study; I also became a mother and wanted to focus on that.

It was always my goal to go back and finish my degree when my daughter started school. I've struggled with what it is I'm good at, what I want to spend my time doing. My interests have ranged from working with children to advocacy. I have wanted to, for years, to be a birth educator and a fertility consultant but the fear of failure holds me back. Also, that fear of other people and their opinions weighs heavily in my mind.

When Matt first dropped the separation bomb, I was overwhelmed with grief and fear and nausea. I threw myself, literally, into the gym and worked out my anger and my sadness and my fear. I found my arthritis improved dramatically and I felt so much clearer in my head. So what my GP had been saying about exercise and arthritis and exercise and depression was really true?! Why did it take this long to figure it out!?

I decided to get my affairs in order with Victoria University and begin studying towards finishing off my degree. They decided to accept a fair share of my previous courses and I was all set to start when they sent a curt 2 line email explaining they had closed off applications for all but graduating students and, on that day, 1499 others plus myself found ourselves floating with no university, no plans and no options.

Victoria refused to answer questions, my emails went unanswered, my phone calls unreturned. It came out that they had indeed left applications open, for international students, the real cash cow of NZ.

Massey University, also in town, was very gracious and decided to accept a late application. However, they said, they would only accept 4 of my numerous courses and I had to start over again. Angry and startled by such a stupid policy, I decided to start a new degree vs paying twice for the same BA in English and History. Bad move #1.

Bad move #2 was feeling pressured to study more than I could safely handle. I signed up for 3 classes, 1 100 level pre-req and 2 200 level pre-reqs. 2 exams and 1 research proposal.

And things started out well. I did quite well on my first assignments and then I started developing some bad stomach pain. Well, abdominal pain is quite common for TRAPS, it's often a sign a flare is coming. My fingers started to swell madly and I had to increase my steroid to 40mg to be able to uncurl my fingers and move my hands. The side effects of the steroid, going from 4mg to 40mg is intense.

The first side effect you notice is the a sort of madness, a delirium and a racing heart. It's not quite euphoria, because you don't feel super happy, but you feel super energized with reality shaded a bit grey. You actually can get quite a lot done in those first few days. But then the insomnia kicks in. The racing heart, the hair loss begins rapidly and the headaches kick in. You feel exhausted but wound tightly, like a spring. At any moment you could go from happy and calm to violently emotional.

I would cry watching Rachel Ray chop potatoes so perfectly. I would cry watching my daughter sound out words. And then I'd snap and yell at the cat for scratching. It is very, very unsettling.

As you can't be on the higher doses for long, you spend 10 days in this unsettled emotional rageway only to begin the weaning. Weaning, as the word sounds, is painful. Your body, as it has not produced it's own cortisol, begins to squeeze hard on the adrenal glands. They begin to ache, headaches and nausea are common. I tend to vomit during the drop from 15mg to 10mg. This is the stage where hair shedding intensifies. Losing clumps of hair is common, as is the loss of your eye lashes. The hair on your chin, however, grows quite quickly on steroids.



The headaches are some of the worst; they are crippling in intensity and very few pain killers actually respond to the headache because the body is sending signals that it is cortisol deficient and needs help. The insomnia continues and the body reacts to the withdraw. Diarrhea, vomiting and volatile emotions are common. I am more ok with the emotions at this stage as I can rationalize what is happening and verbalize a lot better.

Finally! Victory, I'm down to 5mg again!

It was during this time we all came down with a horrible winter cold and because the body requires more cortisol when ill, my body became adrenal deficient. I had begun noticing a hard, stabbing pain in the area of my right adrenal gland and put it down to being adrenal deficient. A trip to the A&E brought the suggestion I had a kidney infection and I was restricted in food and fluid until my body regained adrenal stasis (and the steroid went back up to 20mg). I began a 10 day course of antibiotics for the kidney. As I'm allergic to most antibiotics for urinary problems, I got my old friend Nitrofurintoin. It has the tendency to make your pee orange. Which is completely awesome at 7am when you are completely unsuspecting of such things. Whoa! Orange pee!!

However, the abdominal pain became worse and I began throwing up. Was it the weaning off the 20mg or something more? Another trip to the A&E resulted in the diagnosis of Cholelithiasis, which I believe is the presence of gallstones in the biliary ducts. The doctor, as he prescribed major narcotic pain killers, said: It's a bit like giving birth, gallstones. Your gallbladder must dilate to push the stones out. Over and over!

I rang to get an emergency appointment with a private gastroenterologist and was told I couldn't do so until the 5th of November. Then it was at least 7 weeks away. At this stage it's not too far away. I've had repeated bouts of the gallbladder pain and attacks. I've given up food but not caffeine. I've drunk olive oil in 1/4 cup amounts mixed with a drizzle of lemon juice. I will never do that again.

I've drunk numerous cups of liver tea and eaten the dried herbs. Nothing has helped. At this point, as the doctor said, I either have it out on my terms via elective surgery with the gastro or it comes out once it reaches an emergent stage.

Emergent was described as having labs indicating infection, inflammation and fever. I've yet to sustain all 3 long enough for labs to be drawn and interpreted, which leaves only the elective option.

The pain is intense and cruel at times. The worst pain is the upper back pain from the swollen gallbladder pushing on the liver. Livers weren't meant to be bounced around, let me tell you. The pain is often intense and followed by vomiting and diarrhea. It is hard to sleep with such pain. The narcotics make you jittery and blurry; there are hot flashes and night sweats. It is impossible to think after a night of night sweats and insomnia. The narcotics stop any chance of a fever being recorded, thus creating the roadblock of not getting all three emergent signs.

Really Bad Pain
The most typical first sign of gallstones is pain — sometimes excruciating pain — in the upper abdomen or right side. This is sometimes accompanied by fever, vomiting or sweating. The most common treatment is surgical removal of the gallbladder, although there are other treatments, depending on the type of gallstone, the severity of a person's attacks and the presence of complications such as infection.

Most treatments are much more successful if they are given early on. Anyone who thinks they might have gallstones should see a doctor as soon as possible.

Typical symptoms

* steady pain in the upper abdomen that worsens rapidly and lasts as long as several hours
* pain in the back between the shoulder blades
* pain under the right shoulder
* nausea or vomiting
* abdominal bloating
* recurring intolerance of fatty foods
* colic
* belching
* gas
* indigestion
* sweating
* chills
* low-grade fever
* yellowish color of the skin or whites of the eyes
* clay-colored stools *

Having ongoing biliary colic and passing gallstones isn't exactly the environment conducive for study, creation and understanding of abstract concepts. It was during this time my studies started to eclipse my ability to do the work.

And now I'm faced with withdrawing from the classes and lodging a plea with my loan. It is, without a doubt, a defeat. It is, without a doubt, one more very visible sign of the illness winning.

Because TRAPS is a disease of inflammation no one can decide whether the gallbladder is, in itself, a diseased organ or it is the disease of inflammation that is ravaging the organ. All agree that it will be better once the organ is removed, however, the question then becomes -- what organ next? You can't simply cut and remove all organs once they become ravaged by disease.

That's a scary reality. It's a horrible reality. How many people have to confront those thoughts, ever, in their lifetime? Let alone as a young mother, a young woman, and a person with dreams and goals and hopes.

I'm not prepared to let the illness win, no matter how small the defeat. Illness is regarded as failure. There is often a lot of blame attached to illness. Because, if you had super powers, you'd just fix yourself up and get on with it. You wouldn't need help. G-d forbid needing help! We're trained from the age of 2 to be resilient, independent factory workers who need little instruction on pushing buttons over and over. We're not grown with empathy and compassion and a desire to help others. So illness is seen as a remarkable failure.

Remarkable because you just keep failing, and oh, isn't that sad? Pity, tsk, tsk.

Here I am having to lodge a plea and beg for understanding when it should be granted without thought. As a family we have struggled through hardship -- financial, emotional, work compassion wise. Every day is a justification that the illness is real. Someone once commented that my struggles were not due to illness, but because I hadn't adapted to life as a mother.

That one comment has haunted me. Illness, the failure to be normal, is seen not as a justifiable situation, but a self-made creation that must be granted permission by anyone and everyone at any moment's notice. I am required to give notice of my illness to anyone who asks, and as it is a rare and misunderstood illness, I must provide adequate research to anyone who questions the validity of what I am saying.

The illness, the defeat, the failure is constant. And yet again, I have failed. Failed to achieve normality, failed to achieve despite everything else going on in my life. I'm seen as a risk, a liability. A bludger on society.

I understand the situation is out of my control, that the disease is unpredictable and that I have tried very hard. Given time and adequate support, I promise my research proposal would be amazing. Do others understand these same things? Will a group of people reading my plea understand my good intentions? My hard work? My desire to push past the limitations of the illness?

Sandeep Joseph, Managing Director, XM Malaysia, writes: "...there is a lot we can learn from failure, and it is worth the effort. Whether we learn lessons about bouncing back, or we learn lessons about perception, and the biases we bring to our decision-making processes...And it set me wondering about how we perceive failure. Do we embrace it, understand and learn from it, or do we seek to brush it under the carpet, deny reality and pretend we never got it wrong in the first place? Do we seek excuses, alibis and escape routes?" *

No excuses here. I simply failed to ever catch up. I haven't felt well enough to do work and it was only this week when I started feeling a bit better that I got into contact with my disability coordinator and asked her opinion. We should have done this earlier she said. I know, I said. I just didn't feel up to it. And it simply didn't matter enough to push through the pain. And I think that speaks volumes. If it was something I truly had a passion for, I probably would have pushed through it, much like I did last night working on Lady Gaga's pants for Halloween.

It was a bad move, a bad choice, a mistake. I know I want to work as a birth educator and a fertility consultant. I know that, you now know that. So why am I so hung up on pleasing people and trying to amass a fancy degree to show I'm worth something?

Put simply, I don't know.

The powers that be have accepted my desire to withdraw from study and I get my plea papers next week to fill in. I feel sad and that overwhelming fear of the future is bearing down on me. The gallbladder pain is gnawing and clawing at me and I'm due for a dose of Meloxicam.

It's hard to feel solvent when life is so unpredictable and so out of your own grasp and control.