Saturday, March 22, 2014

Confessions from deep within my pancreas

Perhaps this is something you can understand.
Then again, maybe it isn't.
I don't talk about it much because it isn't often on my mind. It's a part of my life but it doesn't define me. But if you know me, I know you think about it. And if you're like me, everyone you know thinks about it too.

Like many people in this world, I have diabetes.

This is us. The People with Problems. The Diseased Without a Cure. The Young and the Sick. It is hard for me to convey what it's like to be young with a chronic disease without sounding like a pity brigade. My brother has Addison's Disease. My mom has hypothyroidism. My friend has heart defects.
We are all different. We all have our own difficulties. And sometimes it's all so terribly hard to understand.

Contrary to popular belief, my pancreas does work. It doesn't produce T-cells because my body began attacking them for unknown reasons when I was young. Over time it started to slow down production. And then, eventually, it just stopped.
And my life changed.
I thought my life was shortened-- maybe even close to ending. Even if it wasn't it had certainly taken a chaotic turn: meal plans and carbohydrate counting and insulin shots-- oh my! For my eleven year old brain it was a lot to comprehend-- it still is, in fact. I'll be the first to admit that I don't understand everything about my condition and that being young, positive and adaptable has often blinded me to the ugliest parts of my disease. But as I've grown older I've begun to realize how diabetes has blessed my life in that odd, roundabout way that trials often do. Everybody has something with which they must struggle. Anxiety, weight struggles, a propensity to get a lot of cavities, dry skin-- it's the nature of life, of aging, and the world we live in. I think the most important thing I have learned from my disease was at the tender age of eleven. This atrophy and inevitable degeneration of our bodies is cruel, but it is also wonderfully, amazingly endurable.

Because of diabetes, I may see things -especially food- differently than you. I often look at what I eat as a series of potential highs or lows. As gut wrenching thirst or monstrous hunger. The feeling of being sick from water but wanting more at the same time. Unless you have experienced severe hypoglycemia-- I don't mean fasting hunger when you feel weak and angry but the kind that could potentially kill you-- I don't think you can understand how scary it is to be low or how amazing food tastes to a hypoglycemic diabetic. And I can't describe adequately the feeling of waking up in the night covered in sweat, and the uncontrollable shaking of my hands when the lights I turn on are blurry and the walls move and I forget what it is I'm doing and what I need or where I am. It's like the synapses in my brain are firing and firing away but there is no connection on the other end. I am no longer me. Sometimes I may act different-- may say things that don't make sense, may cry and seem confused. But mostly I become a non-person. Not able to feel, not able to think or rationalize. Not being me is a terrifying thought. And to think that one could lose oneself completely just from skipping some meals or self administering too much insulin are fears that have kept my mother awake for many sleepless nights.

After I was diagnosed, my parents became obsessed with food. My mom worried. She fretted constantly, pacing the house late at night and shaking me awake early in the morning for fear I would seize up and die. Because of her anxiety, my mom and I developed a very tense relationship throughout my teenage years. I wanted independence; she wanted safety. I wanted to eat what I wanted, she wanted me to be careful. I didn't want to check my blood sugar and she, obviously, did not concede with my wishes. It was hard. It was stressful. It made us both sad and angry. I see now how she must have suffered-- must still suffer from worry. I wasn't sensitive to it at the time but having a child of my own has changed everything. I feel her fear echoed in my own mind when I look at Flynn and know that because of me he has an elevated risk of contracting an autoimmune deficiency. It is minuscule, but it is there. I do not want to be responsible for my child's health defects. I never want to be the reason he has to poke his fingers or take pills or give himself shots. If anything ever happened to him, if he is ever diagnosed with diabetes, I wonder if the guilt of it would crush me.
My mother felt this once and I feel her pain now, doubly so since I know that diabetes is a never ending battle. Every growth spurt, surge of hormones, meal and snack tips the delicate scale of blood sugar and can send you sprawling either way-- high or low-- into paralyzing sickness.
Being a teenager is hard.
Being a teenager with a chronic illness is harder.

And these fears started long before Flynn was born. Long before I was married I worried about having children for this very reason. And then when I found out I was pregnant I was in agony over my unborn child. Anyone who has a child could understand this anxiety. About his heart. About his lungs, his legs and his veins. But they may not feel the peril, the paralyzing fear, knowing that every organ in his little body could be negatively affected by anything I ingested.
And then, the worst part. Despite how hard I tried to control my blood-sugar during pregnancy, when I tried unsuccessfully for two hours to push out Flynn my diabetes conquered me. My baby was 10 pounds and had to be delivered by c-section because he was too chubby for any tools the doctor had to fit through my pelvis. He arrived with bruises all over his little body and a black eye because even the most forceful methods of delivery were not enough to birth him. And I was weak, I stopped caring. I gave up because of my diabetes. It was heartbreaking to think that I did that. I did that to him. My son was impossibly chubby because of me.  Because of my diabetes. Even though I don't think about it often, I can't deny it is a part of me-- my disease. And Flynn. He has my genes. He has my eyes. Will he inherit my diabetes? My teenage attitude? These fill me with aching fear when I allow them in my mind.

But more often than not, I look at my son and remember that Jason and I have given him more than a slightly elevated chance of becoming diabetic.
Because of me, my son has a healthy heart.
And legs that walk and run and dance.
And perfect little organs.
And a head full of hair.
Because I tried so hard to take care of myself so I can take care of him, he is alive. He is well. And he has me, his mother who is also alive. And because of my diabetes I always want to feed him healthy food and take him to his doctor's appointments and poke his finger every once in awhile, just to be safe.
Just to be quite sure. Because everybody has something.
And I may not know everything that is to come but I do know this: because of my diabetes, for my son, I'm ready.


Pepper said...

loved this Jossi! yes it was really scary when you first got diagnosed-you've come a long way since then. Thank goodness for the pump eh? I love you and am so glad that Flynn and you turned out fine from your horrible birth experience. He is just perfect:)

Original Kos said...

Jossi--I am so, so glad you are so healthy. You take great care of yourself. I can't even imagine what it would be like to live with diabetes every day. You're a real trooper. Flynn is so lucky to have you.

It seems like your doctor and nurses should have done a MUCH better job making sure you didn't have a low blood sugar during birth. That totally wasn't your fault. You are so amazing. The best mom. I always think of how natural being a mom is for you. It's amazing to watch.