This Does Not Define Us

Given the choice between the experience of pain and nothing, I would choose pain.

-William Faulkner

-It’s perfectly fine if you don’t believe…because no matter what you believe, fukú believes in you.”

The Brief Wondrous Life of Oscar Wao 

“Take a guess on how high your number was,” he asked me seeming almost excited.

“I don’t know.  What should they be?” I had asked.

“80,” he responded.

“I don’t know,” I said and threw out a random number.  I do remember it was wrong.

“Try 836.”

“How bad is that?”

“Well we’re going to recommend you stay at the hospital until those numbers drop.”

“Well…I can tell you that’s not going to happen,” I told him.

That was how I found out I had Type I diabetes.  The, you are going to have to take shots in your side and leg the rest of your life conversation.  The, you may lose your kidney, feet, eyesight, life conversation.  The, but there is still hope, real progress is being made in this field, and some day there may even be a cure conversation.  I remember the doctor telling me, “You know you’re handling this really well.  I’ve never seen anyone handle this as calmly as you are.”  How was I supposed to be handling this?  It wasn’t a death sentence.  I didn’t have HIV or god forbid the Big C with a 6-month diagnosis.  This wasn’t rare.  Was I supposed to be on my knees?  Would tears have been appropriate.  I do know that punching that stupid doctor in his face for making me guess numbers, before he dropped a huge pile of firecrackers in my lap, would not have been appropriate.  I won’t lie, occasionally when I think about that moment, I picture myself breaking his nose.  Then saying, “Here’s a number doc.  Guess how many punches it takes me to break your nose?”  Then I throw my jean jacket over my shoulder, hooking it with one finger and turn to my Dad.  “Let’s get out of here Pops.”

I’d wish this was the moment where I tell you, after staring down my diagnosis with strength, I went on to become vigilant in diabetes education and a champion for awareness.  I would let the actor Wilford Brimley know it was pronounced dīəˈbēdēz, not “diabeetUS.”  That I faced it head on and adapted in a healthy manner, to a disease, that even during diagnosis I understood was not a death sentence.  I did none of these things.  I was 20 at the time and had just returned home from a 3-month holiday around Europe, with other big plans on the horizon.  I did NOT have time for this shit.  I ignored it, well as much as I could, without feeling physically ill, because like any chronic disease it wasn’t going away.  I didn’t talk about it much, so little in fact that by the time I was 27, among the dozens of people I associated with on a weekly basis, only a handful even knew I had the disease.  It was something that would become major fuel in my depression and alcohol consumption.  Eventually I would realize that how I dealt with the disease, was a bigger hindrance in my life, than the disease itself.

Recently I have made strides in my outlook, and though things haven’t really changed, they seem to be on the up and up.  This hasn’t happened overnight.  I was not struck by lightning, I didn’t have a divine experience, I had to struggle and fight and be resolute.  I had to tell myself over and over that my struggles were not going to define me any longer.  My disease would not define me.  I would define it.  Even though I felt broken, I had to redefine what living with a disease meant.  I was not broken, but the fear that I was, felt tangible.  That fear was something that I could reach out and touch, it was palpable, and to overcome this I had to admit first, that my fear was valid.  That it was real, even if what I feared was not.  Slowly, I have been able to face this fear, and to accept myself as whole and strong.  I would urge anyone who feels broken to rethink what that means.  Being broken implies you need to be fixed, you do not.  There is more than one way to see the world.  Your weakness can also be your source of strength.  Weakness, this does not define us.  We don’t have stories of those who lived an easy, struggle-free-life.  We have stories for those who have stood before pain, who have given the world the gift of their struggle, and who have connected us through the hope of overcoming that which stands in our way.

Recently I listened to an episode, on the radio program On Being, by Kristen Tippet called, L’Arche: A Community of Brokennessand Beauty.  Which I urge you to listen to.  L’Arche was founded forty years ago in France, by the philosopher Jean Vanier, and is now an international movement.  These communities are people of faith living, and worshiping, alongside developmentally handicapped adults.  Today there are over 120 L’Arche communities, in 18 countries, that will confront your preconceived assumptions about service, the worth of individuals, and diversity.  The following excerpt, written by the celebrated author Henri Nouwen, during his decade long stay at the L’Arche community in Toronto, discusses one of its residents Adam.  The story of L’Arche and Adam has given me a new outlook about brokenness, on being whole, on my own assumptions of worth.  I have much to learn from Adam’s story.

 “Recently, I moved from Harvard to a place near Toronto called Daybreak. That is, from an institution for the best and brightest to a community where mentally handicapped people and their assistants try to live together in the spirit of the Beatitudes. In my house, 10 of us form a family. Gradually, I’m forgetting who is handicapped and who is not. We are simply John, Bill, Trevor, Raymond, Rose, Steve, Jane, Naomi, Henri, and Adam.

“I want to tell you Adam’s story. After a month of working with Adam, something started to happen to me that had never happened before. This severely handicapped young man, whom outsiders sometimes describe with very hurtful words, started to become my dearest companion. As I carried him into his bath and made waves to let the water run fast around him and told him all sorts of stories, I knew that two friends were communicating far beyond the realm of thought.

“Before this, I had come to believe that what makes us human is our mind. But Adam keeps showing me that what makes us human is our heart, the center of our being where God has hidden trust, hope, and love. Whoever sees in Adam merely a burden to society misses the sacred mystery that Adam is fully capable of receiving and giving love. He is fully human—not half human, not nearly human, but fully, completely human because he is all heart. The longer I stay with Adam, the more clearly I see him as a gentle teacher, teaching me what no book or professor ever could.

“Once, when Adam’s parents came for a visit I asked, ‘Tell me, during all the years you had Adam in your house, what did he give you?’ His father smiled and said without hesitation, ‘He brought us peace.’ I know he is right. After months of being with Adam, I am discovering within myself an inner quiet that I did not know before. Adam is one of the most broken persons among us, but without doubt our strongest bond. Because of Adam there is always someone home. Because of Adam there is a quiet rhythm in the house. Because of Adam there are moments of silence. Because of Adam there are always words of affection and tenderness. Because of Adam there is patience and endurance. Because of Adam there are smiles and tears visible to all. Because of Adam there is always time and space for forgiveness and healing. Yes, because of Adam there is peace among us.”

4 thoughts on “This Does Not Define Us

  1. It’s not that bad that you lose kidneys and liver and eyesight or get stroke immediately. One of my doctors used to start every appointment with: you know that you are losing kidneys, liver and eyesight, etc. I just stopped seeing him. Thankfully, I am a medical writer who has done research and has practical experience that exceeds 3 decades.
    There is a stereotype of putting our suffering at the top of list. It is simply more complex life with a lot of finger sticking and one is not allowed to always do whatever they want because the blood glucose level will dictate and demand what exactly one has to do. The worst is when the blood glucose drops like a stone in the middle of something important.
    Well, there are lots of diseases when somebody does not know whether they will or will not wake up in the morning Type I diabetes in one of them.
    Depression certainly happens, especially when there are other issues. I am writing about this on my blog. Sometimes.
    Type I diabetes is about managing the condition. I’d say alcohol is an absolute no-no in case of any diabetes because it either raises BG abnormally (sweet sugary drinks) or decreases it dramatically (strong vodka-type drinks). So, one never knows what to expect. Eating out is bad because one never knows either what is going to happen. Restaurant menus are not honest quite frequently. It is a restricted life, however, when we think about absolute freedom, we must admit that it is the rarest thing in the universe. One or another way: we are all tied up in duties, obligations and mandatory actions.

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    1. I appreciate your insights. Finding a good doctor is key to longevity both physically, but mentally also. It’s important to find one who won’t let you off the hook, but also one that can stay optimistic. I find that younger physicians can tend to be more optimistic I think largely do to the fact that if you are 60 and still practicing you have seen the devastation that this disease can have. I agree that it is “simply a more complex life” and where I used to have considerably more self pity I now try to view my struggle as a fortunate one. I say fortunate in the sense that I am fortunate to be alive now and not 30 years ago, to have support from my family and support that is only a click away because of the internet. Since making strides in my life to quite drinking, start exercising( running a half marathon this fall!)and being more honest and open with myself about my diabetes, I can truthfully say I feel the healthiest I have in 10 years. Keep strong!!

      -D

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  2. I am truly happy that you came to my blog for a visit and followed me. Because if this seemingly simple task was not preformed when it was I’d never find your blog and become so enlightened by your post here. It is true a disease does not nor will it ever define us. I’ve been through a lot in my life and more is on the path that I must one day follow along with it. The waves that are one disease or another will be ridden from atop and never will it become an undertow for which to drag me under. I’ve learned to become one with the trials that have happened to me instead of fighting against them, as they are indeed a part of me and my body and mind. Thank you for this post full of honesty and heart. Keep true to your heart as it will never let you down. Take care, from Laura

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