A New Lease on Life


Illustration: Michael Hacker

I didn’t even know how much I needed it until it arrived. (Well, that’s not exactly true.) I was crossing my fingers and toes that I would get good news, but I was preparing myself for the worst just in case.

“Just in case” may feel like a denial of hope in a given situation. Save enough money to cover six months of expenses just in case you lose that job you love to hate so much. The security pee and no less than a quarter tank of gas in the car before the long drive. A stack of firewood, a 10 gallon container of water and plenty of matches just in case the power goes out–all of these scenarios are ways to prepare for something you don’t want to happen.

When you’re living with an autoimmune disease, your body seemingly does whatever it wants to do and you’re forced to live inside this out-of-control body. It’s easy to feel like a victim and to compensate for those feelings by trying to control the variables. I know where all the bathrooms are. I always sit in the aisle seat at the movies, shotgun if I’m not driving. I don’t eat anything with vinegar or anything spicy. I haven’t had a beer in over a decade. I take care of myself, but I also spend a lot of time living outside of myself. I’ve learned to do this as a coping mechanism in order to not feel the pain and anxiety of living inside my body.

Six months ago, my doctor found low-grade dysplasia in a few cell samples from my regularly scheduled colonoscopy. Dysplasia, for those of you who don’t know, means pre-cancerous cells. The diagnosis? Complete removal of the colon. She suggested I meet with a surgeon right away to discuss my options. I asked her if this seemed a little premature. Did she know if I would get cancer or when I might get cancer based on these results? She could not say with any certainty.

I decided to send the slides out for a second opinion. I left in a daze, drove to a local restaurant for a bowl of soup, called my mom and cried. A homeless man listened to my phone conversation from the next table. He looked at me like I was worse off than him, he didn’t even ask me for money.

I told most of my friends and family about this over email. I couldn’t say it out loud. I walked by the lake and cried. I tried to read, but I cried. I fell asleep crying. On one particularly dark day, I contemplated stepping in front of a bus. Life is that precious and potentially that easy to end. But I’m not the kind of person who gives up on anything, least of all myself. I would find a way through this impossible situation.

Whenever I went inside myself to meditate, I heard my heart beat strong in my ear, my lungs deeply taking air in and breathing out. My mind, once quieted, let my body do the talking. So I asked my colon if it was ready to leave. The answer? A loud and clear, “No. We’re working for you.”

A mistake at the doctor’s office meant that my slides sat there for most of the summer. Perhaps, further evidence that my situation wasn’t as scary as my doctor had suggested? In the mean time, I moved to Rhinebeck, New York for a new job. Life was moving on.

On a rainy October morning two days before Halloween, my doctor called to tell me the slides revealed traces of high-grade dysplasia. There was no waiting. It was time to remove my colon. I was devastated. I decided it was time for a new doctor.

I told my new gastroenterologist everything that had happened so far. He seemed pragmatic and willing to work with me. We would do another colonoscopy. If the results proved the same, we would decide the best course of action for me.

I meditated every day, but I planned for the worst. I wanted to make sure I was ready. I wrote four pages of hard questions. I imagined my life post-surgery. I made peace with my scarred and overworked colon.

What if what you don’t want to happen doesn’t happen?

The doctor told me there were zero signs of dysplasia and zero signs of inflammation. A pathologist reviewing my slides would not even realize I had Crohn’s Disease. Only scar tissue visible to the eye during the procedure would have revealed evidence of my history. Based on these results, he could not agree with my previous diagnosis. He thinks with annual colonoscopies to track my progress, I can keep my colon. I wanted to hug him, I wanted to sing at the top of my lungs. I wanted to call my mom, my brothers, my sister, my cousin, my friends and coworkers. I wanted everyone to know I was back.

So why am I sharing this story with anyone who may stumble upon my blog? I didn’t even realize how big the dark cloud I was living under was until I walked out of that doctor’s office. All the little stressors I’d been holding onto meant nothing now. “Why me?’ turned to “I’m so glad I’m me.” All the sleepless nights and the secret self-blame, were choices I made as a way to continually beat myself up.

Regardless of any doctor’s advice, I’m the one who decides how I’m going to handle everything in my life. Do I want to see things through a lens of joy or fear? Give up or fight? I don’t have to have all the answers to make that decision, I just have to consciously decide what it’s going to be and focus on that state of being each step of the way. I’m going to die eventually, but it’s how I choose to show up while I’m alive and kicking that matters. I want to show up smiling.

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10 thoughts on “A New Lease on Life

  1. I’m so glad you listened to your intuition and got a second opinion. And even happier to hear the positive outcome of that second opinion! Great news! Thank you for sharing – it’s such a good reminder to all of us to listen to our bodies and our intuition.

    xoTerri

  2. Very wonderful post, I too have crohns disease and I too have had far too much bad news from doctors. After being told I had IBS for two years my bowels decided they had had enough, and ruptured. I woke up from emergency surgery with a stoma and an ileostomy and thought “why me?!” but now, after regaining my life, and realising how precious it really is, I’m finally saying “I’m the luckiest girl alive!” so inspiring to read about your positive attitude in the end. Chronic illnesses may effect the body, but they mess with your head all the same! Reading your posts is like listening to myself! I don’t know you but I am immensely proud that you’ve overcome that feeling of wanting to step in front of that bus. Thank you for posting! – Roisin.

    • Roisin,

      Thank you so much for taking the time to share a little bit of your story with me. I cried reading your story because I feel like I know you as well. We are kindred spirits finding our way with this illness. I’m so happy to have connected with you and I plan on following your story through your blog as well. I hope you are healing well and enjoying your life post-surgery.

      Sincerely,
      Marlene

  3. Thank you for sharing so honestly and openly, Marlene. You give others permission to do the same, share their fears, as well as their hopes and dreams. You are courageous and I acknowledge you for listening to the wisdom of your body and finding a new doctor! It is always sage advice to seek a second and even third opinion when faced with any life-altering diagnosis or treatment. You inspire me.

  4. Thank God you got the second opinion. Very scary stuff.

    Here is an interesting video that a doctor severely disabled with MS (my particular favorite autoimmune disease) made regarding diet. She is talking mostly about diseases of the brain, but my suspicion is that this diet would be good for everyone.

    My mother in law had to have her colon removed due to some bungling by people who would be better at inspecting stainless steel piping and then a bout with C. diff. I made it one of my goals in life to be buried with my colon intact.

  5. Really happy to hear that both Roisin and you, Marlene, are celebrating life. Thanks for the reminder 🙂
    Love
    Susana

  6. To say that you have courage and determination would be an understatement.Someone in my family has Crohns,so I have an idea of how this
    transforms your life.Every day is a gift,so keep kicking and smiling!
    Christopher

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