Trying to Feel Normal

imageI’ve always thought patience was a virtue I possessed. Turns out I was wrong. The last few days have been a painful roller coaster, peppered with brief moments of clarity and painless hours at a time, but have been mostly filled with a searing pain in my gut that threatens to prove to everyone that the real reason for this surgery was to complete my metamorphosis into a dragon. I threatened to punch my surgeon twice today, he responded with a kind smile & squeezed my hand tightly.

Turn out when you remove the majority of someone’s liver you effectively put their entire gastric process to sleep. My intestines are in a fugue and my now missing gall bladder are wreaking havoc. I have finally been able to admit that I know what 10 is on the pain scale. Don’t get me wrong, my ten could be your five, but this is by far the worst pain I’ve ever felt.

It’s a small price to pay, and I do know logically that I will improve, but right now it feels like an eternity. I am impatient and hard on myself. My team of nurses & doctors assure me that my progress is on track. When I see Derek I remember that this is all worth it, but when I’m alone in my hospital room, I cry like an orphaned dragon that has fire in its belly, but no ability to expel it.

This morning, my mother left & I was racked with sobs as she told me she wished she could stay longer. She has been amazing and has fulfilled her task of seeing me through to this part. I will look to her for strength as I know she has experienced the high end of the pain scale and come out on the other side swinging. My sister took over and slowly & methodically cleaned my face, my back, my arms. We scrubbed away a little more of the iodine that still covers the tops of my legs; a reminder of one week ago when I was on the operating table. Then she helped me put underwear on for the first time since last Monday and picked out some pajama bottoms so I could walk down the halls without being either swaddled in johnnies far too big or clutching at bits of fabric to cover my butt. I felt more normal than I had in days, the searing pain of my gut awakening was present, but I felt clean & decent.

If this all seems melodramatic, it’s because in many ways it is. It is a surreal thing to want only to make it to the other side and then find when you get there that it’s not all sunshine & unicorns. We are surrounded on all sides by profoundly sick people. People who are languishing, waiting for an organ that may never come. I am humbled by both of our success & ashamed I can’t embrace that success out of respect for our neighbors. We are all a part of this club we never wanted to be members of, relying on medicine to fix us, leaning on the brave nurses that held my hand last night at 4 in the morning begging for the pain to stop. They did everything they could and now it is up to me. To remember that Derek and are the lucky ones. That despite the pain, we’re on the other side.

All of your kind words and support have been so helpful to us both. Knowing that on Monday we had 1000 views (so many of you refreshing for updates) was amazing to see. I will try to remember you all when the pain seems too much, that we’ve got not only our own strength but the tenacity of all of you. Thank you.

11 Replies to “Trying to Feel Normal”

  1. you make a better dragon than Sean Connery’s voice + CGI did in that movie. (Sorry to say that’s the most eloquent, inspiring thing I could think of at the moment.) Hang in there!

  2. Your writing poked at many of my own tough memories and reminds me of just how courageous you and Derek are… And what an awesome writer you are! But back to your suffering…. Many of my favorite sayings come to mind: this too shall pass, be kind to yourself, ten yards at a time. My mantra comes to mind: may I be peaceful, may I be free from suffering. That all said, many times you just gotta cry. Do whatever you need to to get through it all.

  3. Kiddo, the pain down in this end of the hall was a 7 or 8 today, I didn’t want to admit 10, but it was up there. Plus, this new room reminds me of the CMC recovery – esophogeal varices that kicked this into high gear. I’m having flashbacks of the pain to swallow, gastric reflux, and midnight pacing just to try to think of something else. Hang in there- when we do get home, it’ll be much more comfortable which can only help the emotions.

    1. You are my rock. I wish I had half the strength that you do. This teeny tiny insight into your life has been sobering. I can’t wait to take naps with you from the comfort of our little home oasis.

  4. Hang in there Janiaks. There are a least 1000 people who love you and don’t want you to be in any pain. You have every right to be as annoyed as you want with the slow recovery and its associated misery. We all know about the starving kids in Adylasia…it’s sad. But you two are our heros and we actully know you (not just about your possible existence). I remember a time when my wife was registering a “10” on the pain scale during the labor/birth of my son. She pleaded in anguish to the midwife “I can’t do it!!!”. The midwife calmly replied, “You are doing it.” Think of you both a lot and evangelizing your inspiring story to many people arond me constantly.


  5. I hope the pain decreases faster for you both. This was a huge selfless act, Logan. You will make it. Stay strong! One day at a time. Maybe one hour at a time. Thanks for keeping our derek healthy. You will enjoy a lifetime of laughs and happiness , I just know it. You were made for each other!

  6. I wish I had something uplifting for you guys. I’m just in awe of all you have gone/are going through. The idea of you guys home and recouping together brings a smile to my face. You both are super badass. Your first breath of fresh non-hospital air will be amazing. Spring is here. Everything is in bloom and refreshing, just like you guys.

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