Behind the Smiles

“Rejoice in hope, be patient in tribulation, be constant in prayer.” (Romans 12:12)

Someone I hold close to my heart received some difficult news today and I was inspired to write about the unspoken and melancholy effects critical illnesses have on a patient.

While medical conditions cause severe emotional distress amongst family members, we sometimes forget to address the flood of emotions the patient is facing.

Coming from someone who fought for their life for 2 years, the array of emotions felt during an illness is overwhelming. The minute you get told your prognosis by your doctor, or in my case, unknown prognosis, you definitely go through the 5 stages of grief.

It starts with denial. It’s honestly hard to believe that you went from having a somewhat normal life to having a tube implanted for life support, intensive chemotherapy treatment to kill your cancer or even a time limit put on your life. Perhaps you woke up with a side ache, and that night you’re going to bed knowing you have a kidney disease. The news can be hard to comprehend, but eventually reality sets in.

The denial then turns to anger, but the anger usually doesn’t last long. It’s common to ask the question, “why me”? It’s understandable for a patient to lash out on family over little things, because inside they are trying to cope with the fact that their life is forever changed. Like I said, the anger doesn’t last long, because no one likes to be angry.

The anger transforms into bargaining, because the patient is racking their brain trying to decipher the reasoning for their situation. They feel helpless and vulnerable and want to have control over their life again, so they’ll question whether the outcome would be different if they had sought medical attention sooner or if the prognosis would be different if they got a second opinion. This is completely logical. It is tough to conceptualize the fact that you may no longer be seen as “Alex”, but rather “the sick girl”, “the girl with the tube in her nose”, “the girl in the wheelchair” or even “the girl that almost died”. But, when reality sinks in deeper, the bargaining stops.

The more and more you continue to live your life knowing you have a certain medical condition or in pain and discomfort, you simply get sad. I remember the numerous nights I sat in the hospital bed crying and crying until, literally, I had no tears left to cry. I was tired of fighting, I was tired of the hospital, I was tired of the endless examinations, IVs, vitals, ER trips and doctors. I wanted my bed, I wanted my dog, I wanted my family and I wanted my home. Home is where I felt comforted, it was familiar and it was a place I didn’t feel like a patient. I just felt like Alex, a daughter, sister, cousin and friend. But, you can’t pity yourself forever when you’re in these situations.

It doesn’t take long for patients to accept their condition and to live life with optimism and gratitude. It’s funny, because all the warriors fighting medical battles that I have met, always have a positive attitude and smile on their face. But, when I was in the hospital, my mom would get distressed when countless doctors would ask her, “Are you sure her illness isn’t self-inflicted? She doesn’t seems like a sick kid, she always is smiling, bubbly and laughing.” That was my way of coping; if I was going to spend all of my holidays for 2 years in a hospital room, then I was going to decorate my room, make friends with the nurses, take laps around the hospital with my IV pole and find unexplored avenues I hadn’t been through yet.

I wasn’t always an upbeat patient though, I definitely had my fair share of trials and defeats.

The day I got my feeding tube implanted, I had had an endoscope (a procedure where they stick a microscopic camera down your throat to take pictures of your digestive tract) earlier in the day. The endoscope tore my throat up and left it completely raw, exactly in the spot where my tube pressed against as it passed through to my intestines. The pain I felt that night from the pressure of the tube on my completely exposed throat was excruciating. I couldn’t talk or swallow (even my own spit) it hurt so bad, all I wanted to do was cry, but the minute I started to cry the pain got even worse. That was one of many moments I admitted defeat and wanted to give up my fight. But, deep down I knew I couldn’t stop fighting. The thought of letting my family down, relinquishing my fervent foundation of faith and giving up on myself fueled me to persevere.

My brother, who has been blessed with the gift of humor, used his jokes to his advantage. He learned through my illness, that he can use his humor to uplift others when they are down (he used to put his white computer charger into his nostril and wrap it behind his ear to have a tube like me while I Facetimed him from the hospital, which always made me laugh).

Being a typical 15 year old boy, he took my giant teddy bear and taped it above the sink and turned the faucet on. Of course, as juvinile humor does, I laughed and a smile grew across my face. I realized the amazing support system I had to pick me up when I fell down was worth far more than the pain I endured.

We have a smile on our face, we offer smiles and laughs to friends, family and strangers. We have a love for helping others and living life like everyone else. We handle our situations with grace and dignity, we DON’T give up. We may look okay, but everyday brings pain, trails, fear and sadness. BUT EVERYDAY, WE SMILE, WE LOVE, WE LAUGH AND WE REMEMBER…WE ARE FIGHTING THIS BATTLE FOR OURSELVES, OUR FAMILY, OUR FRIENDS AND OUR FUTURES. 

Behind these smiles are stories. Stories of tribulation, suffering, fear and uncertainty. 

“Rejoice in hope, be patient in tribulation, be constant in prayer.” (Romans 12:12)

4 thoughts on “Behind the Smiles

  1. Connie says:

    Thank you Alex. You are and were a fighter — and have surely inspire your target person to do the same!! God bless you and your friend.

    Like

  2. Maureen says:

    As your grandparents , we thank you for sharing ! You have broaden our understanding of your inner feelings through this entinse battle . Your explecit description has enlighten us and encourages us to freely offer our true compassion to other families and children during these arduous situations. We applaud your courage ,inspiration, and strong faith as a reminder that there is a ” Rae of Hope ” in each of us.

    Like

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