On March 25, 2016, a catastrophic moment in my life changed everything for me and my entire family—my 33-year-old son, Jordan, was diagnosed with cancer along with severe brain disease of unknown origin. Upon being told the diagnoses, my breathing stopped and my heart skipped a beat as I experienced every mother’s nightmare—finding out that your child has a life-threatening illness. As the doctor spoke, his mouth moved but I was frozen in terror, unable to hear anything he was saying, unable to move or articulate any appropriate verbal expression. As he outlined what would surely become a whirlwind year of surgery, chemo and radiation therapy, my mind swirled with the horrors of such horrific diagnoses. I’m a nurse! I’m a professional patient advocate! I’m a mommy! How could this be? How could I protect my son from the dismal and unpredictable reality he was now facing? How could I protect him from the pain…and the suffering?
As we listened to the doctor give us the bad news that would change our lives forever, I gently wiped away my son’s tears with my bare hands, blinded by my own tears that streamed uncontrollably down my cheeks like an open faucet. The pain and the terror were too much to bear. My son and I embraced as we shamelessly wept together. I remember whispering in his ear that everything would be all right, but how could I knowingly tell him that? There were no guarantees offered of a perfect outcome. Despite assurances of a high cure rate for the cancer that he had, what if he fell into the lower incidence of a dismal outcome? In the face of a potentially life-threatening illness, how could I not be totally honest with him? That one moment solidified my commitment to him and to myself, that everyone involved in his care would be expected to be totally transparent and honest with him. He should…and could…expect no less than that. That openness and truthfulness would serve to empower him as he could now develop relationships with his medical team based on respect and trust. He could ask the questions that needed to be asked, feeling comfortable knowing that he would have access to all the information he needed for thoughtful analysis and decision making about his situation and ultimate care. In all of his misery, he remained calm, accepting, thoughtful, analytical, mellow and mindful. He quickly became a great advocate for himself. He never once said, “Woe is me” or “Why me?” ” Despite all that he was facing, he became a role model for each one of us to emulate.
Once our tears ebbed, I told my son that our family hysteria was now over and that we would pick ourselves up and move forward to do whatever we needed to do to get him well. His new life reality and full-time job for the next several months would be going through all of the nuances, appointments, surgeries (more than seven), treatments, diagnostic tests and other assorted processes necessary to save his life and get him well. While I put on a good show for my son and had everyone fooled about how strong I was, I will admit I was terrified. During those rare moments when I was away from his bedside, I would break down, sobbing hysterically over and over again ” Please God, I don’t want to lose my son”. “Please God, I don’t want to lose my son”. Even as I write this account, tears stream down my face as I recall those anguished private moments between me and my Creator.
We moved our young family from New York City to Charlotte, NC in 1988, when Jordan was five years old. In 2013, he moved back to New York City to attend graduate school at NYU. Fortunately, he finished his program just prior to the onset of his major presenting symptom, horrifically painful and debilitating headaches. During one of our frequent telephone conversations about 6 weeks after the headaches began in early February, he quietly wept, telling me he was unable to bear the headache pain anymore. I was on the next flight to New York City. The following morning, we were in the Emergency Room at wonderful Lenox Hill Hospital getting an MRI of the brain. That was March 18, 2016…and so began our journey into darkness. A journey that would propel us through a surgical lymph node biopsy, two brain surgeries, brain drainage tube, Ommaya Reservoir in the brain, bone marrow biopsy, CT Scans, X-rays and MRIs too numerous to identify, PET Scans, seizure activity, EEGs, chemotherapy, radiation therapy, second opinion at a large cancer specialty hospital, skin biopsies, multiple daily blood tests, multiple visits to the Emergency Room, three kidney stone operations and much dread, pain and fear.
Jordan spent a total of forty-seven days as an inpatient in the hospital, 24 them in the intensive care unit. For 47 nights, I slept on a recliner at his bedside. Spending that amount of 24/7 time in a small hospital room with a beloved son facing death not only impacts your life, it changes your life forever. How could you experience such a “moment” in your life and not have it change you?! My momentous change came initially when my son was first diagnosed and snowballed into a major life shift for me over the many terror-filled months. This upper middle class baby boomer BECAME A MINIMALIST!
Prior to my son’s illness, it was not unusual for this germaphobic nurse to shower twice a day. I would never wear clothes more than once without laundering them. Makeup and lipstick were essentials before leaving the house. I never took my diamond engagement and wedding rings off. I washed my hair every day. The socks had to match the shoes, and every outfit I wore had to be color-coordinated. However, once I “moved” into the hospital along with my son during his first hospitalization, my status quo changed instantly and dramatically. I now found myself wearing the same clothes for days at a time. I didn’t shower or shampoo my hair for days at a time. I took off my diamond rings, necklace and earrings. I stopped wearing makeup. I cut my hair ultra-short, so I didn’t need to bother with it. I walked around the hospital in hospital slippers. I ate hospital food, lots and lots of bagels with cream cheese, and enormous amounts of cookies and pastries that visitors seemed to think were the perfect gift for such a scenario. I slept on an uncomfortable recliner instead of on my Tempur-Pedic mattress. And I didn’t care! My entire being was focused on my son—as mommy, as personal head nurse, as caregiver, as patient advocate. I realized very quickly that woe is the patient who doesn’t have an advocate with him or her at the bedside. I became impassioned and obsessed with advocating for my son. Nothing else mattered. Nothing else was important. No one touched or treated my son without a thorough verbal investigation by Mama as to their intent and as to the last time they washed their hands.
My son’s illness has brought me to my knees…on more than one occasion. When the doctor tells you ” you have a very sick son”, the terror spreads through your entire being, paralyzing you in an instant. The days and weeks and months pass by ever so slowly as you anguish over end of life conversations and other related issues that tear at your gut and rip your heart apart. Each morning you wait for the doctors to make rounds to find out what trauma or bad news the medical team has in store for you that day. The days all seem the same, long segments broken up by the delivery of meal trays and multiple diagnostic procedures. It’s impossible to keep track of the day of the week and the actual date. The only way you can tell one day from another is by tracking the days of hospitalization on the whiteboard installed on the bleak wall of your hospital
With lots of time to ponder about my son’s precarious predicament and on life in general, I often reflected on the perfect and “great” life I had been privileged to enjoy up until my son’s illness. I chuckled at the obsession we Americans have with the life-long pursuit of material things. I thought about how the acquisition of those material things often becomes the motivation for selling one’s soul to the devil. My momentous enlightenment came as a result of my son’s grave illness when I realized that material things are totally insignificant and meaningless when someone you love is suffering and facing the reality of death. The biggest diamond ring in the world won’t bring you back your dead child. A costly work of art can’t guarantee you won’t get sick. A fancy car doesn’t take you to exciting places if you have a debilitating and chronic disease. Expensive vacations don’t bring you health and happiness.
So what is it in a minimalist life that brings joy? What is it about living simply that allows one’s soul to transcend, finding a relaxing comfort zone within the demonizing rat race of materialism, in a place where serenity and calm prevail and where the soul can flourish and find peace?
Living a minimalist life allows you to feel joy in the simplest of things. Laughing at dad’s squeaking shoes as he tries to tip toe around quietly while navigating Jordan’s hospital room. The comic relief of a joke shared between mother and son that could only be appreciated through the intimacy of sharing a tiny room 24/7 for 47 days. Deriving extreme pleasure from visits by pet therapy dogs, whose only goal in life is to lick you, bringing comfort and love. Being spiritually uplifted by tunes from the hospital’s music therapist, who sings, strums and drums away many of the dark moments along the journey. Achieving total relaxation from the massage therapist as he massages out your tension, stress and fear. A beautifully decorated cupcake from the dietary department which ushers in your birthday on day 30 of your hospital stay, along with a cheerful off-tune rendition of the Happy Birthday song. A hand-made birthday card that the night nurses create so you would have birthday greetings waiting for you at your bedside the minute the clock strikes your birthday hour. The excitement of the snack lady’s visits as she makes her rounds in the late afternoon, offering delicious snacks and beverages in exchange for boredom and fear. Having the nurses who cared for you on another floor find your new room location and visit you during their meal break. The hundreds of get well cards, texts and emails from family, friends and even strangers, which communicate to you that you are not isolated from the outside world, that others care, and are reaching out to embrace you in the shelter of their prayers, good wishes and love. The doctor who stops by for a visit on his way home after a grueling day, just to see how you are doing. The doctor who sends your mother a text on Mother’s Day …”to the best mom in the world”. The nurse who feels your pain and holds your hand during a painful and scary procedure. The elderly volunteer who brings you fresh ice water just as your throat becomes dry and parched. The GoFundMe page your beloved older brother starts for you that raises over $39,000 in a few short months. The Chaplain who says a prayer for you, even though you are of different faiths. The doctors who thank you for your patience and courage during emotional days of painful diagnostic testing, while they attempt to solve the mysteries of your diagnoses and figure out how to save your life. Those same doctors who support you on your daily emotional roller coaster and who tell you they love you. It doesn’t get much better than that!
What are the simple joys of living a minimalist life you might ask yourself? They don’t get any better than the relationships one gathers along life’s journey. Relationships in which simple random acts of kindness can and do change the world, one kindness at a time. Who needs diamonds when the brilliance of relationships elevates the soul, inspiring one to greatness and a sense of purpose and direction… and of feeling loved? After almost seven long and arduous months, Jordan is finally back at his apartment and continues to get treatment as an outpatient. I can see him physically improving each day. I can see his spirit getting stronger each day. I remain with him, caregiving, cleaning, shopping, cooking and advocating for him. Even as things start to improve, I can’t help but agonize over the fears of a possible re-occurrence which lurk just within my conscious mind, ever present to undermine my best efforts to suppress them. I guess I will just have to learn how to live with those fears. Jordan deserves a shot at the most normal life he can live. After everything he has endured, he deserves all of God’s blessings and good grace.
As my son gets better and each day brings him closer to normalcy, I contemplate a return to my own normal life, 750 miles south of NYC. I refer to ” normal” rather sarcastically as I know that my life will never be normal again. I am forever changed by my son’s illness and will never be the same “normal”. I know that I will go to sleep every night thinking of him and will awaken every morning with him in those first thoughts of the day. I will wonder how he is managing. Is he physically able to keep his apartment clean? Shop for himself? Cook for himself? Is he sad? Scared? Does his head ache again?
I also ponder whether or not I will fall right back into my former materialistic life in my 4,000 square-foot home with a flat screen TV in every bedroom. Will I be able to resist the temptations associated with the materialistic lifestyle of the baby boomer? I actually fear moving back home. How do I re-invent myself? How do I go back to the job that I walked away from so many months ago? How do I re-adjust to a kitchen stocked with every appliance and assorted kitchen item that you could think of? How do I choose an outfit from a closet bursting at the seam with more clothing and shoes than any one woman really needs? How do I pick up the pieces of a life after an absence from that life for so many months? How do I intimately re-connect with my wonderful husband when my life has been myopically consumed for and by our son’s well-being for more than nine months…and in perpetuity moving forward? Only time will tell. So yes, I’m wearing the same underwear for the past five days and haven’t showered in almost one week. I couldn’t care less. I’m a minimalist now.
Lorrie Klemons, RN, MSN
Care Partner Advocate & Blogger, Patient Power
Co-founder, Patient Action