Last year, while traveling in Greece with my husband for our wedding anniversary, we happened upon the little island of Spinalonga, a former leper colony. This tiny island is accessible only by boat, and while from 1903-1957, no one stepped foot on the island aside from patients and the doctors and nurses who treated them, today, Spinalonga welcomes curious travels from around the world, who step through the hauntingly named, “Dante’s Gate” to enter the abandoned island and learn its story. It was while on Spinalonga six months ago, that I started reflecting on the ways in which our society casts others out, literally and figuratively, who are “different”.
In April of 2016, my mother was diagnosed with a neurodegenerative brain disorder called Progressive Supranuclear Palsy (PSP). I was living in Washington at the time, and I remember when my father gave me the news over the phone; I had to ask him several times to repeat it, until finally rummaging around the kitchen to find a piece of paper and pen so I could write it down. I had never heard of it. I also remember feeling awash with sadness and slight panic, as I began researching PSP. Research-based literature was scant, and outcome studies on treatment prognoses even less, due to the small number of people diagnosed with this uncommon form of Parkinson’s disorder. What little information I was able to find was not promising; no current therapies or medications, no cure on the horizon, and a rapid decline of neurological functioning in her future. With tears streaming down my face, after reading one particular medical journal article, I was hit with a stark realization; my mother was on a steep downhill descent to death, and she was only 78 years old. I felt numb. After the shock wore off, I felt moved to do something.
After thoughtful prayer, reflection, and conversations with family, friends, and employers, my husband and I made the decision to move to Southern California to be near my parents to support and assist them in any way we could. Moving is always stressful, and there was much to do to prepare for the move, but things fell into place quickly once we made the decision. We felt blessed to work for companies who supported our decision to support my parents – trying to find new employment was one less stressor we had to face. I was able to find a neurologist in Orange County who specializes in Parkinson’s disorders, who has seen more cases of PSP on the west coast than any specialist. She has been a Godsend as she has educated us, supported us, and given our family hope in fighting this devastating illness. Having this doctor on our care team has also decreased our family’s stress level. As I look back at the two years we have into this journey since my mom’s diagnosis, the single biggest stressor that I never imagined being an issue, is the one that has been the biggest issue of all, and one my mother faces every day – rejection.
Rejection from strangers is one thing – those who stare curiously at my mother as I wheel her through the mall, and then quickly turn their head in a mixture of fear and repulsion, as she stares straight back at them, arms and legs crumpled into a crippled fold, mouth agape, but smiling. Always smiling. I think my mother was born with a smile on her face. She has always been one of the happiest people I have ever known. Can’t you just smile back, I want to shout. What’s wrong with you? My mother may be dying, but at least she still has the decency to smile at you, a stranger. Stop staring if you can’t at least offer a smile in return. It won’t cost you a thing. But in the instant you turn away, you are costing my mother her dignity. Your rejection hurts her more than you know, I want to say to strangers and friends, alike. Yes, friends too.
It’s the rejection from friends that I was not prepared for – that my mother was not prepared for, as she began facing the ugliness of this disease on a daily basis. My mother has always been surrounded by friends. The social butterfly, the life of the party, the extrovert, the friend to everyone and anyone who needed a friend. Giving, always giving – whether to her patients, as a Registered Nurse, or to the needy as a volunteer in various organizations, and even missionary work. I have watched my mother pour out her life for others, and now, with the life being sucked prematurely and mercilessly from her, when she needs a smile and an encouraging word, many of those friends she has worked, served, and enjoyed life alongside of, are nowhere to be found. There are a few loyal friends, who have stuck around and done their very best to remain a friend to my mom in a difficult season of friendship. Interestingly, others that my mom would have never expected, have reached out to be a new friend in this dark season of her life – God bless them. They know what love is. But largely, the majority of the people who have always been in my mother’s life have suddenly abandoned her. She is devastated, and for the first time in her life, lonely.
Since I study human behavior for a living, I have been chewing on the changes in my mother’s social status for the past 18 months, as I have witnessed firsthand these displays of rejection. If someone like my mother, who has given to others her entire life and is part of a large network of “friends”, is suddenly abandoned by many of the people she thought she could count on if she ever needed them, then what hope is there for those who are more reclusive, introverted, or simply with a less charismatic nature and a smaller circle of friends? What is it about human beings that make us so uncomfortable when someone is different than us? When my mother fit in with the social norms of the crowd, she was embraced, now that she is unable to uphold the same level of social engagement, and is thereby different, she is shunned. Why?
Fear. That’s what I see in the eyes of both strangers and friends who don’t know how to approach my mom. But what exactly are they afraid of? Granted, my mother’s physiological abilities and neurological functioning have changed dramatically in the past two years, but her happy spirit hasn’t changed at all. She does not have a contagious disease – she is not a leper! Smiling at her, or saying Hello, it’s so nice to see you, Georgia, will not contaminate anyone. But that’s how people behave around her. One of the symptoms of my mother’s condition is a decline in speech coherence. She can be hard to understand at times. I understand her most of the time, but only because I try to understand. One time, someone said to me, “I want to come talk to your mom, but I have a hard time understanding her.” Me too! But trying is an act of love, not trying is an act of cowardice. We fear what we don’t understand.
Hope whispers, Love tries.
I could tell you numerous stories of interactions with “friends” at parties or church or other gatherings, when I have witnessed people who know my mom avoid her like the plague. It doesn’t take a rocket scientist (or a human behavior expert) to read these people, either. It’s painfully obvious. The most painful part is the hurt I have seen reflected in my mother’s eyes.
So, why am I blogging about this? Many of you reading likely don’t even know my mother. I’m writing because I’m hoping it may spark some change in the way we, as a society, interact with people who are different than us; physically, mentally, spiritually. Or any kind of different. We need to do better. We need to stop being afraid of that which we do not understand and seek to understand.
Knowledge is the beginning of wisdom, so if you don’t know what to do around a person who is different than you, try seeking to know them and understand their situation. If you don’t know what to say to them, remember there is a language that is universally understood – love. No words necessary. Give a smile, offer a hug, extend a hand to hold for a while, or just sit with someone in silence. Love speaks for itself. Love heals. Love protects. Love ushers in hope. Love changes everything.
And perhaps the best of all – love drives fear away. Perhaps that’s why the good book tells us that when all is said and done in this life, there are only three things that will remain; faith, hope, love – and the greatest of these is love.