By Nancy Sabin Wexler, June 1, 2017
The Pope, himself, performed a miracle!
To the families in the front row from Venezuela – Barranquitas and San Luis, he kissed and consoled a crying mother weeping that she was living in a tin shack surrounded by garbage and barbed wire, without food or water. She has HD and her family has abandoned her. The Pope consoled her in Spanish and the relief was palpable on her face. Next he consoled and hugged Anyervi, a 13 year old with juvenile HD who had been shunned and banned from school because people mistakenly believe HD is infectious.
Charles Sabine, one of the organizers of the Hidden No More event, made the wishes of several of the children come true! Anyervi, before meeting the Pope, was presented with a soccer ball and Champion’s League shirt by his soccer hero.
Children from HD families in Venezuela have no toys – only garbage bags, plastic bottles or other trash they may creatively turn into something.
Then came Brenda, a 15 year old girl with juvenile HD from Argentina. The Latin superstar Axel serenaded her with her favorite song. Before our enthusiastic eyes, her wishes came true!
All the families had a joy, wonder and relaxation that they have never before known! They became children again!
The families from Colombia and Argentina were next. With each, the Pope stopped thoughtfully and listened. He paid attention to each person. To the woman with HD in a wheel chair from Puerto Rico, he bent down to kiss her. To the man from Ireland with HD who kept jumping up to greet him, he offered his hand to help him sit down. He blessed rosaries and pictures of relatives lost to HD and permitted “selfies” with awestruck family members.
When I greeted him, I told him that I discovered the HD gene. I told him I am at risk for HD since my mother died of it. I told him finding the HD gene was entirely thanks to the Venezuelan families. I told him I loved the Venezuelan families sitting in the front row. I told him I had taken care of them and their family members. I thanked him for supporting research in his speech! I promised him we would find the cure and bring it to Venezuela for free!
He hugged me back and was so warm, gracious, kind and focused on me. I knew I was in the presence of a kind of beatitude and warmth that radiates from him!
He personally greeted, listened to and consoled more than 150 people. He spent more than one hour with us - we never felt he was rushed.
He began his Audience with a speech which has many pearls of wisdom in it. He began with an admonition. He said of Hidden No More: “It is not simply a slogan, so much as a commitment that we all must foster.” It must become so much more. It must become the launching pad for dignity and not returning to the shadows of shame and humiliation.
Huntington's disease is a brain disease, not a sin or a crime. The Pope spoke about Jesus: “Throughout [Jesus’s] ministry, He met many sick people; He took on their suffering; He tore down the walls of stigma and of marginalization that prevented so many of them from feeling respected and loved. For Jesus, disease is never an obstacle to encountering people, but rather, the contrary. He taught us that the human person is always precious, always endowed with a dignity that nothing and no one can erase, not even disease. Fragility is not an ill. And disease, which is an expression of fragility, cannot and must not make us forget that in the eyes of God our value is always priceless.”
Next he turned to the families: “Those who experience Huntington’s disease know that no one can really overcome loneliness and despair if they do not have people at their side who, with self-sacrifice and steadfastness, make themselves ‘travel companions.’ You are all this: fathers, mothers, husbands, wives, children, brothers and sisters who, on a daily basis, silently but effectively, accompany your family members on this difficult path.”
He talked about the importance of family members and others who are good at taking care. He talked about the value of good, thoughtful caring.
He advocated for increased research on the brain and genes. He recognized that there are no treatments or cures for HD. He talked about the need for better diagnoses and handling the delicate and precarious state of first diagnoses. He spoke to the need for attention to the living circumstances of patients and families.
Above all, he advocated for the dignity of the sick, poor, hungry and humble. Everyone – including me – cried meeting a man so accepting. Because the symptoms of HD can be very physically and psychologically alienating, many people fail to take the time to know patients and families.
HD affects every aspect of movement, mood and memory. The uncontrollable movements in all parts of your body fling you around like you are under the strings of a puppeteer. Movements may make you shred clothing and bedclothes. Hallucinations and paranoid delusions in someone with HD may make it impossible for someone else to give them food, drink or medicines. They fear they are being poisoned. Cognitive problems make it hard to learn new things. Choking is a constant hazard and people are starving. The suicide rate is high. These all are part of the illness itself.
Patients and families are often shunned. The fact that there are no effective treatments and cures makes their situation even more perilous.
My sister and I were taught not to mention having HD in our family because we could lose jobs and insurance. We were advised we should not have children.
Obituaries of friends who suffered from HD often hide the cause of death for fear that the rest of the family will be stigmatized and ostracized, knowing that HD is hereditary.
The Pope teaches us to be brave and stick up for dignity and grace. Having so many people in the room who share a genetic risk and fate gives us courage to take the next steps out of darkness and stigma and shame to create a better life for all of us!
In all, people representing 23 countries attended and many more around the world heard his important message.
Having almost 2,000 people assemble to heed the Pope’s message, in the world’s largest convocation yet of patients, families and researchers, I am even more moved and motivated by the enormous momentum to change the world for the better!!