Author’s note: I actually wrote this column in July 2014 about my friend Marty Lancaster but did not want to publish it during her lifetime. This week marks the one year anniversary of her death following a gallant battle against Huntington’s disease. Marty passed away on Easter Sunday 2017 and nothing could have been more fitting for our sister in Christ. My friend Mary and I were able to be at her bedside to sing Easter hymns right after our service at the Episcopal church. She knew we were there and I’m so very, very glad.
Imagine having a disease that takes everything away from you. Imagine that you know exactly what is going to happen to you, having watched your mother descend into the same world of deficits. Imagine having it not happen quickly, but slowly, over a long period.
Huntington’s disease is the thief in my friend’s life. She had to give up her house for a nursing home. She had to begin using a walker as the jerky movements brought on by the disease made it difficult to walk. The walker was eventually traded for a wheelchair. Now she must be strapped into the chair so as not to tumble out. She often lurches backward, necessitating a special wheelchair to prevent a backward flip.
She can’t swallow liquids without thickener. With swallowing being an issue, solid food became forbidden, traded for a plate full of liquefied entree. Using silverware became difficult and she is fed by an attendant who urges her not to rush. She wears a huge bib that is often soiled.
She can no longer write legibly and things come out as wild lines on the page. Her speech is badly impaired, making understanding her a challenge. She repeats key phrases over and over, perhaps in an effort to be understood.
Even with all of this, she is so clearly “in there.”
Yet I have never once heard her complain. When I ask her how she is she always replies, “Great!” or “Terrific!” or “I’m good!” One time when I told her how amazing it is that she is always in a good mood, she hollered out, “It’s the meds!”
She is my hero.
Long ago, when this disease first took hold of her, she made the decision to stay in Oberlin where she could be near her church family. Though she had a brother and a sister in different states, staying near Christ Episcopal Church was important to her.
We’ve done our best to step up to the plate. Several of us go regularly to read to her. Parishioners pick her up for morning prayer several days a week and for church on Sundays. When she needs clothes or sundries, we help. People will go and write letters for her that she painstakingly dictates. A small group from our church, headed up by Fr. Brian Wilbert, acts as her care family.
Those letters are important to her. If she hears that someone in the parish is ill, she is the first to want to send comfort by way of a letter. If there is no one to write her message, she writes and writes and writes to what amounts to lines of scribbles and has someone address the envelop for her. Anyone receiving one of her tomes knows, even though it is not readable, that it is heartfelt.
She keeps a spiral notebook that she fills with records of prayers for others. She takes home the church bulletin and copiously prays individual prayers for those on the lists who need support. She sits with those she has befriended at Welcome Nursing Home, holding hands or reading morning prayer service. She is steadfast in both her faith and in her friendships.
We have been reading together for six years now and I’ve watched the steady decline that breaks my heart. Each time I leave I hear echoing all the way down the hallway, “Thanks for being my friend.”
She is my hero and I’m the one who is lucky to have her as a friend.
Prior to Huntington’s she was very active at Christ Episcopal. She fixed things, climbed ladders to help change bulbs or decorate the church, served on committees, and gave freely of her earthly treasures to help the church. Once, when she inherited some money, she gave the entire amount toward establishing a space for a community youth group. She is generous and kind and thoughtful and caring.
There is no doubt that she is my hero.
I have never seen her bemoan her fate. I have never seen her cry — that is, until today. Today in church she was inconsolable. She kept chattering on about keys and during communion today she began to sob.
She gave up her house, her mobility, her ability to write or to talk clearly. In essence she gave up her independence, but what made her cry was giving up the keys that she had cherished since the onslaught of this terrible disease.
They were the keys to our church. They were the keys she had used while serving as sexton. It was so much to give up.
I tried to convince her that we all love her, that she is family and that she has the key to all of our hearts, but I’m not sure I convinced her. The physical act of surrendering those keys broke her heart.
Any time people might think that having a church family is not important, they should spend some time with my friend, Marty, who loves her church and who is my hero.
Pat Gorske Price graduated from Oberlin High School and taught English and drama there for 12 years. In retirement she continues to enjoy writing and theater. Comments can be made to firstname.lastname@example.org.
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