Written by Megan Johnson + Sarah Barnes
“I didn’t even know this place was here.”
The phrase hung in the air while two women from Real Life walked towards the front door of an assisted living facility on East Nixon carrying communion supplies in their hands. A few months earlier, Real Life had received an email asking if someone could provide communion for a woman named Julia. She had recently been diagnosed with ALS/MND, commonly known as Lou Gerhig’s disease. She was 47 years old.
Sarah Barnes and the Connection Team were more than willing to accommodate Julia’s request. But instead of a single visit, they decided to set up a rotation of visitors. “None of us on staff had any idea who she was at first,” Sarah remembered, “but the first time I went to visit, I knew this would be a friendship, not ‘ministry’.”
Sarah experienced what so many others have too. The moment you meet Julia the room shifts. There is a light that radiates from within her. This catches you by surprise when you consider her situation. Julia was 42 years old when she was diagnosed with ALS. She was in the throes of parenting three teenage children, taking care of her dog Zues, her cat Izzy, and Zeek her service dog while working in her local church’s children’s ministry.
While she had begun experiencing symptoms two years prior to her diagnosis, the answers didn’t come easy, “Unfortunately, it is a ridiculously long process to be diagnosed and almost a matter of being in the right place at the right time.”
For most of us, we would never consider it the right time to be diagnosed with an incurable disease, but Julia doesn’t see the world like most do.
“I’ve lost so many things,” she said. “I’ve been treated poorly and had my faith tested in a huge way, but I can say I have been blessed with some really amazing, supportive friends and a solid relationship with the Lord.”
With fewer than 20,000 cases a year, Julia’s condition is rare and there is no cure. “Doctors generally give people a 3-5 year lifespan after diagnosis,” Julia shared, “Some people get less, some more.”
Physically, Julia has lost the use of both legs and left arm and has trouble swallowing, eventually her ability to communicate will be lost too. However, she chooses to take notice of what she still has. “The only thing that has remained is how the Lord has taken care of me. He has been faithful to me on this journey and has continued to bring new people into my life. ”
Some of those new people have been the consistent visitors she’s received from RealLife. When Julia sent an email to Real Life, she didn’t have any expectations of a long-term commitment.
“I was not attending Real Life at the time. I was following online and starting to miss the act of communion. So I felt the desire to reach out to Real Life to see if they might come.”
Not only did they come, they stayed.
Sarah Barnes and her team held nothing back when it came to blessing Julia. They put together a Valentine’s Day Care package, transported her to church, and made sure she could attend our Newcomer’s event. Hilary Richmond created an online care calendar to organize visits. Mike Wheat put any juice-and-cracker communion efforts to shame by whipping up homemade bread for communion times with Julia. Mike’s wife, Jennie extended motherly love and has been an advocate in times when Julia didn’t have a voice of her own.
Susan Gatzemeier visited, shopped for her, and offered insight gathered from walking her own mother through her journey with ALS. Megan Johnson and Alicia Lopez visited for communion and touched Julia’s heart. Ken Barnes chauffeured her to church and helped with snow tires. Marian Felker was the one who brought Julia to the Newcomer Event at Sigillo Cellars and Renae Cowan hosted a sendoff luncheon for Julia after found out she needed to move. Ellen VanEpps served her communion and offered stories about what it’s like to move to a new community and leave her friends and family. Not to mention, the Connection Team packed her up and relocated her to a new different care facility in Waterville.
Sarah’s eyes always fill with tears anytime Julia is discussed, “Yes, she has needs. But, I also knew that each person who said ‘yes’ to getting involved received a huge blessing like I did.” It takes a village to care for those in our community, and the Real Life Connection Team desires to be just that.
“I could not imagine being in her shoes,” Sarah shared, “but if I were, I would want friends. This is not the story she wanted, but it is her story. Julia is a person of faith and looks forward to heaven with Jesus someday.
“Her mind is sharp,” Sarah pointed out, “but it’s trapped in a body that doesn’t work like it used to.”
For RealLife, it is people like Julia we want to serve and care for. “I wanted to give Julia something to ease her pain and help her know that she is not alone, ” Sarah explained about why the Connection Team exists. “God sees her suffering and has not forgotten her. Her pain doesn’t become less when we serve her this way, of course, but nobody should walk alone through hard times alone. All of us need a family.”
So how do we help those who are suffering if we don’t know what to do? Julia shared some insight, “Just try to be as understanding as possible, but also don’t act like you understand everything at the same time. Having all the ‘right’ answers is not good either. Thoughtfulness can go far.” She paused and then added, “Or perhaps imagine how you would feel if you got an unexpected diagnosis where you lost everything much earlier than you expected.”
Surrounded by just a few belongings and a picture wall of her three children, spending time in Julia’s room leaves an indelible mark on any and all who are given the privilege. It is undeniable that Julia’s resilience and joy are evidence of Jesus in her life.
“The Lord has been good to me and replaced some of the people I have lost with new people,” Julia shared. “That is huge because He knows how much I love people and He knows how much we need each other. We are definitely not meant to do this life alone, even scripture tells us that.”
“We lose everything in this world,’ Julia added, ‘Even the people who we thought would never leave us or disappoint us. Even if it feels like we have lost our relationship with the Lord, we haven’t. That is something you can never lose.”