by Brendan Sample
While feelings of happiness and joy may not inherently go hand-in-hand with a deadly muscular disease, one Flourtown resident has been able to look on the bright side of life despite being paralyzed from the neck down. Since the age of 22, 60-year-old David Murray has been living with distal myopathy, which grew from initially making it difficult to walk to nearly complete paralysis.
David is currently unable to leave his house and go out without assistance, which has left him almost completely homebound. He has managed to find ways to make his situation work, as he uses voice controls to work devices in his house. He enjoys watching movies and reading books on his computer, and spends time watching birds in his backyard.
A local fundraiser is being planned to help him stay in that home.
Although he has lived most of his life in a wheelchair, David does not find himself dwelling on what could have been or how his life could be better. He is still able to find joy in his life thanks to a combination of personal realizations and having a strong support system.
“I don’t consciously think about it,” David said. “I just wake up and I think, ‘Oh good, another day.’ When a human is challenged by something in their life without their control, the inner strength takes over. Whether you know it’s taking over or not, it just happens. I think I have a strong will to keep going, but I think if I didn’t have this support around me, it could be a different story … I’ve had a lot of great people around me to say ‘keep going,’ and so I don’t want to fail.”
David is not the only one in his immediate family to have been diagnosed with this rare disease, as his late sister Coleen was also diagnosed with distal myopathy at 22 years old. Both David and Coleen lived in the house together from the time it was constructed until Coleen died in 2014 at the age of 50. Although they were both paralyzed to a degree, the disease affected them differently in other ways, as Coleen’s throat and lungs were damaged, which required her to be on oxygen.
While David was always close to his younger sister, their bond was more than just a shared disease.
“We were so close,” said David of his late sister. “We had similar personalities and we were just always happy, which is good. We were so similar – we’d laugh a lot and joke a lot … Everything I did, I did it with her in mind because I knew I had to take care of her for the rest of my life. She’s always gonna be in my life. Even if we didn’t have the same disease, we’d still very close. She was just a good person.
Despite living alone, David is able to maintain a level of independence, albeit with the help of visiting caregivers, thanks to a handicap accessible house built by his mother, Catherine, in 1987. With two children in wheelchairs, she needed a home that would suit her entire family, and it continues to do just that after more than 30 years. David also has a specially designed wheelchair with NASA technology that allows him to control it by moving his head.
Widowed with five children at 37, Catherine had to work as many as three jobs at once to support her family. Thankfully, the Murray family has also had the love and support of many close friends and neighbors, who have put on several big fundraisers since 1989. One of the biggest supporters of the fundraisers has been Patricia Sivel, who has known the family for over 40 years and is credited by David as being his “guardian angel.”
“I’ve just always been there,” Sivel said. “I’m his [David’s] hands and feet. He’s a fun guy and he makes me laugh all the time. To see someone like that who can only speak but is still upbeat is, to me, really incredible.”
The last major fundraiser in 1999 established the Murray Family Trust as a way to provide funds for the purpose of maintaining the house for David and Coleen. Though it did just that for nearly 20 years, the fund recently ran out of money at the beginning of the year.
With the house being such an important part of David’s everyday life, Sivel and David’s niece, Megan Pierce, set up a GoFundMe called “Keep David Home.” Launched on August 1, the campaign is looking to raise $50,000 to allow David to continue living in the house and be able to pay for the necessary upkeep. As of August 6, the page has raised over $1,000. Habitat for Humanity is also considering the house to receive a new roof, as the current one has remained on the house since 1987 and is leaking.
“I don’t think there are words to describe the feeling that I have,” said David of the support he and his family have received over the years. “These people just gravitated toward my family and it’s overwhelming. Sometimes when I’m thinking about it, my eyes water and I tear up a little. It makes you feel warm inside and fuzzy, almost like it’s a giant, big hug. I wish I could just say one magical word to describe the feeling, because there’s nothing. I just can’t describe it. It’s incredible.”
For more information on David and to donate to the campaign, visit gofundme.com/davidmurrayhome
Brendan Sample can be reached at firstname.lastname@example.org