Hospice Resident Inspires Others by Sharing Incredible Legacy of Love
Those of us who are privileged to provide care and support as volunteer and paid staff members at Hospice of the Western Reserve are often inspired by the wisdom, strength and incredible dignity of our patients. It’s what keeps us coming back. It’s what makes hospice a calling, and not a job. It’s why most of us who work here are committed to supporting and spreading the mission of Hospice of the Western Reserve for life. Such is the case with Malik, a current resident of our David Simpson Hospice House on E. 185th Street.
Malik suffers from Duchenne Muscular Dystrophy. He is currently bedridden and on an assisted breathing machine. Members of his hospice care team have repeatedly expressed how honored they are to care for this incredible young man. Recently, they joined Malik for a very special 19th birthday celebration complete with cake, music and photos. In attendance were his twin sister, Malikah, his mother, other members of his family and friends. It was a day to remember.
Malik, who was born on Feb. 15, 1996, has endured a very difficult life, including moving in and out of foster homes most of his life. He lost two brothers to the same disease, but is fortunate enough to have a healthy twin sister, Malikah, who has helped care for him. As part of his legacy, Malik expressed a desire to share his story with others. The following words demonstrate that despite suffering beyond his years, his spirit is one of hope, and his outlook remains positive. All those who have met Malik agree that he is a truly good and loving person. We’re honored to share his story here. The following account was written three years ago, when Malik was 16.
The Story of Malik
I’m a 16-year-old-young man working with a great challenge. Like my two older brothers Byron and Paul I have been chosen to deal with Duchenne Muscular Dystrophy, a devastating genetic illness, which shows up as a weakness of the muscles when a boy is around five or six and quickly gets worse. As I am still learning, the disease is my enormous burden but, strangely, I am also coming to learn it is my blessing.
Why do I say that? I say that because I think the illness with which I struggle 24 hours a day has taught me about life, about the preciousness of all souls and about the healing wonder of love. I am still learning how God’s way can be mysterious and very difficult while remaining a path given to us so we can learn, grow and ripen as souls. That’s what I feel on a good day, maybe I should say in a good moment. On a day or a moment that are not so good, I am likely to be angry, scared, confused or in grief over how much I have lost and how difficult it is to bear the particular cross my older brothers and I have been chosen to bear.
During the most difficult years, both Malikah and I found a refuge from our situation in school. I spent more than eight years at Sunbeam School on Mount Overlook Avenue. On the basis of its standardized test results, Sunbeam has been rated as a “Great School.” During all those years, school was a positive place to escape from the troublesome situations.
Malikah was helpful in my learning to read and write. I am grateful to her for that as I am for so much more that she has given me.
My good experience at Sunbeam has been repeated in a good experience at Lincoln West High School, thanks in part to several health aides and teachers I particularly like and who have been extremely good to me.
I haven’t been at Lincoln nearly as long as I was at Sunbeam. At present, I get picked up at 7 a.m. and come back on the bus after 2.30 p.m. Lincoln has become home and is a community that has embraced and nourished me. It’s my clear understanding that they like me at Lincoln because I am nice and a good person.
Altogether I spend just about 40 hours a week at school and traveling across the Cuyahoga River to school. That is the equivalent in hours of a full-time job, so I think it’s obvious that school is a very important part of my life.
One positive foster home was on the West Side of Cleveland. That period lasted about a year and began in the late fall of 2010 and ended in the late fall of 2011. [My foster caregiver], a woman of less than 40 years of age who works as a nursing assistant, was a powerful blessing in Malikah’s and my life.
“[She was our] our second mom,” a title she earned. Malikah and I got whatever we needed from her. She is bright and works in the health care field so she was also able to open doors to other resources that benefited us. The experience of living with there for a year also led Malikah and me to begin coming out of the protective shells we had developed over the difficult years living elsewhere.
I have learned to speak up and ask for what I need. That alone has made things much better. I am also hard at work at forgiving those who have hurt me. I have made definite progress at doing that. I have made progress in so many ways. Yet, the big burden, my genetic illness, continues and has a tremendous impact on my life. Despite that, I try to stay positive and live well, one day at a time.