After a string of conversations via WhatsApp, finally I got a perfect timing to talk to Susan Njogu Eling together with her husband Phillip Eling. She is miles away in Adelaide, Australia and the time difference had been a constant barrier. It was just before they headed out for their anniversary dinner, but she promised she’d get back to me.
Susan is a 27-year-old native Kenyan born in Matuiku village, Elburgon sub-location, Nakuru county. She is the last-born in a family of seven. She attended a local school known as St Peter’s Girls then joined high school at Bright Light Girls and completed in 2012. It was in 2015 that Susan travelled abroad as an international student to study for a diploma in disability at Equals International School.
“My childhood was not easy and nothing came to us on a silver platter. This prompted me to work extra hard to get to where I am today. My parents, staunch Sabbath keepers, had always been supportive and made me believe I could be anything I wanted to be. Nothing was handed to me and that made me a better person. I was always drawn to helping people, especially those in need. I always saw myself as a person who can bring change to the society, however small the contribution may be,” says Susan.
In 2017, Phillip worked for a service provider company in the support field for the disabled as a customer engagement officer. It so happened that he was part of a board conducting interviews, and Susan was an interviewee. That marked the beginning of their journey.
Phillip was born 30 years ago in Australia. He was a special child since infancy. He was born with muscular myopathy, a progressive muscle weakness that leads to loss of muscle mass. This is as a result of abnormal gene mutation. Phillip, who is the middle child out of three siblings, spent most of his childhood in and out of hospital because of his condition. “My parents and siblings were supportive both physically and mentally, and that really helped me navigate through my condition,” he says.
For 27 years, Phillip remained inconclusively undiagnosed, but in 2015 he had some rather intensive investigative genetic testing, which was released in 2016, and he was diagnosed with Bethlem myopathy, a rare form of muscular dystrophy – a defect in the collagen A1G. The condition affects the skeletal muscles and causes breathing difficulties.
“It was the first severe case to be reported in this part of the world. Basically I have very loose joints and that means I have to be very cautious in what I do and what I expose myself to. A simple cold could escalate to something life threatening. Due to this condition, I have limited movements on my arms, so I often need assistance in doing even the most basic of things such as hygiene or feeding myself. My wife is always there to help. To me, it is not why she does it, but how she does it. It’s so effortless and with passion. I never feel like I am asking for too much from her. That makes her a rare gem,” he elucidates.
For a condition as Phillip’s, emotional support is important to cope every day. The condition is not curable, but there are numerous ways to manage it. As much as it affects his routine, Phillip remains positive and never lets his situation run his life.
Negativity
“When I first saw Susan, I was struck by her beauty. Also, she was smart and very soft spoken. I mustered courage and asked for her phone number, and she agreed to go out on a date with me,” he narrates. After dating for a few months, in mid-2017, Phillip proposed. Fortunately, once they broke the news to their parents, they were all overjoyed. The challenge was dealing with social media and also some friends. “The period from the engagement to the wedding was challenging to us. We expected backlash from intolerant people. There were questions of why I would marry a disabled man.
‘We know you wouldn’t marry a disabled African man. You are probably marrying a disabled white man because you want to get papers to settle in the country, or he’s rich’, were some of the comments I had to deal with,” remembers Susan. “It got really bad that some people claimed that Susan would probably murder me once she became an Australian citizen and take all my money. I recall one comment with laughter emojis that read; ‘Is it really that bad in Africa’,” adds Phillip.
Susan and Phillip would soldier on and get married in January 2018, but they were never quite off the hook. “There were certain instances while at work, some colleagues would make funny jokes or comments like ‘I heard you got yourself a handsome man’, and I would say, ‘Yes, so what about it?’, to which they would have nothing to say. But I could tell the nuances. They were not genuine remarks,” regrets Susan. They explain that comments by trolls online and offline can be very hurtful, but they tried to learn how to deal with it all. “People are not aware that every time you judge someone you reveal a part of yourself that needs healing,” she adds.
So far, their married life has been blissful. Over time, they have grown thick-skinned from facing all the trolls and negativity from the society. “My husband is like any other man. He provides and tends to the household needs just like any other man. I don’t see anything different. People forget that if you are okay and your husband got into an accident and lost both his limbs, would you love him any less or would you take care of him? Nothing changes. Phillip is the love of my life and I am proud to be his wife,” asserts Susan.
Phillip remembers when he was once asked ‘Why did God make you disabled?’, and his response was, ‘So that the miracles of God can be manifested through me for the world to see’. Indeed, he says, since marrying the love of his life, those miracles have been shown to the world. Millions of people have been and continue to be inspired by the power of true love. Being believers, they are thankful and give all the glory to God for their marriage and success in life.
- “When people heard that Phillip and I were a couple, they thought it was very unusual and that we wouldn’t last long, but two years later, we are still going strong. We have a unique connection and better yet, we genuinely love each other and are looking after each other. As time goes by, we look forward to starting a family and showing people that true love does exist,” concludes Susan.
