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World MS Day - On pain and invisible scars

marion locke has multiple sclerosis and wants to raise awareness for the disease

Marion Locke was diagnosed with multiple sclerosis in 2015. Pic: Supplied

Marion Locke sits in the restaurant, talking passionately about healing through writing and the strength she draws from her family. From the outside, she looks vibrant and healthy. In truth, she lives in constant pain – her diagnosis four years ago was a degenerative one, with a bleak prognosis. She has multiple sclerosis.

“I’m in pain. I’m in pain all the time. My body is just shouting in pain,” she explains, and begins to roll up her sleeve, revealing a large bruise on her upper arm. The disease cannot be cured, but can be controlled with a variety of medications, including routine injections of steroids. “It’s where I have my son inject me. This is from two weeks ago and it still burns. I have marks and spots like this all over my body.”

Started in 2009, World MS Day is a global initiative to raise awareness about the disease, which is classified as a degenerative autoimmune disease affecting the brain, the spinal cord and the nerves. The exact cause is not known, but women are at a higher risk of developing it. The theme for this year’s World MS Day is #MyInvisibleMS, because those who are diagnosed often appear healthy to those around them. At least at first.

When someone has multiple sclerosis, their body’s own immune system turns on itself. It begins attacking the myelin sheaths that layer the nerves and protect them, leading to disruptions in the electrical impulses that travel down those nerves. The symptoms vary greatly between people, but can include fatigue, problems walking or balancing, coordination problems, numbness or tingling, muscle spasms and stiffness, paralysis and visual disturbances.

In Marion’s case, it all started with a painful ear and a headache.

It was July 17, 2015, and it was a Friday. “I had been sick that whole week, starting on the Monday. I had a pain behind my left ear and a small bump, and I told my husband that I might have been bitten by a spider.” She made an appointment with her family doctor, who told her that she had an inflamed nerve and sent her home with antibiotics.

By Friday, she could barely stand the pain that had spread to her head, and she struggled to keep her head off the desk at work. “My colleague came to me and asked what was wrong and I told her that I thought I might be dying. Literally.”

She phoned her husband to fetch her, knowing that she was in no condition to drive. Their route home took them past a hospital, and on impulse she told him to take her to the emergency room. “I think that gave him a fright, because I had already called him to come fetch me and I never ask for help. But I just had this deep-seated almost overwhelming feeling that something was very wrong.”

Marion was admitted to hospital and underwent a series of diagnostic tests, from nerve testing, a lumbar puncture and an MRI. When the brain scans came back, the image was covered in white patches, the tell-tale sign of the lesions or plaque that forms in the brains of those with the disease. She was handed her diagnosis – multiple sclerosis.

“I had never heard of it before but my first thought was that at least I didn’t have brain cancer!” It was only later, while lying in her hospital bed, that she read up about the condition and realised the implications. “I knew it would eventually affect my mobility and my ability to help myself, and the complications like pneumonia could be fatal.”

The next day, she told her husband what she had learnt, and gave him the option to leave with the children before she got any worse. Looking back on that today, it is an option that she is glad he refused. After her diagnosis she withdrew into her own world and her own pain, eventually finding healing in the writing of a book, titled ‘My heart soars, tho’ my body hurts!’ Published in 2019, she hopes her words can inspire others.

the ribbon for ms and ms awareness is orange

Today, Marion is a volunteer at the MS Society of South Africa, and does her part to raise awareness about this “invisible disease”. On World MS Day, which is observed on May 30 annually, she helped organise an event for others with the disease, many who are wheelchair-bound and accompanied by caregivers, unable to look after themselves. Many do not have medical aid, and others have been abandoned by their families.

“I’m very lucky, because my husband is amazing and my children are very supportive.” She says it is important for not only the person who receives the diagnosis to work through the complex emotions that it brings, but also for the family to process the news. “It’s not just my disease – it’s his too, and the kids''.” She has two sons and a daughter. “They all have to live with the diagnosis. Because there are days when I feel almost normal, but other days when I feel like I’ve been run over by a bus.”

She has, however, decided to use her journey to help others. She realises how fortunate she is, despite the diagnosis. “One night, my son was about to inject me, and he stopped and asked me if I realised how lucky I am. I had no idea what to say, until he told me that there must be so many people who can’t afford to get the right diagnosis, and if they do can’t afford the medication to help control their condition.”

At the age of 47, Marion has added author and activist to her title, and works alongside the MS Society, helping with awareness for a disease she believes does not get enough attention. Instead of the diagnosis being the end of her life, she says it was the beginning. But that doesn’t mean it is always easy.

“It’s frustrating, because people say I don’t look sick. I want to let people know that just because you can’t see the scars does not mean they’re not there.” Her disease may be invisible, but the effects are very real.

On this day, a number of celebrities took to social media to do their part to raise awareness and increase the visibility of the disease. US actress Selma Blair posted to Instagram, writing “I am disabled. I fall sometimes. I drop things. My memory is foggy. And my left side is like asking for directions from a broken GPS. But we are doing it.” She wrote that she hopes her post can inspire hope in others. And in herself.

Award-winning American author Joan Didion has dealt with her diagnosis through writing, much the same way that Marion did. Rachel Miner, best known for his role in Supernatural, has also spoken about having the disease and how it affects his daily functioning, while son of British rocker Ozzy Osbourne, Jack, revealed in 2012 that he was diagnosed with MS.

World MS Day is an opportunity for those who have the disease to rally together, sharing their stories of hardships and of hope. “I’m dying – I know that. But we all die one day. I’m going to die, but how I die is up to me,” she explains, and shrugs. “If I can just tell one person that they can still live a good life, then I know I have done my part.”

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