Susan Schaum has been living with Multiple Sclerosis for over a decade but she is a powerhouse in her fight and encourages others to advocate for their best lives!
South Africa (30 May 2023) – As we near the end of May, it means that Multiple Sclerosis (MS) Awareness Month is coming to an end too but not our plans to keep raising awareness! We shared several stories this month on behalf of MS South Africa in the hope of raising awareness about the disease and adding South African voices to the conversation.
We worked closely with MS South Africa to share more information about the disease as well as meet three of their community members who have been living with the disease. Over the month, we met Christelle, Michelle and finally Tina.
By sharing their stories, so many more lives were changed. Several people reached out to give thanks for raising awareness. One reader shared that it was the first time she had read South African stories and it changed everything for her!
“I’d like to thank you for your series on Multiple Sclerosis. Not enough awareness surrounds the disease and it’s great that Good Things Guy has taken the initiative to write about real life MS Warriors and their challenges.
Since my diagnosis, your articles are the first I’ve ever read from South Africa about South Africans – so thank you! Even if we raise awareness one article at a time, it makes a difference! Thank you, thank you!” – Anonymous
And then, we got an email from Susan Schaum who shared her story with us. We asked if she would like to add her voice to the conversation online and after some thought, she agreed.
So South Africa, meet Susan Schaum, another MS Warrior showing that the disease isn’t a “cookie cutter” one and that while every person has a unique journey, they are not alone! She encourages MS Warriors, newly diagnosed and long-term, to advocate for their best lives.
Susan Schaum
My MS journey began late in 2012. While driving to work one morning, the vision in my right eye was blurry. Initially, I thought my sunglasses must be dirty and cleaned them thoroughly, but after arriving at the office, I realised that wasn’t the problem. When it persisted, I convinced myself that I needed new mascara and bought a new one. When that didn’t solve the problem, I set up an appointment with an optometrist close to work, who thought I was suffering from a dry eye and gave me some moisturizing eye drops.
The blurriness got worse throughout the week and after trying a few other suggestions, I decided to try a different optometrist, but opted for one that consulted alongside an Ophthalmologist. I thought it might be a strange infection that I’d get special drops for. It never occurred to me that my appointment would end with being told that I needed to get to a Neurologist and an urgent appointment being made on my behalf. My blurry vision was due to Optic Neuritis.
The following morning, I went through for the Neurologist appointment with my sister for support and was sent for an MRI and lumbar puncture. The results came back, and I was diagnosed with an “isolated episode of MS” and admitted to the hospital for treatment. All I knew about MS at the time was what I’d seen in magazines or in documentaries and included people in wheelchairs and ultimately death. It was completely surreal and utterly overwhelming.
After 5 days of an IV treatment (that had me bouncing off the walls), my vision remained blurry and I was not getting much information from the Neurologist, except for a pamphlet on MS. I was frustrated and despondent. A few weeks later I went back for my check-up with no improvement to my vision.
Adamant that I was going to be proactive, I went in with notes and specifically asked the doctor if more treatment would be an option and if there were any tests that could be done to determine the damage or function of the optic nerve itself. I was told “no” to both my questions and that I must just be patient as it might still improve or learn to adjust to my altered vision.
I was 32 years old at the time. I listened to my gut and went for a second opinion, this time to a highly reputed Neurologist of my choosing. At the first consultation, she said that she wanted to have a Visual Evoked Potentials test done on my eyes. This assesses the signals from your visual pathways of the optic nerve. This test was readily available after all! Immediately after this test, I was admitted to the hospital, and commenced with a round of Solumedrol IV treatment. The side effects were vastly different to the previous IV treatment. On the second day of this treatment, my vision started to become clear and most importantly, I had learnt a golden lesson in my MS journey – trust your gut in being proactive!
My new Neurologist was one of the most respected in the country and I am eternally grateful for the tremendous role that she has played in my health both from an MS point of view and when I experienced a serious unrelated neurological event a few years ago. From our very first meeting, she listened, explained, shared her vast knowledge, and cared. She was informative, optimistic, but always realistic. In addition, the team in her office treated my family and I with incredible respect, efficacy, and reassurance.
Unfortunately, the optic neuritis moved to my left eye just a few months after the initial event, leading to the full diagnosis of MS and me commencing with treatment early in 2013. Under the guidance of my Neurologist, discussing my concerns, personal circumstances, and after doing some unbiased research, I selected Copaxone daily injections.
I have had two relapses in the past 10 years whilst on Copaxone and both were treated effectively with Solumedrol IV. I recently decided to change my MS treatment to a daily tablet rather, as new medications are now available that are more effective, and I got tired of the site reactions from injecting. It’s early days on this treatment, but I’m optimistic that it will be a positive experience and most importantly that it will prevent my MS from progressing.
If I look back on the initial stages of diagnosis and the shock of it, I wish I could tell myself that it is going to be ok. That MS is not a cookie-cutter diagnosis and that what I’d been exposed to in the media was not a “one-size fits all” scenario. When I was first diagnosed, I was shaken to my core and left absolutely reeling. I recall being at a braai later that year and being asked how long I had before I’d be in a wheelchair. I’d arrive at work meetings, only to discover that my boss had told the client about my diagnosis, leading to random questions from people I wasn’t close to, without any warning. I was often caught completely off-guard by blunt questions or comments, very often when I least expected them. It was an unpredictable rollercoaster that made me want to retreat, even as an extrovert.
Fortunately, my formidable support team of family members, friends, and my husband, didn’t let that happen. The reality was that what I’d seen in the media was the same as what most other people know about it and had led to insensitive questions or behaviour. The portrayal is such a limited view of the broader reality.
Yes, MS can be terrifying, cruel, and limiting, but there is also a whole spectrum to it that is seldom publicised and needs more awareness. For example, there are different types of MS, it affects women AND men and while it cannot be cured (yet) the objective of treatment is to prevent it from progressing and to reduce relapses. There is a huge amount of research going into MS, new treatments are being launched and has advanced tremendously just in the past decade alone.
Since my initial diagnosis, I have been able to continue working, have lived overseas, gotten married, travelled and I live a full and happy life. I am determined to be proactive to prevent it from progressing. I know that my attitude plays a role in it and that I need to be an advocate for my health. This doesn’t only affect me, but my loved ones as well and I will not sit back and wait for it to shout for my attention, for their sakes if not my own.
Does it suck? Absolutely! Do I have days that I am miserable, unwell and grumpy? Of course! I allow myself to have pity party days sometimes, but I do not allow myself to wallow for days or weeks on end. I am not a victim. I am surrounded by wonderful family and friends; I live in a beautiful country with excellent Neurologists and access to top pharmaceuticals. I might have MS, but it does not have me.
My life has changed since before my diagnosis and my capacity for certain things has changed, but I doubt anyone is the same as they were 10 years ago. We all evolve. Change is essential to growth. I know men and women with MS, some with RRMS like mine and others with far more progressive MS. All of them are still walking (some assisted) and still working, living busy and full lives. They prioritise their medical care because, like me, they know that idleness is like a “green light” for the progression of this disease.
My advice to anyone just being diagnosed is to be proactive: don’t wait for treatment, find a Neurologist that specialises in MS, make notes to take to appointments, and ask the relevant questions. Be diligent about going for your required MRIs, listen to your body and if you get a new persistent symptom, see your Neurologist.
Don’t be overwhelmed with negative media or Google – rather find an unbiased website that isn’t affiliated to one pharmaceutical brand for clear references and advice. Most of all, don’t feel diminished by the diagnosis. All humans have baggage in one form or another, MS patients just know what ours is and as the saying goes “strength is what we gain from the madness we survive”.
Due to unforeseen circumstances, I have had to change Neurologists recently. It has been a reminder that no one is shielded from a change in their health at any given time and that’s more reason to focus on the good and to take one day at a time.
Change is never easy, but I am so grateful for the solid foundation and support that my hero, Neurologist gave me in the 10 years that she worked on my case. I am also very thankful that we have top-notch neurologists in South Africa that I have been able to access another expert that specialises in MS.
I think people underestimate our healthcare system and professionals tremendously. I know of people living in first-world countries that would be happy to have the level of MS treatment we do.
I’m optimistic that in the future, a cure will be found and I’m certain that treatment options will continue to improve in efficacy and accessibility for those of us living with this disease.
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