Sometimes life hands you lemons, and sometimes you’re the bystander when a semi-truck carrying two tons of lemons crashes, burying you in yellow fruit. Such is life when you live with a progressive, non-curable disease, like I do. I was diagnosed with secondary progressive multiple sclerosis (MS) — “the bad kind” — a few years ago. As scary as that is, I am determined to take this two-ton pile of lemons and make a batch of lemonade that I hope to serve to the whole world.
My experience with MS may be relatable to a lot of people living with the disease. I was (and am!) a busy mom raising two awesome kids, with a tiny zoo of pets in my home, juggling family life with my passion. For me, that’s art and the advocacy I invest behind each piece I create. When I think of my MS, I don’t think of what I can’t do – I think of what I can do, and that is paint. Art isn’t just something you can hang in your living room; art can help.
I have faced a lot of hurdles in my life, including a cancer diagnosis just two years before my MS diagnosis. Yet, I’ve always kept going, which is why I didn’t pay attention to the pain I was experiencing in my hands and feet. I was working a lot and disregarded the symptoms. It wasn’t until half my tongue went numb that I had my “uh oh” moment, which brought me to the hospital and led to my MS diagnosis. Since that time, my symptoms have evolved, and, in an average day, my joints ache, my hands and feet tingle and it feels like red ants are biting my gums and eyeballs. I often feel foggy, and my memory is fuzzy. My eyesight is a mess. Not surprisingly, these symptoms have made a big impact on my entire life – including my painting.
The thing is, I don’t stop. When I received my MS diagnosis, I thought, “Here is a whole new battle to conquer.” I don’t throw myself a pity party – instead I see MS as a gift. I know it sounds ridiculous, but it allows me to savor every moment instead of taking time for granted. It also energizes me to work with others in the MS community to raise awareness and to spread a message of hope – because there is always hope.
That’s why I am sharing my MS experience, including taking part in a documentary called “Seeing MS from the Inside Out.” The film paired artists, like me, with others in the MS community across the world to bring their experiences to life through art.
I also want to encourage others in the MS community to share their experiences because I know I’m not the only one who can say, “MS is on my mind when…” and complete that sentence with a thousand examples and experiences.
I’ve chosen to make lemonade from a truckload of lemons – to live my life with positivity, and I want to inspire others living with MS to do the same and to be resilient. For me, it helps to look for the humor in life. Because if you stop to think about it sometimes, life can be too tragic if you don’t laugh about it!
Lydia Emily is the creative director for MS On My Mind, an initiative sponsored by EMD Serono, created to highlight the impact MS has on patients and their caregivers. She is being compensated by EMD Serono for her time.
As part of the company’s #MSInsideOut campaign, the Seeing MS from the Inside Out documentary was developed with Shift.ms as executive producers.
My name is Lydia Emily and I am an artist, activist, cancer-survivor and currently living with secondary progressive multiple sclerosis (MS). My MS experience serves as a catalyst not only for my art, but also for my advocacy work on behalf of the MS community. I think of my MS as a gift, allowing me to savor every moment of life, and I hope to inspire other patients to look for the humor in life and keep pushing forward.
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