“With every part of me that becomes less than what it used to be, a different part of me usually becomes more than what it used to be. In fact, maybe that’s the point, but it doesn’t make it any less difficult.”
Shannon (Sna2164) is a wife, mother, animal lover and writer, living in southern California. She was officially diagnosed with multiple sclerosis at 27 years old, with three children under the age of four. In a recent interview, Shannon told us about her diagnosis, starting a blog and her journey to peace and contentment with MS.
Check out her story about exposing her truth and helping others who feel misunderstood.
Searching for answers
While others can go through years of suffering while waiting for a diagnosis, Shannon’s experience was comparatively quick. It started six months after her youngest daughter was born. She began having terrible pain in her right eye, combined with temporary loss of vision in that same eye anytime she went from darkness to light or vice versa. In her quest for an explanation and solution, she used eye glasses she didn’t need and took antibiotics for sinus infections she didn’t have.
A few months into trying to solve the mystery of her eye pain, she rapidly began experiencing other symptoms including numbness, tingling, and Lhermitte’s sign (a burst of pain that runs down the back, arms and legs when the neck moves). As if slowly going numb from the feet up by inches every day wasn’t enough to alert her primary care doctor that she needed a specialist, one night she got up out of bed in the middle of the night to go to the bathroom and hit the floor. She tried again, and hit the floor again. This temporary paralysis subsided within minutes, but it alarmed her primary care physician enough to insist she see a neurologist right away.
Shannon saw a neurologist for the first time in August 2004 and was officially diagnosed with multiple sclerosis (MS) in October 2004 after an MRI of her brain and cervical spine revealed multiple lesions. She was 27 with three small children and had just been diagnosed with a condition she knew nothing about.
Finding strength through words
Starting her blog, diaryofadisease in 2015 was both a terrifying and freeing decision that Shannon says was the best decision she ever made. She’d been writing about her experience living with disease over the years and wanted to find a way to share it with others.
“I asked myself if creating a blog was really something I wanted to do, would I have regrets about not doing it, simply out of fear, in twenty years? And the answer was yes, so I forced myself to do it despite my long list of reasons I felt afraid and inadequate.”
Many months later, her dream became a reality. While there were many times she wanted to give up, her son stepped in and helped complete her vision for the site.
“He also took the photo on the home page which was anything but candid. I told him I felt like I was standing still in a world that was passing me by, and since he already was quite the photographer, he knew just how to capture my feelings in this photo that speaks volumes.”
When she released her blog, even those close to her knew very little about her struggles living with disease because it was, and still is, very challenging to talk about. Despite her fears, she knew it was important to be honest about her health and experience with MS. She also felt like there wasn’t enough information online that spoke to the heart about living with disease.
“There are volumes of information about MS and disease that speak to the brain about the scientific ‘ins and outs’, but nothing on how darn hard it is to suffer the symptoms. Everyone needs validation for their feelings, everyone needs a ‘Me too!’ moment.”
Although Shannon started her “diary of a disease” as a way to cope, she hopes that it’ll help others who feel equally as lost and misunderstood in their journey of disease.
“One of the greatest rewards is that in surrendering my pride and exposing my truth, my burden is much lighter, and the people who love me in my life have a means to really understand me in a way I could never communicate verbally.”
Adjusting to a new normal
Shannon’s new normal with MS looks and feels very different than what she thought normal meant before. As she moves forward, she’s learning that there are many definitions of normal and that it is okay to have limitations, to live against the norm, to change the way she does things, admit her weaknesses and slow down.
Shannon’s goal is acceptance and contentment. It isn’t always easy. Since living with MS means that each day can look different, the journey to acceptance and contentment needs to happen not once, but again and again. The principle she attempts to follow daily is:
“My value is in who I am and not in what I do, because I have spent too many years drowning in the ‘do better try harder’ mindset, and true peace isn’t found there, and I think that’s what most of us long for.”
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