Local resident Chris Stephenson is an amazing woman, and despite her recent multiple sclerosis diagnosis, she remains cheerful with a smile that lights up a room.
Stephenson is Sebastian Daily’s Citizen of the Month and will receive a $25 gift certificate courtesy of Pareidolia Brewing Company and a $50 gift certificate to Sebastian Saltwater Restaurant & Marina from Sebastian Daily.
In April 2021, Stephenson was an active runner, running almost daily during the pandemic. It wasn’t long after that she started to notice a change.
“I noticed the vision in my right eye blurring and a tingling sensation in my right and occasionally left leg. I mentioned this to my primary care provider and optometrist at my annual checkups. The former prescribed antidepressants believing the stress of a contract was the culprit – the latter dismissed it as my eye exam was regular,” Stephenson told Sebastian Daily.
Roll forward to the summer of 2021, when travel began to open up, she started to get on the road again for work. She was formally the Academic Technology Director at St. Edward’s School and left that position in 2018 to start her own educational consultancy company, Atlantic Isle Consulting.
“My father had just passed in 2017. So traveling to Ireland to help my Mum and support her and my sister was necessary. So the diagnosis of stress was plausible – however, by that stage, both legs now had pins and needles and what the doctor described as bilateral neuropathy, which is constant to this day. I knew that something other than stress was definitely possible. So I engaged a leg and foot doctor, and they ordered a test on my leg nerves through a neurologist. That test revealed normal nerve function – even though I still felt the constant burning and tingling of neuropathy,” said Stephenson.
During that test in June 2021, she met who would become her neurologist and the team that would become a lifeline during the diagnosis pathway.
When travel opened back up, she traveled to Austin for a conference. She was hospitalized with many symptoms, including soreness in her back, fluctuation in temperature, brain fog, and a general feeling of unwell.
“In addition, my blood pressure would soar for no apparent reason. While I am prone to higher BP, thanks to family genetics, I was hypertensive, and it took most of the night to get my blood pressure lowered in the hospital,” said she.
When released, she returned to Florida and saw her primary care provider. Again, suspecting stress from a contract she had accepted in educational sales during Covid, she was again prescribed new antidepressants.
The next three months were hell, she explains.
“My colleague contacted me to say he had contracted Covid. A few days later, despite vaccination in March 2021, I tested positive and was ill for ten days, including one night in Sebastian ER. From that point, of course, all the symptoms were Covid related, and I only started feeling more like myself by October 2021. After that, however, I was very far from myself. Constant neuropathy in both legs was now creeping into both hands and the terrifying ‘MS Hug’ (which is like someone is tightening a belt around your ribcage). Constant fatigue. Fear. Doubt. All things that were very much not in my character,” Stephenson said.
In early 2022, she saw her primary care physician again with a continuing lower back ache that was not going away. This time the decision was to order an MRI, where the words “Multiple Sclerosis (MS)” was used for the first time in the medical setting.
“First, however, I had to undergo several weeks of physical therapy to qualify for insurance. That is when I met the most impressive physical therapist, who immediately listened to everything and started to give me exercises to relieve some of the pain and work on my walking, which was becoming increasingly difficult. As we talked, I spoke about working towards getting MRIs to rule out MS. She called my primary care physician and pushed me to have these tests performed ASAP. This physical therapist also shared that they had a friend from med school diagnosed in her 20s and that we could talk. Unfortunately, at this stage, I was also waiting in a long line to see the neurologist from my primary care physician referral – because even though I had been referred back in 2021 for the leg nerve test, I was treated as a new patient,” she said.
The scans were ordered for mid-May 2022.
About two weeks before the scans, her mother in Ireland suddenly passed away. She flew to Ireland, and her condition worsened as she left Ireland to return home; she knew she had to move forward to try and find answers.
The cervical spine, thorax, and brain MRIs were two days back to back. Stephenson said MRIs are not a fun procedure. They are loud, claustrophobic, and altogether uncomfortable. However, being somewhat tech savvy, she got her results rapidly online long before the dissemination with her primary care provider or neurologist.
“The first return was my brain, which was ‘unremarkable.’ If you want a description in a scan of your brain where MS is concerned, the word ‘unremarkable’ is good! This description means that there are minimal lesions. Lesions form when the protective myelin is destroyed around your nerves, causing damage and disruption to your central nervous system. At that stage, I hoped it was not MS…until the thorax and cervical spine MRIs returned,” Stephenson said.
Both scans had numerous active lesions.
On June 16th, 2022, about one year after the significant symptoms showed up, the neurology team diagnosed RRMS – Relapsing-Remitting Multiple Sclerosis.
“It had been a long road to this point. And by this stage, I had done so much reading and Googling my symptoms that I was not surprised. My husband, Colin, and I tackled what was next. Colin, a full-time software architect, also owns and operates the Smoked on the Water food truck, which he started in late 2019. We both love slinging good food for good people and, by this stage, were well known for terrific BBQ on The Treasure Coast,” she explained.
Stephenson said Colin took it well, and he knows this disease as his uncle Peter was a warrior, and Colin had spent many years fundraising in Northern Ireland for Action MS.
“We talk about everything – and after 23 years of marriage, we are pretty tough and can take the tough knocks and have been through a lot together. My parent’s cancer and dementia, extended absences, and house-building during a pandemic. But equal to the tough stuff in our marriage – we have had a lot of fun! When we first came to the United States in 2003, it was for a year! We never imagined that we would still be here nearly 20 years later. We’ve spent the majority of our married lives in the United States,” she said.
Stephenson started various treatments to help with the pain levels, and the neurology team placed her on a list to receive a disease-modifying therapy (DMT) later in the year. She had taken the first part of that treatment; the second stage will happen in late 2023.
“Every day is different with MS – and everybody with MS is unique, and their treatment and how they manage their disease is personal. There is a lot that you have to relearn about yourself. You have to break habits to help improve your quality of life. For example, I love to brew beer and love craft brews. I now have to limit alcohol but still brew with the Boil Over Brewers of Sebastian. I can no longer run – but I can elliptical on good days. There is a pain to manage daily – which I am currently doing without prescribed meds. But I have to accept that that may change, and I will have to explore other ways of managing pain daily. The key to living with MS is finding your individual pathway (which involves a lot of research, trial and error, communication, and advocating for yourself). And accepting that this is part of who you are – and not what defines who you are,” Stephenson told Sebastian Daily.
In the summer of 2022, she and Colin decided to hang up their BBQ aprons at Smoked on the Water. Colin worked on cleaning up and selling the truck all summer.
In September, Colin sat down with Chris and pitched a plan to convert Smoked on the Water into a charity to raise money for the MS Warriors of the Treasure Coast, and 100% of their profits went to the charity.
“We will continue to do this in 2023 – and then – well…the next chapter depends on the disease. My next MRI set in May will determine whether there are new lesions,” said Stephenson.
“Multiple sclerosis is a disease that impacts the brain, spinal cord, and optic nerves, which comprise the central nervous system and control everything we do. The exact cause of MS is unknown, but we know that something triggers the immune system to attack the CNS. The damage to myelin, the protective layer insulating wire-like nerve fibers, disrupts signals to and from the brain. This interruption of communication signals causes unpredictable symptoms such as numbness, tingling, mood changes, memory problems, pain, fatigue, blindness, and/or paralysis. Everyone’s experience with MS differs, and these losses may be temporary or long-lasting,” according to the National Multiple Sclerosis Society
You can nominate a Citizen of the Month by emailing firstname.lastname@example.org. All entries will be considered.