MS Ambassador Gains Perspective on Slowing Down to Live More Meaningfully

Join the free MS community!

Connect with thousands of members and find support through daily live chats, curated resources, and one-to-one messaging.

Sign up

Fast facts

• Location: Northern Virginia
• Name and username on Bezzy: Leisa (or ChucklesNapoleon on Bezzy MS)
• Year diagnosed: 2019
• Describe yourself in 3 words: ambitious, conscientious, soft-spoken
• Go-to healthy snack: Blueberries are my healthy snack, and Tostitos are my guilty pleasure snack.
• Your happy place: Sewing and singing in a choir
• Best piece of advice you’ve received: When I was little, my aunt would say, “Oh Leisa honey, just keep on living.”
• Person who inspires you the most: My mom. She was in a wheelchair and never complained or made people feel sorry for her. She got up every day and did what she needed to do. She was just an amazing person.
• Song that makes you smile: Marc Anthony’s “Vivir Mi Vida”
• Pets: My Yorkies, Chuckles Napoleon and Giggles Hamilton
• Celebrity you would cast to play you in a movie: Regina King

Q&A with Leisa (or ChucklesNapoleon on Bezzy MS)

Tell us about your diagnosis. When were you diagnosed and what were your first symptoms?

I got my official diagnosis in March 2019. My diagnosis story is an interesting one because everything that I’ve read since about MS confirms the weird things that I was experiencing.

The straw that broke the camel’s back happened in May 2018 when I fell in D.C. while I was out one evening walking with a friend. I was wearing flat shoes, and I just wiped out. I didn’t catch myself with my hands because it happened so fast. I was bleeding and my rib cage area took the brunt of my fall.

That was on a Saturday, and by that Monday I could hardly move. I went to the emergency room because I thought I broke my rib cage. The healthcare professionals started pushing on my body and I just screamed, but it wasn’t a broken rib cage.

I analyzed it later on. I think that it was the MS hug that comes to fruition when your body just goes into shock mode. I couldn’t really move my head, my rib cage hurt, and nothing was helping me.

At the end of that week, I went to my general practitioner and she ordered an MRI on my thoracic spine. She also sent me to physical therapy (PT) in May, which I went to until October. I was feeling a little bit better, but I had gone back to work as a school psychologist and had to lift a lot of things for my job. I wound up hurting myself again and went back to the PT.

The PT had me doing all these different movements. I know that the brain is contralateral and noticed he was asking me to turn my head in certain ways. When I asked him what he was thinking, he said, “I don’t really know what’s going on, but you are definitely weaker on one side, so I’m going to tell your doctor to order an MRI of your cervical spine.”

When I got the paperwork from my doctor it just said, “Please see neurologist.” Even though I read the radiology report, I almost see it as divine providence that my brain didn’t process the words on the page that said “demyelination.”

This was November, and I couldn’t get in to see a neurologist until January. When he asked me what brought me there I said, “Hey, I have two left feet, I always fall. I think it’s my shoes.” But then I said, “The day I had my worst fall, I was wearing flats, so I don’t really know. My friend thinks maybe I have foot drop.” After the medical exam, he said, “Well, you don’t have foot drop,” and then told me he was going to order an MRI on my brain.

When I returned for the follow-up, the doctor said, “Well, you have all the signs of MS.” He said that they don’t really know why people get it, but that is what I had. He also said the evidence was there, but we had to do one more test, a spinal tap, to be sure.

I did the spinal tap, which is the worst. I would rather have a root canal, which I have had. Although they say not to start Googling your symptoms, I did. It was during that period of time that I found Dr. Aaron Boster on YouTube and the podcast FUMS by Bezzy MS guide Kathy Reagan Young. Finally, some of the symptoms I was experiencing started to make more sense.

What were some of the symptoms that started making more sense?

It was the bladder stuff that got me because I’ve had some issues with my bladder. After the diagnosis, all the other things that go along with MS like the numbness and tingling became clearer to me. Previously, I attributed these issues to being dehydrated and thought I just needed to drink more water.

There was also the tripping and falling. I used to love to work out, but it had gotten to the point where I couldn’t exercise without feeling absolutely sick and horrible. I learned from listening to Dr. Boster that when you get your core body temperature up, it can bring on all the symptoms. I can exercise, but I have to exercise differently than I did before.

What was a typical day in your life like when you were first diagnosed versus now?

In 2019 when I got the diagnosis, I had just left a job as a school psychologist in one school district and took a job in another school district that was a little over an hour drive away.

At the time, I thought I would do the drive, but I ended up selling my house and moving to this new area. I hated living there, and after about 11 months, I came back to the area where I currently live. I was still making the drive, but I wanted to do something different and open my own office.

In 2020, COVID happened, and it was really a blessing in disguise for me. Even though I thought it was horrible that kids weren’t going to be in school, it was the perfect time for me to get my license for private practice. I was always license-eligible, but I never had that concentrated time to study. With these cognitive issues going on, I realized I needed to study differently. I passed the exam in June 2021.

Because of my symptoms and disability, I had to resign from my job, and fortunately, I qualified for disability.

When I was working in the schools, the fatigue was outrageous for me. The job was very stressful. I think all of that stress just exacerbated symptoms that I didn’t even know were MS related.

Now I work part-time in private practice, the very thing I absolutely enjoy and went to school for. I still work mostly with kids.

A typical day starts with me waking up around 7:30 a.m. and taking my two dogs out. I don’t have that rush in the morning to try to get out the door and make it to school at a certain time. My earliest client is on Thursdays at 10 a.m. and sometimes I have a Monday at 10 a.m., but I just work 3 days a week. I set my own schedule, and I love it.

What has been the most challenging part of living with MS?

I’ve always had some difficulty with organization, but then my difficulty with organization skyrocketed. Decision-making became so hard — things like not being able to decide where I was going to put something, losing things, not knowing where to get started, and just being so confused. That’s enough to make you depressed.

It was all the cognitive stuff that went along with MS that’s really invisible to people. I think that if I weren’t in the field that I was in, I wouldn’t even believe it was true. But it is true, and it is neurological. It’s happening in real-time to my brain.

Is there anything you wish your family and friends understood about your condition?

The one thing I always emphasize is that it’s unpredictable. Sometimes you wake up and you feel great, and then sometimes you wake up and feel like you can’t move.

What helps you get through those bad days?

Bad days are just bad days. The one thing I’ve learned with MS is to just let myself be in that bad day.

Maybe I need to rest, read a good book, or listen to some soft music. Maybe I just need to sleep. Those days I just need to let myself be OK with not being OK and not try to shake myself out of it.

If you just let yourself rest or let yourself feel that sadness or isolation a few hours later, after you had a nap, you might feel OK. I also journal and love to sew.

What would you tell someone who was just diagnosed?

You’re going to have this flood of emotions and think, “What does my future look like? What if this happens? What if that happens?” All you can do is just take 1 day at a time. Try your best not to dwell on all the negative things that could potentially happen.

Do what you can now to work with what you have. Don’t worry about the loss of mobility. If you can take a walk and you feel pretty good, then take a walk.

Do your best not to waste a lot of emotional energy trying to get people to understand. They aren’t going to understand because they aren’t in your shoes.

The thing that saved me was reading everything related to MS that I could, especially in the beginning.

What resources have been helpful for you?

The magazine that comes from the National MS Society is a really good one. I also recommend the FUMS podcast, and of course, Healthline.

I love the Bezzy platform. It saved me. I didn’t have anyone to talk with about MS, and I would just go on the site and start talking with people. I’d see people sharing different things and I’d think, “It’s going to be OK.”

It’s the support group that I didn’t think I needed. It’s a really encouraging environment. I’m able to encourage others and they encourage me which is really good because I don’t have to worry my friends with what I’m thinking or feeling.

It was really cool when Kathy reached out to me to become an ambassador because I was listening to her FUMS podcast for the longest time, and I was commenting on it. Then I realized she was the same Kathy from the podcast! Her independence and doing her own thing with starting the podcast are so encouraging and inspiring.

What surprised you most on this journey?

I know it sounds crazy, but in a way, I feel like MS saved my life because I was struggling healthwise. I feel like MS made me face the music that I really had to do something different and that I wasn’t going to be able to keep living the way I was living.

It also made me think about the things in my life that are most significant instead of just my career. Family and relationships are important, and that’s the stuff that’s most meaningful. MS slowed me down, and I’m so thankful.

If you or someone you know is interested in being featured in Faces of Bezzy, reach out to our editorial team by emailing editorial@bezzy.com with the condition you live with and a couple of sentences about your journey.