Satori is a Buddhist term meaning a brief moment of understanding, sudden enlightenment, or a deep insight that can happen anytime, whether in conversation, reading a book, watching a movie, meditating, or sitting under a tree. My moment came during a conversation with a doctor when I was reminded that children learn coping skills from their parents. Whether they’re five, ten, twenty, or forty, they’re watching us and how we cope, especially during challenging and unimaginable situations.  

My story began in 2007 when I was out walking on a beautiful summer day, two blocks from home. I noticed my right foot was out of sync with the left, but there was no pain, so I ignored it. A year went by, new symptoms appeared, and my walks around Bexley became shorter. It took me until June 2008 to realize something was seriously wrong when Rocky and I were hiking with friends in Hocking Hills, and both legs gave out on me.

I made an appointment with a recognized sports doctor who misdiagnosed me and sent me to physical therapy instead of a neurologist. My symptoms progressed, I could no longer run, and fatigue became a big issue. I spent the next ten months seeing doctors, getting tested, worrying, and dealing with the complexities and frustrations of the health care system. Finally, in April 2009, two years after my first symptoms appeared, I was diagnosed with primary-progressive multiple sclerosis (PPMS), the most extreme form. Most people with MS have relapsing-remitting (RRMS), where symptoms appear (relapse), followed by periods of remission. Fortunately, there are many FDA-approved treatments to help them from having relapses. PPMS, on the other hand, steadily progresses without any periods of remission. There were no disease-modifying drugs to slow down progression when I was diagnosed - not even one.

And so my new life began, and no one could fix it or make this disease disappear -  not even Rocky, who could fix everything. Sadness and fear invaded every cell of my being. Even three days at the Mayo Clinic brought no comfort when I was told the only thing I could do was go home and exercise. My parents used to say, “There’s always something positive you can take away or a lesson to be learned from any bad experience that comes your way.” But I could find nothing positive or meaningful about having MS. My symptoms progressed, and everything I read or heard about PPMS was downright depressing. For way too long, I felt as if every ounce of joy in my life would be gone forever, a very lonely feeling. Boy, was I wrong!

Overwhelmed with grief, I shared my feelings with an doctor and said how difficult it must be for my kids to see me struggle emotionally and physically. He asked me the same question my parents would have asked, “Can you find a purpose in having MS?” After emphatically responding “No,” we talked about neurologist and psychiatrist Viktor Frankl’s famous memoir, “Man’s Search For Meaning,” chronicling his experiences as a prisoner in four Nazi death camps, including Auschwitz.

Frankl believed by identifying a purpose, focusing on it, and imagining a positive outcome, you can endure suffering in the midst of any horrific situation. “No one,” Frankl said, “can avoid suffering, but we can choose how to cope with it by searching for personal meaning.” It was then my doctor asked a crucial question, “How do you want your kids and grandkids to see you when they come to visit?” That was the moment I knew what I wanted and needed most - to be an inspiration to my family and ensure they saw me as a fighter, resilient, determined to stay strong, healthy, focused, and happy, regardless of the curveball thrown my way. Finding a purpose in having MS was a defining moment - when I chose to look at life differently and accept that only I can change my situation by changing myself.

My change in attitude didn’t happen overnight, but I started noticing precious moments again - when my grandsons call me Susu, a good laugh at the dinner table, or when Rocky and I stop what we’re doing and dance to a song we like. Friends have never meant more to me, and food has never tasted better. And I’ve learned to stay away from the negative. Before MS, I’m not sure I  gave purpose much thought, but now I find it in almost everything I do.  

My transformation could not have been possible without my neurologist, Dr. Aaron Boster, a positive and central force in my life. His upbeat, loving, creative, and intelligent approach to confronting and treating MS has saved me time and time again. He’s a YouTube rockstar and a courageous man who’s never afraid to stand up for his patients even when it requires him to challenge authority. In 2017, under Dr. Boster’s care, I started Ocrevus, the first and only FDA-approved drug to slow down the progression of PPMS by twenty-five percent. It was gigantic news in the MS world and something wonderful to celebrate.

Rocky and I were honored at the National MS Society’s annual dinner the same year. I stood before 350 guests - my family, loving friends, the medical community, acquaintances, strangers, and Dr. Boster, and spoke about my MS journey and finding purpose. Two years later, I invited Bennett (15) and Sawyer (12) to sit at our table for another National MS fundraising dinner. I wanted them to experience a charitable event and learn more about MS. Before dinner, I bumped into Mayor Michael Coleman, the honoree and guest speaker, who said he hadn’t prepared a speech and had no idea what to say; he asked me for some tips. Taken aback, I responded, “People need to leave here tonight with an important message. Whatever you talk about, don’t make it depressing; do the unexpected and make it uplifting.” He asked me to explain, so I proceeded to give him a list of ideas until I ran out of breath and felt Rocky’s gentle nudge (more like a kick in the foot), which meant “Let’s go.”

After dinner and introductions, the Mayor stepped up to the podium and thanked the National MS Society for his award. He told a quick story about getting dressed for the occasion and then said, “I was thinking about my speech tonight and ran into Suzy Saxbe in the hallway and asked her what I should say. But instead of me explaining her ideas, why don’t I let Suzy come to the stage and tell you herself.” To say I was shocked would be an understatement. I froze in my seat until I saw Sawyer and Bennett’s precious faces across the table, urging me to stand.

I grabbed Rocky’s arm and began walking slowly towards the stage and noticed the room was primarily comprised of corporate tables filled with employees and board members who probably wanted to be anywhere but at a fundraising event for MS. It occurred to me it might be better to broaden my remarks and not focus only on  MS. When I arrived at the podium, the Mayor joked, “Suzy, you have five minutes,” and I took him at his word. With Rocky and Mayor Coleman standing directly behind me, I leaned into the microphone and said, “I think I’ve been had; it appears the Mayor hasn’t written a speech.” Fortunately, it got a laugh, putting me at ease to continue with confidence. “Instead of focusing on MS, I would like to say a few words about disabilities in general. Most of you likely know someone with a disability, perhaps a family member, a close friend, someone at work, an acquaintance, or perhaps, even you.”

I described my brother’s reaction when I told him how much I didn’t want to go to a museum event in a wheelchair. “That’s crazy,” he shouted, “why do you say that?” “Because,” I replied, “when I  told some friends the same thing, they said they understood. They were being sympathetic, but I interpreted it as, ‘I understand, I wouldn’t want to go either.’” My brother shouted, “That’s ridiculous! Go out there and be proud of who you are. You’re ‘kinda’ pretty, and you’re old, but not that old. So hold your head up high, smile, be proud of who you are, inspire people, and show them it’s ok to be in a wheelchair.” The audience burst into applause at his remarks.

After a few more remarks, I concluded, “If you’re with someone who has a disability and they inspire you, tell them! Let them know why they inspire you or how you admire their courage, positive attitude, and determination to fight. It will lift their spirits (and yours). But, saying ‘I understand how you feel not wanting to go out or be seen in a wheelchair’ will be misinterpreted. People with disabilities, like me, need to hear words of encouragement instead: ‘You need to get out; People want to see you; You make them laugh; Go to the museum, and I’ll help you get there.’ And when you see someone with a disability, don’t feel sorry for them; they’ll see it in your eyes.”

At the end of my five minutes, I joked, “Earlier tonight, when the Mayor asked me for talking points, I gave him five or six suggestions, but he either forgot what I said or wasn’t even listening; so I’m here saying it for him.” Handing the microphone back to the Mayor, we both knew I had saved his day. Bennett and Sawyer were standing at the table when I returned, waiting for me with gigantic smiles and open arms. They were so proud, and I couldn’t help but remember my Satori moment years ago when my doctor asked, “How do you want your kids and grandkids to see you when they come to visit?”

I wish I didn’t have MS. I’m easily fatigued and move with great difficulty, yet I’m happy and appreciate everything I do have. I continue to focus on purpose and mindfulness, and I’m determined to live and enjoy every day and every precious moment.