By Robert Weisbaum
As I sit in the cold hospital room, the air heavy with uncertainty, I hear the words that will change my life forever: “Optic neuritis, vision loss, 15 lesions” – a potential sign of multiple sclerosis (MS).
How did I get here?
My mind races back to the time spent with a family friend battling primary progressive MS, and the grim reminder of mortality that hung in the air. It felt like a countdown had begun, fear set in, and I asked myself: How will I live until that timer runs out?
A life of adventure and challenges: ‘I defied medical odds’
My journey began long before that hospital room, shaped by a childhood filled with discipline and adventure. From martial arts to competitive sports, I embraced life’s challenges with vigor. But it was in the throes of a skydiving accident at age 21 that I faced my first true test.
Stranded in the north 40 of a drop zone with shattered legs, I confronted the prospect of never walking again. I lay looking at my open fractures and blood slowly leaving my body. As a paramedic, I was all too familiar with what was happening. As emergency crews arrived, I did my all to remain stoic and hopeful.
I remember heading into surgery and the surgeon telling my father, “It’s really bad, we will see you in a bit.” Ten hours later, they had successfully repaired my legs, but the journey to recovery would be long. Several surgeries later, my other orthopedic surgeon told me it was unlikely that I would work again as a firefighter/paramedic so probably time to look at alternatives.
I refused to accept that fate. With the support of loved ones and unwavering determination, I defied medical odds and reclaimed my mobility. The scars remained, but they became a testament to endurance. I quickly recognized and embraced what it meant to accept pain and suffering. I chose to use it to transform myself and continue to grow.
Health crisis strikes: ‘How did I get to this point?’
Years later, amidst the weight of familial struggles and the demands of leadership, I found myself neglecting my own wellbeing. The heartache and sadness surrounding one of our own firefighters taking his life, my father suffering through Parkinson’s with no quality of life, and my own sense of self lacking weighed heavily. Stress took its toll, manifesting in physical and emotional turmoil. The turning point arrived with a pain in my eye, a harbinger of the storm to come.
After returning home from another day at the firehouse, I felt an intense pain in my left eye that intensified as I looked in all directions. A dark shade was slowing moving down over my field of vision. I went to the mirror to see if I had some foreign body on my globe and what could be causing this.
As I looked at myself in the mirror, all I could see was an overweight and unhappy person. How did I get to this point?
I went to sleep, hoping the eye issue would correct itself overnight. As I woke up, the sharp and intense pain increased, and the vision in my left eye was severely impacted.
A trip to the optometrist resulted in the recommendation to go to the local ER for an MRI. First responders living in a small community understand what it is like to seek out medical care where you often know many of the people at the hospital. A wide range of emotions can take place – one of comfort in knowing your peers, sometimes one of fear.
As I explained my symptoms, the look of worry was evident to the doctors and nurses.
One of the greatest challenges during this time was my own inner conversation. My whole adult life has been dedicated to emergency services. If I lost my vision, what would I do? “Rob, get it together.” I said to myself. “You’re tough, you’ve been through a lot over the years. This is nothing. Be strong.” This went on for several hours – a mentally draining and exhausting experience.
As I waited for the results of my first MRI, the doctor told me that we needed to do another scan with another view. I knew at this moment they had found something. Following the second MRI, the doctor returned to share that they found 15 lesions on my brain and my optic nerve was inflamed. Diagnosed with Clinically Isolated Syndrome, a precursor to MS, I stood at a crossroads.
From darkness to light: ‘I chose to be a champion of resilience’
Not having an official MS diagnosis disqualified me from beginning the most effective treatment. The next appointment available with a Neurologist was 6–8 months out. I was at a loss for words. Scared, in fact, terrified. I did not know what to do. I had no control over this.
I returned home. I was advised to return to the ER for the next three days for high-dose IV steroids to help treat the inflammation to my optic nerve in hopes my vision would be restored.
I was in a dark place. After two days of infusions, I found myself extremely sad, lonely and without hope. I thought back to my skydiving injuries and how much I had suffered over the last 20 years. “I can’t do this anymore; I don’t want to suffer with another thing for the rest of my life,” I thought to myself.
In the darkness of uncertainty, I contemplated saying goodbye. Yet, in a moment of profound clarity, I felt a surge of warmth and purpose as I thought of my family and the impact of my departure on them. At the flick of a metaphorical switch, I chose not to be a victim of circumstance but rather a champion of resilience. With the support of my loved ones, I sought the care I needed, navigating obstacles and advocating for my health.
A turning point: ‘Lucky to receive my diagnosis’
Thanks to my boss and his wife, and by the grace of something higher than me, I was able to secure an appointment in two weeks with a top neurologist in Denver. I was so incredibly grateful. In order to officially diagnosis MS, I had to wait for another neurological episode lasting greater than 24 hours followed by another MRI demonstrating new lesions. This is important, as the “Cadillac of drugs” – aka disease-modifying therapies (DMTs) – require an official MS diagnosis; Clinically Isolated Syndrome was not enough. People have gone years without receiving a diagnosis. I feel somewhat lucky that I received my relapsing remitting MS diagnosis just four months after my initial attack.
While the road to diagnosis was fraught with challenges, from insurance hurdles to finding a treatment facility, I secured access to life-changing therapies through perseverance and resourcefulness. This journey underscored the importance of self-advocacy – a lesson passed down from my father. In the face of adversity, we must be our own champions.
Navigating treatment options: ‘Evaluating the impact on my life’
Navigating our healthcare system can be incredibly frustrating. I embarked on the task of researching my top treatment options and evaluating their potential impact on my daily life.
After sifting through 15 options, I narrowed it down to three. The preferred choice involved an infusion administered every six months. This treatment would target and deplete my B cells, responsible for regulating my immune system, effectively halting the self-attack my body launches. Specifically, it would combat the assault on my central nervous system’s myelin sheath, the protective layer around my neural circuitry, which mistakenly perceives infection. However, this medication comes at a hefty cost, and despite its necessity, insurance coverage was initially denied. Fortunately, the drug manufacturer offered assistance programs for eligible individuals, and I was qualified for complimentary medication.
A new hurdle emerged as I sought to find a facility willing to administer the medication. Receiving repeated denials due to the requirement for medications to originate from the facility itself, I persevered until I discovered an oncology center that empathized with my predicament and agreed to facilitate my treatment.
Self-advocacy: ‘No one else will do it for you’
Throughout most of my life, I’ve understood the importance of being a staunch self-advocate. Navigating the hurdles of my circumstances has only reinforced this notion. It is crucial never to cease advocating for oneself, as ultimately, no one else will do it for you. While I acknowledge that there may be individuals supporting you to the best of their abilities, it’s paramount to take full ownership of your situation and relentlessly pursue the results and answers you seek. My father imparted an invaluable lesson early on: “No one cares about you, so make sure you care for yourself.” While I’m grateful for those who care for me, I understand that prioritizing my own wellbeing is paramount, without relying on external assistance.
Another profound lesson from my dad, among many, came with witnessing how Parkinson’s defined him, which instilled in me a resolve not to let MS define who I am. What does this mean? It means acknowledging my lifelong, incurable condition, which may bring increasing disability over time, but not letting it hinder my pursuit of becoming the best version of myself.
The stress-disease connection: ‘Why aren’t we prioritizing our health?’
While my journey is centered around MS, extensive reading has led me to understand the profound impact of stress and inflammation on various ailments and diseases. This may seem obvious, especially if you’re grappling with health issues yourself. To those individuals, I pose a challenge: Reflect on what actions you’re taking, or perhaps not taking, to address these persistent challenges. After all, it’s widely acknowledged that our work often coincides with many stress-related conditions and diseases, such as cardiovascular diseases, cancer, obesity, disrupted sleep patterns, mental health disorders, and depression, among others. With this knowledge at hand, why aren’t we collectively prioritizing our health in a more intentional way? While some among us are indeed proactive in addressing these concerns, too many of us simply are not.
Lessons and changes: ‘I choose to focus on the present’
My leadership suffered due to neglecting my own wellbeing for years, resulting in occasional lapses in effectiveness. Thankfully, my team subtly communicated their concerns, prompting me to recognize and learn from that period of my life with humility, vulnerability and a commitment to improvement. Upon embracing change, I rediscovered my passion for learning and embarked on a journey of continuous education – a commitment that remains steadfast today.
Drawing inspiration from my martial arts background, I adopted three guiding principles:
- Knowledge in the mind
- Honesty in the heart
- Strength in the body.
Transforming both mind and body proved to be arduous, as life’s challenges are not meant to be easy, but rather opportunities for growth. Through unwavering dedication, discipline and consistency, I shed 110 pounds, confronting each obstacle with a resolute no-excuse mentality. I distanced myself from negativity, embracing positive influences and striving to be the best version of myself daily. Despite uncertainties about my future, I choose to focus on the present, channeling energy into what I can control while extracting lessons from the past without dwelling on regret or victimhood.
Taking ownership of my life’s outcomes has catalyzed tremendous personal and professional growth, reinforcing my commitment to my health and raising awareness about MS, and evolving as a leader within our organization. While I don’t seek validation, the thriving state of our team suggests that my efforts and growth haven’t gone unnoticed. I firmly believe that leadership entails embodying one’s values and principles, leading by example, and empowering others to strive for their best selves. I commit to providing support, information and resources, recognizing that while I can’t change behaviors, I can inspire individuals to aspire to greatness. Throughout this journey, I’ll demonstrate my dedication through action, ensuring that my words align with my deeds.
Mind, body and spirit: ‘Nurture all three’
While spirituality has been a cornerstone of my life, I’ve come to truly appreciate the interconnectedness of mind, body and spirit. It’s essential to nurture all three aspects to lead the fulfilling life we desire.
Embracing a growth mindset has been transformative for me. For those seeking guidance on cultivating such a mindset, it begins with acknowledging that there’s always more to learn and then actively seeking out knowledge. Caring for our bodies is paramount, as we’re entrusted with only one in this lifetime. I’ve learned firsthand the importance of treating it with reverence, a lesson underscored by my diagnosis, which served as a wake-up call. My hope is to inspire others to adopt a proactive approach to health and wellness rather than reacting to adversity. Regarding exercise, the key is to start and persist, allowing it to become a rewarding habit over time. Personally, I’ve rediscovered the joy of physical activity and its profound impact on my wellbeing. Lastly, exploring the spiritual dimension, whether through religion or a belief in something greater, adds depth and meaning to life. I subscribe to the notion that everything happens for a reason, even amidst tragedy, though uncovering that reason may be a separate journey. Reflecting on the pillars of belonging, purpose, storytelling and transcendence, as discussed in “The Power of Meaning,” offers valuable insights into leading a purposeful life.
When asked about my transformation, I attribute it to hard work, discipline and consistency, emphasizing that there are no shortcuts. My daily reality involves managing symptoms like profound fatigue, dizzy spells, spasms, unexplained pain and irreversible vision damage. Despite these challenges, I’ve developed strategies to cope and thrive, navigating each day with resilience and determination.
Steps to take after receiving a life-changing diagnosis
Any of us could face a life-changing diagnosis. These steps helped me through the experience:
- Educate yourself: Dive into research, reading and gathering information about your condition. Knowledge is power, and understanding your illness can empower you to make informed decisions about your health.
- Seek emotional support: Find trusted loved ones or a support group where you can openly express your emotions and feelings about your diagnosis. Having a supportive network can provide comfort and reassurance during challenging times.
- Build a support network: Surround yourself with individuals who uplift and encourage you. Keep those who genuinely cheer you on in your inner circle and minimize exposure to negative influences or distractions.
- Commit to change: Prioritize your health by adopting healthy lifestyle habits, including regular exercise and nutritious eating. Processed foods may be convenient, but investing in your wellbeing should be your top priority. Focus on whole, single-ingredient foods found in the outer aisles of the grocery store, which are often more nourishing and budget-friendly.
- Set realistic goals: Establish achievable goals and work steadily towards them with a no-excuse mentality. While certain aspects of your situation may be beyond your control, you always have the power to control your mindset, perspective, and response to life’s challenges.
- Practice gratitude: Cultivate a mindset of gratitude by acknowledging and appreciating the positives in your life. Regularly reflect on the things you are thankful for, as focusing on the good can shift your perspective and foster resilience. Conversely, dwelling on negativity can cloud your outlook and hinder your wellbeing.
My purpose: ‘I strive to inspire others’
Today, my purpose is clear – to share my story, to uplift those in need, and to leave a legacy of compassion and resilience. I’ve discovered that true purpose lies not in grand gestures, but in the daily victories over adversity. Through it all, I discovered the interconnectedness of mind, body and spirit, plus the value in embracing growth, prioritizing self-care and regaining my zest for life.
Today, as I continue to lead and serve, I am guided by the aforementioned principles of knowledge, honesty and strength. I strive to inspire others to embrace wellness proactively, rather than reactively.
In the quiet moments of reflection, I understand that each day is an opportunity to heal, to seek fulfillment, and to be great. Together, we navigate life’s challenges, drawing strength from within and from one another. As our paths converge, may we find inspiration and hope in the shared journey of resilience.
Thank you for allowing me to share my story. While our paths may or may not cross, our spirit of resilience will endure. That in itself is a gift.
ABOUT THE AUTHOR
Chief Robert Weisbaum began his career in EMS in 2000 and in the fire service in 2004. He has worked in private systems, for fire departments, and in air medical as a Critical Care flight paramedic. He joined the Crested Butte Fire Protection District in 2013, currently serving as the EMS & Fire Chief of the department.