Overachieving is my jam. Go big or go home. I strive to be the best at whatever it is I do. Currently, I am achieving greatness in my ability to fall. Three falls in three weeks is a new record. The first one happened in the kitchen. Upon feeling myself…
I have been living in the land of Netflix. It went from a place I would visit from time to time to a home away from home. In between life’s moments, I find myself teleported to the land of escape. I become lost amid the complexity of characters and the…
The cog fog (cognitive fog) is thick and heavy. I cannot seem to extract words from the alphabet soup that fills my head. This is torturous for a self-described word nerd. And as my MS progresses, so does the fog. Slowed cognition has become one of the most…
I am often so preoccupied with the daily maintenance of MS that I forget where the disease ends and I begin. It is too easy to lose our identity among the myriad challenges that accompany a chronic disease. I am the queen of juggling chaos, but that often leaves…
Last week, I again started my twice-annual infusion of Rituxan (rituximab). After 384 days without my disease-modifying therapy, my team decided I could no longer wait. In its absence, my symptomology had worsened. Halting progression trumped a pandemic, and with personal protective equipment in place, I begin…
I am tired of having multiple sclerosis. I am just so tired of this disease. And you know what? That is OK. Being tired of MS does not negate my gratitude. It does not replace my joy and zest for life. It is granting myself the grace to be honest…
I grew up sailing the San Francisco Bay. My summers were spent in sailing school. My father’s daughter, I loved being on the water. There was no place more peaceful or exhilarating. That serenity turned to turbulence one cold and foggy day. While speeding downwind, our boat broached. The…
I am staring at my golden retriever, Abby, as she sleeps on the lawn, the afternoon sun dancing through her fur. Lying so still, she is encapsulated in a golden glow. I glance at her chest and am reassured by its rhythmic rise and fall. Abby is 10, and…
I have long preached the merits of acceptance. In embracing my MS, I have mitigated much of the accompanying fear. This modus operandi has enabled me to live alongside my disease as opposed to clashing with it. While ideal, it is becoming increasingly difficult to follow my advice. Two…
Our thoughts influence our being. The stories we tell ourselves frame our reality. They affect the decisions we make, our behaviors, and ultimately our overall mindset. These serve to either nourish or starve our psyche. If we are what we eat, then are we what we think? Absolutely. We cannot…
I like my husband. I like his generous heart, his humility, and his penchant for Tommy Bahama shorts, T-shirts, and flip-flops. Sure, I love him. Yet our love has changed throughout our 23-year marriage. We have traded passion for patience and lust for loyalty. While each exists, they are…
If laughter is the best medicine, then I have a functional pharmacy. I love to laugh and enjoy humor. If you are a friend of mine, then you know my dry wit. I use that wit to shield anxiety and fear. I ease the tension by creating humor. I…
May 30 was World MS Day 2020, an annual initiative for the MS community worldwide to unite. The Multiple Sclerosis International Federation created this global campaign to educate, raise awareness, and offer hope. Its free, online resources provide an abundance of helpful information. Fittingly, the theme for World MS…
“I am fine.” Three words I know as rote. I say them frequently and without hesitation. I utter them as much for others as I do for myself. My reality is too much for most. At times it is too much for me. This packaged response is almost expected. And…
Music is a spiritual experience. I love music in all of its forms. I grew up being serenaded by parents harmonizing everything from the Phi Gam fight song to Peter, Paul and Mary. After crucifying the clarinet, I played the piano until my late teens. I have fond memories of…
I lie on my stomach in a Downward Dog fail. I am doing yoga, or something like it. I open my eyes. I spy a golden retriever tumbleweed float across the travertine floor. I feel my body flinch. It knows how much I want to get up and clean. It…
I give freely of my heart and wear it proudly on my sleeve. Those who know me would say it waves. I care deeply for my family, friends, and colleagues. I derive immense joy in my volunteer work with rescue animals. Be it Walk MS, animal welfare, or a…
The state of our world lies heavy on my shoulders. I worry about and miss my family. Our geographical distance, although unchanged, seems to have grown exponentially. Is everyone so far, or am I so very confined? I understand how a prisoner in solitary confinement finds his own perception…
Zeposia’s recent approval in the U.S. is exciting news for all in the MS community. Unfortunately, we will need to table that excitement a bit longer. Despite its approval, the treatment’s commercial distribution will be delayed by the COVID-19 pandemic. I am confident, however, that it will be…
We are living in unprecedented times. Years from now, references will be made to COVID-19. Numbers of those afflicted and those we lost will live on in print. Future generations will learn how phrases such as “social distancing” and “stop the spread” originated. This pandemic will leave a…
Life is unscripted. It is messy and uncertain, with change being the only constant. Much like living with multiple sclerosis, adapting to change is directly correlated to our ability to thrive. We are reminded of this as we adjust to our new reality in the throes of COVID-19. Seemingly…
“It’s the end of the world as we know it.” — R.E.M. Welcome to the world of COVID-19. Coronaviruses aren’t new: severe acute respiratory syndrome (SARS) and Middle East respiratory syndrome (MERS) are both coronaviruses. But this uninvited guest, COVID-19, the illness caused by the novel coronavirus, has…
I have secondary progressive multiple sclerosis and I am rare. In honor of Rare Disease Day on Feb. 29, I honor myself. I honor you and anyone else with a rare disease. I have been asked if multiple sclerosis qualifies as a rare disease. It does if…
I am hyperaware of the fragility of life. More specifically, the fragility of mine. Secondary progressive multiple sclerosis is an autoimmune disease. My immune system eats away at the myelin sheath surrounding my nerves. My disease-modifying therapy is an immunosuppressant. This further weakens my immunity. I have known…
Myelin is the protective sheath that covers nerve fibers and is damaged in those with multiple sclerosis. Quantifying the degenerative process of myelin would lend perspective to how much and where a patient is progressing. Currently, MRIs are used for diagnostic purposes, but the nuances of progression remain difficult…
I am living with an unenviable reality. An antibiotic-resistant, hospital-acquired infection that I developed two decades ago has reappeared. Before my multiple sclerosis diagnosis, I had a spinal cord stimulator implanted for pain control. Although the stimulator was removed shortly afterward, the infection remained. This infection presents itself when…
Traveling with secondary progressive multiple sclerosis is challenging. International travel adds some extra lengthy steps. That said, I have the bug. I’ve always had a hunger to see and experience new people and places. From a young age, I traveled alongside my parents, which gave me a cultural education…
I sat stunned as tears welled. I gazed toward the pain in my knee. My pants were torn. Blood pooled, then dripped down my calf. I was transfixed. The contents of my purse were strewn beneath a car. I reached for my phone but recoiled from the pain in my…
Life is never how you expect or predict it to be. Things happen today that we couldn’t have anticipated. We have no easy or predefined path to fulfillment, joy, or nirvana. Forget about your navigation as your direction can — and will — change at any moment. My compass spun…
As a little girl, I loved Christmas. My parents went to great lengths to make the experience magical. Santa was as real as the stockings that hung from our mantle. On Christmas morning, the filled stockings lay right next to the half-eaten cookie. Santa had come! My jubilance grew as…
Get regular updates to your inbox.
