Author Archives: Jennifer (Jenn) Powell

I Am Beautifully Rare Despite SPMS

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…

Finding My Way Through Sickness and Sadness with SPMS

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…

The Rise of Superbugs, Antibiotic Resistance, and MS

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 Without the Baggage of Fear

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…

Thankful Awakening: Accepting Change with SPMS

My happiness quotient correlates with my ability to give. I find tremendous satisfaction in doing this. This is one reason that I cherish Thanksgiving. I derive immense pleasure in creating this symbolic meal for those I love. For a subpar cook, I knock the socks off the classic Thanksgiving…

Filtering Ads and Choosing What’s Best

I remember a time without televised ads promoting medication. We had access to information through our physician or a card catalog. Pharmaceuticals are now a mainstay on our airwaves. And although prevalent, these ads previously had been inapplicable to me. Until now. An ad for Ocrevus (ocrelizumab) aired a…

The Journey to Self-love Is Long and Painful

At 17, I began a 20-year odyssey with endometriosis. The doctor’s platitudes and disbelief were astonishing and leveled my sense of self. The findings of severe endometriosis served as a painful “I told you so.” My life became a whirlwind of physical and emotional upheaval. For a young woman,…

Leaving Fear Behind and Learning to Trust

My eyes are closed. Both arms are in a loose “X” across my chest. I feel my heartbeat quicken as I lean back. I fall. For a moment in time, I am afraid. But before fear takes over, a dozen hands cradle me instead. A trust fall. This team-building exercise,…

We All Have Bad Days

Mama said there would be days like this. I just never thought there would be so many. After three days of insomnia, I am heavily fatigued and weary. I wait, bleary-eyed, for signs of pain to appear, watching the sunrise and praying for renewal. As if on cue, the birds…

I Will Not Be Sidelined in the Game of Life

It is the most wonderful time of the year. Sounds of commentator calls, audibles, and cheering crowds fill the house. A familiar sense of calm envelops my being. It is football season. I sometimes wonder how I survive the offseason. I was raised in the San Francisco Bay Area…

My Pain Is Real — Don’t Deny Me Relief

I am quite outspoken. I have no problem voicing my opinion or needs — or so I thought. An exchange this morning left me speechless. While my head was swimming with semi-intelligible responses, I was rendered mute. Let me just say that I have been on pain medication for…

We Are Strong — We Have No Other Choice

I recently saw a greeting card that read, “You never know how strong you are until being strong is your only choice.” No truer words. While I am grateful for my strength, there are moments when I would like another choice. Maybe it is a mind game. Perhaps I would…

Judging a Book by Its Cover

I find airport newsstands alluring. I am drawn toward the litany of books. Shelves of colorful covers beckon to me, bestsellers emblazoned with enticing accolades. I need those books, I tell myself, so I buy two. Fortunately, my shallow criteria are confined to airport literature. Life most certainly imitates art.

Loving Yourself in Sickness and Health

I am frequently commended for my demeanor. For my strength amid pain and adversity. For my optimism and happy disposition. For making the most of my circumstances. I love my steadfast faith. I love my fierce determination. I love my decision to combat pain and adversity with hope. I love…

Consortium for a Cure: Witnessing Hope

Our emotional selves are unique to each of us. The catalysts that elicit tears and fears vary. We feel emotions rise and await their eruption. Contrarily, they can catch us off guard. Sometimes a seemingly benign stimulus can invoke strong feelings. I should know better than to assume that anything…

The Unlikely Warrior: Finding Purpose with SPMS

I am balancing my laptop on one pillow and a leg brace. I have myriad MS-related health issues; alas, this is not among them. After meniscus surgery, aggressive arthritis, and a loss of cartilage, I’m facing knee replacement. Due to a busy schedule and the sustaining effects of Rituxan (rituximab),…

Losing Fear of Change with SPMS

I am a strategist. I think things through. This attribute is borne of necessity. A birthday dinner is not complete without my exit plan. As I wait to be served, I realize the booth is a bit low. I smile, blow out my candle, then scope out things…

Intimacy and MS: A Lesson in Discovery

Living with secondary progressive multiple sclerosis is a lesson in discovery. I strive to manage life with MS one day at a time. My disease touches all aspects of my life. One of the elements it affects is intimacy: closeness, affinity, warmth, trust, and mutual affection. Intimacy is friendliness,…