It is 2 a.m. and I am awake. I sit on the couch with my head in my hands. The leg pain that broke my slumber is now extreme. I have taken my medications, used my topical, and applied heat. All to no avail. Exhaustion meets pain as my eyes…
Silver Linings - a Column by Jennifer Powell
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…
Living with secondary progressive multiple sclerosis is a lesson in adaptation. The constant is change. This disease has given me sea legs. Nevertheless, some days have me fooled. When I think I finally have it in check, MS calls “checkmate!” And I remember. Let go of the reins, Jenn.
If I told you that standing on your head would cure multiple sclerosis (MS), would you do it? I am fairly sure you would find a way to do so. At least once a week, I hear of a miracle cure for MS. Well-meaning individuals tout the latest and greatest…
I am in a state of anxious exhaustion. Anxiety has been a lifelong companion that has presented itself in various ways since childhood. In hindsight, I can recognize triggers and reactions. During times of anxiety, I’ve felt as if I was losing my mind. Over the years, I’ve learned…
Marriage is hard. It is also the most beautiful, sacred, and honest of all my experiences. Our vulnerable reality is a far cry from the blissful naivete of our wedding day. We had no idea how trying our future would become or how deeply our devotion would grow. I credit…
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,…
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,…
I saw a praying mantis this morning. The long, leaf-like oddity caught me off guard. I was transfixed by the beautiful specimen, its prayerful state contrasting starkly with its violent mating ritual. The female is known to eat the head of the male — a shift in temperament at…
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 recently sent my neurologist a thank-you card. A friend of mine was incredulous and truly baffled at my gesture. “Why would you thank your doctor?” she asked. Why wouldn’t I? I am thankful for my doctor’s wisdom and also her heart. She is an elusive hybrid of extreme intelligence…
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…
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…
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.
The glow of the fireworks bathes the surrounding trees. A kaleidoscope of blue, yellow, and red illuminates the night sky. It is a day of picnics, parades, and pyrotechnics. It is the Fourth of July, when Americans celebrate gaining their independence from Great Britain. I can relate to celebrating…
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…
A well-known mantra exists in the multiple sclerosis (MS) community. I first heard it after my diagnosis and have since adopted it as my own. “Move it or lose it.” Movement is essential for everyone’s health and well-being. For those of us with multiple sclerosis, it is imperative. Regular activity…
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…
Living with multiple sclerosis (MS) is an education in and of itself. I’ve learned a lot about myself and I am a different person now, nine years after my diagnosis. I hope to learn and grow over the next nine years as MS continues to shape my perspective on life.
They say that the only certainties in life are death and taxes. While I agree with these two, a third inevitability is capitulation. Why do we have theme parks when we have lives? We have highs and lows and homeostasis in-between. Just when you think it is safe to exhale,…
I am a positive person with not-so-positive moments. These moments don’t quantify my essence. Nevertheless, they sure try. I work hard to keep the negativity at bay, but I don’t always succeed. As I write, I’m overcome with pain and fatigue. This is not the exception but the…
Few things scare me. I mean, truly frighten me to my core. While I flee from bees and scream at spiders, I have been both stung and bitten. Scary movies, no matter how asinine, freak me out. Being alone in the dark invokes vivid imagination. Jason, Freddy, and Michael Myers.
I spend a great deal of time in my head. I think. A lot. Perhaps I do so more than I should, but then again, it is a haven at times. My thoughts run the gamut from the serious to the inane. Today my thoughts…
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),…
Be the Change with Walk MS 2019
Fatigue falls hard as I look out on the first hot day of the year. I struggle to focus as my head bobs. This is my new normal. The attacks are merciless,…
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…
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,…
If a cat has nine lives then I have at least twice as many. One day shy of my 50th birthday, my mind runs a vivid montage of years past. I close my eyes and I am there. I feel a heavy melancholy as the movie rolls. I see…
I had a busy weekend. I made it to an event I had so wanted to attend and survived it. Our golden retriever rescue had a volunteer mixer, and both Abby and I enjoyed ourselves. Once home, Abby sacked out and I began nursing the inevitable pain. The…