Skip to main content

Posts

Crawling Into the New Year

 As the clock struck midnight on New Year’s Eve, I didn’t feel the usual sense of hope or renewal that many associate with the start of a new year. Instead, I found myself reflecting on the year behind me—a year filled with challenges that have left me feeling like I am crawling into this new chapter with one hand and one leg missing. Last year was, without a doubt, one of the most difficult I’ve faced. It seemed like every step forward was met with two steps back. Moving to the family farm to care for Harvey, my father-in-law with dementia, was a decision rooted in love and necessity. It was a move that marked the end of one chapter and the beginning of another, one filled with trials I hadn’t anticipated. Coupled with being laid off from my job, the weight of responsibility and uncertainty felt like an anchor pulling me deeper into uncharted waters. Physically, mentally, and emotionally, I was stretched to my limits. My own battles with manic depression, schizophrenia, bipolar di...

Reflecting on the Shadows: A Difficult Season

 As I sit here trying to put my thoughts into words, I’m reminded of something I’ve said many times: I have been better, and I have been worse. Right now, though, I’m finding it hard to convince myself that things will get better. My depression feels heavier than it has in years, like a storm cloud that refuses to move on. My schizophrenia—that ever-present companion—seems louder, more chaotic, more relentless. It’s as though my mind has become a battlefield, and I’m not sure which side is winning. And truthfully, I don’t know why this is happening now. Is it the time of year? Maybe. The holiday season has a strange way of amplifying everything. For some, it’s joy and togetherness; for others, it’s loneliness and loss. This time of year has always been a mixed bag for me—moments of warmth and love overshadowed by the painful reminder of what feels out of reach. Or perhaps this is just how mental illness works: unpredictable, inexplicable, merciless. Some days, the weight seems to l...

The Holidays and Manic Depression: A Battle of Joy and Despair

 The holidays. They’re supposed to be the happiest time of the year, right? A season of joy, filled with love and light. But for someone like me, living with manic depression, the holidays are complicated. They’re a kaleidoscope of feelings—some beautiful, others devastating. Everywhere I look, I see reminders of the perfect holiday: smiling faces, glittering decorations, and laughter ringing out like a song I can’t quite sing. And I want to feel that joy. I try to feel that joy. But some days, it feels impossible to climb out from under the weight of my own mind. The Pressure to Be “Okay” There’s an unspoken rule during the holidays: you smile, you celebrate, and you show up. But what if you don’t have it in you? What if your heart is too heavy, your thoughts too chaotic, or your body too exhausted to keep up? Manic depression is a cruel companion. On some days, mania whispers in my ear, pushing me to do everything —to buy all the gifts, bake all the treats, decorate every corner...

Chains of the Mind, Key of the Saviour

  When the Storm Rages Within Living with schizophrenia, bipolar disorder, and manic depression often feels like being trapped in a cage—one not made of iron bars but of invisible walls pressing in from all sides. On the worst days, it’s as if a storm rages inside, a storm no one else can see or understand. Explaining what it feels like becomes impossible; words falter and fail, leaving you isolated in a whirlwind of chaos and silence. I wrote this haiku to capture some of that struggle: Caged within my mind, walls unseen yet pressing close, a storm with no end. Words falter, fail, break apart, shattered echoes in the dark. The voices that rise within are loud, confusing, and relentless. Each one demands to be heard, but none of them seem to speak for me. They steal my peace, replace it with fear, and bury any attempt at clarity under layers of noise. A thousand voices, each one screaming to be heard, yet none speak for me. I reach for light, but it hides, trapped in shadows, trapp...

Finding Care in a System That Doesn't Understand

 Navigating the medical world with dystonia has brought its share of challenges, and one of the most frustrating aspects has been the recurring loss of doctors. Over the past few years, I've experienced the abrupt departure or retirement of two doctors who were treating my dystonia, leaving me suddenly without care and scrambling to find someone new. It’s hard enough to manage this rare condition, but it feels even harder when I have to repeat my story and search for someone willing to take on a dystonia patient. Finding a doctor who understands dystonia can be like searching for a needle in a haystack. Many doctors aren't entirely familiar with what dystonia is or what might cause it. I get the sense that sometimes, doctors may feel they know most of what there is to know. But as someone living with this unpredictable condition, I've come to accept that it's okay to say, "I don’t know." Unfortunately, humility seems to be lacking in some parts of the medical ...

Navigating the Unpredictability of Genetic Dystonia and Mental Illness

 Living with genetic dystonia is like waiting for a storm that you know is coming, but you can never predict when or how it will hit. For me, it’s not just the physical contortions—though they’re bad enough—but also the mental toll. Along with dystonia, I wrestle with bipolar disorder, manic depression, and schizophrenia. It's a lot to manage, and while I feel like I’ve got some control over it, there’s always this lingering question: When will it strike again? Will I go back to where I was? In our family, the males seem to deal more with the mental side of things, while the females experience those intense dystonic storms that twist the body painfully. But here’s the difference: I have some control, at least enough to feel like I can manage most days. My sisters don’t have that. For them, it’s not a question of if the storm will come, but when. No matter what side of the struggle you’re on, it’s always unpredictable, and it’s always painful. For me, mornings are the hardest. We ...

Being Me: The Weight of Feeling Like a Burden

  Living with dystonia is like carrying a weight that never lets up. It’s an invisible anchor, pulling at every effort I make to live as normally as possible. The struggle with my body is relentless. Muscles that refuse to obey, spasms that hit without warning — dystonia doesn’t care about my plans or my family’s needs.   And sometimes, neither can I.   As much as I want to be t he one who takes care of my family — to provide for them, protect them, and be there in all the ways they deserve — dystonia has a way of keeping me from doing that. It steals time, energy, and ability, leaving me to watch as others step in to handle what I can’t. No matter how much they tell me I’m not a burden, there are days when that truth feels distant and hard to hold onto.     It’s not just the physical limitations. It’s the emotional toll of knowing that I can’t be the person I want to be for them. Every time I need help with something simple, like opening a jar or getting ...