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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
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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 through a task, I feel l

Finding Gratitude When I Don’t Know How

  Gratitude is easy when life is smooth. When the sun shines and things fall into place, it’s natural to thank God for His blessings. But what happens when the storm clouds gather, when grief, confusion, and hardship strike? How do we give thanks when we don’t even know how?  This is something I wrestle with every day. Life can be heavy—grief for those we've lost, mental and physical struggles, challenges that seem insurmountable. In those moments, it feels almost impossible to bow my head and say, "Thank You, Lord."  Yet, even in the depths of my uncertainty, I am reminded of Paul’s words: "In every thing give thanks: for this is the will of God in Christ Jesus concerning you." (1 Thessalonians 5:18, KJV) Notice that Paul doesn’t say to give thanks for everything, but *in* everything. We’re not expected to be thankful for pain or suffering. We’re simply called to find a way to give thanks *in* the midst of it. That’s the challenge for me: finding gratit

If People Understood Dystonia, Awareness Would Be Unnecessary

 Dystonia. A term that often slips through the cracks of public consciousness, rarely acknowledged or understood. Yet, for those of us who live with its presence every day—like my sister—it is far more than just a medical diagnosis. It is a pervasive, life-altering condition that demands strength, resilience, and often, solitude in a world that doesn’t fully comprehend it. If the public truly grasped what dystonia entails, we wouldn't need awareness campaigns or designated months to educate people. The very idea of "raising awareness" implies that dystonia exists in the shadows, that it is a foreign concept to most. But if this condition were better understood, empathy and support would naturally follow. Dystonia is far more complex than mere involuntary muscle contractions. It manifests as prolonged, often painful spasms that contort the body into unnatural, debilitating postures. But beyond the physical symptoms lies an emotional burden—one that is often invisible to ou

Remove not the ancient landmark, which thy fathers have set

  Scripture: Proverbs 22:28 "Remove not the ancient landmark, which thy fathers have set." In the book of Proverbs, we find this profound command: "Remove not the ancient landmark, which thy fathers have set." This verse speaks of boundaries, both physical and spiritual, that were established by those who came before us—our ancestors in the faith. These landmarks were more than just property markers; they represented heritage, wisdom, and the timeless principles that have guided God's people through the ages. In ancient Israel, moving a landmark was not just an act of theft but a violation of trust and respect for the community. These markers were set by the fathers, those who laid down the foundations for future generations, ensuring that what was given to them was preserved and passed down in integrity. Spiritually, this verse calls us to honor the traditions and teachings that have been handed down through generations of faithful believers. It’s a reminder n

Judging in Love, Not in Condemnation, There is one Judge and it isn't us

  "Judge not, and ye shall not be judged: condemn not, and ye shall not be condemned: forgive, and ye shall be forgiven." —Luke 6:37 As Christians, we are called to live in love, extending grace and mercy to those around us. However, it's easy to fall into the trap of harshly judging others when we see their flaws and failures. We may forget that we too are imperfect, susceptible to the very sins we criticize in others. The Bible calls us to a different standard—one where love and compassion guide our judgments, not condemnation. Judgment Tempered by Love In the Sermon on the Mount, Jesus teaches us, “Judge not, that ye be not judged. For with what judgment ye judge, ye shall be judged: and with what measure ye mete, it shall be measured to you again.” (Matthew 7:1-2. This passage is a reminder that the way we judge others is the same way we will be judged. If we judge harshly, without love or understanding, we set ourselves up for a similar judgment. Jesus'