What would it mean to know just a little more about dystonia to you? Do you even know what dystonia is? If you don't, I ask that you take an extra few minutes and find out, but if you do know what Dystonia is, what would it mean to know just a little bit more? What would it mean for the doctors to know a little bit more? What would it mean for physical therapists, speech therapists, chiropractors, massage therapists, psychologists, and others within the medical community to know a little more about dystonia? ....... I'm not sure, actually.
For me, though, to know a little more about dystonia would mean an 8-year change of events. 8 years ago, my dad was diagnosed with dystonia, and I knew nothing about it. It seems, now, though, that I know a LOT about it... but not enough. All of the information I have now about dystonia is great toward educating those who know nothing about it. It is great for sharing with congressmen and congresswomen about how helpful funding and awareness in higher up decision making powers that may be. It is great for supporting someone who has just received a diagnosis or has a family member that has just received a diagnosis of dystonia. Where does this plethora of knowledge leave me, though? It left me still sitting through 8 years of a misdiagnosis of my dad. All of this knowledge let me sit in Alabama for 4 months while my husband was living 'our new life' in Pennsylvania by himself. It left me to help situate many different medical trips, ER visits, house remodeling to better suit him, and supporting my mom, in a situation that seemed utterly hopeless and helpless. The phrase "knowledge is power" is often attributed to Francis Bacon from his Meditationes Sacrae in 1597 and I agree with Mr. Bacon completely. I do think, though, that there should be a footnote that says, "your knowledge can sometimes lead you astray"! All of the knowledge I have and had about dystonia pointed in the direction of -imagine that- dystonia! All of the understanding and teaching that the physicians had that were treating my dad for dystonia had pointed in the direction of -imagine that- dystonia.
Dystonia, though, was the wrong diagnosis.
We lived dystonia for 8 years and lived it falsely. The knowledge we had and the knowledge the doctors had were not enough. We can never know enough and we can be sure that there is always something else to learn. The knowledge in the dystonia community and the support and friends we made during those 8 years WERE enough! They were enough to walk with us in the dark days and give us hope in what seemed like our darkest hours! Why, then, do I still walk with and stand with those in the dystonia community when they don't know enough? Because helping them know more, learn more, and continue to learn and find a cure, will spare those others who think they know enough, from walking 8 years of a misdiagnosis!