10 Things I’ve Learned With a Hidden Disorder
1. Smiling to mask the pain gets harder with time I like to think that I’ve typically been a happy looking guy. I come from a very loving family, I had plenty of friends and wonderful memories of growing up and my childhood. I had countless reasons to smile and for those who have known me for a lengthy amount of time, I think it’s safe to say that a smile was mostly what you would see me wearing on my face. As time passes with my disorder, there are times when it is hard to mask the pain and discomfort with a smile. I do my best for my wife and kids as well as my Family and Friends but when on my own I prefer to put my energy into managing whatever my body needs at that moment and not into looking the way people may be expecting. If I am not smiling, please do not be offended, I am not mad at you, I am not fighting with somebody, I am simply lacking the spoons (Google, “Spoon Theory”) needed to manage symptoms and smile at the same time. 2. Most, including Doctors, assume you are well unless you show your symptoms I have experienced, in various situations, an almost lack of belief by individuals and even Health Care Workers. In 1999 during my first visit to the hospital, I was scared, I was worried, and I was confused as to why I could not control my movements. I was told it was stress and asked to take a pill and go home to rest. Days later the movements returned and I was eventually diagnosed with a Movement Disorder. Disappointing, yes, but happy to have a name I could then investigate to see how I could fix it. Many years later it took a 3rd visit to ER, this time in an ambulance, for my symptoms to be taken seriously. In the previous two visits I was told I was suffering withdrawal symptoms from my drug or alcohol addiction. I was even called a liar by one individual treating me when they went to my wife and said I was obviously lying to her about how much I was drinking. Keep in mind that we travelled with a DVD describing what I had, how it could be treated, and what to do in case I could not tell them myself. On the 3rd visit, again via ambulance, the ER Doctor had no idea what to do with me and had to contact a larger hospital to figure out how he should be treating me. This was, of course, after he attempted to call the local Neurologists who, from what we could gather, were not answering their cell phones. When the movements stopped I was told I could go home, I made it 20 feet before having to turn back spending over a month in hospital due to my disorder. 3. People can be cruel without even meaning to be. I try hard to prepare my body for any outings we may undertake. Whether it is grocery shopping, a family outing, or simply going for a coffee with friends. However, there are times when my disorder decides to make an appearance while I’m shopping. Most people do their best to not noticeably stare or make a big deal but some people I can’t help but notice will do whatever they can to avoid me, some with a look of disdain. I seriously do not believe they are intending to be offensive but the odd movements and general look of episodes I’m sure make people uncomfortable and this may be how they react when faced with that feeling. While I am not personally offended as I’ve become accustomed to the varied reactions of others, please know that people with disabilities (physical, mental, developmental, etc) are human, just like you, and we have feelings and emotions just like you as well. Please keep this in mind before you react. 4. I was not as compassionate as I thought I was As a former Volunteer Fire Fighter I always thought I was a compassionate person and sensitive to the wants, needs, and lives of others. What I did not know was that even I had some general stereotypes and at times judged people without knowing anything about what they may be dealing with in their lives. I feel much more empathy for those I believe do not have an easy life, in spite of what that life has led them to. My level of respect and admiration for those with disabilities has grown tremendously. I do not believe it is my right, or the right of any individual, to judge a person without being in a position where you are trained to properly assess and help that individual. And for the people who should know better, please do not judge a book by it’s cover. As intelligent creatures we try hard to show ourselves at our best. You may not see it but hidden conditions can be crippling. 5. Kids are the most forgiving when you are having an “off” day. I have often heard that kids are probably the most resilient people on the planet. When it comes to my situation I have to agree. My kids, who have their own health issue which they have taken complete ownership of (so proud of my amazing girls), have shown great strength of character when it comes to me and my limitations. They easily understand when I say that, “I am sorry but I can not do that at the moment because of ?????”. They may be disappointed but their level of understand is off the chart. Their ability to cope and process what is happening is also off the chart. We could learn so much from our children if we choose to observe and allow them to teach us. Playing air guitar with your 8 year old during dystonic postures can be a lot of fun for us both. 6. Asking for help is much harder than offering help I have always been stubborn, I can’t help it, it’s genetic and if you knew my parents you would understand that the genetic side of my stubbornness is extremely powerful. That in mind, asking for help is not something that comes easily to me. Helping others I am willing to do at any point and I offer without expectation of reciprocity. But I would tend to prefer to go without an item I would like or may somewhat need rather than call somebody up and ask for them to help me get there or pick it up for me. It’s a huge source of frustration for some in my life and I sincerely apologize. But please know I can not help it, I do not like to feel like I am leaning on my disorder like a crutch while those around me do my bidding. I am working on this ignorant train of thought but it’s a tough nut to crack. 7. Some loved ones and friends will distance themselves while others will draw closer Having a disorder can be life changing, just as having a child, getting married, changing careers, etc. These things can drastically alter your schedule, free time, priorities, available funds, etc. And just as with the more common life altering occurrences, a hidden disorder will cause friendships to be reshaped with some close friends becoming distant while new friendships are born and old friends may re-enter your life. It is to be expected but it can also be a disappointing journey as some of those closest to you pull away. But, it can also be faith restoring as people you would never expect suddenly become a lifeline to the outside world for you. Expect both but fear neither. 8. I have rediscovered the beauty around me At the moment of writing, we have left Winter and have just entered Spring. Have you ever been walking outside during the first frost of Fall or Winter, especially on mornings not long after the fall foliage has nestled on the ground? If so, how many of you have noticed the incredible beauty of the frost as it outlines the colourful leaves? It’s incredible and I never noticed it until the last couple of years which amazes me. I spend hours watching the wildlife that surrounds our home. I marvel at cloud formations. I whistle to singing birds. I reply to our “hello crow” (a crow that sounds like it is saying “hello”). I will even slow my lawn tractor down to allow a field mouse to take refuge in the higher grass. Nature is amazingly beautiful, please don’t let your busy schedule prevent you from taking advantage of it’s comforting displays of wonder. 9. Mourning the person I was is as important as breathing Okay, I know I am not “dead” like all the characters who wore red on the original Star Trek. But, so much has changed due to my Dystonia that if I were to write a dating profile for the version of me before it took over and a profile for the person I am now, you would swear it were two separate individuals. “Before Dystonia” - I enjoy camping, golfing, activities with my friends, and travelling. I am a Volunteer Fire Fighter who works multiple jobs and enjoy travelling. “After Dystonia” - I enjoy reading, music, camping, spending time with Family, wildlife watching. I enjoy quiet evenings with loved ones. Now, I realize that age plays a part in some of this but see the difference? My Wife was the first to actually make me aware of this concept of mourning the person I was and my first reaction was, “crazy talk”. But, she was right. I would catch myself, quite often, saying or thinking things like, “I wish I could do this so I can help out” Of course I wish I could do all the things I used to be able to do but the fact is, I can not. And the sooner I come to terms with that the quicker I can start enjoying the new things I enjoy and can do without feeling guilty or sad about what I have lost. It’s a process but I feel I have made great strides in this area. 10. What I have lost physically I have more than gained in compassion, emotionally, and spiritually I guess this sort of ties in with mourning the person I was. If I were to seriously sit with a pen and paper and listed the things I have lost physically in terms of activities and abilities, it would eventually add up, I’m sure it would. But if I followed that with a list of things I have found, rediscovered, or learned about me, myself, and I, that original list would not seem so daunting or insurmountable. Are there things I would change? Of course there are, one should always strive to improve themselves and to be a better person. And while I am never going to give up attempting to regain my full health and kick my disorder, I will forever cherish the truly amazing world I have around me. A strong, independent yet supportive Wife, two amazingly brilliant young daughters, two unflinching families who have helped me tread the waters of life and to rise above the negative, parasitic thoughts that can plague a person at times. A Community that has been like a net below a tight-rope. They do not impose but I can feel their loving support. And to the Friends who have stuck by me, entered into, or have re-entered my life, I can’t thank you enough for the normalcy and status-quo.
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