As I’m closing in on my one year anniversary with a movement disorder. The movement disorder that flipped my life upside down. My mind has been turning to what I wish I would have known then. The experience of losing control of parts of my body are rather specific to my own human experience, but the feeling of loss is universal. Losing something that you had never even once thought of being without, can be very traumatic. The following are lessons that I wish I could have known when my journey away from normalcy began.
1. It’s Okay To Not Be Normal
When I started to come to peace with my disorder I realized that I wasn’t normal and that that was alright. The stares from others, the insensitive comments, and even the over sympathizing will always be there, but you control how you perceive yourself. Always wondering what other people think about you will get you nowhere, but to the state of insecurity. Yes I spasm and twitch but it doesn’t make me less of a person, My mind and soul are still intact.
2. Make Something Positive Out Of Your Situation
It’s hard to see the light when all your security is being thrown out the window. Losing something feel like your being thrown down into the depths of a cave and you don’t know have a map to the surface. I’m happy that I realized the positive in my situation before I got so consumed in the fog that loss brings. I let my new found ability to connect with others with similar conditions to help bring me out into the light. Use your pain to find a new purpose in life or to reinforce an old one. It’s easier to let yourself wallow in self pity but you will never be happy that way. Choose happiness.
3. Share your story
The power that your own story has is a tremendous one. As human beings we are almost programmed to connect and learn from the art of storytelling. Even if you don’t find yourself to be a great speaker or writer, you can still make an impact by telling someone your story in just a one on one situation. By sharing your story you can find others to support you when the pain is the worst. Sharing my story has helped me connect with other people and helped me make a positive impact in their lives.
4. Accept Love From Other People
Don’t try to take on the hardship by yourself. Experiencing love from others is a transformative event. When I decided to let other people come on this journey with me it was like a weight was lifted off my shoulders. I may have had to still deal with the physical pain by myself but I knew that I didn’t have to go it alone afterwards. I had people to support me when I was feeling depressed. Seeing that other people care and love you, should inspire you to try to live your life with a positive attitude. If not for yourself than do it for them.
5. You Are Doing This For Yourself
I know I just said that you should live life with a positive attitude for the people that love you, but that’s not completely correct. Ultimately you need to remain positive because your own happiness is worth something even if you don’t believe it right now. As human beings we all have an ability to make a tremendous impact on this world even in our seemingly small lives. You don’t know how a small act of love can inspire others around you. If you continue to live in a state of depression you squander your ability to show love to others. But doesn’t that still seem like you are trying to stay positive for others? Wrong. The crazy thing about this world is that helping others brings it’s own personal satisfaction and contentment. Seeing that you are making a positive impact in someone else life gives you no other choice but to love yourself. In a sense then by helping others you are doing it for yourself.
I hate when people are put in boxes. When they are overgeneralized as lazy, unintelligent, worthless or any other adjective you can think of. We tend to want to put anyone who is different from us into a category that is lesser. We most often either judge someone and do nothing or judge and try to help. I don’t believe either is okay. Doing nothing is simply uncaring and unloving. Trying to help on the other hand is generally just to inflate our own ego’s. When we try to help someone we try to make them into a morally better person which too often is just a version of ourselves. Before writing someone off as hopeless or in need of your help, first try to understand where they are coming from.
I’m a white, middle class, male who lives in a society dominated by white males. I know little of judgement simply based on my appearance. It wasn’t until my disorder that I noticed how it felt to be judged based on my appearance. When my body would lock in an odd position or when I would spasm in public I could sense the stares of those around me. Looking different than everyone else made me incredibly self conscious and a lot more sensitive to what others thought of me. One instance of judgement stands out particularly vivid in my mind.
I had gone to a church to see my brother perform in his schools choir and my head stopped working in a normal way. My bottom lip wouldn’t stop moving and my neck was spasming. At some point I decided that I needed to go to the bathroom just to get away from everyone and I hoped that my spasms would calm down if everything was quiet. As I tried to go through the bathroom door a kid that was probably 12 years old stopped me. He said I couldn’t go into the bathroom because I was on drugs. He assumed because I looked different that I was drugs and couldn’t be allowed to go into a church bathroom.
While this experience may not sound very serious it made me extremely angry. Though it was just a little kid stopping me, I had never been denied something based on my appearance my entire life. I was already sensitive to the fact that I was being stared at and now I couldn’t even use the bathroom? It was hurtful and unfair. Looking back at it now I see what the experience taught me. It helped me realize the power our judgements have on others.
Too often we act like that little kid and judge before we understand. When we judge we hinder ourselves from connecting with a fellow human being. I’ve learned to try understand before I judge someones morality, intelligence, spirituality, etc. By no means have I mastered the ability to understand before I judge but I have begun to try. I don’t every want to make someone feel like I did. Instead of tearing people down with our judgements, we need to start understanding where others are coming from. What you learn about others may surprise you and help you realize that maybe you’re the one who needs to change.
As I began to get more used to looking different I became less sensitive to the stares. I became more secure in myself and realized that what others thought about me really had no bearing to how I approached life. Instead of getting angry at others judgements I’ve learned to either ignore the stares or to engage in a conversation to help who ever it is. Letting judgements get to you not only hurts yourself but also the other person. When you react in anger to someones judgement of yourself, you shut off the possibility of letting them understand you. Judgement is so engrained to us to as human beings we have to make a choice every day, perhaps every minute, to stop and realize that judgement isn’t ours to give. I feel very strongly that the reason we are all put on this earth is to let all our choices be products of love. If we choose to let all our choices be products of love than judgement has no place.
When I was little I was incredibly afraid of using the bathroom past midnight. I had heard stories of “Bloody Mary” coming out of the bathroom mirror to kill little children when it turned midnight. In my head I turned this story into anytime past midnight, demons would try to kill you if you even looked in the mirror. I wasn’t about to be killed just because I had to pee, so I would make sure not to drink anything hours before I went to sleep. If I were to wake up having to pee and it was past midnight, I would either hold it or run to the bathroom with my eyes closed, never looking at the mirror. This fear of mine probably started when I was around 8 years old and progressed into a superstition that persisted into my teenage years. This fear of mine, however irrational, was very real to me. Fear controls far to much of our lives. We let our fears hinder our happiness or in my case my bladders relief. We can’t expel fear from our lives but we can use it for the positive.
I’ve been free from any spasms or paralyzations for about a month now and it has felt amazing. I was never officially diagnosed with anything and I may never know what was causing all these problems. Since November I have seen a Neurologist, Psychologist, Psychiatrist, and an Opthamologist but none have been able to tell me what I have. This not knowing has created a fear that my spasms may come back. A scary fact to me is that people with Dystonia can have a two year period where their symptoms subside but then return just as strong. With my condition being some what like Dystonia, it makes me wary of being too excited about my recent progress. I’m afraid that everything may come back, I’m afraid I could lose my independence again, and I’m afraid of burdening people with my pain. So do I let this fear control me? Or do I make something positive out of the fear? These fears are not all bad because they push me to live my life as fully as I can. It’s all about being able to discern between healthy and unhealthy fear.
Fear keeps us from deciding to attack a bear with our bare hands. Fear keeps us from streaking butt naked through the White House. Fear keeps us from ignoring all the problems in our lives. Fear pushes me to not become complacent in every aspect of my life. This fear of my spasms and paralyzations coming back is not necessarily a bad thing. I’ve learned it is alright to be afraid. However, it is not alright to let fear cripple me from pursuing my happiness. I’m afraid, but I’m going to use it to better my life.
I once was asked what my greatest fear was. I told the person asking that my greatest fear was living uninspired, without a passion, but that answer could be the farthest things from the truth. I’ve realized that I was actually afraid of living my life with passion. When you’re passionate about something you put your whole heart in it and devote your time to it, constantly trying to better yourself. Living my passions requires me to be less lazy, to work for something, and putting my whole heart into something that others may never understand. With everything that has happened in my life, I am reminded to consistently focus on what fulfills me. Fear has it’s place but if it makes me complacent then it needs to be removed from my life.
I am working on making the ideal of living my life passionately, a reality. I may be afraid of my condition returning but I won’t let it be a detriment to my life. I can’t expel the fear but I can become a better person because of it. This fear of mine reminds me that I have to continue growing as a person. I don’t know what the future will bring but I’m making a pledge to never let fear keep me from happiness. I will not be beaten down by the fear of uncertainty. I will face my fears both rational and irrational. I’m ready to start embracing the fear that pushes me to be a better person. Will you join me?
Whenever you face pain and hardship in your life you either adapt and deal with it or you give up. Giving up lets the pain dictate your life. You shut yourself away from happiness, hope, and love. The problem with having a disorder that no one really understands is that people want to help but they don’t know how. Your pain puts a hole in the hearts of those you love. When going through pain it is important to remember the emotional burden that the pain is putting on those around you. This idea of putting others in pain because of my own pain has been bothering me more and more lately.
I don’t like hurting other people, especially those that I love. When I see someone close to me in pain, I feel that pain as well. More and more my disorder has been hurting more than just myself. It has affected those that love me and are the closest to me as well. It is the curse of compassion. The curse of love. I don’t want to hurt the people I love and the worse part is this disorder causes them pain which is worse than the physical pain it inflicts on myself.
When trying to figure out a way to make my disorder less of a burden to others, I have thought about what it would be life if I wasn’t around. Would being gone cause less pain? Perhaps that would stop their painm but that’s not a real solution. The pain of being gone would open an even greater hole in their hearts. Disappearing from someone’s life is the easy way out, it is giving up. When going through pain, I have to remember that there is beauty in pain.
Beauty can be found in pain because it gives you the opportunity to see who really cares. It lets you be more vulnerable, which opens you up to let others into your life. The beauty of pain is that it lets you solidify relationships that may never have been as strong if you had proceeded through life without any hardship and struggle. Pain gives you the opportunity to meet new people and connect with those that feel the same way you do.
There is no way to make people stop hurting because you are hurting. However showing that you control your pain can help. The greatest ways to help others when you are hurting is to recognize the love that people are showing, to show them that you have hope, and to approach life joyfully, which shows that you truly have love and hope in your heart. Realizing that people love you gives a special value to your life and another reason not to give up. Having hope allows you to control your pain and not be controlled by it. Living joyfully not only helps yourself but also others. Living joyfully remind people that there still is hope and love in this world no matter the hardship. I will live my life with Love, Hope, and Joy in my heart and honestly thats the most I can do.
About a week ago and a half ago I was just minding my own business, sitting in the passenger seat of a car and listening to Taylor Swift on the radio (not my choice), when I started to feel weird. My eyes started to close on their own and I felt a strange feeling on the back of my neck/head. Then I realized I couldn’t move the entire upper half of my body except for my right thumb. As well as not being able to move I couldn’t speak either. All my muscles decided to shut down on me and I really had no idea why. Luckily it wasn’t painful like most of my other attacks, it was only scary. Scary and then very, very, boring.
I had never experienced paralysis before and I had no idea how long it would last. Only being able to communicate with my thumb for the rest of my life would have been incredibly tedious. The prospect of having to be helped getting up, eating, going to the bathroom, bathing, and whatever else was not very appealing. The whole event scared me to say the least. I didn’t know if I was going to stay paralyzed for the rest of my life and or if paralyzation was going to be the new form of my disorder. As the hours passed with me not being able to move, my fear gradually changed to boredom.
Not being able to move or speak is absolutely boring. I laid in a bed and just stared at the ceiling for 45 minutes. I couldn’t get up to get anything for myself and I couldn’t have a real conversation, except through typing notes on my iPhone. It’s odd, when I had complete control of my body I had little desire to be productive but while I was paralyzed, all I wanted was to go do something!
I am happy to say that I’m no longer paralyzed, the whole episode lasted for about four or five hours and it hasn’t returned in that strength since. From this experience I’ve drawn out two lessons that I hope to apply to my life. Remembering to have faith is key when faced with the emotion of fear. You have to have faith that your life will get better when facing obstacles. The obstacles can range from being paralyzed to failing your last math test. The faith that there is a better life ahead of you will keep away from that overpowering emotion of fear. Letting fear dictate your life will leave you feeling unfulfilled and really isn’t that what we are searching for? A real sense of fulfillment. The second lesson I learned is to take advantage of your life while you have it. You never know when something could happen that leaves you without the abilities you generally taken for granted. Now that I’ve seen what my life would be like without the ability to speak or move, I know that I can never live my life bored. Boredom is a wasted state of life. There are so many things that can be done in this life and I don’t plan on boredom being one of them. I plan on living fulfilled.
Throughout the last few months I have had to learn to cope with this strange disorder. I am at the point now in my life where I can say that I hate everything about the disorder. It can be at its least a great inconvenience and at its worse a whirlwind of pain that completely immobilizes me. But I can say there have been positives to having this disease. It has taught me a great many things with one being the importance of relationships with friends, significant others, and family.
I will be the first to admit that prior to this disorder I was living my life very selfishly. I was trying to do everything by myself. I didn’t see the need for other human beings in my life and I really didn’t care if I hurt anyone by taking that path. I forgot about how my decisions were going to affect others. People’s feelings be damned I was going to do what I wanted to do because I wanted to be happy. In that process of self-centeredness , I pushed away people who were the closest to me. I pushed away a wonderful and caring girlfriend, now ex-girlfriend, which I regret every day. It is rather hard to keep a relationship when the only person you care about is yourself. I also pushed away family members, namely my mother, who could see the self absorbed path I was taking and who tried to stop me from taking it. But when I’m the most important person in my mind, then why take advice from someone else?
I am happy to say that I’m not like that anymore. You see I experienced one of the most important things that a human being could ever experience. I was a recipient of an act of completely unconditional love. When my disorder first manifested itself, it hit like a seizure and sent me to the hospital at around midnight. I was scared that night to say the least as losing control of your body is not exactly a calming experience. I quickly discovered it was easy to do everything yourself when nothings wrong but it’s a lot harder when things don’t go according to plan. I was alone in a hospital at 12 in the morning with my family 5 hours away and suddenly I didn’t want to do everything myself. I wanted someone to be a part of my life. My disorder opened myself to the idea that someone else could be a part of my life. That I could make my life apart of someone elses. This is where the act of unconditional love comes into play. My best friend came to the hospital at 1 in the morning to be there for me. This best friend of mine also happened to be my ex girlfriend who I had broken up with in that past month because I didn’t see where she fit in MY life. Regardless of how much I had hurt her, she came to that hospital to be with me. She came so that I wouldn’t be alone and because she honestly cared about me. She stayed with me till I was released at 4 in the morning and then took me back to her place so that I could sleep a couple hours before my parents came to pick me up. By the time I said goodbye to her I saw the love she had for me and I realized that for the past few months I had never given it back. I only had loved myself. As a best friend and boyfriend I had been pretty crappy. I did not deserve a minute of her time that night but she gave me all of it.
Since that day I have begun to take steps away from being so self centered. To let other people into my life. And to remember that people love and care about me. I have learned to put you before I. This disorder has taught me two important rules about finding happiness on this earth. Remember that you are not the most important person on this world and appreciate the people in your life. I’ve tried following those rules and guess what? I’m happier than I was before this whole disorder began. The disorder, in itself, may not have helped me much, but it gave me the opportunity to gain a new perspective on life. I now understand the importance of loving others more than loving oneself. It’s one of the most important lesson’s I’ve ever learned and I hope now to show others that I love and care about them.