Megan Again: Getting Better
By Megan Wirts
“Be more positive Megan”, is something people started saying to me when I started showing symptoms of dystonia and when I hear it, it does not make me want to “be positive”. It is a common phrase that many people with disabilities and chronic illnesses hear.
When you tell a person with a chronic illness that they aren’t being positive enough, that they need more joy or to think happy thoughts, they hear you telling them that their illness is their fault. You are telling them that they aren’t trying hard enough or that they are the problem. You might not intend for them to hear it that way, but that is always what it sounds like. I can smile all day long, but I will still have dystonia.
What can you say instead of “be positive” to a chronically ill or disabled person? How about...
...“I can’t imagine the pain you must feel, how can I help?”, “I love you even when you are sad (or any other feeling besides happy), it’s okay to not be happy all the time.”, “I don’t understand or know about your illness, but I’m willing to learn about it.”, or “I made you this cheesecake.”
Even saying that you don’t know what to say is better than saying, “be positive”.
I am an optimistic person. Anyone that knows me will agree. I am the kind of person that can take a negative experience and find a way to make it a positive one. It doesn’t mean that I am not fully aware of all the negativity, pain and hurt in our world. I have seen it. I spent years working in the intensive care units of a hospital. I saw people with incredibly positive attitudes not make it out of the hospital. I also saw grumpy and pessimistic people heal and continue living their lives. I witnessed sorrowful moments, but I also was there for some amazing and wonderful moments and those are what I focused on. It wasn’t a denial of the suffering that I saw, it was acceptance. There is going to be pain and suffering in the world, but if we only focus on that part, our existence would be miserable. We can’t ignore it though. We must accept it and learn to carry the pain.
I have experienced my own personal pain and struggles and one way I carry it, is to talk, write and even laugh about it. I share my experiences for a multitude of reasons, some are selfish reasons and some are not. Being vulnerable is scary, but it’s also liberating and cathartic. I try not to complain that often and I like to share the good things in my life, because that is what I focus on. Sometimes, I am not happy though. I am human, after all. I get sad, angry and frustrated and I let myself feel those feelings. Sometimes, I do need to complain. Everyone needs to vent and rant a little bit. I can be a bit of an angry and bitter ray of sunshine sometimes. Nobody can be positive and happy 100% of the time. People that pretend they are freak me out and I feel like they are hiding some sinister secret. They are probably serial killers or leaders of a cult.
When I share though, I am allowing other people to have an opinion about my life. They are going to form ideas about what I should or should not be doing and that’s fine. However, some of those people will send me messages or call me, to tell me that I just need to “be more positive” (among other things) and it’s annoying. I get it, they want me to live my best life. I understand that, but it makes me feel as if they didn’t take the time to get to know me or understand my situation at all. It also makes me want to punch them in the throat. I won’t actually do that, but I will imagine it and it will make me smile. See, happy thoughts.
I recently received a message from someone that said I should buy the product they were selling because it gave them their joy back and that they had researched my disorder and this stuff was a miracle cure. The more I read it, my anger grew. Their message implied that I had lost my joy and that I hadn’t done my own research about dystonia. They were also feigning care and concern when I hadn’t heard a word from this person in over three years and the last contact I had with them was when they sent me a message to try to sell me weight loss shakes. It was obvious that they saw me as just another person they could take advantage of and pad their wallet. Also, unless it’s guaranteed to let me eat massive amounts of cheesecake without gaining an ounce or this product is a magical fairy that folds all my laundry, I don’t want it.
I will admit, I did not respond to this message with rainbows and butterflies. It was more like venom and rage. I was frustrated, annoyed, and it wasn’t the first time they tried to bamboozle me with their miracle cures and weight loss products. I had also just been told by two other people on separate occasions just days before this, that I needed to be more positive and happy, because if I did that then I would get better. I wasn’t even being negative or complaining about anything. I was just existing as I exist now, a person with a disability and chronic illness.
These people have a different definition of “getting better” than I do. There was a time in the past where getting better did mean that I should be healed physically and not have dystonia at all anymore. My desire to be physically healed was so strong and relentless that I was driving myself into a depression because I wasn’t getting better. I was getting worse.
I was trying everything. I took supplements and medications with terrible side effects. I went to the chiropractor, did yoga, meditated, prayed and let people lay hands on me. I saw holistic doctors, medical doctors, took strangely named herbs, drank concoctions that made me want to vomit. I even had brain surgery, twice. You name it I tried it and nothing helped me. When you are desperate you will try just about anything and unfortunately some people will try to take advantage of your desperation. The people that prey on individuals with real illnesses just to make a buck are some of the vilest.
My vision of me being better now isn’t necessarily me being physically healed anymore. I have accepted that I will have dystonia for the rest of my life and that I have limitations because of it. Do I hope that there will be scientific breakthroughs and advances in treatments for dystonia and that I might be cured someday? Absolutely! As a matter of fact, I have a comedy fundraiser for the Dystonia Medical Research Foundation coming up on May 24th at Dr. Grins in Grand Rapids, MI, in hopes to raise money for research and with that research maybe even a cure. You can buy tickets at www.thebob.com. See, there I am turning a negative experience into a positive one and having hope for the future.
The road to acceptance is long and hard. It is painful and never ending. I am sure that anyone that has experienced any major life change knows this road. It twists and it turns and once you think you are in on a straight and comfortable path, there is a sharp turn to the left.
My vision of getting better is me taking that left turn, accepting it and finding the good in the direction I am going now. I am focusing on healing my heart and grieving the deep losses that I have experienced since being diagnosed with dystonia. I know that it is hard for some people to understand that sometimes you don’t get physically better. It just doesn’t happen. Not everyone gets healed. The sooner we accept that, the sooner we can move on and live our lives. I just have to live my life with dystonia now and that’s ok.
I do want to get better. I want to be a better person. I want to be a better mother, wife and friend. I might not have a perpetual smile on my face, because that would be creepy, but I am getting better.
We all should be trying to get better.
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