I’ll Always See Them Both As Heroes

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Our trivia started as a way we could give back to ST/Dystonia for all the help and support we have gotten from all of you over the years. Our nephew told us of a community club in Iowa who held monthly trivia fundraisers. We were intrigued, played and loved it. We held our first one in 2003. Teams of 8 collaborate to answer 10 rounds of 10 questions from 10 different categories ranging from sports, music, movies, potpourri – just about anything. Answers are put on a provided sheet which is collected and given to our judges to correct, and then our reader (Roger or our friend, Loren) gives the correct answers. We usually have 5 mulligans, where you can use a sticker on an answer you don’t know, and it’s counted right. We do a 50/50 raffle and a raffle on a special item, and also give away door prizes. We sell chili, hot dogs, and drinks, but tables are allowed to bring their own snacks, too. It costs $10 per person to play, and the winning team gets a blue ribbon and double their money back. Second and third places get a ribbon and a small prize. As fundraisers trivia has become very popular in our area so we do ours annually, usually in the fall, and play at others to help support their causes as well. We could not do ours without the help of family and friends many of whom have been with us from the start helping wherever we need them to that night. There is lots of laughter and fun.

Since we are all in this battle together, folks, any small thing we can do to help one another until that blessed day when a cure is found is vital. A lot of little things can add up to huge things.

So many of you already do such wonderful things, and we encourage any of our ST family who has an idea, whether it be a fundraiser, getting the word out or whatever, please take that step and act on it. We’ll be that much closer to our common goal – a cure!

Like many of you, my family and I have been struggling with this dystonia for many years. Since our three grown children were about 5, 9 and 13 when my dystonia began, I thought their perceptions, may, in some way, help other families. With that in mind, I asked if they would each write an article relating how my having dystonia impacted their lives – good or bad. They readily agreed. When I read what they each wrote, I cried. I learned some things I didn’t realize and could have, perhaps, relieved some of their fears back then. We often read about the ST’r story but not a lot from family members who suffer right along with us in their own ways, oftentimes, in silence. Thank you for allowing us to share their articles with you. I would be remiss if I didn’t mention that Roger’s two older sons – my stepsons – and their families have always been very kind and understanding, also, regarding the dystonia. We are so proud of all our children. To us, they are simply, the best!

(Ryan’s article)
When my mom first asked me about writing an article about the affect of her ST on me, I welcomed the idea. After all, it was something I have thought about doing before. I had even jotted things down on paper before this and have also wondered (and worried) about whether my siblings, I, or any of our children might get dystonia. I thought writing about it would be quick and easy for me. It has been neither. Just like I remember when I was a pre-teen, writing this article has made me recall all the emotions I felt then and many I still feel now. I know the perspective is different for me now from that of my younger siblings, mainly because of age, but also because I have lived on the west coast now for almost nine years. Up until just recently all of my family was still in the Midwest.

As the oldest of the three children in our immediate family, I would think it is natural for me to remember the most about the onset of my mom’s ST. Several instances stick out in my mind. Here is what I remember: I remember my mom upset in the living room, very stressed trying to get her secretarial work done for the school. It was becoming harder and harder for her and none of us had any idea why. I remember her having to stop on many occasions and try to regain composure just to finish the attendance register she was doing for the grade school. I remember holding her hand on the couch while she burst into tears when no one else was around and she was overcome with emotion. Those times were the hardest for me. I felt scared, sad, and completely helpless. I wanted to run away because I did not know what to do, or what was wrong. Neither did she. I couldn’t wait for my father to get home. I remember being terrified that something would happen while he was at work and I would not know what to do. I remember being surprised, sad, and also confused when my mother quit her job at the grade school. It was a very difficult decision. It was a job I know she enjoyed. I remember many doctors’ appointments, medications and a few hospital visits. All of these seemed to go nowhere and the frustration and uncertainty of it all weighed heavily on mom and dad. I remember not being able to understand why one of these doctors or specialists couldn’t figure this damn thing out and prescribe some medicine or give a shot to my mom so she could get back to “normal”. I remember being both sad and angry when my mom told me she may not be able to go to one of my sports awards nights because of how uncomfortable and self-conscious she was. I remember sitting in the back of the church and being angry with God for my mother’s condition, questioning my faith, and wondering if praying would actually do anything to help. I can remember watching my mom sleep, and wondering (as I still do) why she does not have a tremor when she is resting. It is so frustrating to see her fight it during the day and then watch her sleep or rest and seem like nothing is wrong. I can recall overhearing the often emotional discussions my parents had when they thought we kids were asleep. None of us knew what it was, what to do or what was going to happen. I don’t know that I’ve ever told anyone this but there was a time when I had frequent nightmares about my parents getting divorced. Thank God this never happened but I remember waking up overwhelmed with anxiety about something that wasn’t even real. I remember tough times for the family, whether emotional, financial, accidental or any other of life’s curveballs being made more difficult on my parents because of mom’s ST. That last memory is where I stop for now. Because, I want to say something about my parents.

I am certain my sister, brother and I all feel the same on this one. I marvel at how my parents have dealt with this horrible condition. My mother has shown amazing strength and courage, to say the least, in dealing with ST. It has been, and continues to be, emotionally and physically draining for her. None of us truly know what she goes through on a daily basis. My father has been incredibly strong as well. He has been there for mom from the beginning with a love and support that was tested I’m sure many times but never failed to be there for her. The strength and resolve both my parents have shown throughout the years in dealing with ST is a true testament to their character.

I have written a lot in this article about the things I do remember. I would like to close it out with some things I do not remember. Despite all the things a family deals with growing up, I do not remember missing out on much. I do not remember my parents missing any sporting events, activities or anything that was moderately important to me. I do not remember missing out on family times, vacations, birthdays or holidays. We did all those things and more. I remember my childhood very fondly. Sure there were ups and downs, but overall I am happy when I recall those times. The reason I feel that way is almost entirely because of my mom and dad. We grew up in a great neighborhood with lots to do, many kids to play with and great parents. They say you can’t really appreciate all the sacrifices your parents made for you until you yourself become a parent. I am a single father with a four year old son and I couldn’t agree more. Love isn’t the question, but if I can show half the patience and understanding with my own son that my parents showed me, I will consider myself a great parent.

In conclusion, my mother‘s ST obviously affected every member of our family. For me, I believe my quick temper, lack of patience and ability or inability to handle major stresses was influenced by my mom’s condition/disease. You don’t always realize things until you look back. The more I compare the feelings I had back then to the feelings I get now when having to deal with problems, the more I see a correlation between the two. If anything, dealing with something like a loved one having ST, should make you appreciate what you have, not take things for granted and realize what is really important in life.

(Lisa’s article)
I just remember that everything changed so quickly. It was like one day everything was fine and the next day it wasn’t. I’m sure for my mother it happened over a longer period of time and that she gradually started to notice different symptoms, but for me it was so sudden and out of the blue. It was so difficult and I remember feeling so sad and I just wanted someone to find out what was wrong with her and give her something to fix it. You know, from a child’s perspective that is how it works. When you get sick, you wait it out a few days, or go to the doctor and soon you are well again and for me, that is what I thought would happen. When it didn’t, I was confused and I was angry.

There are a few memories of when this happened that are still very vivid in my mind. I remember being at my grandma’s house and hearing everyone talk about taking mom to the hospital. I remember her being in the hospital in the psychiatric unit for a week and thinking to myself that she didn’t belong there. They kept telling her it was all in her head, and even as a child, I knew they were wrong. She knew they were wrong, too, and so did the nurses. I remember her being very sad, and who wouldn’t be, if no one could tell you what was wrong. I remember her coming home from the hospital and my grandma staying with us to help out. I also remember my mother collapsing once on the floor and I think it was just because it had all become too much to bear in that specific moment in time. I remember that my younger brother thought she was going to die and, most of all, I just remember wanting so badly for things to go back to the way they had been before all of this. After awhile, I became very resentful of her and thought she should be able to fix it. At the time, I didn’t know that what I was feeling was resentment. All I knew was that we weren’t doing the things we had done before and someone needed to be held accountable. Why, my mom, I remember thinking, why us?

After awhile it just became a part of our lives, but to say that it did not impact our lives would be an understatement. Later, in my teen years, I felt the need to push any relationship away because if I didn’t let anyone get too close, then it wouldn’t hurt so bad if something unexpected were to happen.

As an adult, and looking back, I view it a little differently than I did back then. Do I wish she didn’t have this condition? Of course I do. But, there are a lot of things that we learned and gained from it too. First of all, my parents showed us kids the meaning of “in sickness and in health,” and I think it has made me cherish the meaning of marriage more. I have so much admiration for my father because of the way he was when she became ill and because of the way he still is today. In times when it would have been so easy just to give up and walk away, he stood beside her and together they still endure the battle. It has taught us children that marriage isn’t always easy and that it isn’t always a fairy tale, but two together are stronger than one alone. Secondly, it has shown us that life isn’t fair. Unexpected things are going to occur and, unfortunately, they can sometimes be things that are out of our control. Sometimes there are no answers and that’s just the way it is. Like it or not, that’s how life works. For my siblings and I, well, I always thought we were close and I think mom getting sick made us even closer. Even though we didn’t talk about it much as kids, I think we understood how the other was feeling and that was comforting. It still is comforting and we are still very close to this day. From the bottom of my heart I can honestly say that they are my best friends. We can still talk about my mom’s condition and we understand each other. I trust them and know that they will always be here for me.

The resentment I expressed and felt as a child eventually faded as time went on, probably sometime in early adulthood. There came a time when I realized that I didn’t blame her anymore, but, instead, I envied her will and her faith. I know she doesn’t know her own strength but I hope someday she will recognize it. She still has her days and we all do too. It’s the days when she is really crabby and irritable that I know are the days when her neck is really bothering her, and that makes me feel bad. I think of her on just a day when I have a headache or slept wrong and sometimes I have to remind myself not to complain because I know for me relief will come, and some days I honestly don’t know how she copes day in and day out. But then I remind myself that it is because of her faith and her strong faith makes my faith even stronger.

For a long time now, I have wondered if this would be my fate or the fate of one of my brothers or my own children and for awhile I wondered if I should even have children for fear that if I were to develop this condition I wouldn’t be able to take care of them. Like any other illness, I think it’s natural to wonder if it will, “get me too.” But recently, I went with her to one of her doctor’s appointments and had the chance to meet Dr. Auberle. I didn’t speak with him long but he said one thing that will forever stay in my mind. My mom introduced me and he said exactly what I had been thinking, “I bet she thinks this will be her fate.” Then he said that he didn’t think I had anything to worry about and I remember thinking how grateful I was that he acknowledged and eased one of my biggest fears. Here was someone who had never met me and yet had picked up on something I had been worrying about for years. I also remember thinking how glad I was that he has been taking care of my mom because it was easy to see how genuine he is and that made me glad for both her and for my dad.

In September I also had the opportunity to accompany my mom to the yearly symposium. It was a good experience, and it was an emotional one. For someone who loves to talk and chat I found myself just sitting back quietly trying to take it all in. It was so refreshing to see my mom in what I can describe as comfortable. I could see that, for once, she didn’t feel like an outsider because here she was among a group of people who had what she had and who could relate to what she was going through. She didn’t feel alone and this made me so happy. I’m so grateful to Howard for all he does and for planning this special event. It is so important to have a support group and a place where people can come together to share their experiences and offer each other a shoulder if needed.

They say that children can see right into the soul of someone and I think this is true. Yes, all three of my children have asked about my mom’s condition and my three year old daughter even told her that, “it’s o.k., papa (grandpa) can fix it.” But they don’t see her condition, period. They know she has it and that right now, it’s not “fixable,” and that answer is enough for them. They don’t see her as different from anybody else. All they see is their Nini/Grandma, who spends time with them, plays with them and loves them unconditionally.

I have become a firm believer that all things happen for a reason. It is the only way I can cope with her disorder and life’s battles and the only way that I can cope with knowing that she and my dad have had to cope with this for so many years. I don’t know why she has torticollis and I wish I had that answer. Better yet, I wish I had a cure. Some day I will find out, after I leave this earth, why this experience hit our family, but until then, I will just continue to love her for everything she was and everything she has become. I admire my mom for her strength and her outlook and I admire my dad for his patience and for taking such good care of our family. They are two rare souls and our family is so blessed. Torticollis or no Torticollis I will take my family just as they are. That makes us who we are and I would never want to change that.

(Reid’s article)
Up until my college years, if someone would have asked me how my mother’s onset of ST affected me, I probably would have said not much. After all, I was only in Kindergarten at the time so I couldn’t comprehend anything more complex than finger painting anyway. However, as I got older and really took note of a few emotional problems I had not addressed before, I realized just how big an impact my mom’s onset of ST had on my psyche. I used to suffer from frequent anxiety attacks, and, for a long time, did not want to share any emotional connection with people outside of our family. However, I think the causality behind my problems wasn’t necessarily my mom’s ST, but rather the extensive length of time it took before she was diagnosed correctly. As a child, the idea of some physical ailment suddenly striking my mom seemingly out of nowhere coupled with the fact that it remained unknown in both name and severity for so long just terrified me.

I was never lacking for friends, or even relationship opportunities, but to people outside of my immediate family, I held an emotional distance. Sadly, once I grew into young adulthood, I became aware of this issue, but had never taken the time to figure out the reason behind it. It was only after a girl I had been seeing told me she could no longer be with me because of how closed off I was did I begin to truly explore and work to fix my unhealthy mentality. Along the way to “recovery” I had some enlightening moments. None more so than the first time I really took an in-depth look about how my mom’s ST affected me and our entire family. That was when I first connected the beginning of my problems with my mom’s onset of ST. It also led me to a new appreciation for something else.

I had not realized before just how well my parents handled everything during that difficult time. As stated earlier, I was in Kindergarten when my mom first started showing signs of ST. However, it took 7 long years for her to finally be diagnosed correctly. During that time, between the countless doctor appointments, prescribed medications, and even one or two extended hospital admissions my mom faced, I probably knew the least of what was going on because I was the youngest. But overall, we were all in the dark. My siblings and I had many unanswered questions, but sadly, my parents had the same ones. I appreciate that my parents tried to be as honest as they could have been with me and my siblings, but what were they supposed to tell us, when they didn’t have answers themselves?

I see now that raising us kids, stressful enough as it was, was made that much more difficult for my parents. There was my dad, probably feeling much like I did as a child, helpless, just wanting mom to get better. There was my mom, dealing with these painful muscle spasms that would eventually become constant. I still remember seeing her cry at different times when I was young and how sad that makes me now, because it must have been (and still is) so physically and mentally draining for her. I try to keep that in mind (what she has to deal with everyday), but regretfully, I’m sure I’ve taken it for granted sometimes.

In retrospect, my mom’s ST affected me and our entire family in major ways I had not thought about before. My siblings and I had to make adjustments because of it, but I think my parents made even greater adjustments. However, I think we were still pretty normal. We had typical family “happy” times and we had typical family fights/arguments, but we stayed and continue to stay close to each other.

Finally, two things strike me as inspirational: the strength and courage my mom showed and continues to show with her ST, and realizing my father was and still is right by her side. Because, even with all that added weight on their shoulders, they somehow managed to keep it (and our family) together. For that, I’ll always see them both as heroes.

I've found your web site the most helpful of them all. The way it's written really has helped me. Kristi, New Zealand