I apologize for my absence in the past month. I will admit that while I am a good writer (or so my ego tells me), I actually dislike writing. I want to share things with you, but I find it hard to bring myself to do so. I will try harder in the future to post at least twice a week, for both my own theraputic sake and the benefit of my readers. (Also, please excuse any typos today, I have a big bandage on my middle finger from a sewing machine incident.)
I would like to talk about my progress. I will say that it is most important for me, than for anyone else, to recognize the progress I have made with my condition in the past year. My therapists, my family, and my friends may see progress, but I will not believe it until I personally see and feel it. And finally, I accept that I do, and I would like to share that with you.
Almost precisely on year ago, I graduated from college with a 3.7 gpa and an overwhelming depression that I was not yet ready to admit to. I came home and spent six months baking bread at a sandwich shop. For the time, it fulfilled my needs; I was on my own the whole time, basically set my own hours, and I could listen to my iPod while I worked. No coworker interaction necessary. That was the end of June. By the end of December, I could hear my coworkers' sniffles through my headphones, despite the 20 foot separation between us. I quit just before New Year's, with the intention of finally finding an occupational therapist, and maybe get some sewing done. Predictably, that isn't exactly what happened.
After months of searching, and extensive help from my talk therapist from high school, I finally found an OT who was even willing to accept a client older than the age of 20 (this was in January). Most of them deal with children only, but Kim was willing to take a chance on me. After three or four sessions, I was unhappy. I felt like we were simply talking and not moving toward any real treatment. I tried craniosacral therapy and the Willbarger brush, with absolutely no effect. Kim sensed my dissatisfaction and came up with a new approach: obstacle courses.
In the clinic that I go to, there is a room in the back that has a steel grid across the ceiling to support whatever you may want supported by a carabiner and a daisy chain. It's fantastic. There are things to climb on, climb to, flop on, and slide down. It makes me feel like a kid again! It's a playground and a therapy room at the same time. Kim had me climbing from one swing to another swing to a suspended log to a suspended tire, and more. I was exhilerated and exhausted at the end of our sessions, but it got me moving, which I previously had not been doing, at all. I had been a couch potato. Kim encouraged me to take a short walk every day (no small feat in WI winter), and I tried to hold to that, to get moving, to do something other than sit on the couch and watch TV every day. It was rather brutal, I will admit, but it was the start. My mom always used to say, "How do you eat an elephant? One bite at a time." So I started taking one small bite, and then another, and then another.
Kim actually had to give me a "tough love" speech after about a month. She told me that while the clinic was there for me if I needed help, and that they were a resource to guide me through this tough time, I had to do the work myself. I had been dragging my feet, completely unmotivated, and her chat with me that day had an enormous impact. I started making even the smallest of goals, like "I'm going to visit the YMCA by March." (I made it by the middle of February!) I had to learn to make small goals, and take small bites of the elephant, before I could take on the big issues, like housing and a job. I still haven't conquered those two, but I have hope now. I didn't before. By December, I had lost all hope of a vaguely normal existence, and today I truly believe that I can. I do expect more difficulties to come, but I believe that I can face them, and overcome them. Kim helped me realize that the small accomplisments DO matter, and sometimes focusing on the smaller picture can help you work toward the bigger picture. Through therapy and friendship, my OT Kim has helped me probably more than she can possibly realize.
Along with obstacle courses, my therapist suggested craniosacral therapy, The Listening Program, and yoga. While craniosacral therapy works wonders for some, it didn't seem to seem to do much for me. The Listening Program was a little helpful and helped me de-stress on occasion, but no fireworks. However, yoga has been my lifesaver. In the beginning, and still now, I go to an hour and a half session twice a week, and I started in mid-January. In the beginning, I took private lessons. I was too wound up about the possibility of another person in class making a noise that I wouldn't be able to handle, while I was trying to focus on my body positioning. Therefore, I took private lessons, and my instructor was wonderful. She is an accepting, non-judgemental person with a very positive attitude towards everything. Perhaps due to her wide perspective and open personality, she reminds me of my mom, which makes me very comfortable around her. After about two months of classes, she asked if I was willing to try having another person in the class, someone I was comfortable with. She suggested my OT, but instead I invited my mom to come to class with me. I had known that she didn't know much about my therapy, yet was being very patient with me, and I extended an invitation knowing that she would see it as I did: an invitation into my world, a chance to be with me while I attempted recovery. She was also interested in yoga, and we had taken a class together when I was in early high school (when my symptoms weren't as bad), so I suspected that she would accept. She came to several sessions with me, and still occasionally does, but it opened the door for me.
Not too long after that, my instructed suggested I try a group class. Since the beginning, she had been offering that as an ultimate goal, but at that point I had been too scared and too closed off to even consider it. When she suggested it again after a few months, I thought I ought to give it a shot. I couldn't have imagined such a change in attitude in such a short time. The class has 2-4 women, plus my instructor, twice a week, and I've been attending group sessions at least once a week for the past month. I am astonished that something I imagined as impossible 6 months ago would now be part of my regular routine.
I had class today, and I got farther into the splits position than ever before, and I did a handstand against the wall with only minor assistance. These are not things we do all the time in yoga, but they illustrate my progress in my practice. I was terrified of trying a handstand a year ago, in any form, and the splits were not even a remote possibility. Now, instead of disliking the Warrior series, I enjoy the challenge of 2 and 3, and am still working on 1. (For those of you who know anything about yoga.) I have become aware of and comfortable with my body, its movements, and its positions, and have gained strength I didn't know I had, both physically and mentally. I view my physical progress in yoga as a reflection of my mental progress in both yoga and therapy. I can now calm myself with breathing techniques, and I haven't felt this good in years.
Not only that, I went to the grocery store today. Not a big deal for most people, but I generally avoid it. I only ran in and out today, but I didn't put my earplugs in, even when waiting in line, and the same at PetCo yesterday. This is enormous progress for me. I must realize that even though they each may be baby steps, I am taking another small bite out of the elephant, and eventually, I will eat it all. I may never be cured, but I can function, and I must remember to count my blessings.
For instance, my mother. I could never thank her enough for the support she has given me over the years. She has always believed me, even when I was 13 and despite my mild symptoms, she believed my claims that something just wasn't quite right. She has always been looking and searching for answers, and indeed it was a book she purchased that gave us the answer we were looking for, almost 10 years after I knew I was different. Through my lowest points, which involved smashing a few pieces of small furniture in my bedroom, she has been right beside me, and not in my wildest dreams could I have imagined a better mother. She would (and has) gone to the ends of the earth for me, and unfortunately I don't tell her enough how much she truly means to me.
Today, I am thankful. I spent a little yet quality time with my beloved mother, I made progress in yoga, and I went to the grocery store. I worked on my current sewing project, played with my cat, and greeted my brother who is visiting from college. I did things any normal person would and can do, and my world is still expanding. I can be nothing but thankful.
Thursday, June 30, 2011
Friday, June 3, 2011
The Normal One
I was wandering through Barnes & Noble one day about a year ago, and I meandered into the psychological/mental health section. I wanted to see if I could find anything for myself; alas, they didn't even carry Too Loud, Too Tight, Too Fast, Too Bright, which is pretty much the only adult SPD book that I have ever been able to find. As I was perusing the shelves, I saw a book called The Normal One. The author grew up with a mentally ill sibling, and as such, was labeled "the normal child." That was the first time I realized how much my condition may have affected my brother.
He is two and half years younger than I am, and as I grew, my problems arose, and my family dealt with it the best they could, since we weren't to find the answers for 9 years after my symptoms arose, and another 4 years until I was properly treated. My family tried to be accomodating, and for that I am eternally grateful.
My mom went on a quest for the answer. My dad understood something was wrong, and tried to work around it. I talked to my mom frequently about it, and I used to butt heads with my dad all through adolescence, and still now from time to time, but I believe that is because we have such similar personalities, and had nothing to do with my sensitivities.
My brother, however, didn't really know what was going on. If I asked him to please blow his nose, he would, no questions asked. Our 2nd floor has three bedrooms and a bathroom with two sinks and plenty of storage space; it was intended to be for Mike and me. After about three months, I basically kicked him out of the bathroom. I couldn't handle getting ready for school in the morning with him in the bathroom with me, washing his face and brushing his teeth and doing other perfectly normal morning hygiene activities. It drove me batty, and after my freaking out a couple of times, he started using the basement bathroom. Shortly thereafter, he moved into the basement bedroom too, so he didn't have to use two flights of stairs just to get ready in the morning. I didn't want to evict him from the bathroom, but in the morning I am especially sensitive, and we would even eat breakfast separately.
My "den" as I call it, my TV, computer, and sewing room, is called the bonus room because it is directly above the garage. This means it is right next to the driveway, where my athletic brother wished to play basketball during the warm months. The repetitive bouncing of the basketball was all I could hear, and I couldn't "tune it out" like everyone told me to. It happened almost daily, and I know on many occasions I stuck my head out the window and screamed at him, sometimes escalating to profanity. He would yell back, and eventually we had to work out a system that he could play ball for a few hours a day, during which I would hide somewhere else in the house.
He took all of the crap I threw his way, and accepted that it was part of who I was, even if he didn't understand why I was behaving so. To this day, he has never mocked me or teased me (well, about my sensitivities, anyway), which I took advantage of, and it wasn't until recently did I really appreciate that about him. Many siblings could have been cruel about it, as many of my classmates were, but the worst he ever teased me about was my haircut or the guy I was dating, which is normal sibling behavior, in my opinion. Around the time I started high school, we started to drift apart. As children, we played together all the time with dinosaurs, Thomas the Tank Engine, board games, and baseball in the summer, etc. For the past few years, I have been wishing that we were closer, and I know that our distance is personality related. He is an athlete, a football player, and my passions have always been craft related, and then I went into theatre. We live in two different worlds. But that doesn't mean we can't be friends, and I realized that if I wanted a closer relationship with my brother, I should initiate it.
Through my treatment, I've improved to a mental stability to share my condition with others. I used to be extremely prideful, hiding it from everyone. In the past week, I have posted many things on Facebook about SPD, including the simple admission that I have it, which may have been the hardest step. I also shared this blog on Facebook. I have had many discussions with my mom and my best friend about my sensitivities, and one or two with my dad, but I realized that I have never talked to Mike about it. The other night he came up to my den (I owed him $5), and when he came up, I talked to him. He sat and listened for a half an hour while I explained my condition to him, how it affects me, and my recent progress. We discussed the growing up, and the concept of his being "the normal one." He was an exceptional listener, and told me that he never felt that way; that I received more attention due to my issues than he did. He said he had always thought of my as just a bit quirky, and the reason we never would hang out was simply that we are two very different people, with which I agreed. He listened intently as I told him about this blog, and how already people from across the world were talking to me through this platform, and he thought that was incredible. I apologized for any hardship me and my condition may have caused him over the years, and he said he didn't think I had anything to apologize for.
Talking about your condition with those around you is important. I learned the hard way that while talking about it may result in confusion, lack of understanding, and sometimes mocking, but I also learned that not talking about it was nearly as destructive. It eats away at you inside, and it can be tremendously hard on your loved ones. Talking about it not only informs them, and may make your life easier. Sometimes, it means you are one step closer to a friendship with a distant sibling. Regardless, talking to my brother, and having him accept me for who I am and what I have, was so reassuring and comforting. My immediate family is so important to me, and I wanted him to know that. I love you, Mike.
He is two and half years younger than I am, and as I grew, my problems arose, and my family dealt with it the best they could, since we weren't to find the answers for 9 years after my symptoms arose, and another 4 years until I was properly treated. My family tried to be accomodating, and for that I am eternally grateful.
My mom went on a quest for the answer. My dad understood something was wrong, and tried to work around it. I talked to my mom frequently about it, and I used to butt heads with my dad all through adolescence, and still now from time to time, but I believe that is because we have such similar personalities, and had nothing to do with my sensitivities.
My brother, however, didn't really know what was going on. If I asked him to please blow his nose, he would, no questions asked. Our 2nd floor has three bedrooms and a bathroom with two sinks and plenty of storage space; it was intended to be for Mike and me. After about three months, I basically kicked him out of the bathroom. I couldn't handle getting ready for school in the morning with him in the bathroom with me, washing his face and brushing his teeth and doing other perfectly normal morning hygiene activities. It drove me batty, and after my freaking out a couple of times, he started using the basement bathroom. Shortly thereafter, he moved into the basement bedroom too, so he didn't have to use two flights of stairs just to get ready in the morning. I didn't want to evict him from the bathroom, but in the morning I am especially sensitive, and we would even eat breakfast separately.
My "den" as I call it, my TV, computer, and sewing room, is called the bonus room because it is directly above the garage. This means it is right next to the driveway, where my athletic brother wished to play basketball during the warm months. The repetitive bouncing of the basketball was all I could hear, and I couldn't "tune it out" like everyone told me to. It happened almost daily, and I know on many occasions I stuck my head out the window and screamed at him, sometimes escalating to profanity. He would yell back, and eventually we had to work out a system that he could play ball for a few hours a day, during which I would hide somewhere else in the house.
He took all of the crap I threw his way, and accepted that it was part of who I was, even if he didn't understand why I was behaving so. To this day, he has never mocked me or teased me (well, about my sensitivities, anyway), which I took advantage of, and it wasn't until recently did I really appreciate that about him. Many siblings could have been cruel about it, as many of my classmates were, but the worst he ever teased me about was my haircut or the guy I was dating, which is normal sibling behavior, in my opinion. Around the time I started high school, we started to drift apart. As children, we played together all the time with dinosaurs, Thomas the Tank Engine, board games, and baseball in the summer, etc. For the past few years, I have been wishing that we were closer, and I know that our distance is personality related. He is an athlete, a football player, and my passions have always been craft related, and then I went into theatre. We live in two different worlds. But that doesn't mean we can't be friends, and I realized that if I wanted a closer relationship with my brother, I should initiate it.
Through my treatment, I've improved to a mental stability to share my condition with others. I used to be extremely prideful, hiding it from everyone. In the past week, I have posted many things on Facebook about SPD, including the simple admission that I have it, which may have been the hardest step. I also shared this blog on Facebook. I have had many discussions with my mom and my best friend about my sensitivities, and one or two with my dad, but I realized that I have never talked to Mike about it. The other night he came up to my den (I owed him $5), and when he came up, I talked to him. He sat and listened for a half an hour while I explained my condition to him, how it affects me, and my recent progress. We discussed the growing up, and the concept of his being "the normal one." He was an exceptional listener, and told me that he never felt that way; that I received more attention due to my issues than he did. He said he had always thought of my as just a bit quirky, and the reason we never would hang out was simply that we are two very different people, with which I agreed. He listened intently as I told him about this blog, and how already people from across the world were talking to me through this platform, and he thought that was incredible. I apologized for any hardship me and my condition may have caused him over the years, and he said he didn't think I had anything to apologize for.
Talking about your condition with those around you is important. I learned the hard way that while talking about it may result in confusion, lack of understanding, and sometimes mocking, but I also learned that not talking about it was nearly as destructive. It eats away at you inside, and it can be tremendously hard on your loved ones. Talking about it not only informs them, and may make your life easier. Sometimes, it means you are one step closer to a friendship with a distant sibling. Regardless, talking to my brother, and having him accept me for who I am and what I have, was so reassuring and comforting. My immediate family is so important to me, and I wanted him to know that. I love you, Mike.
Tuesday, May 31, 2011
What is SPD?
I feel the need to include a disclaimer here: I am not a therapist, occupational therapist, or doctor. The descriptions that follow are simply my observations and conclusions that I have acquired through books, websites, and my own occupational therapist.
So, then, what is Sensory Processing Disorder?
Contrary to the beliefs of many people I have known, I am not crazy, bipolar, or schizophrenic. I do not have ADD or OCD. This is NOT a psychological condition, it is a neurological disorder. This disorder is frequently misdiagnosed, in children and adults, because it is not yet published in any manuals, such as the DSM-IV. It is also difficult to diagnose because it is often comorbid to a primary disorder, such as Autism, Asperger's, and Attention Deficit Disorder. I only suffer from SPD, though the effects of the disorder first caused an anxiety disorder, and depression later on. From what I understand, that is not uncommon.
To understand what this disorder is, a discussion of normal sensory processing is in order. Sensory processing involves several steps. A person will look at a bird, and the image of the bird is transmitted to the brain, and then the person conciously registers that they are looking at a bird. The same applies to all of our senses. Our bodies take in the sensory information and the brain proccesses it. At every moment of every day, every person is bombarded with sensory input. Therefore, the brain filters out anything that is irrelevant; for instance, the color of the house you just drove past, or the whirr of the ceiling fan. The brain draws your attention to what it deems important; for example, the car in front of you hitting their brakes, or your boss giving you instructions. There is simply too much sensory input for us to consciously process, so our brains quietly do the work in the background, and we only are only conscious of what it deems relevant. This is how the brain is supposed to work.
For a person with Sensory Processing Disorder, the process is a little different. Our brains take in the sensory information, and somehow it gets garbled on the way to our conscious thoughts. We take in the sensory information, and our brains don't properly determine what is relevant input and what isn't. Let's say you're in a conference room with your boss. You really really want to pay attention to what they are telling you, but all you hear is the loud whirring of the fan, or see your coworker jiggling their foot, or the sound of pages of paper being turned. Sensory "triggers" and the degree to which they affect a person are different for everyone, but the concept is the same. The brain determines that ordinarily irrelevant input is important, and brings it to the front of our consciousness, so that we can't ignore it. Unfortunately, this makes it very difficult for us to pay attention to what actually is important, and then the brain has another reaction.
It floods your system with adrenaline. These irrelevant sensory inputs are so distracting, they can be even physically painful, and your body goes into its primal fight-or-flight mode. Some children get into trouble for causing fights in school due to their inability to understand why they feel that way. If I am in an extremely uncomfortable position, I must GET OUT RIGHT NOW. Or I may do something I regret to stop the offending sensory input. I have found a way to escape without physically leaving; foam earplugs. They are amazing for shopping, and helped me focus on tests in school. I also rejoiced the day I got an iPod, because they are socially acceptable ways to remove yourself from the outside world. I went to college in Chicago, which has a fantastic public transportation system, and half the people on the trains and buses were listening to their iPods. It was the only way I was able to use that transportation. (Hence, the title of my blog.) Unfortunately, sometimes escape is not an option. Sometimes you are conversing with someone who is talking so loudly it makes your ears hurt, or you are in a room with bright flickering lights that give you a migraine and make you want to scream. Again, it is different for everyone.
SPD is not a chemical or hormonal problem in your brain. I like to say it's a wiring problem. Due to this, psychiatric medications or traditional forms of treatment do not affect SPD. The only drugs that make a difference are benzodiazepines, but they are a crutch to be used when in sensory overload. I used to have a prescription for Valium for when sensory overload sent me into a panic attack. However, it was not an answer to the problem, it was a bandaid for the side effects. It calmed me down, but still did not help reduce my reactions to my sensitivities. The only real answer is occupational therapy. Unfortuately, most OTs do not usually work with adults, and don't really know what to do with them in therapy. It took me three years and three OTs to find one that managed to get through to me (she was a godsend), and dozens upon dozens of rejection phone calls in between.
I am not saying that psychiatric drugs have no value in a course of treatment. While medications will not help SPD, they are extremely useful in treating emotional and psychiatric side effects of the condition. As I said, I have an anxiety disorder and a previously debilitating depression, which were a result of my sensory defensiveness. Occupational therapy does not treat those. My current "cocktail" is 75 mg of Zoloft, 1/2 mg Risperdal, and 2 mg Klonopin daily. I was in a deep dark hole and couldn't climb out, and my occupational therapy was only helping minimally. I finally admitted that I needed some chemical help, and now I am no longer a couch potato (well, not all the time). I have the motivation to get out of bed in the morning and do something productive with my day, and without my medications, I doubt I would be making the progress I am now. My talk therapist put it this way: I was stuck in a dark closet and I couldn't open the door.These drugs would help me push the door open, even just a crack, so that I could see that sliver of light outside and push my way out of that closet of depression. He was right. My progress in my occupational therapy and my personal life increased dramatically after a month on the meds. I have no intention of taking them forever, but I am willing to admit that I need them now, and will wean myself off of them (with my psychiatrist's supervision) when I feel I am ready. Whether it is 2 months from now or 2 years from now, I know these medications played a huge role in my ability to save myself, and I fully appreciate them for that.
So I have my daily "cocktail" and I also have my daily sensory diet, on which I will elaborate in another post.
I am putting my condition and my life out on the internet for all to see, and while I was nervous at first, I know I have already touched one life, perhaps more, and this just fuels my fervor to continue this blog and continue spreading the word about SPD. So please, click follow on the right side, and pass this blog on. I also hope that friends and family of those who suffer from this condition will read, so that they may better understand what we go through every day.
So, then, what is Sensory Processing Disorder?
Contrary to the beliefs of many people I have known, I am not crazy, bipolar, or schizophrenic. I do not have ADD or OCD. This is NOT a psychological condition, it is a neurological disorder. This disorder is frequently misdiagnosed, in children and adults, because it is not yet published in any manuals, such as the DSM-IV. It is also difficult to diagnose because it is often comorbid to a primary disorder, such as Autism, Asperger's, and Attention Deficit Disorder. I only suffer from SPD, though the effects of the disorder first caused an anxiety disorder, and depression later on. From what I understand, that is not uncommon.
To understand what this disorder is, a discussion of normal sensory processing is in order. Sensory processing involves several steps. A person will look at a bird, and the image of the bird is transmitted to the brain, and then the person conciously registers that they are looking at a bird. The same applies to all of our senses. Our bodies take in the sensory information and the brain proccesses it. At every moment of every day, every person is bombarded with sensory input. Therefore, the brain filters out anything that is irrelevant; for instance, the color of the house you just drove past, or the whirr of the ceiling fan. The brain draws your attention to what it deems important; for example, the car in front of you hitting their brakes, or your boss giving you instructions. There is simply too much sensory input for us to consciously process, so our brains quietly do the work in the background, and we only are only conscious of what it deems relevant. This is how the brain is supposed to work.
For a person with Sensory Processing Disorder, the process is a little different. Our brains take in the sensory information, and somehow it gets garbled on the way to our conscious thoughts. We take in the sensory information, and our brains don't properly determine what is relevant input and what isn't. Let's say you're in a conference room with your boss. You really really want to pay attention to what they are telling you, but all you hear is the loud whirring of the fan, or see your coworker jiggling their foot, or the sound of pages of paper being turned. Sensory "triggers" and the degree to which they affect a person are different for everyone, but the concept is the same. The brain determines that ordinarily irrelevant input is important, and brings it to the front of our consciousness, so that we can't ignore it. Unfortunately, this makes it very difficult for us to pay attention to what actually is important, and then the brain has another reaction.
It floods your system with adrenaline. These irrelevant sensory inputs are so distracting, they can be even physically painful, and your body goes into its primal fight-or-flight mode. Some children get into trouble for causing fights in school due to their inability to understand why they feel that way. If I am in an extremely uncomfortable position, I must GET OUT RIGHT NOW. Or I may do something I regret to stop the offending sensory input. I have found a way to escape without physically leaving; foam earplugs. They are amazing for shopping, and helped me focus on tests in school. I also rejoiced the day I got an iPod, because they are socially acceptable ways to remove yourself from the outside world. I went to college in Chicago, which has a fantastic public transportation system, and half the people on the trains and buses were listening to their iPods. It was the only way I was able to use that transportation. (Hence, the title of my blog.) Unfortunately, sometimes escape is not an option. Sometimes you are conversing with someone who is talking so loudly it makes your ears hurt, or you are in a room with bright flickering lights that give you a migraine and make you want to scream. Again, it is different for everyone.
SPD is not a chemical or hormonal problem in your brain. I like to say it's a wiring problem. Due to this, psychiatric medications or traditional forms of treatment do not affect SPD. The only drugs that make a difference are benzodiazepines, but they are a crutch to be used when in sensory overload. I used to have a prescription for Valium for when sensory overload sent me into a panic attack. However, it was not an answer to the problem, it was a bandaid for the side effects. It calmed me down, but still did not help reduce my reactions to my sensitivities. The only real answer is occupational therapy. Unfortuately, most OTs do not usually work with adults, and don't really know what to do with them in therapy. It took me three years and three OTs to find one that managed to get through to me (she was a godsend), and dozens upon dozens of rejection phone calls in between.
I am not saying that psychiatric drugs have no value in a course of treatment. While medications will not help SPD, they are extremely useful in treating emotional and psychiatric side effects of the condition. As I said, I have an anxiety disorder and a previously debilitating depression, which were a result of my sensory defensiveness. Occupational therapy does not treat those. My current "cocktail" is 75 mg of Zoloft, 1/2 mg Risperdal, and 2 mg Klonopin daily. I was in a deep dark hole and couldn't climb out, and my occupational therapy was only helping minimally. I finally admitted that I needed some chemical help, and now I am no longer a couch potato (well, not all the time). I have the motivation to get out of bed in the morning and do something productive with my day, and without my medications, I doubt I would be making the progress I am now. My talk therapist put it this way: I was stuck in a dark closet and I couldn't open the door.These drugs would help me push the door open, even just a crack, so that I could see that sliver of light outside and push my way out of that closet of depression. He was right. My progress in my occupational therapy and my personal life increased dramatically after a month on the meds. I have no intention of taking them forever, but I am willing to admit that I need them now, and will wean myself off of them (with my psychiatrist's supervision) when I feel I am ready. Whether it is 2 months from now or 2 years from now, I know these medications played a huge role in my ability to save myself, and I fully appreciate them for that.
So I have my daily "cocktail" and I also have my daily sensory diet, on which I will elaborate in another post.
I am putting my condition and my life out on the internet for all to see, and while I was nervous at first, I know I have already touched one life, perhaps more, and this just fuels my fervor to continue this blog and continue spreading the word about SPD. So please, click follow on the right side, and pass this blog on. I also hope that friends and family of those who suffer from this condition will read, so that they may better understand what we go through every day.
Monday, May 30, 2011
Business, Ethics, & Society
First of all, I should mention that I am rather germophobic, and feel the need to be clean at all times. My hands feel sticky? I will wash them 4 times in a half hour. An hour ago, my neighbor (9th grade) took me on a ride in his go-cart around our yards. It was amazing! It was exhilarating! I have always loved roller coasters (no doubt because of the vestibular input), but I was amazed at how much fun it was, even to be a passenger. We had some air time, which was awesome, and when I got out of the cart, my bare feet were filthy. I have not yet washed them. Progress!
My second item today requires some context. My story was about my first experience with my condition was when I was ten years old. Today's story happened almost ten years later, when I was 19 and a sophomore in college at DePaul University in Chicago. I had to take several business classes for my theatre & costuming major, one of which was called Business, Ethics, and Society. It was fascinating; I read Plato and Aristotle, studied parts of the Bible from a societal point of view, my professor was exceptionally engaging, and I wrote an 8 page paper on Martin Luther. As with most of my general education classes, we all tended to sit in the same seats every day, twice a week, for an hour and a half. The guy who always sat next to me, no matter how hard I tried to avoid him, caused me some issues, though he was not the only one.
My mother has always encouraged me to journal and write. My occupational therapist has recently been espousing the same philosophy, so that it will document my journey and progress. At the age of 19, one is less likely to follow the advice of one's mother, due to natural rebellion and wanting to live your own life away from your parents. However, I did follow her advice once during class. I was suffering through a particularly difficult day in class, and on a whim, decided to write. I wrote about what I was feeling and experiencing at that particular moment, in my state of fight or flight, and thankfully I saved it. I would like to share it, and will share the whole "transcript." I was agitated, and free-writing more than anything else (I can barely read my own handwriting) but since it is my only documentation of how I felt when I was experiencing sensory "attacks," I want to post it. Forgive the language and the grammer, for I copied it exactly, to the letter.
More context: I went to a conservatory theatre program for my bachelor's degree (Bachelor's of Fine Arts in Costume Technology), and all designers and technicians were required to take a class called Survey of Art, Architecture, Fashion, and Furniture. It was a year long course, and brutal in the amount of information we had to memorize, and we simply referred to it as "Survey." Secondly, my school was called The Theatre School at DePaul University, but as that is a long and cumbersome name, all the students and professors referred to it as "TTS."
"Observations, 9/29/08
The girl next to me was munching saltines. I decided it was an earplug day. The crinkling of the plastic and crunching of the crackers continued for twenty minutes, but only about ten crackers disappeared. Anorexic? My suspicions seem more plausable when I look over her shoulder to see a private trainer's page up on her laptop an hour later. And she really doesn't need to lose more weight. She also has this OBNOXIOUS cough that I hope means she has bronchitis or something because even the most seasoned smoker would be ashamed to vocalize that in public. Black lung, anyone? And she CAN'T STOP MOVING! Not just little foot movements, sways, her whole legs are bouncing all over the place. Apparently she is impatient to be back outside, burning more of the nonexistent cracker calories before they are fully digested. Clearly, she is number one annoyance today. I tried to go earplug - less for a little while today, but it just didn't work. Oh, now little foot sways. And the guy next to her. And done. He's a sniffler too. And back to foot movements. I don't understand why people are incapable of sitting still. There again! I want to reach over and make them sit still! I can't even cover my eyes with my hair sufficiently to block this out. I'll have to turn toward the wall completely. On ten seconds, off ten seconds. Over and over. Today is not as bad as sometimes. But class just is NEVER GOING TO END. It's like Survey, for fuck's sake. But in Survey it never mattered if I didn't pay attention. I actually want to pay attention. Here, I can't, due to the girl and the nose boy next to me and the girl in front of me, well, she was sniffing for awhile, and then she fell asleep. I don't know what it would be like now, she kinda woke up again, not like these 8 minutes are going to be worthwhile. I might just start glaring at people, they all think I'm kind of a strange nut anyways, TTS and all."
The guy who sat next to me day after day could not stop moving. He was always rubbing his face, his nose, itching his ears, chewing on pens, etc. One day (it may have been the same day), I became so frustrated and angry that I nearly ripped the pen out of his mouth. Instead, I took a 20 minute bathroom break (the class was only an hour and half). I paced the halls, trying to calm down, dreading the moment I had to return to the classroom. I did this frequently during my Survey class, using "bathroom breaks" to escape massively uncomfortable situations.
I did manage to graduate Cum Laude in June of 2010, almost a year ago. That is likely the accomplishment I am most proud of in my life so far. However, I do believe that the only reason I made it through those four years was because it was a conservatory program. I had 95% of my classes with my peers in TTS (scenic, lighting, and costume designers, and costume technicians and theatre technicians), and eventually, they learned that I was a little different. (I think) they liked and respected me as a person and a seamstress, so they tolerated my "quirks." I only had to take approximately 5 general education classes over my four years there, and those were the most difficult classes to get through. I dropped several due to people in the class or the professor. I almost took a leave of absence my senior year, due to my deteriorating condition and my also deteriorating depression, but I knew that if I left I would never come back. So I stuck it out, hard though it was (especially due to yet undiscussed friendship issues), and I graduated. I have a degree, very specific though it may be, and I am proud that I accomplished that. Even the smallest accomplishments need to be recognized and mentally praised, and graduation was a huge one. I completely understand those with my condition who do not have post-secondary eduation degrees, or those who acquired them later in life. I'm still astonished that I graduated a year ago, with honors.
Of course, I still struggle. I would love to take a pottery class but I am afraid of the other students, and what reactions they might evoke. I am pushing forwards a little bit every day, and I feel that this blog is a big step, like my graduation. I hope that those who share my condition understand what it is like.
My second item today requires some context. My story was about my first experience with my condition was when I was ten years old. Today's story happened almost ten years later, when I was 19 and a sophomore in college at DePaul University in Chicago. I had to take several business classes for my theatre & costuming major, one of which was called Business, Ethics, and Society. It was fascinating; I read Plato and Aristotle, studied parts of the Bible from a societal point of view, my professor was exceptionally engaging, and I wrote an 8 page paper on Martin Luther. As with most of my general education classes, we all tended to sit in the same seats every day, twice a week, for an hour and a half. The guy who always sat next to me, no matter how hard I tried to avoid him, caused me some issues, though he was not the only one.
My mother has always encouraged me to journal and write. My occupational therapist has recently been espousing the same philosophy, so that it will document my journey and progress. At the age of 19, one is less likely to follow the advice of one's mother, due to natural rebellion and wanting to live your own life away from your parents. However, I did follow her advice once during class. I was suffering through a particularly difficult day in class, and on a whim, decided to write. I wrote about what I was feeling and experiencing at that particular moment, in my state of fight or flight, and thankfully I saved it. I would like to share it, and will share the whole "transcript." I was agitated, and free-writing more than anything else (I can barely read my own handwriting) but since it is my only documentation of how I felt when I was experiencing sensory "attacks," I want to post it. Forgive the language and the grammer, for I copied it exactly, to the letter.
More context: I went to a conservatory theatre program for my bachelor's degree (Bachelor's of Fine Arts in Costume Technology), and all designers and technicians were required to take a class called Survey of Art, Architecture, Fashion, and Furniture. It was a year long course, and brutal in the amount of information we had to memorize, and we simply referred to it as "Survey." Secondly, my school was called The Theatre School at DePaul University, but as that is a long and cumbersome name, all the students and professors referred to it as "TTS."
"Observations, 9/29/08
The girl next to me was munching saltines. I decided it was an earplug day. The crinkling of the plastic and crunching of the crackers continued for twenty minutes, but only about ten crackers disappeared. Anorexic? My suspicions seem more plausable when I look over her shoulder to see a private trainer's page up on her laptop an hour later. And she really doesn't need to lose more weight. She also has this OBNOXIOUS cough that I hope means she has bronchitis or something because even the most seasoned smoker would be ashamed to vocalize that in public. Black lung, anyone? And she CAN'T STOP MOVING! Not just little foot movements, sways, her whole legs are bouncing all over the place. Apparently she is impatient to be back outside, burning more of the nonexistent cracker calories before they are fully digested. Clearly, she is number one annoyance today. I tried to go earplug - less for a little while today, but it just didn't work. Oh, now little foot sways. And the guy next to her. And done. He's a sniffler too. And back to foot movements. I don't understand why people are incapable of sitting still. There again! I want to reach over and make them sit still! I can't even cover my eyes with my hair sufficiently to block this out. I'll have to turn toward the wall completely. On ten seconds, off ten seconds. Over and over. Today is not as bad as sometimes. But class just is NEVER GOING TO END. It's like Survey, for fuck's sake. But in Survey it never mattered if I didn't pay attention. I actually want to pay attention. Here, I can't, due to the girl and the nose boy next to me and the girl in front of me, well, she was sniffing for awhile, and then she fell asleep. I don't know what it would be like now, she kinda woke up again, not like these 8 minutes are going to be worthwhile. I might just start glaring at people, they all think I'm kind of a strange nut anyways, TTS and all."
The guy who sat next to me day after day could not stop moving. He was always rubbing his face, his nose, itching his ears, chewing on pens, etc. One day (it may have been the same day), I became so frustrated and angry that I nearly ripped the pen out of his mouth. Instead, I took a 20 minute bathroom break (the class was only an hour and half). I paced the halls, trying to calm down, dreading the moment I had to return to the classroom. I did this frequently during my Survey class, using "bathroom breaks" to escape massively uncomfortable situations.
I did manage to graduate Cum Laude in June of 2010, almost a year ago. That is likely the accomplishment I am most proud of in my life so far. However, I do believe that the only reason I made it through those four years was because it was a conservatory program. I had 95% of my classes with my peers in TTS (scenic, lighting, and costume designers, and costume technicians and theatre technicians), and eventually, they learned that I was a little different. (I think) they liked and respected me as a person and a seamstress, so they tolerated my "quirks." I only had to take approximately 5 general education classes over my four years there, and those were the most difficult classes to get through. I dropped several due to people in the class or the professor. I almost took a leave of absence my senior year, due to my deteriorating condition and my also deteriorating depression, but I knew that if I left I would never come back. So I stuck it out, hard though it was (especially due to yet undiscussed friendship issues), and I graduated. I have a degree, very specific though it may be, and I am proud that I accomplished that. Even the smallest accomplishments need to be recognized and mentally praised, and graduation was a huge one. I completely understand those with my condition who do not have post-secondary eduation degrees, or those who acquired them later in life. I'm still astonished that I graduated a year ago, with honors.
Of course, I still struggle. I would love to take a pottery class but I am afraid of the other students, and what reactions they might evoke. I am pushing forwards a little bit every day, and I feel that this blog is a big step, like my graduation. I hope that those who share my condition understand what it is like.
Sunday, May 29, 2011
Baseball bats and crocodiles
Imagine you have someone following you around with a baseball bat, and they periodically whack you with it. You don't know when they will hit you, how many times they will hit you, or how hard they will hit you, but you know that they will. They are always following, sometimes delivering multiple blows, and sometimes they just shadow you quietly for a little while. How would you feel?
The normal human reaction would be a flood of adrenaline through their body, sending them into fight or flight mode. And if someone is following you around with that baseball bat, you will constantly be on alert, constantly ready to fight or flee. Imagine being in that adrenaline-induced hyper-aware state 24/7, 365.
When someone asks me what my condition feels like, that is how I describe it. I believe that it is nearly impossible to understand what it truly feels like if someone has not experienced it, and I also believe that many who mocked me in the past would not last a day in my shoes. Despite the fact that many of us struggle through our days, with our sensitivities and possible ridicule, I remind myself that it takes incredible strength of character for us to simply go about our daily business. I had to find that strength within myself under layers of depression, but it was there, and has given me the will to get out of bed in the morning and make a difference in my own life.
Quick overview: sensitivities can affect all five senses, as well as proprioception and the vestibular system. Sensitivities can range from mildly irritating to debilitating. Each person is different.
I am extremely sensory defensive, mainly auditory and tactile, with some visual and minor food issues.
Sniffing, coughing, chewing crunchy food, gum popping, the faint buzzing of the fridge, and the clicking of my ceiling fan are a few of my auditory sensitivities. I cringe at loud noises, and have an aversion to small children, due to their tendency to make loud noises. I often joke that I'm haunted by the crocodile that ate my hand, because I can't stand ticking clocks (and I love Peter Pan). I often request a specific table at a restaurant, as far away from others as possible, and I like having my back to the wall, so nothing can surprise me from behind.
I cut all the tags out of all of my clothing. I only wear cotton, linen, and rayon. Cotton blends with stretch are fine, and I will occasionally buy cotton/poly blends, but I avoid polyester on principle, but not because it bothers me; I'm a seamstress. I avoid wool like the plague. I have cut collars out of basic crewneck tshirts because I felt like they were choking me, and for the same reason, I never wear turtlenecks. It generally takes me 10 minutes to get settled properly on the couch; I have to arrange my clothes so that no seams bother me, and half the time I move ever so slightly and have to start over. When I am at home, I wear pajamas, all the time. Soft cotton pants from Gap, a pullover shelf bra, and a soft tshirt or tank top is my daily uniform. I do wear jeans and underwire when I leave the house, but they bother me after a few hours. I sleep naked because the seams of my pajamas drive me nuts, and I would constantly be rearranging them, and therefore get no sleep. I sometimes have to stop to rearrange the seams of my socks in my shoes.
Visually speaking, bright lights bother me, and I do wear my sunglasses more than most people. Repetitive movements drive me nuts. In particular, people tapping their feet, or bouncing their legs while seated, or twirling their hair around their finger will prompt me to move elsewhere, or place something in my line of vision, so I can't see it. As far as foods go, anything with a pudding-like texture makes me gag. Pudding, yogurt, jello, cottage cheese, etc, are all off the menu for me.
These are my sensitivities. How my condition affects me personally and many anecdotes about my own sensory situations will be revealed later on, as well as a bit about me as a person, because I am not my condition. I have an interesting life aside from my issues. But more on that later.
The normal human reaction would be a flood of adrenaline through their body, sending them into fight or flight mode. And if someone is following you around with that baseball bat, you will constantly be on alert, constantly ready to fight or flee. Imagine being in that adrenaline-induced hyper-aware state 24/7, 365.
When someone asks me what my condition feels like, that is how I describe it. I believe that it is nearly impossible to understand what it truly feels like if someone has not experienced it, and I also believe that many who mocked me in the past would not last a day in my shoes. Despite the fact that many of us struggle through our days, with our sensitivities and possible ridicule, I remind myself that it takes incredible strength of character for us to simply go about our daily business. I had to find that strength within myself under layers of depression, but it was there, and has given me the will to get out of bed in the morning and make a difference in my own life.
Quick overview: sensitivities can affect all five senses, as well as proprioception and the vestibular system. Sensitivities can range from mildly irritating to debilitating. Each person is different.
I am extremely sensory defensive, mainly auditory and tactile, with some visual and minor food issues.
Sniffing, coughing, chewing crunchy food, gum popping, the faint buzzing of the fridge, and the clicking of my ceiling fan are a few of my auditory sensitivities. I cringe at loud noises, and have an aversion to small children, due to their tendency to make loud noises. I often joke that I'm haunted by the crocodile that ate my hand, because I can't stand ticking clocks (and I love Peter Pan). I often request a specific table at a restaurant, as far away from others as possible, and I like having my back to the wall, so nothing can surprise me from behind.
I cut all the tags out of all of my clothing. I only wear cotton, linen, and rayon. Cotton blends with stretch are fine, and I will occasionally buy cotton/poly blends, but I avoid polyester on principle, but not because it bothers me; I'm a seamstress. I avoid wool like the plague. I have cut collars out of basic crewneck tshirts because I felt like they were choking me, and for the same reason, I never wear turtlenecks. It generally takes me 10 minutes to get settled properly on the couch; I have to arrange my clothes so that no seams bother me, and half the time I move ever so slightly and have to start over. When I am at home, I wear pajamas, all the time. Soft cotton pants from Gap, a pullover shelf bra, and a soft tshirt or tank top is my daily uniform. I do wear jeans and underwire when I leave the house, but they bother me after a few hours. I sleep naked because the seams of my pajamas drive me nuts, and I would constantly be rearranging them, and therefore get no sleep. I sometimes have to stop to rearrange the seams of my socks in my shoes.
Visually speaking, bright lights bother me, and I do wear my sunglasses more than most people. Repetitive movements drive me nuts. In particular, people tapping their feet, or bouncing their legs while seated, or twirling their hair around their finger will prompt me to move elsewhere, or place something in my line of vision, so I can't see it. As far as foods go, anything with a pudding-like texture makes me gag. Pudding, yogurt, jello, cottage cheese, etc, are all off the menu for me.
These are my sensitivities. How my condition affects me personally and many anecdotes about my own sensory situations will be revealed later on, as well as a bit about me as a person, because I am not my condition. I have an interesting life aside from my issues. But more on that later.
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