Karla Culbertson

Aging is inevitable. It is something we are blessed to experience, especially if we are given the opportunity to live a long and fulfilling life. As we age, our bodies begin to break down. This is natural. However, when you have cerebral palsy as I do, aging seems to happen at a more advanced pace as the result of the increased wear and tear we expose our bodies to daily. This can be an exceedingly tricky situation to handle. There is nothing that can be done to prepare you for the abundance of conflicting emotions you will feel as you watch your body changing before your very eyes. In my experience, there will be times when you are going to want to roll into a corner and just cry and scream. The load will be heavy, and you will also lose relationships you once valued as your limitations increase. This will hurt. Some days will be easier than others, but the sting will become ever-present. I understand that cerebral palsy is varied and affects everyone very differently. Therefore, the number of changes you will feel will vary greatly. I have always thought of my cerebral palsy as a moderate case. I am almost 38 years of age, and in my younger years, I was blessed to be independent. I was able to bathe and clothe myself. I was able to crawl to get around and used my wheelchair to get around otherwise. I will not pretend like I was not fortunate. I know that there are people who have much more involved disabilities, and I never let that thought escape my mind, not even once. I treasure my functionality even more in the present now that it has dwindled. I wish I had a magic wand that could reverse my osteoarthritis, my hip dysplasia, and my knee tendonitis, but I know that is not how life works. Throughout our entire course with cerebral palsy, we are told that our disability is a pediatric one because we are typically diagnosed at birth. The brain damage present at birth does not change; this is true, but our bodies change due to the strain that spasticity and other CP symptoms put on them. However, I believe that medical professionals should be more diligent when considering the residual effects of cerebral palsy. It’s not something that is included in their initial training but should be added. I am not sure what doctors could do for us down the line clinically, but I think they could be a source of comfort for us as we age and start to see the significant progression. I wish I could be the person to tell everyone who is affected by this how to cope, but I know that this is not possible. If I were to attempt to offer some advice, it would be to truly try to take the progression day by day. There is nothing we can do about aging, but we can make it a little easier by taking it in smaller doses. You are going to have your days when you cannot manage to take the pain and the fatigue anymore. This is completely normal and even more so, acceptable! If you have had enough, just let the emotions go! You will feel better after the release, trust me! It is a wild ride, and we must make sure we buckle up! The good news is that we are in this together. We may choose to cope differently, but we are never alone in our journey. If we can tough it out to see the sunrise and the sunset, we are doing something right!

It is no secret that living with a disability can be difficult. Acceptance is something people with disabilities often search for. It is the destination at which many disabled individuals hope to arrive. As people, we are often pressured to pick ourselves back up when we are having a less-than-spectacular day. As disabled people, we often seem to be under a unique set of pressures to be at our best all the time. We may be some of the strongest-willed people you will ever come across. However, it is important for others to be mindful that people with disabilities are humans too, and we deal with an overflowing plate every second of the day. Therefore, I want to explain some of the coping mechanisms I use every day as a person who lives with a disability. I have cerebral palsy, and I use a wheelchair. This can be stressful at times, especially when you add in the fact that I also am living with chronic pain conditions such as hip dysplasia, hip osteoarthritis, and severe osteoarthritis I will be honest: dealing with all of this with cerebral palsy added on can be very taxing, particularly physically but also emotionally. I have had numerous nervous breakdowns, and I have wished that I could just have one day free of the pressures of being disabled. I’ve screamed until my throat hurt and my voice was all but gone. I’ve cried until I have been shaken to my very soul and have had my tears blur my vision. It took me a long time to realize that this was not a dreadful thing at all. It made me human, and no human always has their life perfectly together. Growing up, I was always seen as the girl who was always smiling while living with many challenges. It is true — I am a happy person most of the time. However, given my “happy” reputation, I was always intent on never letting anyone around me down, and I thought showing I was not always happy would be a letdown to others. I know this may sound ludicrous to other people, but this is how I felt — under constant pressure. However, now that I have evolved and grown, I realize that this way of thinking was out of line with the truth. I know now that others often understand that I sometimes have a bad day, and this doesn’t make me a “negative” person; it just makes me human — and that much more relatable. I realize that everyone’s ways of dealing with high-pressure, stressful situations vary, but I thought it might be helpful for me to share some of the ways I personally deal with the stressors of living with a disability and chronic pain conditions. These tips are as follows: 1. Find a routine and do your absolute best to adhere to it. I work best when I form a routine. I mostly stay at home, so finding things to keep my mind occupied is especially important. I am an independent writer, so sticking to a writing schedule helps me maintain productivity. I do my best to write four days a week. It does not necessarily mean working on a project, but I just try to write in any form to hone my skills. 2. Find a hobby that will keep you busy, and work on it often. Many of you may have heard about the adult coloring book trend that has been around for quite some time. I have always loved to color, and I am blessed with enough hand use and dexterity to be able to color well. I absolutely love it, and I set goals for myself each week — like picking a different coloring theme or book to color in. I also struggle with anxiety and depression, and coloring has also been tremendously helpful in coping with my mental health conditions too. 3. Find something that makes you smile, and do it often. I personally adore watching YouTube videos that feature food. I, like many of my fellow humans, love to eat. Therefore, watching taste tests and eating challenges are some of the many videos I enjoy. I also love watching family YouTube channels and joining in as the families document their daily lives. Because my life with a disability feels so different from these families’ lives, I love to see what goes on “behind the scenes” of families who may have more enticing, exciting lives than mine. 4. Practice self-care and self-awareness. Both of these skills are essential to my daily life. As I have gotten older, I have made myself more of a priority. I make sure I spend quality time with myself in mind and take time to self-reflect and genuinely think about where my life’s path may be headed. I also consider whether that life path will satisfy me. I spent so many of my younger years taking care of others and putting myself on the back burner. As a result, I struggled with loving myself as a person. I have come an exceptionally long way, and I am extremely proud of myself for achieving the feelings of happiness and contentment I had always desperately longed for. Remember to try to be an advocate for yourself and to do what is best for you in the end. Stress is a part of life, and the truth is, it will likely never go away, especially for us in the disabled community. Becoming flustered and annoyed with life feels like a given at times, particularly when our bodies and brains refuse to listen to and cooperate with us, but if you’re in a similar situation, just know that these feelings of stress and discontentment are completely normal. It is my hope that some of my coping mechanisms and tips help my fellow members of the disability community and lead you to a more peaceful and comfortable life.

It is no secret that living with a disability can be difficult. Acceptance is something people with disabilities often search for. It is the destination at which many disabled individuals hope to arrive. As people, we are often pressured to pick ourselves back up when we are having a less-than-spectacular day. As disabled people, we often seem to be under a unique set of pressures to be at our best all the time. We may be some of the strongest-willed people you will ever come across. However, it is important for others to be mindful that people with disabilities are humans too, and we deal with an overflowing plate every second of the day. Therefore, I want to explain some of the coping mechanisms I use every day as a person who lives with a disability. I have cerebral palsy, and I use a wheelchair. This can be stressful at times, especially when you add in the fact that I also am living with chronic pain conditions such as hip dysplasia, hip osteoarthritis, and severe osteoarthritis I will be honest: dealing with all of this with cerebral palsy added on can be very taxing, particularly physically but also emotionally. I have had numerous nervous breakdowns, and I have wished that I could just have one day free of the pressures of being disabled. I’ve screamed until my throat hurt and my voice was all but gone. I’ve cried until I have been shaken to my very soul and have had my tears blur my vision. It took me a long time to realize that this was not a dreadful thing at all. It made me human, and no human always has their life perfectly together. Growing up, I was always seen as the girl who was always smiling while living with many challenges. It is true — I am a happy person most of the time. However, given my “happy” reputation, I was always intent on never letting anyone around me down, and I thought showing I was not always happy would be a letdown to others. I know this may sound ludicrous to other people, but this is how I felt — under constant pressure. However, now that I have evolved and grown, I realize that this way of thinking was out of line with the truth. I know now that others often understand that I sometimes have a bad day, and this doesn’t make me a “negative” person; it just makes me human — and that much more relatable. I realize that everyone’s ways of dealing with high-pressure, stressful situations vary, but I thought it might be helpful for me to share some of the ways I personally deal with the stressors of living with a disability and chronic pain conditions. These tips are as follows: 1. Find a routine and do your absolute best to adhere to it. I work best when I form a routine. I mostly stay at home, so finding things to keep my mind occupied is especially important. I am an independent writer, so sticking to a writing schedule helps me maintain productivity. I do my best to write four days a week. It does not necessarily mean working on a project, but I just try to write in any form to hone my skills. 2. Find a hobby that will keep you busy, and work on it often. Many of you may have heard about the adult coloring book trend that has been around for quite some time. I have always loved to color, and I am blessed with enough hand use and dexterity to be able to color well. I absolutely love it, and I set goals for myself each week — like picking a different coloring theme or book to color in. I also struggle with anxiety and depression, and coloring has also been tremendously helpful in coping with my mental health conditions too. 3. Find something that makes you smile, and do it often. I personally adore watching YouTube videos that feature food. I, like many of my fellow humans, love to eat. Therefore, watching taste tests and eating challenges are some of the many videos I enjoy. I also love watching family YouTube channels and joining in as the families document their daily lives. Because my life with a disability feels so different from these families’ lives, I love to see what goes on “behind the scenes” of families who may have more enticing, exciting lives than mine. 4. Practice self-care and self-awareness. Both of these skills are essential to my daily life. As I have gotten older, I have made myself more of a priority. I make sure I spend quality time with myself in mind and take time to self-reflect and genuinely think about where my life’s path may be headed. I also consider whether that life path will satisfy me. I spent so many of my younger years taking care of others and putting myself on the back burner. As a result, I struggled with loving myself as a person. I have come an exceptionally long way, and I am extremely proud of myself for achieving the feelings of happiness and contentment I had always desperately longed for. Remember to try to be an advocate for yourself and to do what is best for you in the end. Stress is a part of life, and the truth is, it will likely never go away, especially for us in the disabled community. Becoming flustered and annoyed with life feels like a given at times, particularly when our bodies and brains refuse to listen to and cooperate with us, but if you’re in a similar situation, just know that these feelings of stress and discontentment are completely normal. It is my hope that some of my coping mechanisms and tips help my fellow members of the disability community and lead you to a more peaceful and comfortable life.

March is an especially important month for those of us who live with and are affected by cerebral palsy. It is a month in which we share all the intricate parts of us that come together to make us individualistic and unique. It is a month in which we strive to inform others about our disability. We are striving for understanding, but most importantly, we are looking for acceptance. Acceptance is universal. It is something we all yearn for and all desire to some degree. However, when you are born with a disability, I believe the need for acceptance is often magnified. Let’s be honest, it is difficult to keep up with the expectations and norms of society. Especially in American culture, we are expected to earn respect and work for it. Society is very judgmental. Keeping up with the best and newest trends are hard enough on their own, but when you add a difference as large as cerebral palsy to the mix, the difficulty can become almost exponential. The idea that we need and want to fit in is made essential in the world around us. When you are limited somewhat by your disability, this can become even more of an ideal situation that constantly swims around in your head, swirling around with the devilish thoughts that can sometimes convince us that we are not good enough. This pressure can build up in your head, just waiting to release, much like the steam coming from the top of a pressure cooker. This pressure can then lead to a mental breakdown, or even worse, increased levels of depression and isolation. One of the biggest problems we seem to face is the fact that we are dependent on others, which can lead to the struggle of feeling burdensome. It is no doubt a horrible feeling that can manifest into nastier thoughts. It is a challenging thing to cope with, and no matter how many times our loved ones may tell us that caring for us is something they do out of love, we may still struggle to make that thought stick in our heads permanently. Isolation is another issue we must tackle. Having a disability can become very lonely, especially if we must depend on others to get from place to place. A lot of times, we must stay home and therefore find ways to stay productive and busy, so we do not let the feelings of boredom and loneliness overwhelm us. Isolation can lead to depressive feelings if not managed and understood in the correct fashion. Cerebral palsy awareness serves as a great reminder that we are not alone in our circumstances, both good and bad. It serves to remind us that we are never alone when fighting back with our bodies and muscles. Most importantly, though, it serves as a reminder to others who may not understand what it is like to live with a disability, that although hard, it is possible to live life to the fullest potential. It allows us to show others that we are just like any other human being who wants to be loved, heard, and accepted. It allows us to use our voices, which are often stifled when other happenings and occurrences are seen as more important or valuable. It affords us the opportunity to know that we as a collective unit matter, especially to those who are on the outside looking in.

It is no secret that living with a disability can be difficult. Acceptance is something people with disabilities often search for. It is the destination at which many disabled individuals hope to arrive. As people, we are often pressured to pick ourselves back up when we are having a less-than-spectacular day. As disabled people, we often seem to be under a unique set of pressures to be at our best all the time. We may be some of the strongest-willed people you will ever come across. However, it is important for others to be mindful that people with disabilities are humans too, and we deal with an overflowing plate every second of the day. Therefore, I want to explain some of the coping mechanisms I use every day as a person who lives with a disability. I have cerebral palsy, and I use a wheelchair. This can be stressful at times, especially when you add in the fact that I also am living with chronic pain conditions such as hip dysplasia, hip osteoarthritis, and severe osteoarthritis I will be honest: dealing with all of this with cerebral palsy added on can be very taxing, particularly physically but also emotionally. I have had numerous nervous breakdowns, and I have wished that I could just have one day free of the pressures of being disabled. I’ve screamed until my throat hurt and my voice was all but gone. I’ve cried until I have been shaken to my very soul and have had my tears blur my vision. It took me a long time to realize that this was not a dreadful thing at all. It made me human, and no human always has their life perfectly together. Growing up, I was always seen as the girl who was always smiling while living with many challenges. It is true — I am a happy person most of the time. However, given my “happy” reputation, I was always intent on never letting anyone around me down, and I thought showing I was not always happy would be a letdown to others. I know this may sound ludicrous to other people, but this is how I felt — under constant pressure. However, now that I have evolved and grown, I realize that this way of thinking was out of line with the truth. I know now that others often understand that I sometimes have a bad day, and this doesn’t make me a “negative” person; it just makes me human — and that much more relatable. I realize that everyone’s ways of dealing with high-pressure, stressful situations vary, but I thought it might be helpful for me to share some of the ways I personally deal with the stressors of living with a disability and chronic pain conditions. These tips are as follows: 1. Find a routine and do your absolute best to adhere to it. I work best when I form a routine. I mostly stay at home, so finding things to keep my mind occupied is especially important. I am an independent writer, so sticking to a writing schedule helps me maintain productivity. I do my best to write four days a week. It does not necessarily mean working on a project, but I just try to write in any form to hone my skills. 2. Find a hobby that will keep you busy, and work on it often. Many of you may have heard about the adult coloring book trend that has been around for quite some time. I have always loved to color, and I am blessed with enough hand use and dexterity to be able to color well. I absolutely love it, and I set goals for myself each week — like picking a different coloring theme or book to color in. I also struggle with anxiety and depression, and coloring has also been tremendously helpful in coping with my mental health conditions too. 3. Find something that makes you smile, and do it often. I personally adore watching YouTube videos that feature food. I, like many of my fellow humans, love to eat. Therefore, watching taste tests and eating challenges are some of the many videos I enjoy. I also love watching family YouTube channels and joining in as the families document their daily lives. Because my life with a disability feels so different from these families’ lives, I love to see what goes on “behind the scenes” of families who may have more enticing, exciting lives than mine. 4. Practice self-care and self-awareness. Both of these skills are essential to my daily life. As I have gotten older, I have made myself more of a priority. I make sure I spend quality time with myself in mind and take time to self-reflect and genuinely think about where my life’s path may be headed. I also consider whether that life path will satisfy me. I spent so many of my younger years taking care of others and putting myself on the back burner. As a result, I struggled with loving myself as a person. I have come an exceptionally long way, and I am extremely proud of myself for achieving the feelings of happiness and contentment I had always desperately longed for. Remember to try to be an advocate for yourself and to do what is best for you in the end. Stress is a part of life, and the truth is, it will likely never go away, especially for us in the disabled community. Becoming flustered and annoyed with life feels like a given at times, particularly when our bodies and brains refuse to listen to and cooperate with us, but if you’re in a similar situation, just know that these feelings of stress and discontentment are completely normal. It is my hope that some of my coping mechanisms and tips help my fellow members of the disability community and lead you to a more peaceful and comfortable life.

There is absolutely no doubt the world we are living in at this time is frayed. It seems we are all going through something, whether it is related to COVID-19 or not. Even if you are fortunate enough to escape getting sick, the social isolation is enough to take quite the emotional toll on not only the mind and body, but the spirit as well. As humans, we are wired to be socially invested to create relationships with others For us, it is very important we remain in close contact with those with whom we have formed some sort of bond. This virus has put a damper on everything we are accustomed to doing, and essentially, the things that make us human. This has been very difficult and tiring. It seems many of us, myself included, are beginning to become very fatigued not only literally, but figuratively as well. I have found this has been affecting me more so lately than in any stage of the pandemic before. It has caused me to take the time to reflect on what I used to enjoy and all of the activities I used to participate in. While this can be something positive and bring back a lot of good memories, it can also cause depression because I then think about what I have lost as a result of being unable to hang out with friends and family and do the things I once considered fun. I am, by nature, a homebody. I enjoy being home, and I am more than comfortable in the space in which I live. However, once you spend so much time at home, it becomes so routine and boring. Boredom is one of my silent killers. I cannot stand being bored and having nothing around me to stimulate me. I do everything in my power to avoid it, and most of the time, I do a pretty stellar job at staying completely occupied. On the occasion nothing seems to be entertaining me, the boredom bug bites me and drives me completely bonkers. Prolonged times of boredom then lead to depression as a result of having too much time to think about the negative things in my life. I have always struggled with depression. Depression, for me, like everything else in life, ebbs and flows. Sometimes, it will hit for no apparent reason, sending me sliding into an unexpected tailspin of emotional destruction. As someone who has spent multiple years studying human behavior and social work, I try my best to reflect and truly take a good look at my cycle of depression, and I try to develop my own coping mechanisms so I can take my mental health into my own hands. Luckily, for me, my coping mechanisms are usually effective. I realize many people are not as lucky as I am and cannot manage their feelings and the buildup of emotions on their own. That is perfectly OK, and by my standards, it is considered a normal part of being human. As I mentioned at the beginning of the article, human interaction should be used as a base for survival. Even if you are lucky enough to have a stable support system, it sometimes helps to have someone outside of your circle who will be judgment-free when considering all of your specific issues. It is perfectly OK to need others to get through life. I understand we live in a society where mental illness is still vastly disregarded, especially in America, where values are heavily placed on being able to sustain yourself as well as your craft. Suddenly, when you start feeling different, it can seem as most of the people surrounding you think you will just get over it or that it is a phase. It is either you pulling yourself up by the bootstraps or ultimately “failing.” This is a very antiquated viewpoint on mental health, and I personally cannot wait to see the stigmas come to an end. We are all individually created with our own strengths and weaknesses, and I think it is past time to normalize the aspect of mental illness as something that is naturally occurring, in humans who are merely trying to maintain life in the middle of a global pandemic. The moral of this story is you are not alone, no matter how singled out you may feel. We are truly in this together from all corners of the world.

I am the type of person who is fascinated by life. It could be because I was born three months premature. I am a miracle baby, and I am extremely fortunate to be alive and kicking. I spend most of my time at home due to my disability and my inability to drive, so I believe I appreciate the little things a little more than the average person. Then again, what constitutes average, anyway? I am a very outgoing and optimistic person who views life in a glass-half-full kind of manner. I am the kind of person who relies on self-discovery in order to fully figure out who I am. I feel that finding out who you truly are is a bit of a necessary beast. I believe this is due to societal norms and pressure. If you really take the time to think about it, it is really amazing how much society impacts us, both positively and negatively. Everywhere you look, we are surrounded by TV shows and commercials that are attempting to show us how things should be structured. It doesn’t help much that you’re looked at as “weird” or a “freak” if you teeter away from those norms. If we are insecure about the way we feel about ourselves already, I feel like society makes it worse, especially since things, people and places are so heavily judged and criticized. I’ve found being different from the supposed norm does not make for an easy life, and it makes for an even more difficult transitionary period. Our minds then begin to warp and tell us that being different is wrong because we have heard it so often. This is the result of repeated cruelty by others who often are hurting too. This very sentiment took me a long time to figure out. People are mean and ugly to people who aren’t like them because they are hurting more than we realize. While their scrutiny is painful, I believe we experience the hurt in order to make ourselves a better person. I believe we learn most from our hardships and difficult times. I was bullied throughout my school-aged years due to my cerebral palsy. In that moment, the bullying tore me up, but now I look at it as a lesson that has made me into the strong person I am today. It’s interesting how life works. I have always been very aware of all of my traits. Being very happy (for the most part), being encouraging, outgoing and kind are all at the forefront of my mind. I was also aware of my negative ones and being too clingy and underestimating myself were at the top of my list. I was never really a typical girl. I never thought consciously about getting married or having a lifetime partner. I never have desired intimacy and sex. I have always desired to love someone and have them love me back. At the same time, I have always wondered how and if love could exist without sex. As my life continued to roll on, and I made it to my 30s, I have found out that the answer to that particular identity question is yes. I truly believe we as humans are complex creatures and our identity is not concrete, but forms and shapes over time. We are all composed of different parts that make us unique and whole. My 30s have been the most empowering time period in my life, and I cannot wait to see what’s in store for me in future years.