Cerebral Palsy (CP) is a group of permanent movement disorders that appear in early childhood. Signs and symptoms vary among people and over time. It is the most common motor disability in childhood.
Often, symptoms include poor coordination, stiff muscles, weak muscles, and tremors. There may be problems with sensation, vision, hearing, swallowing, and speaking.
Read more about why awareness is so important.
A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles.” –Christopher Reeve
Writing
Tap tap tap tap with each letter I press on the keyboard becomes me telling my story of 24 years of life experiences from my point of view.
Over the years I get asked this question – what made you decide to want to write about your Spastic Cerebral palsy?
I write about my Cerebral Palsy because I want to bring awareness to the positive side of having the condition, but I also want to bring awareness to the raw truth about Cerebral Palsy.
In all seriousness, I write about my condition to end the stigmas about Cerebral Palsy and the condition itself. One of the stigmas I strongly dislike is that people with Cerebral Palsy can’t live an average life and are not able to get jobs or to go to college.
That’s why I write about my life whether it be through my blogs, books or poetry. I always find a way to bring awareness to a condition that is often thrown under the rug although 17 million people have Cerebral Palsy, unfortunately.
Realistically Speaking
Cerebral Palsy isn’t spoken about much as a writer and as a person who speaks out on the deep topic, I feel that it’s important for others to get educated about disabilities and the stereotypes we have to face on a day to day basis in our society.
When I write about my condition it makes feel as if I could express myself without having to be cautious about the situation and how people perceive me, since I sometimes mispronounce words and stutter at times when I am talking. With writing, I don’t have to worry about being judged about my Cerebral Palsy or the way I stumble with some of my words. I can just be myself and my message comes across clearly and I gain the confidence I need to continue stomping on Cerebral Palsy
When I am writing it feels like I have the whole world in my hands and for a split second, I forget I have Cerebral Palsy. I use writing as a way to cope when I’m feeling down about my CP. I just open my laptop and start writing from my heart about whenever it is I’m going through, and I’m reminded that I will be okay and I have to keep on pushing through.
About The Author
Tylia Flores is a 24-year-old born with cerebral palsy. Although her condition has affected her mobility, it has never affected her will and determination to make a difference in the world. Through her many life challenges and obstacles, she discovered her passion for writing. Tylia’s goal in life is to share her stories with the world.
Mental Health is a huge struggle for many living with chronic illness, but there is a particular struggle for Chinese Americans because of custom of Mianzi.
Cultural Norms
According to the University of Manitoba, Inflammatory Bowel Disease (IBD) treatment often results in a deterioration of the patient’s mental health. Patients face treatment-related body changes and the psychiatric side effects of corticosteroids, among other complications. But articles like these do not consider what happens beyond the pillbox. What are the norms of my culture? How do they impact my mental health? How does bullying affect me?
According to the Center for Disease Control, only 3.1% of non-Hispanic Asians were clinically depressed, approximately two times less than non-Hispanic whites (7.9%). The gaping disparity is unsettling. Here’s why.
Low access to mental health resources in Asian American communities leaves mental illnesses undiagnosed. So many go through life without being treated for Depression. Asian American culture can explain the low levels of access. The cultural stigma associated with depression discourages us from seeking help. Asian Americans with IBD live at a difficult crossroad of IBD and stigmatized mental health. Some common examples of mental health jokes/remarks in the Asian American community:
“Ooooh I’m depressed! I need an asylum! Oh no!”
“That person basically is bipolar.”
“Charge me a group rate for this therapy session! I have multiple personalities!”
“Why you retarded? You depressed? Stop being depressed!”
The list goes on.
These comments that I heard in the Asian American community created an environment hostile to neurodiversity. Moreover, they stigmatize mental health, making diseases like Depression unacceptable. While the mockery tends to be directed to a general crowd, it isolates those who struggle with mental health. As someone whose IBD affected their mental health, these comments keep everyone unaware of mental health concerns that plague people.
Mianzi, or Saving Face
Immature jokes are not the only cause. The mental health stigma also stems from mianzi, a concept that originates from Chinese culture and means “saving face.” Mocking mental illness prioritizes pretence over honesty, creating more pain for those who suffer. In fact, pretending became a survival mechanism in order to avoid bullying.
For example, I refused to tell anyone about potential mental health concerns right after my diagnosis for the fear of becoming a social outcast. My emotions piled on top of each other, threatening to explode at any moment. Silence was already the norm in my Asian American community no matter how detrimental it might be. Unfortunately, social survival comes at the expense of perpetuating the stigma. The more we keep silent, the more the ignorance around mental health will linger. No one would ever be aware of any struggles that Asian Americans with mental health challenges would face.
“Saving face” also created a false sense of pride: I was somehow better than others who were honest about their mental health. My ego overtook the reality that seeking help was necessary. Outside, I fantasized of a world in which I was “normal.” Keeping silent also harmed my mental health. I appear strong, but I am actually weak. I seem fine, but I really am not. Hence, tensions between facade and reality begin to grow, creating knots of anxiety in my stomach. Each question I asked added one more insecurity. How much longer must I keep this up? How do I keep this up? Where was this shame coming from?
Mental health, IBD and Asian American identity
Because I have diarrhea from my IBD, I was allowed to go to the bathroom without permission. Unfortunately, others did not understand. One day, I walked out of the bathroom, and a boy confronted me: “Why are you going to the bathroom so frequently? Get out of there and actually start asking before you go.” Others chimed in on his criticism, and my cheeks turned scarlet red. Disregarding these comments was the best I could do fulfil mianzi. Unfortunately, I became more and more angry but did not know the cause.
The more I was bullied, the more my mental health deteriorated. At first, I saw it as a just punishment for being sick, so I told no one. Emotions began curling up like snakes inside me, eating away at me inside. As a result, I became furious at random things. Projection was the only solution, which established a vicious cycle. Mianzi ravaged my mental health, which fed into my IBD, which fed into mianzi. And the cycle kept going. Within this cycle, I kept denying that there was any linkage between the three for years; it was too much for my brain to handle.
Mianzi prevented me from seeing that my able-bodied, healthy classmates should not bully me for my IBD. I began to blame the disease and my doctor for making me fat and ugly. Standards of Asian America perpetuated my silence. It was better to look fine than to feel good. Apparently, the rules of mental health operate differently from mianzi.
Collin Wong is an Inflammatory Bowel Disease blogger and advocate on Collin’s IBD Chronicles. In the thick of the college application process, he decided to start a blog after realizing the lack of Asian Americans in disease blogging. He was diagnosed with Crohn’s Disease in 2006, and he started this blog as a way to give an Asian American perspective on IBD. Outside of blogging, he is a full time student who aspires to be a doctor one day.
In November 2008 I found out I was expecting my first child, and both my husband and I were over the moon. Life was peachy… Until I started suffering from strange symptoms, which at first I put down to the pregnancy. Slowly but surely the symptoms worsened. I was dashing to the toilet over ten times each day, losing blood, and was in lots of pain around my stomach and back. I became terrified that something was wrong with my baby. I went to visit my GP, who quickly came to suspect that I may have Inflammatory Bowel Disease. The confirmatory tests could not be done due to me being pregnant, so I was given foam enemas to help the inflammation. I gave birth to a healthy baby boy, and could then finally be booked in for the Colonoscopy I needed in order to reach a diagnosis.
My Diagnosis
In late 2009 I was diagnosed with Proctitis, which is a form of Ulcerative Colitis affecting the lining of tissue of the inner rectum. I initially kept it under control with medication the doctor offered as the first port of call, and because my disease was mild at this point it worked. Naively I totally underestimated the severity of my disease, and I thought my medication had cured me. I often didn’t bother taking it and generally did not look after myself. I ate too much of the wrong things, drank too much and weighed a lot more than I should have.
Fast forward to 2015 and I became incredibly unwell. I was diagnosed with Pan Ulcerative Colitis which meant the disease was now throughout my entire large bowel and I was flaring terribly. I became housebound and was no longer able to work as a Forensic Science Lecturer, which is a job I adored and had worked so hard for; I had just achieved promotion. My consultant put me on a biological drug treatment called Humira, where I had to self-inject weekly at home.
After a while, it was clear the injections alone were not completely working. I felt a bit better but still not right. I was still not able to go out for long periods. After trying many different diets which didn’t work I decided to try to adopt a plant-based lifestyle. The combination of my new medication and ditching dairy and meat worked. I got my life back, I lost weight, and I could go out with my family again. I even dared to go on holiday. However, I had lost my job, a job I had spent effectively five years qualifying for and just having qualified with my masters, this was a huge blow.
A Fresh Start
I couldn’t see myself doing anything other than teaching, but I had to
try to remain positive. I clung on to the fact that not working meant I could
be there for my children during the school runs, the bath and story times, and
all the school plays and assemblies. I also had the exciting thought that I
could potentially do something for myself, something I had always dreamed of
doing but had never thought was possible.
I decided to go for it, and thought ‘what better way to earn a living than to work doing something I love?’ Clearly, I love food… (a little too much, but I’m working on it). So far I’ve lost four stone but still have two to go. I set up Glow, a meal delivery business, in January 2017. After a slight blip with my medication after it failed in October 2017, I seemed to settle on a new regime of eight weekly infusions with a drug called Vedolizumab that was administered at hospital. Again, I felt well, the combination of a plant-based diet and the vedolizumab made me feel great. I continued to drop the weight and found myself falling more and more in love with the vegan way of life! I have now switched all beauty products, cleaning products and clothes over to cruelty free brands and even my children decided to come on board in February 2018 and they became (mini) vegans too.
I was so happy with my new-found wellness and lifestyle, I should have known it was too good to be true… Once again, my medication failed! It also left me with horrendous joint pain which was later diagnosed as Inflammatory Arthritis, and also Erythema Nodosum, which is a painful condition where the fat cells under the skin become inflamed. This results in tender, red lumps, usually on the shins. In my case both my shins became terribly inflamed and painful. Once again I had had to face losing the career I had worked so hard for and had built up to a point I was very proud of, simply because I couldn’t stand for periods long enough to complete my cooking and I couldn’t leave the house to complete my deliveries.
A Fresh Start… Again
I became so poorly in December 2018 that I decided to cease trading with my meal delivery business, thinking I could start up again when I felt better and was settled on new medication, or having had surgery if it was necessary. These plans were not meant to be, in January 2019 my Dad who had suffered for many years from Parkinson’s and Vascular Dementia passed away. Despite him being poorly, his passing was still a huge shock as he had been physically well up until only a week or two before he was taken into hospital.
When such a life-changing event happens, it makes you re-evaluate your life and what is important. I thought a lot about what Dad would have thought about the situation, and I had found myself in and listened closely to the opinions of my close family members. I realised I had been continuing with my business far longer than I should have, simply to keep up appearances. I didn’t want to lose face and for people to think I’d failed. When Dad passed away I realised I could not give a damn what people think anymore! I needed to do what was right for me and my family. I knew I needed to create a career that works for me, one I could still run from home but could do sitting down, or even laying down if I needed to. But the question was, what?
I have always enjoyed reading and watching other people’s blogs, facebook pages, and inspirational talk videos and wondered if it was something I could try myself. I was lucky that I had made a friend in the chronic illness world who runs the wonderful blog A Balanced Belly, a blog all about Jenna’s life with Crohn’s Disease and how she helps her gut health through a gluten and dairy free diet. After chatting things through with Jenna I decided to give it a whirl, what did I have to lose?
I still needed to earn a small wage, so I started buying and selling clothes, again something I can do from home. I set up my little blog House of Herbivores, which is all about life as a mum to vegan children. I share plant-based recipes, review vegan products, and also chat all things Ulcerative Colitis too. My recipes prove really popular with vegans and non-vegans alike, as the meat-free food movement becomes ever more popular and families are incorporating more and more meat-free meals into their weekly menus. It’s very early days, but things seem to be going really well. I have had lovely feedback on my fledgling site and have had my writing published on other blogs. My aim is to be able to monetise my blog in the near future, but I am still very much in the early stages of my plans.
It has been quite the journey over the last ten years with Ulcerative Colitis. I count myself as incredibly, incredibly lucky. Yes, I have been diagnosed with a chronic illness, but that does not define me! Over the last ten years, I have also had two wonderful, intelligent and compassionate children. I qualified as a teacher and completed my masters (yes it nearly finished me off but that’s beside the point, and is a story for another day). We have moved into our forever family home and added a silly puppy dog into our family. I have made such happy memories with my family and friends, been on holidays I will never forget, and have made new friends thanks to Colitis and Veganism too.
I am constantly fighting for wellness and will never stop.
I am a mother, wife, daughter, sister, aunty and a friend. That is what defines me, and it is for those wonderful reasons that I will get through the challenges that inevitably lie ahead on this crazy journey that is chronic illness.
Always try to find the positive.
Emma is a freelance writer and cook who created the blog House of Herbivores – a vegan family blog. Emma was inspired to switch to a plant based lifestyle three years ago for health reasons as she suffers from Ulcerative Colitis, inflammation of the bowel. Emma shares her family favourite recipes, vegan product reviews, tips and tricks for the new vegan and insights into life as a vegan family.
When you’re living with chronic illnesses, some days you’ll find that it’s just too difficult to get up and go to what most people would consider a traditional job. Recently, I had a very trying flare. I would be up until 3 AM and then somehow need to be able to function at 6:30 to get my daughter ready for school. It was all just too stressful and too much for my body and mind to handle. This would happen too often, and unfortunately, my employers would not understand what living with chronic illness is like. Time after time, this pattern would cause me to lose my job.
That’s why about seven years ago I started marketing online. I did different things. I did affiliate marketing, where you will promote someone else’s product for a commission. I did advertising and had an advertising company where I helped small businesses advertise online. About 4 years ago is when I started with the Unchargeables community and began making the T-shirts and other products. I really LOVE this work, but unfortunately, it doesn’t pay my bills completely, so I’ve had to come up with other sources of income.
Survival Mode
Chronic illness has a way of turning your entire world upside down. It can often render people unable to do things they once were and force us to make very difficult choices. For many of us, it becomes impossible to continue to hold a full-time job, if we are able to work at all. This can greatly add to the day to day stress we feel in the overall struggle to survive. For many of us, not working at all is simply not an option, particularly as we endure the long and painstaking process of applying for disability benefits, which can often lead to rejection and reapplying. The process can take years. So what can someone with chronic illnesses do in the meantime to survive?
Time for a New Plan
Working from home is optimal for people with chronic illnesses who still need to work as it often can provide for a flexible schedule and work environment and eliminates an often long and stressful commute. As the founder of the Unchargeables, my main source of income come from the associated shop. Obviously, this is not an option for most people, but you can take the concept and apply it to your own skills. If you’re crafty, you can create a product or craft and open up your own shop on venues like Etsy or Amazon. A big help for me in my business is Clickfunnel, a software which helps structure and manage online businesses. This would allow you to use your skills at your own pace and bring in some income.
Harness Your Skills
Another source of income that I’ve come to rely on is that I’m a freelance translator. I have started doing this in the past year to help supplement my income. It allows me to work from home and at my own pace. I have also taken consultation jobs using this skill. Whether it’s translation or something else, find a skill you possess and offer you services as a consultant. Perhaps you had to leave a full-time job due to your illness. Find a way to harness the skills you used and offer them for consultation. For example, if you were a teacher, tutor or write lesson plans. If you worked with computers, offer technical support. Almost any career has a skill that you can offer to provide consultation for if you break it down into its elements.
Sell Yourself!
When you’re chronically ill, you’ll find much of your life is spent in survival mode. It becomes so important to minimize physical, mental, and emotional stress, which are inherent with many traditional jobs. Just as you devise creative strategies for things like self-care and completing daily tasks, it becomes necessary to be creative to earn an income. Sell yourself! You are a valuable commodity with a lot to offer, even if it’s not how you originally planned.
