It is #NationalStoryTellingWeek and the disability charity Scope, whom I have worked with on their Scope for Change program, have been sharing disability stories! I thought I would share mine...
If you have been here for a while you likely already know my story, and that it is a very long one. So to cut down on this becoming a 1000 page novel, I might miss out certain things or link you to other blog posts! (You will definitely thank me later!)
Where does my story begin?
Well, funnily enough, it begins when I was born! Somehow that was 19 years ago, and in September I will have been on this earth for 2 entire decades!
Though my development was a bit slow and strange, things in my first couple of years on this planet were fairly good! I hadn't got any major problems, besides a heart condition that made me a little different! And as you will see from my blog, different is good!
It was when I turned 3, that bad things started to happen, and my Dad passed away from terminal cancer. This was a clear point in my life that seemed 'difficult' and the grief was largely used as a blame for my 'differences', which were later diagnosed as Autism.
I struggled a lot in school. I was very reserved and had few friends, if anything I was the target for almost every bully.
This was only made worse at 8 years old, when I became a Young Carer for my suddenly disabled Mum. Things changed overnight for me and my family, and I had to grow up very very quickly. I missed out on a lot of childhood joys, like playing out with friends, or even eating ice cream from an ice cream van. I felt so isolated and there was no 'easy fix'. (You can learn more about this in Sticks and Stones: https://nkrywald.wixsite.com/hnppandme/articles/sticks-and-stones)
This is the way my life carried on for many many years. This coming April marks 11 years since I became a carer, which is ridiculous for me to think about! In many ways it feels like just yesterday, but at the same time it feels like an entire life...
When did I 'become' disabled?
It wasn't actually until 2014 that I started noticing my own disabilities coming through in my daily life. And feeling like my family relied on me, I didn't want to put that extra pressure on them. I often kept my pain to myself and acted as if everything was fine, when this wasn't always the case.
Eventually things got too difficult to mask and I requested an appointment with the doctor. My pain and numbness, especially in my hands, was becoming unbearable at times and I would spend nights crying myself to sleep because of the pain. It wasn't a case of staying strong anymore, and my only option was to seek help. However, when i went to get that help I was met with criticism and disbelief by the same doctors we are taught should take care of us. I speak more about this in my blog post "My Diagnosis Story: https://nkrywald.wixsite.com/hnppandme/articles/my-diagnosis-story-part-1-24-days-to-go", where you can learn how I became diagnosed with my disabilities.
What are My Disabilities
If this is your first time on my blog, definitely check out my first ever post "Life with HNPP... What is it?: https://nkrywald.wixsite.com/hnppandme/articles/life-with-hnpp-what-is-it" to learn more about my condition! :) But in a nutshell I have Hereditary Neuropathy with Liability to Pressure Palsies (HNPP) and Autism! HNPP causes me chronic pain, severe numbness and sometimes temporary paralysis, whereas Autism can cause me many social issues and meltdowns (which are not tantrums, but instead an overwhelming sensation that i find really hard to describe!)
My Life post-diagnosis
Once I was diagnosed with HNPP and Autism, I felt a sense of relief that my own issues were out there. I no longer had to hide my pain and the strength I had to find to not tell anyone could now be used on recovery. This didn't mean it was easy though.
Initially I took my diagnosis very badly. Having such a rare disease, I felt like a lost case and had no one I knew that I could relate to. My mental health spiraled largely out of control, and by the end of Year 10, I no longer wanted to be alive. Looking back even I find myself silly, but back then I did not know how to cope with the way my life was going. I saw the bad things happening in my life as barriers, not the challenges I am determined to fight now.
I spent years in and out of hospital, trying to get on top of my mental health. But for every time I ended the night with a meltdown that sent me back to the ward, I saw heartbreak in my family that caused even more pain of my own. I became stuck in that cycle of feeling worthless and a disappointment, which was only made worse every time I was admitted. For me, every tear I caused was one more drop in an ocean of reason I felt like a failure.
I don't necessarily talk about this time in my life very often. I still feel ashamed and embarrassed to this day of the things I did and said whilst in this mental state. And thinking about this time of my life is still incredibly difficult for me and everyone close to me, who had to witness that time in my life. But one day, I hope to have the strength to share that story and help others through their own diagnosis' and other things life throws at us. There needs to be more support in place for young people, especially upon receiving a life changing diagnosis.
What happened post-recovery?
To keep this blog post from becoming too long, I am going to skip straight to my life now! This is a life I can look at and be proud of! :)
Not only have I been mostly on top of my mental health for a very long time, I have managed to make genuine changes in the world around me, through my experiences! My first book, "The Carers Companion: A Daily Sidekick For Young Carers" (a support guide for young people in caring roles) has been published via The Rotary Club and given for free to 3000 young carers who need vital support. This took me over 2 years of dedicated research and hard work, but is worth it for the smile on every child's face and the education that it can give to them.
I have completed various fundraising events, raising over £3700 for charity in just a year. These included a head shave, a skydive, a tattoo, a sponsored camp out for the homeless and many other crazy things!
And since 2018 I have been working alongside Scope, in their Scope for Change program, campaigning for education in disabilities. I chose this idea, after realising that most of the discrimination I saw, came from misunderstanding. My campaign, Educate Don't Discriminate, focuses on the idea that everyone needs education, so we can live in a world where we can understand each other instead of discriminate against one another. And it is my hope that one day in the not so distant future, education about social issues (such as disability) will be taught in all schools and also some workplaces.
Due to all my fundraising and campaigning efforts, I was recognized in this years British Citizen Awards and awarded an Honor! It is hard to believe that just 2 years ago I was likely in hospital, yet now I can proudly call myself Natasha Krywald BCAv!
I still have chronic pain, I still have my disabilities, I still have my difficulties, BUT... I learn everyday how to manage them better. :) So to anyone reading this, never let those tough times stop you, they are just opportunities to learn new tricks! :)
Stay Smiling!
Love Tasha x
P.S: Check out some of my other blog posts if you would like to know more about my story! :D