25. Mar, 2015 Peaks and Troughs. Ebb and Flow. However much I strive for consistency, it always seems to evade me. Partly because I guess ‘that’s life’. Partly because I seem to like to mix things up! I tend to regularly kick off new challenges. From finishing 2014 tired, living back home, and struggling with a deterioration in my disability. I’m now in a new flat, building my health back up, and fighting (tooth and nail) for improvements on my wheelchair, car, care and housing adaptions. I was lucky to spend time in Fuerteventura and Austria since the New Year began, which helped keep my spirits up for sure. Having ensured that my foundations were supporting my weaker body, and that my diary commitments are within my new limits; I’ve started building life onwards and upwards again. Finally, after 4 years of self employment, I’m earning enough regular income to breath a little easier. I won’t take things for granted, but I feel more able to buy myself a couple of non essential/materialistic treats for once! Believe me, I’ve had some dark moments and thoughts since leaving my London monthly salary in 2011. Whilst having enough money to cover the bills and to ‘live a [...] continue the story
By John Huynh
My name is John, and I have Neurofibromatosis – Type 1.
At an early age my mother knew there was something different about me.
My family doctor knew I had NF but did not say anything because “nothing could be done about it”. Another doctor formally diagnosed me in 1987. Neurofibromatosis was a scary and unfamiliar word at the time and my mother was devastated.
School can be an unpleasant when you are different. I remember classmates calling me names such as “shit stain” and “lumpy neck”. I hated changing clothes in gym class because of my café-au-lait spots and remember going home in tears because of the teasing.
My mother treated me like a normal kid. I was allowed to go outside to play, and grounded when I did something wrong.
In high school the teasing subsided, except for one student who called me “bee stings” all year. I no longer cried, but it still hurt. In grade 11 we moved to the suburbs, a fresh start. I made new friends and started to fit in. All was well, or so I thought.
In May 1996, I started noticing pain when I walked. I lost my balance and fell unexpectedly. My friend laughed [...] continue the story
Note: I was diagnosed with cancer in 2008. As I approach my ‘cancerveresary’, I decided to bring this piece back from the dead, with some slight adjustments.My cancer was so easy that I got embarrassed telling people I had cancer; depending on their sensitivity and sobriety levels, they immediately said something along the lines of OMG ARE YOU OKAY/ARE YOU GONNA DIE? The easiest way to deal with this was to say: Calm it, bitch, I ain’t even gon’ lose my hair. Now that I think about it though, it may have been an upside to lose my hair because a. I could wear a sweet blond wig and b. I could find out what my true hair color is! (Never dye your hair, kids, don’t do it.)
The upsides of cancer aren’t spoken about often, but they definitely exist. I was lucky to have cancer during my birthday season. (My birthday deserved a season. I had cancer.) And boy, did the extra gifts pour in. I received no empty Happy Birthday cards that year; even distant relatives stashed a $5 bill in there! And we all know that opening a card without cash in it is is one of the [...] continue the story
“Love must be as much a light, as it is a flame.” – Henry David Thoreau “Life has taught us that love does not consist in gazing at each other, but in looking outward together in the same direction.” – Antoine de Saint-Exupery
What is love? Ask ten different people and you will doubtlessly receive ten different answers. With few exceptions, these responses will be emotional in nature, ranging from sentimental to deeply passionate, bittersweet to just plain bitter… Yet, ask a person with Asperger Syndrome the same question and you may provoke a spontaneous, longwinded lecture on the motivating role of dopamine and norepinephrine in human reproduction.
Chances are the Aspie knows his stuff, but if love is nothing more than a chemical reaction, what exactly is the reaction’s catalyst? What makes a person fall in or out of love? Do we choose love or does it choose us? Why are some willing to die for it and others spend their lives running from it? These are the mysteries that elevate love to mythic heights within the hearts and minds of neurotypicals. So you want to make that longwinded Aspie shut up? Just ask them to define “true love.”
Before being diagnosed with Asperger Syndrome [...] continue the story
Wheelchair-bound lady magnet Zach, discusses his many talents and idea for a TV show designed to inspire people who never thought they could travel. Join Zach as he globe-trots to some of the most notoriously inaccessible locations and embraces the spontaneous nature of world travel! No matter what the obstacle, he’ll face every bump in the road with a smile. You can come too if you you have an adventurous spirit… and a wig!