Max’s journey

By Nicola @nickynoona

My story is about my son Max who is now 12 years old and has Asperger’s Syndrome.

Max was born a healthy 7lbs 10oz in the hot summer of 1999. From day one he was an easy baby. Always happy and placid and rarely cried or threw tantrums. I counted myself very lucky to have such a content child. Max was walking by 11 months old and was ahead of other children with his talking too. I was not worried about his development or behaviour in any way.

Coming up to Max’s second birthday I had been shopping for his party, which was arranged for the coming weekend and bumped into some good friends whilst shopping. Us girls started chatting, Max was sitting in his buggy and my friends daughter who was about 4 years old began talking to Max and took an interest in a small toy he was holding. She took the toy from him to have a better look, with this ensued an almighty scene. Max began to scream and thrash around in his buggy. My friends and I stood in shock, they asked me if he had ever behaved this way before and I assured them [...] continue the story

The lasting effects of a temporary disability

By Margo Milne

Imagine you were born perfectly fit and able-bodied. As a teenager, you suddenly became severely physically disabled, but then you became able-bodied again. How would that affect your attitudes to disability and disabled people once you were an adult?

When writer and broadcaster Hardeep Singh Kohli was 13, he came down with Guillain–Barré syndrome, a usually temporary condition that causes sudden paralysis, often triggered by infection. He was in hospital for 10 weeks, and it took him a year to learn to walk again.

Lucy Pask, who runs the website Great Aunt, also had Guillain–Barré syndrome, in her case at 14. After 2 weeks in a wheelchair, she recovered sufficiently to walk with a frame, and was back at school within 12 weeks.

Hardeep didn’t see himself as disabled and wasn’t aware of any discrimination. Lucy felt that, if anything, discrimination operated in her favour. She got lots of attention, long extensions on coursework deadlines, and was offered money by charities. People who had previously bullied her now protected her: “It seemed like in their minds; it was fine to bully me whilst I was ‘able bodied’ but whilst I was ‘disabled’ I was totally out of bounds, a person to [...] continue the story

Invisible Illnesses Are For Real

Being confined to a wheelchair it was obvious to those I met that I was not as able-bodied as others. However, people living with chronic pain or illness often don’t look any different from those around them. It is difficult for people to understand the struggle you experience when you don’t look sick or in pain.

My second bout with a rather rare autoimmune disease required that I take heavy doses of prednisone and chemotherapy. This was not an option. The autoimmune disease would have attached my kidneys and lungs and eventually it would have led to death. When I told people I was on chemotherapy the first thing they said was, “What kind of cancer do you have?” Cancer is a scary word, but by no means the only life threatening reason to have chemotherapy.

This is true of many of us. We experience “invisible illness.” What experiences do we share in this invisible universe?

We may experience guilt, embarrassment, and isolation. We may feel it is our fault that we got sick or that our bodies broke down in some way – as if it’s a personal failing on our part. We live in a culture that worships wellness. It’s okay [...] continue the story

Overcoming an Obstacle – RDEB-H

Bruce Gunn

During high school, my classmates were getting ready to take their driving tests and permits. I really wasn’t focused on that during high school and I knew I wasn’t ready. I have Recessive Dystrophic Epidermolysis Bullosa – Herlitz (RDEB-H) and there are a lot of things I wasn’t able to do. My special education teacher said encouragingly that I would be able to drive one of these days and have a car well-equipped with my needs.

It wasn’t until a couple of years later when I was working in a workshop for a non-profit agency for mentally and physically handicapped adults that I finally fulfilled this goal. Being able to drive was a requirement to work outside the workshop and have an opportunity for full time employment. Therefore, I took it on myself to ask a case worker to start the paperwork process to get my first step toward independence.

I knew my dad wouldn’t be able to teach me how to drive because I saw what my two older brothers and twin sister went through and I needed someone with a bit more patience than my dad! In the beginning, my parents had some doubts about whether or not I [...] continue the story

Toughing Up

By MickeyMic October 3, 2011

I heard those words- “You have MS”, and I found myself making that choice- to accept, to learn, to strive, to “tough up” and take it on. “Toughing up” has become a daily endeavor, and I accept it. I heard those words- “Your MS has progressed, and you now have Epilepsy”, and I absorbed the shock the only way I knew how- I “toughed up” and moved forward as best I could. “Toughing up”- it’s a constant companion. I heard those words- “You have breast cancer”, and it stopped me dead in my tracks- until my constant companion tapped me on the shoulder. Fighting the good fight demands an attempt at “toughing up”, even if you don’t do it as gracefully as you hoped you would. In living with MS, “toughing up” is what we do- every day and at any given moment. “Toughing up”- it’s what we do. We never know what is coming next, but what ever it is, I’m on the ready. I’m “toughing up”!