Module 1: Living with

This might sound like a cliché, but the values and attitudes inherited from parents greatly affect ones mentality and ability to independently achieve what one wants. You can enter adulthood thinking: “I’m handicapped, and as such, so are my abilities. I’ve got enough challenges in my life, I don’t need more. In short: “I’ve enough with just being handicapped.”

Or you can look upon yourself as equal to your brother or sister, male or female friend, and disregard the word handicap and say to yourself: “When I grow up, I’m going to have my own apartment, live where I want to live, have the occupation I’ve always wanted, and be independent of my parents.”

If you look upon yourself as handicapped and constantly hear that you are handicapped, you get brainwashed by the word ‘handicapped’. Think about how many times you heard the word ‘handicapped’ during your childhood. Probably so many times that you don’t need to remind yourself of it. This was how I tried to think for many years prior to leaving home. I can’t say that everything went according to plan, but I can say that I entered adulthood with my head held high. For that, I give my mother and father credit for the attitude instilled in me.

Living with respiratory failure means that I need assistive devices to compensate for my body not being able to breathe by itself. Assistive respiratory aids can be compared to assistive mobility devices, for example, a wheelchair for people who have difficulty in walking.  It is important that the person with respiratory failure and those close to that person, are aware of what it means to have respiratory failure and what needs to be done to live a good life with assistive respiratory devices.

But why am I qualified to say so much about this? In both my childhood and adult life with continual confirmation about my deteriorating health every single day, I can claim that there are two choices: You can ask yourself, “Why me? It’s so unfair!” Or you can accept the new challenge with open arms and adapt accordingly. The first alternative could lead you into a vicious circle where negativity breeds negativity.

In my situation, a good life meant accepting the situation and disease. Acceptance has developed in several stages. As a young boy, I didn’t have the life experience to understand the severity of the situation. Just the same as any other child, reflecting over life wasn’t one of my strongest points. I wanted to do fun things.  My parents hadn’t told me everything about the disease and prognosis. Therefore, it was probably easier for me than my parents to accept the situation. The question is whether acceptance has become more relevant to me as an adult in that I can now reflect over how it potentially affected me, not just at the time, but in later years as well.

In 1999, when I was 18-years-old, I came across some old statistics about the life span of Duchenne patients . They stated that people with such a diagnosis often didn’t live beyond the age of 23! It took this very literally and I remember that day very well. Talk about terrifying to read! It felt like a proper slap in the face. I believed this for a year and generally thought that I only had five years to live. I’d heard that the survival rate was lower than that of ‘fit’ people, but the fact that it was so low came as a huge shock. This was one of the few times that I’ve really had to put my values and attitudes to the test.

My life was not turned upside down by one isolated event during childhood. It has been a process with developments that have gradually led to a change in how my family and I have had to do things. My parents made the necessary decisions and changes at different points in my childhood and adolescence. For me, that was just ‘the way it was’. A quick and radical development would probably have been harder to process.