Jeff G. - Brisbane, Australia - 2019
A Scout’s Life
By Jeffrey “Kanga” Gridley
My name is Jeffrey “Kanga” Gridley. I have ARCI-lamellar ichthyosis and live in Brisbane, Australia. I first became a scout at the age of 10 and will always be a scout. This is the story about how being a scout has helped me deal with the challenges ichthyosis brings, but more importantly, how scouting has helped me live a happy life.
For many, scouts is where you go to learn outdoor skills such as how to camp, survive and have great adventures in the great outdoors. Like most 10-year-olds, I was keen and looking for adventure.
My first night of scouts saw me building a teepee fire and cooking some sausages in a cast iron fry pan. The concept of cooking on a fire certainly hooked me and to this day outdoor cooking is one the most enjoyable things I do.
My second night was a knotting night, certainly a very scout thing to do. I was given a tangled mess of a rope and asked to untangle it so I could learn my very first scout knot. Desperate to get involved without much delay, I started pulling at the rope like a mad man and to my dismay, I made things worse instead of better. My scout leader came over to me, put his hand on my shoulder and told me that if I want to untangle the rope, I needed to first find an end and then work my way along the rope to untangle it. Soon enough I was all set to learn my first knot.
I really do not remember learning the knot. I assume it was a reef knot which is typically the first knot that scouts around the world learn. What I do remember is that I learned a great life lesson. I learned that no matter what the problem we face is, you have to start somewhere and starting effectively is the hardest part of solving any problem.
That life lesson was the first of many that scouting taught me. Scouting may be based around outdoor adventure but it is just the vehicle to teach us how to live an honorable, productive and happy life. Scouting does this by providing scouts the opportunity to develop their full social, physical, intellectual, emotional, spiritual and character potentials while learning a lot of cool outdoor skills and enjoying our wonderful world.
So how did scouting help me cope with ichthyosis? Scouting taught me to “Be Prepared”!
Be prepared to cope with whatever medical issues I have. This means having all the creams, lotions and potions I need to take care of my skin. It also means being a logistics expert to ensure that I receive the medical care I need from multiple specialists. Being prepared also means learning what I can about my medical challenges and find what treatments work for me.
Be prepared to handle adverse weather conditions. Because my work and play has taken me around the world, I have had to deal with extreme heat and cold, something that many with ichthyosis shy away from. I have done this through physical training to ensure that I am as fit and able as possible, therefore giving my body the best chance. Physical training also provides me with the knowledge about where my physical limits are so I know when to pull back and look after myself. Being prepared also means making plans to deal with hot or cold conditions easier, be that ice vests and access to shade and water, or extra warm clothes.
Be prepared to deal with the stares of being noticed and turn it into an opportunity rather than being offended by it. This is a tough one, and I won’t pretend there aren’t tough times, but if you develop your self-confidence and understanding of the world we live in, the ability of others to influence your state of mind reduces to almost nil. Looking different is also a fantastic opportunity as everyone notices you so why not use it to your advantage?
Be prepared to help others. This may seem like a strange concept to include when talking about dealing with ichthyosis but the founder of scouting, Lord Baden Powell, told us in his last message to scouts that “the real way to get happiness is by giving out happiness to other people.” One of the advantages of having more challenges than some is that you develop empathy and understanding for others going through a rough patch. It would be a shame not to use these skills to help others on their journey through life.
Be prepared to live your best life. No matter what challenges we face in life, be it ichthyosis or something significantly worse, have a go at whatever makes you happy. The only thing stopping you is your fears or your unwillingness to adapt and overcome your challenges. Put the effort into life and life will respond in kind.
Being a scout is a way of life and a true scout uses the Scouting methodology throughout all aspects of their life. Scouting has blessed me with the opportunity and ability to travel the world, see amazing things, and make lifelong friends. In short, scouting has helped me live a happy life, a scout’s life!
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This information is provided as a service to patients and parents of patients who have ichthyosis. It is not intended to supplement appropriate medical care, but instead to complement that care with guidance in practical issues facing patients and parents. Neither FIRST, its Board of Directors, Medical & Scientific Advisory Board, Board of Medical Editors, nor Foundation staff and officials endorse any treatments or products reported here. All issues pertaining to the care of patients with ichthyosis should be discussed with a dermatologist experienced in the treatment of their skin disorder.
