When you are disabled you fight. You fight your disability for more ability. You fight the world and its aggression toward you. You fight the medical industry and insurance industry all while you are trying to get better. You fight your own body. You fight your own mind. You fight your feelings. You fight others with their bigotry and cruelty. You fight God and the cards you feel you have been dealt. What does it mean to have a disability. A limitation in body or mind. Yet, at the same time you have a disability in one area, you may excel in another. For me, my disability is physical. I was born with an extremely rare disability called Proteus Syndrome. Personally, I believe I have Cloves Syndrome. I read somewhere they were both in the same family. With Proteus, there are an estimated 200 documented cases in the whole world. Now that’s fairly rare. With this rarity there is not much money invested in research which is frustrating. All I know is that I was born with something quite rare. The majority of doctors that I have met have not even heard of Proteus Syndrome, so I have had to explain to them what I thought it was all about which of course made it that much more difficult to find help to relieve my suffering. I often found myself leaving the doctors office holding in my hand a prescription of some medicine that was suppose to help me to feel better. I’ve had twenty-two operations throughout my life. Each of those operations were a battle in themselves. The time it took for healing and mentally be challenged with bouts of doubt and despair. I had friends but mostly fair weather friends I came to learn. There were those rare diamonds that stood beside me on the rainy days. Those are the friends that are a treasure. I consider them to be cherished. If you find a friend that remains with you during the difficult times keep them close to your heart. My disability and the heart ache it has caused assisted in making the person I am today. I would not have changed a thing except for the disability and the heartache. That’s a little humor thrown in. But honestly, I have a beautiful family. I have beautiful friends. They are a true God-send.
Why did I write this blog. Well, I just wanted to share a little bit about myself to you. To share my hopes with you. To share with you that you are not alone in your struggles. That you have a friend out there that is right beside you, hoping in your hope and struggling with your struggles. To let you know that I’m praying for you, that God will fill your heart with all the graces you need to embrace each day with courage and strength. Please remember me and all the Hermits of St. Giles in your prayers.
Peace and Goodness from your brother,