Any illness that takes a life is a tragedy, but sometimes an illness doesn’t take the life, exactly, it just stops everything about that life…in its tracks. In January of 1988 at age 12, Martin Pistorius of South Africa came down with a strange illness. his illness was so unusual, that his doctors weren’t even sure what it was. Nevertheless, they did speculate that it might be Cryptococcal Meningitis. Cryptococcosis is a potentially fatal fungal infection of mainly the lungs, where it presents as a type of pneumonia; and also, the brain, where it appears as a meningitis. The symptoms seem common enough…a cough, difficulty breathing, chest pain, and fever are seen when the lungs are infected. When the brain is infected, symptoms include headache, fever, neck pain, nausea and vomiting, light sensitivity, and confusion or changes in behavior. It can also affect other parts of the body including skin, where it may appear as several fluid-filled nodules with dead tissue.

As the disease progressed, Pistorius got progressively worse. At first, he lost the ability to move by himself, then his ability to make eye contact, and finally his ability to speak. His parents were told their son was essentially in a vegetative state, basically they were told he was almost brain dead, that he wasn’t “really there” and would die soon. It was the most devastating news a parent could hear, but Pistorius didn’t die. He just stayed in a vegetative state for the next 12 years. His parents couldn’t give up on their son, and so, they took care of him…bathing, dressing, and feeding him. They days turned into years…years of grieving, sadness, weariness, and a sense of having made a mistake, for not “letting him go” sooner. The weariness got so bad that one day, not knowing her son could hear her, Joan Pistorius told him, “I hope you die.” It was a harsh thing to say, but she thought he was brain dead, and she was simply exhausted.

As Joan Pistorius would later find out, to her horror I’m sure, her son heard and understood every word. Somewhere between the ages of 14 and 16, Pistorius had begun to wake up…slowly. At first, it may have been barely noticeable, but at some point, it got to where Pistorius later recalled, “I was aware of everything, just like any normal person.” He could hear, and very much understand and process what he heard, but he couldn’t say or do anything about what he heard or let anyone know that he had heard. The condition Pistorius had, is known as “locked-in syndrome” and can be caused by a stroke, traumatic brain injury, infection, or drug overdose. There is no known cure. I’m sure the situation was even more frustrating for Pistorius, than it was for his mom. Although Pistorius could see, hear, and understand everything, he couldn’t move his body. “Everyone was so used to me not being there that they didn’t notice when I began to be present again,” he later recalled. “The stark reality hit me that I was going to spend the rest of my life like that – totally alone.”

Pistorius made a conscious choice to disengage from his thoughts as his way of coping. Because of his condition, Pistorius spent a lot of time at a care center while his mother worked. He hated the children’s TV show Barney, and that was on constantly there. That show led him to start reengaging with his thoughts in an attempt to take some control of his life. As his thought life improved, so did his body. Then, one glorious day, a relief worker at his daycare center noticed his slight movements and realized Pistorius could communicate. She immediately told his parents, telling them to get another evaluation. Finally, they knew he was conscious. His recovery wasn’t instantaneous, of course, but by age 26, he could use a computer to communicate. Pistorius later enrolled in college, majoring in computer science and started a company online. It was a long road, but he has come full circle, by 2011 when he published his memoir, “Ghost Boy.” Pistorius met his wife Joanna, who is from England in 2008 through his sister Kim, who had moved to there. After meeting Joanna, he moved to England too, and they were married in 2009. By that time, while still using a wheelchair, he was racing in it. Their son, Sebastian Albert Pistorius, was born a few months later.

My cousin, Shirley Cameron is the first granddaughter of my grandmother, Anna Louise Schumacher Spencer and grandfather, Allen Luther Spencer, and would remain the only granddaughter for nearly the first seven years of her life. As the first granddaughter, and the only one for so long, she and my grandmother became quite close. Grandma passed away when I was just six months old, so I never really got to know her. Nevertheless, Shirley has told me a few things about Grandma that give me a bit of a view of her…humorous side. Kids tend to get into trouble with their parents, and Shirley is no different, but Shirley had a bit of an edge when it came to getting in trouble with her mom. She would run to her Grandma Spencer, who would teasingly shield her from her mother’s wrath. It’s one thing to plan to spank your child, but when your mother gets in the middle of things and makes the whole thing seem like a game of chase, it sometimes becomes impossible…not to laugh, that is.

Our grandmother spent part of her time in a wheelchair, due to Rheumatoid Arthritis, and Shirley remembers climbing up on her lap and tearing around the house with much screaming, of excitement that is, while her mother most likely sported a headache from all the noise, but I must admit, I would probably find it quite fun to ride around the house on Grandma’s lap in her wheelchair. I also think that while Grandma and Shirley might have ganged up on Aunt Ruth, and Grandma might have helped Shirley get away with a few things, Aunt Ruth probably also loved watching the two of them being so close. I suppose that could be the grandma in me talking, because I loved being so close to my grandchildren. It is a privilege that is simply priceless. Nevertheless, I think my grandkids liked it too. There is just something wonderful about being close to your grandparents.

As with most of us, those childhood days have long since turned into childhood memories. Both Grandma and Aunt Ruth have been in Heaven now for many years, but Shirley will always have the memories of those amazing fun times, and that is something most of the rest of us will never have, because we were either too little, or not born yet, when our grandma passed away, with the exception of three of the grandsons. Knowing Grandma is something I wish I had been able to do too, but I love hearing about the good times Shirley and Grandma had. Today is Shirley’s 70th birthday. Happy birthday Shirley!! Have a great day!! We love you!!

Learning to driveWheelchair racesMy cousin, Larry Cameron married his ex-wife, Kim about a year after she had her first child. Her son, Nehemiah was born with Cerebral Palsy. His biological dad was never in the picture, and that is definitely his loss, because Nehemiah is a very special guy. Larry was with Kim for the birth, and is the only dad, Nehemiah has ever known. Larry loved Nehemiah immediately, and after his marriage to Kim, he adopted him. Nehemiah loved Larry as much as Larry loved him too. They were extremely close from the very beginning. Nehemiah, who often goes by Neo, has two siblings…Moira and Conner.

Larry had joined the Army when he was 18 and spent 22 years in the service before retiring. For a time, was stationed in Korea. His kids were with him for a time after his divorce from Kim. Moira and Conner then went to live with their mother again, but Nehemiah stayed there for about 3 years. Nehemiah loved Korea, and wants to go back there to work as a teacher. He is very smart, and he will be an excellent teacher.

Like a lot of people, Neo is quiet until he gets to know you, and then he shows his true fun nature. He is very active. Being in a wheelchair has not slowed him down one bit. There is no obstacle that Neo considers too big. He simply never considers that he might not be able to do something. He simply does it and proves all the naysayers wrong. He hunts, water skis, plays basketball, and races. He is not afraid of any sport. If he decides he wants to play…he simply finds a way. His abilities and determination are inspiring. So many people just accept a disability, then sit down and do nothing, but not Neo. He is more active than a lot of people with no disabilities…maybe we should all take a page from his book and get out there and live life to the fullest. Recently, he went to a Pow Wow with his dad, and a friend from his Rugby team. His grandparents, my cousins, Shirley and Shorty Cameron, met up with them there. They all had a great time. He doesn’t get to visit his grandparents as often as he would like, and when he is there, it is hard for him to get around, so often times he has to be carried from one room to another, but he goes anyway…as often as he can…because he loves them so much, and they feel the same way about Neo.

Neo is a very loving and giving person, but he is also very independent and self reliant. He Nehemiah's teamWater Skiingdoesn’t like to have to depend on people to take care of him. That shows very strong spirit. For all of his life so far, Neo has needed someone to drive him around, often his dad, but that is about to change, because Neo is working very hard on getting his drivers license. I have a feeling that Larry, his dad, might find that just a little bit bittersweet. Today is Nehemiah’s 21st birthday. Happy birthday Neo!! Have an awesome day!! We love you!!

Lots of people follow the crowd…go along with their peers. If all their friends are being negative, rude, or disrespectful, then so do they. Everyone, it seems, is out for themselves. Doing things only if they will bring benefit to self. It seems like it is an “I, Me” world.

Still, there are people out there who specifically set out to be different than the rest. People who set aside their own needs and desires in order to do something nice or helpful for others. They are all around you, whether you know it or not. The man who stops to help someone change a flat tire, the the person who assists an elderly person with mobility problem to get up from a chair that is low, or helps a caregiver to transfer a loved one into the car from a wheelchair when they are not feeling well, and obviously to weak to stand easily.

These people usually remain nameless, because we either don’t know them, or we don’t see them do the nice things they do. Or maybe it is because they don’t do it for recognition, but rather because it is the right thing to do. They don’t do it for pay or for fame, but because they care about people. And they don’t even consider themselves to be heroes…but they are.

The funny thing is that each of us has the potential to be that person…to be different. It is a choice each of us can and must make when the opportunity presents itself. When we don’t look the other way when someone needs help, or when we can simply go out of our way to do something nice. And when we get the chance to step outside ourselves, to put others first, to ease someone’s pain, to give help where it is needed…when we get that chance and we take it…we learn what it is to be different.

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