There are a couple of proverbs that I have generally tried to build my life around. "I cried because I had no shoes, until I met a man who had no feet" I first saw this proverb in a Robert Heinlein book and it really says a lot about how a change of perspective can change your outlook on your own situation. The second is also shoe-related (oddly enough, for the most part. I couldn't give a rip about shoes) and it is "Never judge someone until you have walked a mile in their shoes". I am sure there may be a healthy debate in the comments about the source of these sayings, but universal truths need no sourcing, they just are. Follow me over the cheeto for my reasons in attempting to "walk a mile" in someone else's shoes.
In June 1969, a month before I was born, Dr. R.J. Gorlin, an oral pathologist specializing in diseases of the head and jaw, published a paper that would change my life for both good and bad. He had described a disease called NBCCS in 1960. In working with these patients he came across a different population with some similar features, but they didn't quite fit the NBCCS model. In that June 1969 paper, Dr. Gorlin coined the term "LEOPARD syndrome" to describe a multi-system genetic condition that I suffer from, though I would not know this for eighteen years.
I say "suffer" in a very broad sense. For whatever reason, I have a fairly benign case, the cardiac abnormalities are light. The retarded growth mostly resolved to normal in late puberty, though my weight is well below normal for my height. My skeletal abnormalities are close to normal, and while some endocrine issues have started cropping up, they are treatable.
There are other "leopards" who have hypertrophic cardiomyopathy, some to the extent they have required transplant, others where it has caused sudden cardiac death. There is a chance of mental retardation with the disease, though generally mild. Some have abnormal sex organs, where testes or ovaries do not form. As a side note, I went through a period of reflection after my diagnosis, where I considered a preemptive vasectomy, so as not to put my children through a worse situation, but I initially could not find a doctor willing to do that, and then eventually chose against it. Luckily for me, as I now have two wonderful daughters, one of whom does have the disease, but because I have dealt with the disease for so long, and my wife has been there with me, we are better prepared than a lot of parents.
The one aspect of the syndrome that has terrified me is the deafness. My hearing is fairly normal, though my wife at times would dispute that. I am an aural person, I could not imagine going through a life where I had not heard the beauty of Mozart, the inspiration of Dr. King's speeches, or the simple joy of my daughters telling me they love me. The flipside of that is that I also suffer from slow sleep insomnia and one of the ways that I treat that is with earplugs (usually pairs that have a noise reduction rating of 33 or higher) This helps to block out the external stimuli that aggravates my insomnia. I usually do not wear them unless I am trying to sleep. There is debate in the medical community as to whether the sensorineural deafness that is a hallmark of the syndrome is something that, when presented, is there from the start, or can be acquired over time. I have heard both opinions expressed, the first is a relief(I don't have it, so I won't "get" it as part of the syndrome), the second is a bridge I will cross if i happens, though it does frighten me.
Since my wife and I started discussing becoming more active as disease awareness advocates, we wanted to get as good a grip on the illness as we could. I felt that the one aspect of the syndrome that I did not yet understand, but could simulate would be the deafness. By "walking that mile in their shoes", it would give me a better way to explain what it was like to others. So I spent 24 hours with my earplugs in, through the course of my normal activities.
I want to stress that this in no way minimizes the struggles that our truly deaf "leopards" go through. They are heroic to me, because I see it as a very significant hurdle to overcome. At any time if I felt too uncomfortable, I could just remove my plugs. While the decibel reduction of these plugs is significant, the "hearing loss" is not as profound as what some sufferers of the syndrome go through. It is the best that I can do to at least try. The simulated deafness, on the other hand, is countered in that I am not trying to improve the loss (hearing aids, cochlear implants, signing, etc.) Now, my thoughts and reflections on the day.
1. It is frightening, in more ways than one.
Obviously, someone born deaf, or even with gradual hearing loss, would have a different experience, but when you suddenly cut off 20% (1 of 5 senses) of your sensory experience, the world can become a scary place. People, or things, that are not in your direct line of sight, simply don't exist. Which means that without meaning, or even trying, to do it, they can sneak up on you. When one of my daughters walked into our living room during the experiment to give me a hug, she came at me from behind. When I jumped about a foot in the air and screamed, I had to calm her down, admittedly after my own heart settled into a more normal rhythm. It also made me uncomfortable watching other people converse and not being able to follow, or join in.
2. People can be rude (and wonderful)
I'm not sure whether this is true, but it seemed that people tried too hard to be kind when they found out my "infirmity", but they also jumped to almost ignoring me. My wife acted as my interpreter, and it would seem that, once people found out, they would go to exclusively "talking" to her. My daughters took it in stride, I guess they are used to their father doing odd things. In fact, they picked up quickly that I could still "hear" conductively, after they were told, and would speak against my skull.
3. My head can be a very "noisy" place.
Maybe it was the loss of true auditory stimuli, but it seemed that my constant internal dialog stepped up a couple of notches. Left to my own thoughts, I have solved the world's problems multiple times :-) Okay, maybe not. I was less distracted by the outside world (the reason I use those plugs for my insomnia) During the day, rather than allowing me to wind down, it allowed me to focus on my thoughts. Still, not as attractive as one might think.
It was not an experience that I enjoyed and rather than a better understanding, I have even more questions. I cannot fathom going through this on a daily basis, especially without the luxury of ending the isolation at my own desire. Would I have a better handle on this if I "walked" even more miles? Perhaps. And maybe in the future I will attempt a repeat of the experience.
As a further aside, having a rare disease like LEOPARD syndrome (with maybe two to three hundred of us at any time) is one of the reasons that the Ryan budget plan and the austerity measures scare me. Many Republicans ask why public money should be used for research, why not let corporations and the free market decide? Much of the research into this illness, while certainly done by civilian doctors, was funded by the NIH, and even some studies conducted by the DOD (Why is the DOD interested? Honestly, I don't know, and I don't care, if it leads to a better understanding of the condition) The next time you hear about odd government studies, rather than asking, "Why are we throwing our money away?" our question should be "Does it advance our understanding of the world around us?" If research can do that, or even help one person live a better life, it is money well spent.