My husband, Jefferson, was born with a disease of the eye called Retinitis Pigmentosa. RP is a progressive hereditary disease that causes the fields of vision to close in over time. He inherited it from his mother’s side of the family. As a special bonus, there is a strain of legally blinding degenerative myopia (near-sightedness) running through his father’s side of the family. Jeff inherited that as well. Imagine looking through a porthole about one inch in diameter and smearing Vaseline over the glass of that porthole. Actually, for Jeff it’s more of a diving mask in shape, but you get the idea. Although there are several members of both sides of his extended family who are legally blind, Jeff is the only one to inherit the double threat. He wins the blind prize.
Unlike several other visually impaired members of his family, Jeff was diagnosed and informed of his condition at a very young age. His young, pliable mind was able to process the information and prepare him for the struggles to come. Two of his cousins with RP had been shielded from the knowledge by loving parents who wanted them to enjoy their normal childhoods before the disease was mature enough in them to limit their fields significantly. Sadly, the revelations came for both came at a time when they had mapped out life plans and settled on future careers that would not be possible (no Americans with Disabilities Act mandate or politically correct agenda has yet found a way to paint a program that will allow a blind man to become an airline pilot).
In this, as in so many things, Jeff was fortunate. He learned to rely on his mind and his character. He possesses an amazingly high sense of himself. He respects his limitations and excepts nothing that does not fall within them. He knows that he will only become blinder over time, and he enjoys everything he can now, while preparing himself mentally, emotionally, and practically for each change that every year will bring. And he’s funny as hell.
Living with someone with a disability is exactly as hard as you make it, plus one. The plus one is the disability. That’s a given. I will always be the designated driver. I will spend more time than most searching for a tube sock, watch, or god knows what that the demonic cat decided to remove from its carefully placed location. I am in charge of the grocery shopping. Good, done, I get credit for the plus one. My husband is happy to give me the credit, so I get to use it at will in shoe stores and at restaurants. Beyond the moderate addition to my physical work load over other couples (and I still come out ahead of the woman married to the couch potato who cracks a beer as soon as he walks in form the office), it’s up to Jeff and I to decide how hard it is. We have decided to balance our lives out with what we refer to as BGPs: Blind Guy Perks. Jeff gets to ride public transportation for free, with a guide. I have an MBTA (the Mass Bay Transit Authority- the public transportation system of the Greater Boston Area) pass that I buy monthly and allows me to ride without paying at the turnstiles. When I am with Jeff, I refuse to pull it out, even though it makes absolutely no difference monetarily. I’m free. It’s my BGP and I want it! We love our handicapped parking placard and I am not above dragging Jeff along when I am going somewhere that might be a particular parking challenge. BGP, baby! It makes Christmas shopping a whole other experience. Many’s a time that a rock concert or ball game was completely sold out- unless you can get the blind guy seats, that is!
My favorite BGPs, however, are the ones that come unexpectedly. The good person who recognizes Jeff’s visual impairment and goes out of his or her way to make things easy for him. The people who see him reading or writing in his PK Braille laptop and come up to him and inquire about it and end up being more impressed with him than the machine. The way he learned to read Braille at the age of forty and became the production coordinator of a major publisher of Braille by the age of forty-one, changing his life and instilling in him a new passion. These things we take every day from the world and consider them gifts just for us that few people get to experience.
Of course, it’s Jeff who makes this possible. He is so positive and accepting. If you ask him, as I have, if he’d change his vision if he could, his answer says it all. He says that he would be first in line if there was an operation available that could restore his sight. He’d check himself in tomorrow. However, if the choice was to be born without his eye diseases, he’d have to decline. He likes who he is and how he has chosen to conduct his life. He considers it too great a risk to take that he might not be the same person with the same temperament, ideals, philosophies, and the like if he had not been forced to live the life he’s lived.
So my advice is this. If you are living with someone with a disability, then live with someone with a disability. Do not live with a disabled person. It is not the same thing, and you and your partner are robbing yourselves of a world of perks and pleasures that others will never experience. The world is full of balance. Make sure your scale is even.