Tuesday, September 8, 2015

Why I hate retinitis pigmentosa

:rant on.
The reason I hate retinitis pigmentosa(RP) is because it screw up my life big time.  For those who are reading this post, you probably already affected by this incurable blinding eye condition.  While you are slowly going blind and may be depressed, some people would try to cheer you up by saying something like there are worst medical conditions than blindness, this is a new challenge to do thing in different way, god give you RP for a reason, or other politically correct positive spin on blindness.  From my personal perspective, almost nothing is worst than blindness, not even life terminating illness like cancer.  With terminal cancer you know you have certain amount of time to live thus you can look forward for the end of suffering.  On the other hand, blindness has no certainty.  You could flatten by a truck next time you cross the street, or you could suffer blindness until age of 100.  The only certainty is that you can't do many things on your own and your quality of life keep worsening.  While some people look at the world through a pair of rose-colored eyeglasses, I live in a real world.  There is just not one thing good about RP.  Just for fun, I put down some positive spins about blindness that I heard over the years.

Some people believe RP just a minor inconvenience, more power to them and I wish you the best.  For me,  I was able to see for more than 40 years, going blind is a crippling handicap because:
  • I can't recognize the face of my wife, my children, and my friends. The clear face images of them in my mind were probably 10 years old.  Positive spin: they are forever young in your mind.
  • I feel guilty of passing this gene to our children.  Have I known  what I know now, I would not have any kid.  Even though I knew I had RP, I took the gamble in believing my kid would only have 50% chance of having RP.  Looking back, I think it was irresponsible  of me to take any chance to subject our children to this terrible condition.  Guilty as charged,  I hope someone would find a cure in their life time.   Positive spin: God has plan for everyone, even the blind one.
  • I can't do the job I like.  I was an electronic engineer before RP terminated my career.  I loved this job, I would have stay in this job until my boss sick of seeing me.  Anyway, I had this fun job for almost 32 years.  Positive spin: enjoy the early retirement.  Many people want to retire early and couldn't, lucky you.
  • On the subject of job choice, while this no longer affect me, I have heard some totally unpractical advice to others.  For example, many years ago in one of the RP support group, A young man  asked the group whether he should enroll in the Air Force Academy  because he want to be a fighter pilot. Even though he said he couldn't see well at night, many people said, go for it, follow your heart, don't let RP stop your dream, there would be a cure by the time your graduated.   Well, I hope that young man wake up from the dream long time ago.
  • I am no longer a productive member of the society.  I am now a burden of SSA.  Before you say why not find another job, I don't think anyone would hire a blind old man. Even a greeter at Walmart needs a pair of working eyes.  Even I found a job, there would  probably no way for me to get there in my area due to minimal public transportation service.  Positive spin: you paid the tax, why not enjoy the benefit.
  • I can't have a driver's license.  Now I have to depend on other to drive me around.  If I want to have dimsum, not a chance unless someone willing to drive you there.  My life events have to scheduled around others.  Positive spin: no more car payment, insurance payment, or up keep.  Enjoy the half bus fare too.
  • I loved to watch movie on big screen.  I haven't stepped in a movie theater for years because I couldn't see the whole movie screen.  Watch Star War movie on DVD with descriptive audio is just not the same.  Positive spin: save money on the ticket and pop corn and soda.
  • I enjoyed reading books and magazines.  Now a day, I have to listen audio books and magazines instead, the experience is just not the same.  No audio could fully describe the pictures, diagrams, or any other visual elements.  Positive spin: free audio book and magazine download from BARD. 
  • I loved cooking.  In my  early better eye years, I often invited my friends over to share my Chinese cooking and BBQ.  Couldn't do that easily anymore.   I tried to cook some lunch recently for myself and made a mess.  I had to trouble my wife to clean it up.
  • I feel my life like that of a critically ill patient in an ICU.  Instead of breathing tube, IV lines, etc I have to depend on various low vision aids just to keep up with simple daily tasks.  Without these tools, I would be completely helpless.  FYI.  this is list of low vision aids I been using.
  • I hate using restroom in public places, especially the one with dim lighting,  because I find it extremely humiliating to ask someone for the location of an urinal or a toilet.  I try to hold the business if I could. 
  • So what can I do? A whole lot of nothing.  I eat, sleep, poop, and ponder the meaning of my life.  I had  nightmare as the result from these pondering.
The reason I write this post is that no one wants to talk about blindness in negative way probably due to the current state of political correctness about every thing.  Mass media only talk about how a blind person climbed  a mountain or flew an airplane or other inspiring stories.  Those stories gave the public the misconception that blind people have extraordinary power.   I guess no one want to know how most blind people struggle with daily live like me. I am just bit tired of hearing all those inspiring stories and I hope this post would provide some balance.  Secondly,  I feel good about this ranting, it is better than seeing a shrink. 

Final rant, awhile back someone  said to me that God gives the toughest  battle to his strongest soldiers  When I question is this how your God rewards his strongest soldiers by disabling them with a blinding disease?  I was told not to question it because God works in a mysterious way.  I think this is a shipload of crap, what an irrational rationalization.
:rant off.


  • The bar chart shows blindness is one of the top fear medical condition among American.  Read the full AFB opinion survey here.

bar graph showing how many Americans believe that severe vision loss would have the most negative impact on their quality of life (21%), compared to paralysis (also 21%), HIV/AIDS (16%), cancer (14%), stroke (11%), heart attacks/disease (6%), diabetes (4%), and deafness (3%).