Thursday, November 21, 2013

Adjusting to Blindness

 I found out I have retinitis pigmentosa (RP) during a routine eye check up in 1980.  My eye doctor saw some dark spots on my retina  and sent me to see a retina specialist.  After looking at my retina and seeing the visual field testing result, the retina specialist confirmed that I indeed have RP and I was told I would probably go blind by middle age.  I  was so traumatized by the news, I  was barely able to drive back home.   I couldn't imagine a life without sight, and I was thinking I would die rather than living as a blind person.  Over the years, I kept asking why me?  I even wanted  go over to the dark side in order to keep my eye sight but I got lost along the way because I refused to use a white cane back then.
For years, I lived in the shardow of going blind and self denial.  I spent countless hours on hoping and searching for a cure.  Because I did not accept the fact that my  vision was getting worse, I kept driving for many more years and got into few auto accidents and many close calls.  Luckly no one got hurt.  Although I knew my luck would run out one day but I kept driving.  In 2005 my vision became so poor that I was not able to renew my driver's license.  While I was sadden by this but it was also a big relief for me because I would not able to hurt anyone or myself due to my unsafe driving.   Soon after, I fully accepted my fate and asked for professional help to deal with my vision loss. 

I was the sort of men who refuse to ask direction even I got loss while driving.  I was too proud, too independent, and too stubborn, so asking for help was one of most difficult thing for me to do.  However, I have to ask for help if I don't want my life get even more difficult.  Now a day, asking for help is my new normal.  
 In the process of learning to deal with low vision, I found my personal adjusting experience was closely matched with Dr. Dean Tuttle's research on how people adjusting and coping with blindness.  In his book, Self-Esteem and Adjusting With Blindness, he described the following seven phases that many people go through with the  adjusting Process:
Phase 1. Trauma
Phase 2. Shock and Denial
Phase 3. Mourning and Withdrawal
Phase 4. Succumbing and Depression
Phase 5. Reassessment and Reaffirmation
Phase 6. Coping and Mobilization
Phase 7. Self-Acceptance and Self-Esteem

For years, I was stuck in the phase 2-3-4 loop.  Although  I have moved on with my life, I am sure I would go back to the loop when my vision get worse down the road.  The best I can hope for is I would die of old age before facing even worse vision problem.   
Please go to the following link for a brief description on each phase.
Phases Description
Dr. Dean Tutter was a professor of special education with University of Northern Colorado.  His vision loss was due to RP.  Learn more about Dr. Tuttle at the following link.
Interview With Dr. Tuttle

 Adjusting to vision  loss is tough and it would have a great impact on your life and your future plans.  People around you might say a lot of nice things and give you a lot of encouragement, but only you can figure out how to live your life.  The following are probably not the most politically correct things to say, but they are hard cold reality.  Many people live by the slogan "Why settle when you can select." If you are blind or visually impaired, often time you have to settle for second or third choice.  Here are few things to consider:
  • What kind of job you like to do which also determine what you go to study in school.  Be realistic and practical.  Your dream job may be become a pilot or a police officer, but can you do it?  People might say don’t let vision loss prevent you from your dream, but dream and reality are totally different things.
  • Your career might be cut short due to your vision loss.  Do you have an alternative job skill that would not totally depend on your eye sight?   You might want to contact your local agency ASAP for training on new skill which could help you to keep your current job or preparing for a new job.  About 80% of blind adults in USA are unemployed, consider youself very lucky if you have any sort of paying job.
  • Make sure you have enough work credits to qualify for social security disability insurance (SSDI).  Save, save, save, because you might not able to live just on the SSDI benefit payment.  Buy a private long term disability (LTD) insurance if you can afford it.  If you are lucky, you might have LTD from your employer.   If you drive or operate heavy equipment on your job, get a life insurance to protect your love one.  Better yet, get it different job if you could.
  • Sooner or later, you might not able to drive.  Investigate transportation option in your area.   You might want to live in a big city where driving is not necessary.
  • Love is not blind.  Make sure your potential mate does not have RP or other serious eye condition.  Make sure your potential mate fully aware your condition and can deal with it long term.  Mating game is a two way street,  people with disability probably encounter many rejection and disappointment before finding a mate.
  • If you plan to have kid,  beware the consequence.  There is good chance that your kid would have RP or become a carrier.  Can you deal with your own as well as your kid's vision issue?

If you have to put a positive spin on blindness, it has the following "perks".  Seriously, I would give them up and more in exchange for one good eye. 
  • Extra deduction on your income tax form.  As far as I can tell, blindness is the only disability that IRS let you take the extra deduction, so it must be really sucks.
  • Relative low medical insurance via Medicare program after being disabled for 24 months.
  • Excused from jury duty.
  • Discounted fare on many public transportation, and almost always get a seat in them.
  • Early boarding on airplane ride.  Some airport even let you use the shorter security check in line.
  • Free access to audio books and player, at least in USA.
  • Handicapped parking permit.
  • Free fishing license in some states.  This is my favor.
  • Bring your guide dog with you almost everywhere.

How I adapt

    What is it like to be blind?

1 comment:

  1. Thank you so much for these information. I really liked your article. I found it really amusing. I am also a patient of this disease. So I think I can now get this get retinitis pigmentosa treatment started taking.