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Driving: A Very Familiar Story …Sort Of

image of hand on steering wheelWith the Foundation’s Save Your Vision Month starting next week, I thought it might be a good time to share my thoughts about a tough decision many people affected by retinal diseases have to make – the decision to stop driving.

As is often the case with retinitis pigmentosa, or RP, I had relatively good vision early in life, only to have it decline over a few decades. I’m now 53, and I was lucky enough to be able to drive until I was almost 40. Between 18 and 40, however, I had to abide by the “rules” of visually impaired driving. I rarely drove at night, tried to stay in familiar areas, avoided inclement weather whenever I could – the list goes on.

I’d bet a fair amount of money, however, that no one’s experienced what I’m about to describe.

I was a partner in a law firm in Illinois for 20 years, beginning in 1986. Back then, I was very much a closet RPer and, therefore, said nothing to those who hired me as a young associate. Deep down, I knew I was hiding something of potential significance, but the fear of being turned down for the job, coupled with denial (and thinking, “It won’t get that bad for me”), guided my thoughts at age 27.

Somehow, I was able to keep the secret until my vision worsened to the point where I had to tell one of my law partners. He was surprised, but not shocked. He’d noticed little signs of poor vision, but because I lived only half a mile from the office, and could “safely” get home after dark, he never sensed the enormity of what I was dealing with. So I continued driving.

I did change my work habits, to try and eliminate risky situations. But when those adjustments weren’t possible, I sought the help of my partner, whom I also considered a friend. And, to this day, I still can’t believe what we did.

I was determined to drive home at night, even in rain and snowstorms, as long as I could see the taillights of the car in front of me. That car was driven by my law partner, who would lead me out of the parking lot and along the half-mile route to my house. I assured him I could make it into my driveway, as it was flanked by reflective markers.

So, picture this: One very intelligent, caring and compassionate lawyer leading the way, in a Mercedes, for his legally blind, 10-years-younger partner, in his Volvo, virtually bumper to bumper through the streets of DeKalb. This lunacy continued for a couple years, even though I knew I was pushing my luck.

But that’s the thing: The fear and anxiety of giving up driving overwhelmed me and consumed much of my rational thought.

Finally, one Friday – July 9, 1999, to be exact – my guide and another partner in the firm came into my office and said, “We need to talk.” I invited them to sit down, and some awkward silence ensued. Then, my senior partner spoke:  “You have to stop driving.”

I said nothing. I remember looking at the floor, resting my forehead on my hand. Finally, I looked up at him and said, “You’re right.” I was at the same time scared and relieved.

Ten minutes later, I called home, and my wife, Pam, answered. At the time, our daughters were ages 11 and 8, and we had not told them about my RP. I asked Pam to come get me at the office and to bring along another driver, so as to pick up my car. I briefly explained to her what had happened at the office, and she began to cry – tears of joy, not sadness.

About 30 minutes later, she and her father came to get me. I haven’t driven since.

20 Responses to 'Driving: A Very Familiar Story …Sort Of'

  1. Ann Corneille says:

    My dear brother, your strength dealing with the life God gave you amazes me.
    Love you always, Ann

  2. Patti Mueller says:

    Such a hard thing to give up that independence. I saw my brother forced to stop driving by his doctor at age 30 and await the moment my sons who are 18 & 17 will have stop. It is such a cruel disease, but I remain cautiously optimistic that a cure or treatment will be discovered in my sons’ lifetime.

  3. Joan Key says:

    Dear John, I understand what you went through. I have Usher’s Syndrome and knew that I would have to stop driving also. I was having a field vision test & the lady wanted to know what highway I was driving on….she didn’t want to be on the same highway. Talk about feeling helpless & afraid…

    I pulled into a truck on my way to the grocery store late one afternoon…no one was injured, but the reality hit me that I could have killed someone! That was 3 years ago….it was hard at first, but as time went by I was relieved not to be driving & worrying if I would have an accident or hurt someone!

    God bless you, your family and especially your very understanding co-workers!!


    • EyeOnTheCure says:

      Joan: Thank you for your comments and blessings. When I think back and consider all of the risks I took while driving, I truly must be blessed in some way because I never hurt anyone or myself. Sadly, I am sure there was a lot of “blind luck” involved with avoiding accidents. – John

  4. Rebecca says:

    Thank you for posting this. I am a 37 year old attorney in Dallas with RP and I know my driving days are numbered. I did not tell the attorneys I work with about my vision issue for years unless it was a need to know situation. I am glad that your decision to give up driving turned out to be a relief.

    • EyeOnTheCure says:

      Rebecca: Thanks for the comment. I really did think that life was going to come to an end for me when that fateful day of giving up my keys arrived. While life certainly changed for me, I really don’t think about it (driving) much anymore. – John

    • Ralph says:

      Hello Rebecca,
      I recently retired from my federal officer position of 31 yrs. I also fully retired from the Navy Reserves as well. During those years, I managed to keep my RP to myself….a story in itself. I now limit myself to driving in daylight hours and only in places I’m familiar with. I think the hardest thing for me to do will be giving up my DL. But I certainly would if it became necessary.
      I’m now looking for a retirement job and have some anxiety starting something new.
      If you have any questions, please don’t hesitate to contact me.

  5. Betsy Brint says:

    I must say the image of a “guide car” – like that of a “guide dog” is one that both makes me laugh and scares the heck out of me. It takes courage to admit it is time to turn in your keys. Thank you for sharing your story. I think this is one that can be applied to many people, some as they lose their vision, and others as they simply age. Now, maybe it’s time to consider getting that dog…

    • EyeOnTheCure says:

      Betsy: In hindsight, a pretty amazing (stupid?) thing we did back then with the guide car. I think about getting a dog often but am not ready yet. Do yu know any guide dogs with taillights?! – John

  6. Anne says:

    You are unfortunate to have the vision problems that you do but fortunate to have some business partners and associates who appear to be both compassionate and intelligent people who no doubt felt torn about how best to help you.

    I worry every day for my son who has juvenile retinoschesis. He is 41 now. When he was just 7 and diagnosed with this problem, a genetic x-linked disorder for which I as the carrier feel responsible. I remember feeling heart-broken listening to his little boy chatter (he had a sizable collection of HOT WHEELS) about how when he got older he was going to have “this” kind of car and where and what he was going to do because I thought he’d never be able to drive. Like you, however, he has been able to drive thus far but the problems are mounting and he’s developed cataracts due to the fact he works outside in the sun most days. He’s had the surgery for cataracts and had to have “repair” work done on them once already which isn’t cheap.

    My son is in a loop or cycle, basically, of trying to stay one-step ahead of things, but it doesn’t always work. For a few days he was blind for anything other than stumble around his apartment till he got the “repairs” done on the lens implants for cataracts. But it all costs money that is increasingly hard to come by – none of its covered by insurance. And his employers will not be as considerate as your partners were, exactly the opposite he has lost jobs because of his vision problems. For his last employers, he told them of his potential problems and their reaction was not to help but to continually harrass and his personal health problems became office chatter and he lost his job. So now he wonders, what do I tell my next employer? The facts are that he should not be working because his employment is continuing to add to an already intractable problem but he does because he has no choice. He has tried to get on disability but to no avail. I’m sure he could eventually but they have this waiting game I think where they take so long in the process that you are forced to try again. Some would say he’s wrong for continuing his employment when it requires him to drive daily in busy metro traffic which is dangerous enough for someone with perfect vision. I understand the thinking behind that but I also understand “what are his choices”. I haven’t the ability to pay his expenses as I live on a fixed income. There is no other means of support for him than to continue to work which continues to add to the problem.

    I get very depressed for him. He has gotten to where he doesn’t talk to me about his difficulties very often except in a crisis. His way of dealing with it seems to be in some ways denial and in other ways a self-imposed punishment, near as I can tell, for some perceived “sin” of his life that has left him so unfortunately situated.

    He’s not a shirker and I’m sure that if he could get disability he would get an education to do something that would still be possible and that doesn’t involved the daily driving hazards he faces now.

    I don’t know what the answer is.

    But anyway, I try to stay on top of what’s going on. He, on the other hand, feels discouraged and disappointed and mostly sticks with his somewhat angry denial of his situation, which is heartbreaking for me as the cause of his problem and just because I’m his mother and I care deeply about him.

    So in the course of my explorations I happened on what you’ve written here. It’s nice to know there are people out there who really do try and help and what to do the right thing as your partners did. I hope you are always surrounded by supportive people. Everyone deserves support through what seems like insurmountable problems. I’m glad you found it.

    I hope this doesn’t sound too depressing, I just needed to ‘get it out’ I guess, where my feelings and thoughts have been for my son.

    • EyeOnTheCure says:

      Dear Ann,

      Thank you for responding to my post.

      One of many comments you made that really struck a chord with me was the one where you seem to blame yourself for your son’s eye condition. Obviously, this is not your fault but I can candidly tell you that my mother feels the same way about me. She has commented many times over the years about “If only….” While I understand the feeling of guilt you and my mother share, please do not spend your emotional time dwelling on that.

      For your son, the fact he works in an urban area could prove beneficial as, generally speaking, public transportation is more readily available.

      Is your son connected with the Foundation? If he is not, please encourage him to do so as it will put him in contact with many others similarly situated and likely provide him useful guidance as he continues to face challenging days ahead of him.

      Easy for me to say, but remaining angry and in denial of his problem will not be helpful for him. I lived in denial most of my life, so I understand that feeling, but for whatever reason I was never angry. Sure, there are “down” days but getting connected with FFB and all of the positive, successful people I have met has shown me that life can truly be fulfilling, productive and rewarding in spite of severe vision loss resulting in the loss of driving.

      My limited experience with Social Security Disability tells me that he needs to find some good help with it. This can either be through an experienced lawyer, or someone else who has been through the process.

      Hang in there, keep your chin up and all will be well. Your son will need your strong guidance and love now and in the future.

      – John

  7. april says:

    dear john,
    thank you so much for posting to share your experience as i too am wading through the same waters; i am almost 42 and it’s time to renew my license. i do not know if i will pass the vision test nor do i know how much longer i will have the ability and freedom that comes with driving. i have been in mourning for some time as my night vision has wained and the daylight is excruciating to my overly sensitive eyes.

    • EyeOnTheCure says:

      Dear April,

      Thank you for responding to my post. Reading your comments brought back many not-so-great memories of every 4 years sweating out the renewal of my driver’s license. Somehow, I was able to pass each vision test I had to take and I think it was because my “islands of vision” that are so common with RP happened to be in locations that allowed me to barely see the light blinking for the peripheral vision test. I suspect I also cheated a bit, moving my eyes side-to-side hoping the examiner would not notice.

      I wish I could wave that magic wand and help you, but I cannot. Driving is an incredibly personal thing and you are the only one who really knows when the time to stop has arrived.

      My thoughts and prayers are with you. Stay connected with FFB as it will truly help you as you deal with the driving, and other, issues.

      – John

  8. Janet says:

    My husband has had problematic vision his entire life, but was not diagnosed with RP until he lost his glasses in a natural disaster. The optometrist said he had never seen it before, but he referred us to a specialist where the diagnosis was confirmed. He worked as a close-tolerance Class 1 machinist and a part-time school bus driver. He had always been accident-prone and vehicular incidents were not uncommon. He quit bus driving immediately. I must admit that I laid a guilt trip on him, asking him how he could live with himself if he injured or killed someone because of his poor driving. He agreed to quit driving. I had to get him to and from work. He was afraid to tell anyone at work about his RP until he got injured and was on light-duty in the office where he met a man with obvious visual limitations. This guy finally confided in him that he was legally blind, but scared to acknowledge it because he needed his job to support his family. I started giving him a lift to and from work, too. His job was non-union and my husband’s was a union position. My husband was the one who was eventually forced out. I was really proud of him for giving up his driving privileges and for noticing a fellow employee who needed assistance.

    • EyeOnTheCure says:


      Thank you for responding to my blog post. Listening to your story brought back a lot of memories for me. There are many fears and challenges those of us with RP, and vision loss in general, face but I really think that driving and employment are at or near the top of the list.

      Acceptance of his vision loss and confronting it head-on are major events for your husband. I can say this to you from my own, personal experience as once I realized I could no longer hide the RP, I began spending my time on how to deal with life under these circumstances instead of thinking about and wasting mental energy on ways to deny and avoid reality.

      Stay connected with FFB…it is our best hope for the future!

      Thank you Janet.

      – John

  9. You actually make it seem so easy with your presentation
    but I find this matter to be actually something that I think I would never understand.
    It seems too complicated and extremely broad for me. I’m looking forward for
    your next post, I’ll try to get the hang of it!

  10. Stacey Rosa says:

    I am a 44 year old female was “clinically” diagnosed with Stargardt’s Disease about 4 years ago. I say clinically because I’ve had 2 negative gene tests for the known genes that cause the disease.
    The day they told me I basically had a nervous breakdown.
    I used to race cars in my earlier days and have worked in the automotive industry my whole life. The thought of not being able to drive anymore or to have someone actually take my license away was terrifying! That had been my life, my independence, my freedom and passion for so many years. How can this be taken away from me?
    And because of the negative gene diagnosis, I guess you could say I went into denial. They must be wrong! Not me!!! That was 4 years ago now.
    I ran out and leased myself a brand new Cadillac. God I loved that car! And I drove it like I stole it!
    3 years later, lease is coming up a week b4 my next visit to the doc who refers to me as his “Mystery Patient”. (Not very reassuring)
    I buy a used car… Surely thinking he is going to yank my right to freedom. Well, surprisingly he asked if I was still driving and I said that I was. He said ok and told me to come back in 2 years.
    I ran out and leased myself a new GMC Terrain. Another great vehicle btw.
    So a few months later, night vision decreases drastically. Sensitivity to sun is making my eyes water so bad I can’t see.
    So, I’ve stopped driving at night by my own decision. It’s not safe and I know it, so I just don’t do it.
    I have found some yellow lensed glasses that have helped me with the headaches I was getting from the sun. They also help stabilize my light to dark adaptation going in and out of buildings. The headaches were getting unbearable before I found them.
    If it’s raining really bad, can’t drive. Snowing? Same thing.
    Lease is up Feb 2017, and license renewal is in June. I know I can’t pass the eye test as I couldn’t for the last job I had to take a eye test for 3 years ago. (They hired me anyway). So the time is coming in June 2017. Nothing I can do about it. I hate it with all my might but we deal with what life throws at us.
    I’m probably not going to go down pretty or totally willing but I’m preparing myself so hopefully it won’t be another depression break down.
    I’m still working, but for how much longer? Only God knows that answer, so I leave it in his hands and just be very careful out there in the meantime.
    Thanks so much for your post. It’s so nice to know you are not the only one dealing with these issues. Helps you feel human again.

  11. Aaron Blake says:

    Thanks for sharing the story. I was diagnosed with type 2 ushers syndrome when I was 16. I drove for the remainder of high school, about 2 years, then chose to give up my license after too many close calls, many fender benders and 6 vehicles. It is never easy to give things up. I currently have a very small tunnel of vision with partial blurriness and recently started using a white cane after many years of running into things and people and also as a “deterrent” if you will so others know to watch out. I’m 32 with 2 children who understand the simple fact that I am slowly losing my sight. They deal with some bumps from me on a daily basis and we all make the best of it. Wear a smile, enjoy the ride, play the cards you’ve been dealt. Life is only as good as your mindset, why not enjoy it?

  12. Rebecca Joy says:

    I plan on giving up my license tomorrow. I’m 37 and have RP (retinitis pigmentosa) plus an ear condition that can cause dizziness. I haven’t driven since last spring.
    I wanted to give up my license the moment since the eye doctor suspected RP (before the testing was even done).

    I’ve known about RP most of my life because my mom had it. My uncle also has it. My mom drove for about 4 years after she should according to her eye doctor. My uncle was worse — 8 years plus totaled two vehicles.

    I’m determined to give up driving when it’s still my choice — before it’s medically necessary. What’s amazed me is those close to me struggle to see how stressful it was for me to drive (for about 6 months) till I could get rides. I was extra stressed because I was the one that usually drove my daughter (age 2 at the time) and sometimes it was dark.
    I wish people could realize that driving isn’t always fun. It can be hard. (Being in a car can be hard because I’ve lost loved ones in car wrecks plus been rear-ended multiple times — and that’s not linked to the RP.)

    I’m rambling, but want to say you shouldn’t have to keep a driver’s license just in case of an emergency. (If driving is a big stressor already I don’t see myself driving during an emergency.

    Please be kind for those around you. If they aren’t up to driving for whatever the reason help them. If they need to have an good eye exam tell them. (I often tell my sister that she needs her eyes checked.)

    Please let the culture change to where it’s okay not to drive.

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