Yesterday, my last full day at VISIONS 2012, started off in what may seem an odd way, in that I prevented the hotel maid service from doing its job. I did so by hanging the “Do Not Disturb” tag outside my door, a trick I learned a couple years ago, not long after I began venturing out on trips like this on my own.
You might be asking yourself, Why does John not want his room cleaned? After all, it doesn’t cost anything extra to have clean, fresh towels and new sheets every day, right?
Well, the answer is simple: When they clean a room, they move all of my “stuff” around. (Do some of you remember the George Carlin routine about all of our “stuff?”) When I first check into a hotel room, I take time to orient myself with the layout, and then place my clothes, suitcase and toiletries in certain spots.
I come to rely upon those things being in the same place, and when they are not, it creates an unnecessary source of frustration. I also have found that putting the tag on my door helps me know that I have found the right room when I return to it.
Lastly, as great a job as my wife does keeping our home clean, we do NOT sleep on fresh sheets every night. Do you?
Let me mention just a bit about why I am here alone. Those of us who are visually impaired need to be able to do as much as we can on our own, even if that means regularly testing ourselves. I viewed the five-day VISIONS conference as one of those tests. Yes, having my wife here would have been wonderful, as she always enjoyed the VISIONS conferences she attended with me when I was strictly a volunteer.
In November of 2010, however, I became a part-time staff member, which meant that I’d be working at VISIONS. And the reality is, she can’t be with me every trip I take, partly because she works full-time herself.
She and my children always provide me with tremendous help and support, and would have done so at VISIONS 2012, but the need for me to continue to gain confidence travelling on my own could not be ignored. Those who are visually impaired need these challenges from time to time. It not only helps us increase our independence, it also gives our loved ones and caretakers a bit of respite that they so richly deserve.
So, with that in mind, I’ve continually tested myself over the past several days, going to and from my room without assistance the vast majority of the time. Beyond that, however, I have had wonderful help from Foundation staff and many of my friends here at VISIONS.
That said, it hasn’t all been easy. Yesterday ended, for instance, with a dinner during which a number of awards were presented to volunteers, trustees and board members, and I was reminded of how an otherwise wonderful evening can take a turn. This happened when the “formal” part of the evening was finished and the “party” began.
The “party” consisted of the music being turned on, for dancing, and people getting up from their chairs at their tables and moving about the room, chatting and mingling with one another. Not being able to see the faces or lips of the people I am trying to speak with, coupled with the loud music, makes me feel a bit uneasy. I know that at least some of you who have vision loss know what I’m talking about. I tried for while to tough it out, but finally gave in to the reality that I’d have to retire for the night. So I asked someone for assistance to the elevator and headed to my room.
Now, I don’t want to give the wrong impression. There were many visually impaired attendees who not only enjoyed the music, but hit the dance floor for the next couple hours. It’s just that, at this point, I’m not ready to do the same. Plus, I’m no Fred Astaire.
Without hesitation, I can tell you my experience at VISIONS 2012 was extremely rewarding, as I knew it would be. The challenges I had navigating some aspects of it I simply chalk up to another of those many tests we all face on a regular basis.
There are more to come, and I’m thankful I’m on this journey with FFB.
- John Corneille







Steve is highly respected for his expertise and tireless commitment to finding treatments and cures for vision-robbing retinal diseases.
As the Foundation's senior science writer, Ben writes science and research articles for the Foundation’s website, newsletters and Eye on the Cure blog.
As the Foundation's senior writer, Rich writes and edits content for all of the Foundation’s print and online publications, including its blog, Eye on the Cure. 
Great post, John! A friend on the RPList just posted about the importance of testing oneself and traveling alone-Maybe someone is trying to give me a hint?! Smiley face.
Best,
Nat
Thank you Natalie. We’re so happy to hear this post has made an impact!
John,
Thank you for sharing your experience. I would not have thought about going traveling to a convention alone, but agree we need to be as independent as possible. I can totally relate with your difficulties when the “party” began. I also have a significant loss of vision RP), now coupled with mod-severe hearing loss in both ears (low tones), so quite often feel out of place in groups of people, especially in large social gatherings. I muddle through, but have not figured out how to be comfortable in it. if you discover that trick, please share it!:)
Debby
Hi Debby, thanks for the support and for sharing a bit of your story with us. You can expect to hear more from us on this kind of information, and so we greatly appreciate the feedback and comments!
Great to read your experiences…we listened to your first blog too.
Keep up the great work!!
Glad you had a good trip!!
Dude & Mary
Thanks for the support! We’ll be doing similar experience and coping posts in the future. please stay tuned!
I agree with John Corneille’s philosophy. Through its research efforts, FFB provides hope for better things to come vision-wise. This is great but let’s not fool ourselves, it could be a long wait! So invest some time learning and practicing skills that can enhance your day-to-day living. This is another way you can fight blindness.
Hi Jim, thanks for your support and your thoughts!