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What Losing Vision Has Taught Me

Image of Shawn MaloneyMy ophthalmologist’s voice was firm and direct. “You’re going blind.” Tough words for a 5-year-old to digest.

Years later — despite efforts to cure my retinal disease, first as a graduate student, then as a postdoctoral researcher focused on ocular pathology — I came to accept the truth that those words carried. I was slowly being forced to adapt to a world not designed for me, or for any visually impaired person. But the progressive nature of my disease, retinitis pigmentosa, meant that time was on my side. I had time to change how I do things, how I communicate, how I think.

In life, I want the same things most people want: a successful career doing something I enjoy, plenty of time to spend with my family, the chance to pursue personal goals and an opportunity to put a dent in the world. Despite what I once feared, losing vision has not only allowed me to live the life I truly want to live; it has also taught me to do so.

After completing my undergraduate studies in 2005, I announced to my parents that I was setting off on a four-month backpacking trip across Europe. When they emphasized the importance of getting a job, I pulled out my trump card — my failing eyesight — and explained that I could not wait to see the world until I was 65, or even 35, because I would not be able to see much of anything at that point.

So off I went, with their eventual blessing and encouragement. I later penned and published Backpack, a book detailing my adventures, realizing that writing a book — a life goal of mine — would be easier to do while I still had some useful vision.

The same sense of do-it-now urgency prompted me to start my first business — Journal Prep, an academic publication support company — in 2010. But from the very beginning, I found it nearly impossible to work in the business, especially in the role of editor. My disability forced me to spend more time working on the business, hiring other — sighted — people to do the things I could not, and enlisting the help of my brother, Kyle, to coordinate daily activities. This was unfamiliar territory for me, yet it also offered a valuable lesson in leadership and served as the driving force behind the business’ rapid growth.

In my other job, as an ocular pathology researcher, my colleagues and superiors do not expect me to do any of the hands-on experimentation. Rather, my role centers on project conceptualization. I get paid to learn and think about ways to cure blindness, and I cannot imagine a more fulfilling job.

My dependence on hearing rather than seeing has freed me from the 9-to-5-at-a-desk workday. With the help of my assistant, I can handle emails via Skype while taking a walk. I frequently set up phone calls with potential business partners and clients rather than engaging in multi-part email exchanges.

My assistant tracks, reads and records research papers in my field, uploading the MP3 files to a shared Google folder on a weekly basis. I listen to these articles on my iPod while commuting to and from work. This allows me to keep up-to-date on the latest scientific research – including projects funded and supported by FFB – and the most thought-provoking business ideas.

The benefits of impaired vision have extended well beyond the boundaries of work. I now read for pleasure more than I ever have by listening to audiobooks while at the gym. I play with my kids without being distracted by alerts on my smartphone, which I recently downgraded to a “regular” phone. And I habitually embrace challenges put forth by friends and family — running a half-marathon, learning to cook and writing this blog post, for example — in part because I choose to be the one who defines my limitations.

My vision has never been worse and my quality of life never better. While I firmly believe that vision research has hit a tipping point and that blindness will soon become something of the past, I am thankful for the paradigm shift that I have personally experienced as a consequence of my own affliction with a blinding eye disease.

Pictured, above: Shawn Maloney

 


20 Responses to 'What Losing Vision Has Taught Me'

  1. I know nobody is perfect. Everybody has mental, physical or psychological problem in life. But they will always be happy and get success in their aim, who can accept it as life challenge them to tackle. I wish your vision would come back normal. Best of Luck Shawn.

  2. Lesle Walsh says:

    Dear Shawn,
    I also have RP, and both my sons have it. My father had it as well. I have two blogs and my RP is very advanced. I could relate to your article in a lot of ways. I wish more people understood retinitis pigmentosa, because it is too hard to explain, and not easy to live with, but I like your attitude. I like to think that I feel positive about it as well.

    Sincerely, Leslie Walsh

  3. Pam MacDonald says:

    You are a wonderful inspiration to all, especially people with sight that take it for granted and are not living their lives to the fullest. Life can be difficult or enjoyable…it’s all a matter of how you SEE it. Do you see it with your eyes or heart? That is how we all will determine how well we live. Good luck in the research. I hope some day people will get the full benefits of your hard work. Funny coincidence that I saw this post on facebook. I just cut your mom’s hair this week and we were just talking about Glen and yourself and this eye disease and how very successful you both are in your fields.

  4. Eric Pitter says:

    Great article. Your attitude is inspiring!

  5. Greg says:

    An inspiring entry that touches everyone on how we need to think about how to live the life we want to. Life doesn’t just happen to us, we can make life happen. Thank you Shawn.

  6. becky says:

    Well said – I find Retinitis Pigmentosa has been such an amazing teacher along the way. Wishing you well. Going to check out your book!

  7. Carson Chisholm says:

    Edifying commentary from a true visionary. Reminds me of a quote from Victor Frankl, ” What is to give light, must endure burning” Keep the faith Shawn. Cheers, Carson.

  8. Mary Lou says:

    I just attended my 2nd FFB Dining in the Dark last night. An awareness to many people who do take their vision for granted. I have a brother with RP, my 17-year old son was also diagnosed at age 5 with RP, and a day does not go by that I don’t pray for a cure. I am printing your article, and will order your book. You are an inspiration. Thank you!

  9. Samantha White says:

    Thank you for writing this article but most of all for your work in research.
    My husband also has RP. At first I didn’t fully grasp what I was signing up for. Now, even after years of beng with him, I must admit life would be easier if he could see. I’ll be with him through thick and thin but will always secretly hope he could fully share in all of our experiences and watching our daughter as she grows up.
    Your life and work are an inspiration. It’s one thing to have researchers fighting blindness but another thing for a researcher who has the disease to be involved. We read about potential cures from time to time but the risks involved are always very present in our minds.
    Thank you

  10. Loraine Ayres says:

    Thank you for the wonderful article> I lost a significant amount of my vision in my mid 30′s from a car accident. I had no option but to continue on. I had 4 boys that needed there mother. Through it all I found many struggles, but I knew I had to find options to pursueing a fulfilled life. I have always enjoyed adventure and traveling. So my sight loss has not held me back. I did find out however, my brain has to catch up with my vision loss. It was a huge issue in the beginning, but, through it all I have learned to laugh at a multitude of mishaps I have had.

  11. Kendra says:

    Thank you for encouraging those with challenges that we define our limitations. This is a great reminder and I will keep this in mind as my retinal disease progresses. Best of luck Shawn.

  12. Cheryul Byerfs says:

    I am 76years old and developed RP very late in life, as did my father. Most unusual. Fortunately I had a full career and life before RP. God has a sense of humor because I sat down in church next to a woman who is very hearing impaired and we have become very good friends. When we go out together, we tell people she can’t hear and I can’t see, so together we make one complete person. I’m sure we’re quite comical to anyone observing us, me running into people and she seeming to be ignoring them.

  13. Merrill Barter says:

    Shawn,

    What a great article! I also have RP, and am still working in a profession that requires me to use my vision extensively – which is becoming more difficult and stressful. I know it’s “time for a change,” and your perspectives and experiences are extremely encouraging. You set a great example that others should strive to emulate.

  14. Anibal Zubillaga says:

    Thank you Shawn for your article. It is inspiring and believe me it hit the very bottom of my heart. My son Alonso was diagnosed with RP when he was 16 and my daughter Maryajose is a carrier. My wife and I, as well as 2 oldest brothers, were shocked when we knew this. My wife and I come from large famlies and we still have very old relatives and were able to talk to them and nobody could tell us about this desease in either famly. I don’t know if Alonso had gone throughout this article but I’ll show it to him. He keeps checking on internet about RP, and as you mention we are very confident that a definite cure will be found very soon. During his lasts check ups his RP looks the same way as 3 years back, but it is really hard for him to focus during the night or netering into a dark space. But we’ll keep fighting and praying every single day for every one with, not only this desease, but any desease to find a complete cure. God bless you for this article

  15. Diane says:

    Many people question the ethics of advances in research ( genetic testing for early diagnosis) . You have been a great example of acceptance and living life to the fullest each and everyday. We are proud of your attitude and accomplishments . Your aunt Diane and uncle Randy

  16. Martha says:

    Thanks for share your story. Very inspirational. Good luck in your research.

  17. kishore says:

    Thanks for your inspiration and nobody is perfect in this world. Keep going strong.

  18. Jon Power says:

    Thanks for the article Shawn. As a young man with a form of Macular, it was great to read about your quality of life. I just got back from a trip to Israel as like you, I want to see as much of the world as possible.

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