A PXEer's Success Story
PXE Vision: By and For PXEers
by Pat Manson
A PXEer's Success Story
You can call Steve Watson lots of things: strong, persistent, resourceful, self-aware. Just don´t call this PXEer merely lucky—because he isn´t. He suffered substantial vision loss and, as recently as 3 years ago, had given up driving and feared that he would no longer be able to work. But Steve bravely fought through that loss and learned to manage his new vision. You make your own luck when it comes to vision loss, and he has done just that. Steve´s inspiring story is unquestionably one of success.
A resident of Tempe, Arizona, Steve, 57, is married and the father of a daughter (20) and a son (18), now both in college. He works as a supervisor of brokerage services at The Vanguard Group, one of the country´s largest investment companies. (Full disclosure: my family has invested with Vanguard for years.) His wife Carolyn, 51, is a pharmaceutical sales representative with the French firm Sanofi-Aventis.
Steve was first diagnosed with PXE in 1983, when he was 31. He had been experiencing metamorphopsia, the wavy vision caused by CNV, and saw a doctor. He was diagnosed with PXE and then given a hot laser treatment to his left retina. The treatment failed, and he lost a fair amount of his central vision in that eye. After Steve was diagnosed, his older sister was tested as well. She had been having some vision problems and, like Steve, had some odd-looking skin in places. She, too, was diagnosed with PXE.
Like many other PXEers, after his initial diagnosis Steve watched and waited—watched the news slowly emerging on PXE and waited, hoping for no further retinal activity. In the meantime, his sister, without the medical treatments that later became available, lost her remaining central vision. Steve and Carolyn began educating themselves on PXE and attended some PXE International and NAPE meetings.
Fast forward to 2004 when Steve and Carolyn attended PXE International´s 2004 Biennial Meeting inArlington, Virginia, where I first met them. They had come there to continue gathering information and to meet other PXEers and their families. I remember Steve explaining that he was not particularly worried about his future. He had been assured by his retinologist that his right eye—his good eye—was safe: the angioid streaks in that eye were far from his macula. He was indeed, fortunate, it seemed. But Steve´s luck didn´t hold up.
In January 2005, just 3 months after that meeting, Steve suffered a major bleed in his good eye, and his life changed—permanently, he feared. The world appeared as if he were looking at it “through a veil.” Accordingly, some things changed immediately, others more gradually. He soon had to give up driving, instead taking the bus to work or getting rides with others. He hated the loss of independence, and the bus route took much longer, cutting into his time at both ends of the work day. His job at Vanguard required many hours on the computer, reading spreadsheets and other small-font financial documents. He also had to attend numerous meetings where data he now struggled to read were often presented. Because he was a supervisor, he also had to make his own presentations, often with slides and visual aids. All of these tasks became far more difficult, if not impossible. His performance suffered and his confidence was shaken. He was scared.
Looking back now on the 22-year gap between his 2 serious retinal episodes, Steve believes that for him “PXE was something abstract, something I couldn´t really get my arms around.” That had now changed for him; it had become all too real. “When you lose the vision in that second eye, you never have a day where you don´t think about having PXE.”
Despite his concerns for the future, Steve describes himself as being “pretty matter of fact” about the new development. He had seen his sister handle her vision loss with “grace and dignity,” maintaining a full life. He was determined to minimize the impact on his family and to serve as a role model for his children who, at 18 and 16, were particularly impressionable, he felt. He had also met other PXEers at the conferences he´d attended who had matched his sister´s resolve and accomplishments.
He assessed his situation and decided to fight back, starting with his medical care. He had promptly seen his retinologist after the new bleed and was given a hot laser treatment, the “tried and true” approach as his doctor described it. When that didn´t work, Steve pushed for a more modern treatment and received both a PDT and a Macugen injection. After 2 more Macugen treatments, he later pushed for Avastin and has since had 7 or 8 injections. The Avastin injections stabilized his CNV, requiring treatments less often, and they eventually improved his vision, even to the point that he could return to driving.
On the employment front, he had 2 valuable allies, the State of Arizona and Vanguard. Shortly after his second eye episode, Steve became a client of Arizona´s Department of Economic Security. There he was assigned to an individual consultant whose job it was to help Steve remain employed and independent. Steve was introduced to various types of assistive technology and provided some training. That Department worked with Vanguard to provide Steve with the necessary products to keep him productive, and it split with Vanguard the costs for ZoomText, a bigger monitor and similar items for Steve´s office.
On his own, Steve also worked out a system of using multiple sets of eyeglasses to get through his day—bifocals for routine activities, bioptics for driving and magnifying glasses for reading. Keeping up with them was a hassle, but this home-made solution worked for him. This sort of trial-and-error problem-solving typifies Steve´s creativity and perseverance. Happily, as his vision improved, though, he needed all three glasses less often.
These technological innovations, and Steve´s growing mastery of them, helped him get back on track at work. Now, he feels more confident, taking ownership of projects more quickly. He is less self-conscious at the office, more comfortable being around others while not seeing them well. He is proudest, though, of his passing the examination to become a Registered Securities Principal, Series 24, a dreaded exam and a coveted designation. The test requires extensive preparation, mostly reading and practice questions. Of course, his vision limitations posed a substantial challenge. “Reading the manuals was too much stress on my eyes,” he remembers, “so I dedicated myself to learning via online questions and tests.” Actually taking the exam would be an additional problem. The NASD (the National Association of Securities Dealers) insisted that he have a reader, rather than a large-font test booklet as Steve had requested. This meant he could not look at the questions a second time, an obvious disadvantage. Still, he fell short by only by 1 point! A few weeks later, he took the exam again, but this time he held his ground: he wanted the large-font test questionnaire. He convinced the NASD, and he was provided one. This time he passed. Once again, his persistence had paid off.
Today, Steve describes himself as basically content—a stable, loving family life and an enjoyable, rewarding career. Just the same, his personal life has changed in many ways. He doesn´t enjoy going out as much, finding it easier and less stressful to stay at home. When he does go out, he doesn´t enjoy events that come with crowds and tries to avoid situations where he must recognize others´ faces. He has to fight against the urge to stay with the familiar. Naturally, he misses his independence and resents being so dependent on Carolyn. This frustration sometimes turns him into an irritating back-seat driver. He watches T.V. much less often, but has replaced it with audiobooks. Like many other PXEers, he occasionally feels that others don´t understand his discomfort or his frustrations.
Modest by nature, Steve nevertheless acknowledges his accomplishments and feels he is succeeding overall. “The key,” he notes, “is that you´ve got to deal with it.” He also believes that feeling sorry for yourself is unproductive and that PXEers have to face their vision loss and the resulting issues and deal with them directly.
Steve credits Carolyn for “keeping [him] moving forward in a positive direction” throughout this long process. She encouraged him to push through the inertia that initially set in when things got bad in 2005. She also pushed him “almost immediately” to look into what various low vision technology, training and support were available.
An indication of Steve´s character is reflected in his belief that some increased responsibilities came with his vision loss. “I´ve learned to appreciate those that have come before me and blazed the trail to help all of us with vision issues. I don´t want to let them down, that´s a goal. Also, for all those coming after me with vision issues, I want to help show them the way, I want them to know they don´t have to give up, it´s tougher but you can have a life. I also want to be a good role model for my kids, to show them to never give up, keep plugging away, do the right thing, work hard.”
All in all, though, Steve has succeeded at most of what he set out to do when that second eye started to go. He is working, driving, living more or less normally. He´s grateful for where he is, how far he´s come. He´s also optimistic about his future. It certainly seems like he has good reason to be.
Steve invites other PXEers to contact him with their questions and comments. He can be reached at firstname.lastname@example.org.