What We Want-and Need: Gifts for PXEers

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  PXE Vision: By and For PXEers
  by Pat Manson

What We Want—and Need: Gifts for PXEers


December 2006

It´s that season again, the season for giving and receiving gifts. Those PXEers who´ve experienced vision loss have special needs (and wishes) that can be addressed wonderfully by a gift, whether at this season or for a birthday, Mother´s or Father´s Day, an anniversary or any other special occasion.

Since my eyes went out, I know that my family has struggled in deciding what to give me for these occasions. For decades, it was simply books, books and more books. Plus I made it even easier for them. I always had a long list going of books to read, so they´d just select a book or two from the list. Moreover, the list was long enough that I´d still end up being surprised, a win-win proposition.

Circumstances changed, of course, hence my family´s dilemma. So I´ve thought about what PXEers want and need, and here´s a list that is intended to apply for all PXEers with vision loss. I´ve addressed this list to those of you who give us gifts—or try to. PXEers can just print this column and pass it out among family and friends.

Your time. All the many things PXEers miss from our former fully sighted lives can essentially be divided into 2 categories: the loss of our independence and the loss of the time we spend doing everything more slowly. Both can be remedied, albeit temporarily, by the gift of your time. Believe me, we´d be grateful.

Read to me…please. I invariably have a stack of junk to read besides the stuff I regularly read on my PC or can do easily with my CCTV—investment brochures, product instructions, CD liner notes, magazines. As a gift, give me a fixed amount of time per week or every other week to come over and go through my reading stack. Put the date on your calendar. Don´t make me ask for your time. I won´t.

Be my work partner. PXEers get very frustrated when we cannot do what we used to do or at least not as well or as quickly—hanging a shelf, filing our tax documents, re-alphabetizing my CDs. So we don´t do it or we put it off. And that results in a logjam of household projects, which in turn can lead to depression. What can you do? You can give me a day. We´ll work together to clear up my backlog of projects. Between the two of us, we can be the old me for a day.

Take me (only) where I want to go. Give me a day or two sometime. Better yet, give me a half-day once a month—and please, let´s schedule it. Don´t wait for me to ask. Remember, this is a gift, so it won´t count if you add an item or two of mine (as well as me) to your weekly trip running errands. Normally I have to beg, borrow and steal your and others´ time to run my errands, but not this time. With the gift of your time, for a brief period I´ll get to return to center stage in my own life.

A trip to a place your PXEer has always wanted to visit. It doesn´t have to be far away or expensive. That interesting old house that´s open to the public once a month. The art museum that no one seems to have visited since we were kids. If your PXEer seems particularly at risk of losing more vision, consider a trip to a place he might not be able to see well enough to enjoy later. Examples: a museum, building interiors, a special sporting event, sightseeing where you can't get close to what you're trying to see.

A beach trip, however, could perhaps be put off, for he´ll probably be able to see what's what despite future vision loss. On the other hand, I'd suggest proceeding sooner than later with any plans to take a snorkeling trip or to visit a city in England or Italy—or even NYC, for that matter—where there are buildings to see from the outside, then from the inside, and finally to piece it together visually in a cityscape. Imagine trying to take in an old European or Latin American church with the carvings and the stained glass after losing another 50 or 75 points of vision. It would materially alter the experience.

A guided walking tour. I'm a big NYC fan. I try to go there once or twice a year, exploring new areas and sights each time. But in our family, I've historically been the guide. (My wife Gerlinde is, er, directionally challenged.) Now, I miss a fair amount because I cannot read the guidebooks once the trip has begun except clumsily with a magnifier. So I try to commit to memory everything I need to know before I leave home. I would love to take a long walking tour there with a guide, relieving us of the need to consult the guidebook and freeing us up to just walk, look and listen.

If that´s not possible because it´s too expensive or because there aren´t guides where you want to take your PXEer, then you be the guide. Do the research and learn the route so you can act as my host. I can just pay attention to where you´ve taken me.

A charitable contribution. You can make a contribution to a charitable organization on my behalf. Many PXEers with vision loss can no longer support the nonprofit organizations of their choice as we once did. Your donation in your PXEer´s name will help remedy that. My vote? That´s easy. Make a tax-deductible contribution to PXE International. It has moved mountains for us. Your gift will allow us to give something back and will help PXE International help us even further.

A scrapbook with current photos of friends, co-workers, family. I no longer know how most of the people in my life look. I think I´d like to be updated.

Here also are some more typical gifts. Understand please that I´m not endorsing any particular product or company. I´m just offering suggestions based on what I know.

Hand-held magnifiers. I´ve grown dependent on these handy devices and now own a handful of them. I´ve placed them all around the house so I don´t have to go far to have access to one. There´s also one in the glove compartment of our car and another by the door to take along if I´m going somewhere in another´s car.

I´ve experimented with 3X, 5X and 7X, but all have been hand-held, battery-operated and illuminated by a small LED light. Mine are all made by Schweitzer, but there are plenty of other manufacturers. Check your local Department of the Blind (or whatever your state calls it) or a low vision center. Or call Maxi-Aids at 1-800-522-6294 or visit the MaxiAids website.

A CCTV(Or the portable equivalent--they're becoming smaller & more useful.) I use my CCTV to read the newspaper, catalogs and other items I can´t access through my PC. I even use it to cut my nails. It has improved my life immeasurably, but a CCTV is not inexpensive. Perhaps you could join with several other family members to purchase this gift.

My CCTV is a 4-year-old Optelec Clearview 500, but there are much more advanced ones now available from several manufacturers, but naturally they are more expensive. However, there are cheaper ones, too.

A large flat-screen computer monitor. Bigger is better.

ZoomText. This software is beloved by many and indispensable to those who´ve mastered it.

A large-screen TV. I watch more television than I did before. I´m not proud of it, but it´s just a fact: I get tired of digging for info on my PC, audiobooks, recorded news, etc. Our acuity may be shot, but we PXers can still watch television if we sit right up on it. The bigger the image, the farther we can move away from the screen—and the greater the chance that you can see the screen around my head if you and I are watching together. And I hope we are because it´s important to continue doing together the things we´ve always done together. Otherwise, we´ll miss “us” as we used to be even more.

A DVD player. I haven´t been able to watch movies in the theatre for 5 years. I´ve substituted movies on DVD.

A subscription to NetFlix. An easy way to get those DVDs. They´re ordered on-line and arrive in the mail with a postage-paid return envelope. We never have to leave the house—something PXEers are good at. There may be other such providers; I just don´t know.

Audiobooks. These can be bought at the large book retailers like Borders and Barnes & Noble as well as on-line from those same companies as well as from Amazon, etc. There are also audiobook companies like Audio Editions.

An alternative would be a subscription to an on-line audiobook download supplier like Audible.

We´ve all been forced to be creative to adapt to our changed lives, the changed lives of all PXEers and those who love and support us. I hope this will help bring out some of that creativity. And, remember, it is more blessed to give than to receive. (I still prefer receiving.) So bless you. Merry Christmas and Happy Holidays.

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