Note: I wrote this a year ago in mid 2006 and have found it useful to assess my priorities and for planning.
Demarcation of noticeable vision loss worried me that my priorities were not well established yet. Before my weekly meeting with my “life coach”, I always make notes, a kind of journal, about my main concerns, triumphs, joys, and frustrations. I was gradually losing the ability to read my notes, even written with a bold Sharpie. From the need for a mental model emerged the following:
Every motion now involves concern for safety. Peripheral vision does not identify the columns in my living space, nor the dog on the floor. The sidewalks in my neighborhood are walker-friendly but the curbs are deadly if I don’t follow the curb cuts. How high is the curb and how deep is the gutter below it? Of course traffic – signals, stops, crossings that have rules are still treacherous as drivers, bikers, and other walkers don’t always follow them. My worst experience led to 5 stitches in the emergency room after a decorative flat-looking rock tripped me up. Caution is not an option, shortcuts are out of the question, and nothing can be assumed safe until it’s past. Looking forward, I need to learn more about the mobility aides for the blind — dog guides and white canes — and we’ll soon listen to some podcasts that provide experience if not answers to the questions of when, why, and how to make these major adaptations.
And safety is not only a physical issue as financial transactions, federal forms, and bills are all exposures to costly mistakes, waste of precious energy, and loss of self-respect and independence.
2. ENERGY MANAGEMENT.
No, not thermostats, but rather gaining an understanding of where energy is used relative to eyesight functions. Safety responses and monitoring expend energy in order to accomplish a goal. Waste increases as mistakes are made, everything from mis-typing an email address to adding an extra 0 into a mortgage payment. Things that were trivial are now major energy consumers. For me, these experiences were complicated by unpredictability of my vision quality, seeing well first thing in the morning, and nearly nothing of print or detail in the afternoon. This has meant identifying each day the highest priority item to accomplish with 2nd, 3rd, and so on as objectives but maybe needing to be put off to the next day. And when a task requires preparation and materials, those must be acquired and not lost before needed. Life becomes an assembly line of planned actions with nothing taken for granted. Frustrations and worry consume energy too. Most important is to conserve energy for relationships.
How does one make one’s friends and family comfortable with our vision changes? Asking for help is necessary but may seem manipulative and frustrating when it doesn’t fit into the helper’s schedule. We’re talking here about maintaining current relationships then expanding contacts, developing or re-developing relationships, and avoiding social isolation are even harder. Luckily, Bookshare had several great books on self-esteem and on enlightening the sighted about blindness. Knowing common patterns of responses to blindness, from me and others, calmed my concerns and provided ways of working on relationships. However, social isolation remains Enemy #1 in my overall program.
4. APPRECIATION AND ENJOYMENT.
Vision loss inherently imposes limits that require changes in activities, e.g. visiting a museum , traveling, and reading, A surprise to me is that the alternative ways of performing these activities are actually enjoyable challenges, provided energy is available. Repeated activities such as visiting the Grand Canyon are simply variations of past memories, where the colors of the canyon walls almost jump out of the haze. Was I seeing that contrast of purples and gray, remembering it, or imagining? Does it even matter? Taking on a new experience, e.g. walking the paths of Palo Alto Shoreline Park, are much more auditory and smell since the details of the surroundings are simply not clear. Provided safety from companions, I have not felt a loss of quality of life, simply a change. And Change, seeing the world differently, is a gained quality itself. Vision-specific activities such as viewing photos and using facial cues in conversation with an interesting new acquaintance are most sorely missed. Audio reading is a pleasure in itself, but one’s overall reading profile necessarily alters. Podcasts are a particular boon when we can hear first hand the joy and reinforcement that appreciation can be retained, even expanded. Again, I must seek out readings and people who can share their new ways of appreciating their own changing landscapes.
5. FINANCIAL, LEGAL, and CITIZENRY.
Vision Losers need a special bank account to cover necessary equipment — CCTV, magnifiers, software, etc. I budgeted about $5000 for equipping my living space and office. Knowing I faced vision loss, I put away those funds when I was working. For many of us, that amount is out of the question, especially with unexpected vision loss, requiring grants, or going without. An irony of the Vision Loser at the end of his or her career is that the assistive technology is more available, indeed mandated, for those in the workplace and educational systems. working against the independent Vision Loser, forcing us to seek alternatives. Other costs are not deducted from our bank accounts, but consume energy such as evaluating product options and self-training. My personal motivation for buying some of my magnifier equipment was the simple desire to see smiles — a prices experience.
Vision Losers experience a rapid immediate descent into a lower level of citizenry and must come to terms with disability attitudes of society. Insurance firms require
a waiver for your vision costs — you got a pre-condition, you own it for life until Medicare. Voting entails hassles and loss of privacy, complicating the already difficult tasks of gaining voting information to responsibly complete a ballot. Organizations you work for or with get nervous about providing accommodations — fear of lawsuit piled on fear of you as a disabled person. The good news, in the U.S., is that 508 and A.D.A. requirements continually prod education and training and adaptation of environments and websites. However, the independent Vision Loser must learn the language and ethos of what to expect and how much to require.
Note: This framework has helped identify topics for future blog entries:
- Safety: dog guides vs. canes, general mobility training; new dangers from quiet cars; developing a Fault Management Cocoon; …
- Energy Management: A nebulous topic and a broad problem, perhaps varying the widely touted “Getting Things Done” approach of author David Allen; all things talking – microwaves, color-tellers; ATM’s, …
- Relationships: Many helpful self-esteem books available from Bookshare; advice on caring for those who assist us; …
- Appreciation: More great books with accompanying podcasts; changes in museum procedures for assisting blind visitors; hobbies displayed on Blind Cool Tech; …
Financial, Legal, and Citizenry:
Accessible currency; anti-CAPCHA activism; accessible voting; employment advice on Disability411; saving $$ being your own System Integrator and Trainer;