Worker fights limitations as he loses vision
SOUTH BEND, Ind.– Driving to his company's Granger office one day, Niel Makielski noticed the telephone poles along the road seemed to be warping as he passed them.
The chief of his company's small maintenance department and a "fix-it" guy all his life, Makielski finished up his work there and then drove to a doctor.
Two days later, a retina specialist delivered the grim news: A blood vessel in his right eye was breaking, causing the warping sensation, and his retina was cracking.
About a week later, Makielski said to his wife, Myrna, while they were driving, "See that car in front of me? I see two cars stacked on top of themselves."
The retina specialist used a laser procedure to stop the bleeding in the right eye.
About a year later, Niel was driving once again when he noticed the vision on his other side was warping, too.
"I got to work and I called my wife and I said, 'My left eye's going,' " Niel tells the South Bend Tribune (http://bit.ly/13ecK9l ).
"He was hysterical, actually," Myrna adds.
"I was crying like a baby," Niel acknowledges, adding, "I knew what was happening."
It was a little more than a decade ago that Niel Makielski was hit, at the age of 50, with the rarer, "wet" form of macular degeneration.
Now 61, he joins a growing number of people affected by a malady with no cure that leaves its victims legally blind — and looking for help to go about their daily lives.
Dr. Thomas Hauch, a South Bend ophthalmologist who specializes in retinal issues, cites major advances in treatment in the last several years. Now, the "wet" variety of macular degeneration — the quicker, more devastating version, like Niel's — could be stopped.
Since 1982, when he began practicing, Hauch says research has led to more ways to treat all forms of macular degeneration, which is more commonly associated with aging.
Treatments include medications injected into the eyes, but even their use is limited, he says, pointing out that the treatments aren't exactly pleasant, their effects don't last forever, and they carry some risks of their own.
But the doctor is optimistic that research will continue to help those with macular degeneration.
"What I foresee is that there'll be even newer medicines that can do the job more effectively," Hauch says.
Hauch last treated Makielski in 2004, but he recalls the man's desire to keep working with his hands even then.
"There's really some underlying fortitude in some of those people," Hauch says of people who have lost vision. "In a situation like his, if you can do it, go do it."
Hauch filled out a questionnaire in 2004 from Makielski's employer, South Bend Clinic, that asked about certain job activities and how Makielski's vision would affect his ability to perform those duties.
Hauch marked that Makielski could no longer drive or use a blow torch but he could perform all other activities, such as using power tools or other tools "as long as he uses common knowledge safety precautions."
And this was added at the bottom: "Dr. Hauch believes in allowing his patients to maintain employment as long as he/she is able."
But Makielski, left with only peripheral vision that has gradually shrunk over the years and will eventually fade to nothing, says he's struggling to persuade his employer he still has skills.
Niel Makielski says he knew that once his second eye was affected, he wouldn't be as effective as he once was, so he asked to be demoted and work only 20 hours a week.
"I couldn't see having the stress and pressures of going blind and keeping the stress and pressures of running the department at the same time," Makielski says.
He says the manager who replaced him has been unaccommodating and has him merely painting around the growing clinic. Once, after painting 14 rooms himself, Makielski says, he was disciplined for a total of six paint drops found on the linoleum floor.
A co-worker, who asked to not be identified for fear of losing his job, says he's seen Makielski be unfairly reprimanded.
"I've worked with Niel on many occasions on many projects, and he does good work," the co-worker says. "He does as well as somebody that could see. They're looking at Niel as a liability instead of an asset. ... A lot of people would be depressed, but he tries to continue on with life."
The Makielskis filed a complaint several weeks ago with the Equal Employment Opportunity Commission. The investigator closed the case, citing the agency could not conclude there were violations but "does not certify that the respondent is in compliance with the statutes."
Paul Meyer, CEO of South Bend Clinic, said this in a statement: "I cannot speak to personal employee and employment matters as that would violate the employee's rights to privacy. ...
"We have and will continue to employ individuals with any manner of physical and developmental disabilities, and accommodate their unique needs and welcome their contributions. We are proud of our track record in that regard. As a health care institution we deal with healthy, infirm, and disabled individuals daily, as that is our mission."
Julia Studebaker is a blind rehabilitation teacher who helps those with low vision to cope at home and work.
Her agency, CompassPointes, also facilitates a monthly support group for those with vision issues.
But Studebaker's experience is more than just academic: Her husband, William, died at the age of 77 after living most of his life with multiple sclerosis, much of those years legally blind.
Learning to accommodate his vision issues was instructive, she says. He held various jobs and was even able to find ways to teach high school science for 20 years.
Working with available agencies such as CompassPointes, Veterans Affairs or Vocational Rehabilitation and comparing notes with others are good ways to keep up with technology and find out what's available to employers.
Some occupations might be ruled out by a loss of vision; it might be difficult for a surgeon with Parkinson's to keep that job, Studebaker says.
But often, people can keep working at what they love with the right tools. She knows of a woman who is still decorating cupcakes at a local bakery, for instance.
"I think it's bad enough to lose your vision, but to lose your identity? And to lose your income?" she says.
A lot of what determines success is a person's attitude, Studebaker says.
Bobbie Milliken, supervisor for the local office of Vocational Rehabilitation Services, says her state-run agency works with disabled employees to find or maintain work, and it helps employers determine how they can accommodate disabled workers.
It's not a quick process, Milliken says, so an employee should apply with the office. Eventually, he or she will likely meet with a counselor.
Depending on the situation, Milliken says, Voc Rehab will often pay for training or tools to help a disabled person keep working. Requests for help for the legally blind are common.
Many options exist for those with low vision, she says, including magnifiers and other tools, but also "personal adjustment training." ("You have to be able to make your clothes clean to go to work, and you have to be presentable," for instance.)
"It can become more complicated, but it is amazing what a person who is motivated can do, or be retrained to do," Milliken says.
For his part, Makielski has continued to build things over the years, creating substantial work-arounds in his basement workshop to be able to measure and use his power saw, for example.
Only in the last few months has he become aware of such programs as Voc Rehab, he says.
He's headed for a weeklong VA program in Battle Creek. He's hoping to apply for a six-week VA program in the fall that teaches — or re-teaches — such skills as carpentry, plumbing and electrical work to the legally blind.
He receives some Social Security disability benefits now, and when he turns 62 in October, he could retire.
But Makielski says he wants to improve his working life and to contribute what he can.
"They've taken my tools and taken everything from me and put a paintbrush in my hand and told me it's all I can do, it's all I'm worth," he says, taking a phone break from cutting tile for his kitchen backsplash, which had to be adjusted last week to fit a new microwave. "This is the most miserable situation I've been in in 61 years, and I've been in the military.
"I just want to be productive. I just want to be appreciated for what I do."
Information from: South Bend Tribune, http://www.southbendtribune.com