Going blind opened eyes and hearts

In the course of three days in June 2010, Colleen Hassett lost her eyesight. After two weeks in the hospital trying to figure out what happened — several diseases and conditions were tested for: multiple sclerosis, lupus, scleroderma, vitamin deficiency, etc., etc. — all tests proved negative.

Colleen was a nurse and knew better than most how to navigate the medical field. After she was sent home, she saw a neuro-ophthalmologist. She’s also seeing a retina specialist and a vision therapist.

On a recent visit to her doctor he said, “You are a miracle.”

Optic nerves do not heal. Hers has to a degree.

“Now,” says Colleen, “I have some vision. So the question is: Do you go further trying to figure out what happened?”

What does her life look like? What kind of help does she need?

Colleen can’t drive, hike, or see color; she’s reluctant to go on vacations in strange places. She graduated from a Northeast Association of the Blind program.  “I can cross streets and I can take a bus,” she says.

Colleen teaches yoga and Pilates at the Guilderland YMCA. When she lost her sight and for four months, she took time off. Then the Y urged her to come back. She could ask the class members for help if she needed something, they told her.

Friends; relatives; neighbors; and her husband, Steve, took her places. She contacted Community Caregivers and was approved for service, but she didn’t need us then with all her friends and family helping her. When her family left, Caregivers came back into the picture.

Her husband had a goal for her: Get out of the house every day. So Caregivers and friends and her husband take her to doctors’ appointments, the Guilderland Library where she reads and chooses new books, the YMCA where she teaches and works out, shopping centers, etc. Usually CC provides one-way transportation and her husband or friends do the return to home.

At home, Colleen has a room, a studio really, where she meditates, chants, does yoga, and prays. She cooks. When she reads, which she does a lot, she holds the book very close to her eyes.

With corrective lenses her vision is 20/60 and 20/400. As you can realize, Colleen is dependent on others. She’s used to giving help, not taking it. And she worries how people are responding to her.

“I’m essentially still the same,” she says. “Asking for help is horrible. Not being able to drive is a big deal, and it makes me feel older just because most people who don’t drive are older.” Colleen was 51 when she lost her sight.

Consummate volunteer

This story came about  as a result of a project the Community Caregivers staff took on for the gala fundraiser in November 2016. Certain care receivers and volunteers agreed to complete a questionnaire that would be used to highlight and inform gala attendees of the kind of work CC does. Colleen; her husband; and Cindy Wadach, her Caregivers volunteer, came to the event. Colleen and Cindy stood and read their stories to the audience.

Cindy started volunteering with Caregivers in 2006. Prior to that, as the director of Senior Services for the town of Guilderland, she made transportation referrals to CC. She said she was so impressed with the organization she decided to volunteer with us when she retired.

However, that year her brother died unexpectedly. “As a way of channeling my grief…and as a way to honor his memory” she said, she made time to volunteer while still working full-time — about two hours a week.

Then in 2013, Cindy did retire and called Mary Morrison, the Client/Volunteer coordinator at Caregivers, and said, “Give me more clients.” One was Colleen

Cindy has three regular clients, volunteers about 12 hours a month for CC, and averages 200 miles of driving. Cindy actually volunteers for five organizations, including Caregivers: the Guilderland Food Pantry, the Guilderland Public Library, the Guilderland Chamber of Commerce, and Home Delivered Meals out of Albany County.

In Colleen’s case “…an unexpected fringe benefit occurred,” said Cindy. They became good friends.

Both have a good sense of humor. Both love seeing live dance performances as well as “Dancing with the Stars.” They’re both vegetarians and have the same favorite pizza restaurant. They also have friends in common.

Cindy says she’s always had the volunteer spirit. “The most important thing in life is helping people,” she says. “I’m fortunate and in good health. I want to share what I have.” There’s a social component, too, she says. “I can’t stress that enough.”

I asked Cindy why she thinks it’s hard for people to ask for help. “In a word – Pride,” she said. “People don’t want to admit they need help. They would say, ‘Others need help more than I do.’” Cindy’s advice is “Reach out. There’s strength in admitting you need help.” She believes, if the situation were reversed, help would be given.

Since Cindy has been transporting Colleen, some role reversals have occurred. They went to see a common friend who was in hospice, she recalled. “That was a time when Colleen helped me. She was emotionally stronger. A few month back,” Cindy added, “I wasn’t feeling well. Colleen and her husband came and took me to Urgent Care.”

As an almost full-time volunteer, Cindy admits it feels good to know you’re needed. “Volunteering makes you feel so good,” she says. “I’m surprised more people don’t do it.”

Colleen’s experience with Caregivers isn’t typical, nor is it unheard of though. Mary Morrison said there are eight to 10 clients who have received services over a period of years. The same volunteer could take you to the Y, for dialysis treatment, or visit with you, for instance.

Marriage bond

The final part of this story is about Colleen’s husband, Steve, who is also a caregiver.

When his wife called him to say her vision just got blurry, Steve told her to call the ophthalmologist. The next time Colleen called him, it was to say her vision was really bad; things were gray but she could still see light. The third time she called, and since the doctor didn’t have room for her, they went to the emergency room.

As Steve reflects on this event, he remembers trying to be calm and trying to imagine what his wife was seeing. He said, “As a caregiver, you can only stand there and watch. You feel helpless.” Steve watched as the hospital staff checked for everything under the sun to figure out what happened to Colleen’s sight.

Once all the tests were over and no critical issues were evident and he knew she wouldn’t die, he started to reorient her. He saw her other senses were noticeably enhanced. When they walked in the hall, for example, she could feel where the doorways were because of the difference in the air temperature.

During this time, Colleen’s father died. Steve didn’t tell her. The hospital was still performing tests to determine what caused her loss of sight.

When Colleen went home, she was shaky. The first day, she passed out; two days later, the same thing happened. Apparently, this was due to the meds and anxiety.

During this time, Steve says, “I was scared.”  Once the meds got adjusted and Colleen was more stable, people started reaching out to her. “You have no idea the number of people who volunteered to help,” he said.

One such person was a neighbor who was connected to the New York State Commission for the Blind. His job, Steve said, was to assist people with impairments. “His observation was that Colleen was already doing 95 percent better than most people he visited.”

Also during this time, Steve said he felt afraid. “You worry about your partner. What happens if she’s gone? You wouldn’t really think this way at our age.” Steve was 52 at the time.

He took two-and-a-half months off from work. When he did go back, it was to a different job and then only half time. He kept that arrangement for a minimum of 10 months.

On the home front, Steve’s goal was to get Colleen out of the house every day. When he went back to work full-time, he knew enough to not overextend himself. But travel was tough. Fortunately, his new job with Union College allowed him to shift fields so he didn’t have to be away.

From Steve’s perspective being a caregiver takes patience. His mother had Progressive Supernuclear Palsy, known as PSP, so he had experience helping her.

Steve, who is a member of the New York National Guard, said, “In sports and at work and in the military, I am proactive,” he said. “I am not a patient guy. I don’t wait for the ball to come to me.” He confessed,  “The hard part is not doing something because of her.”

As Steve considers this journey, he shared his philosophy: “Compromise — it’s not just about me, it’s about us.”

They talk over decisions, although he said they always did that before.  And he tries to anticipate issues. He tries to protect Colleen physically and psychologically.  In the back of his mind, though, his fear is, “What would happen if something happens to me?”

Throughout all of this, people are in the wings. “People step up,” he said. “My faith in humanity hasn’t always been there.”

Postscript

Since the initial interview with Colleen and Steve, I’ve learned more. Colleen’s sight has improved from the original event, but she still can’t see expressions on faces or the colors red, orange, and pink. She has to be close up to see.

At one pizza place she frequents, they have ingredients you can choose listed in the front of the window case. She can actually see her choice. She rejoices at this thoughtfulness.

Colleen volunteers at the Food Co-op every Friday for about four hours. “They’re wonderful,” she says. “They’re kind. They provide a challenge.” She meets customers and helps them. A neighbor  volunteers at the co-op at the same time and takes Colleen with her.

Colleen emphasizes she really doesn’t want to rely solely on her husband. “That’s why Community Caregivers and my friends are so important.”

Steve and Colleen are frequently at Starbucks. Steve says it’s a relaxing space for him and a place where they can socialize. “It’s like the show, ‘Cheers’.”

Community Caregivers may be able to help you if you need assurance visits, transportation, respite, shopping, assurance calls, paperwork, chores, meals, light housekeeping. Services are provided by volunteers, there is no fee for services, and we help all ages. Volunteers decide what services they will provide and when they’re available to help. The office team connects the clients and volunteers. To learn more go to the website: www.communitycaregivers.org or call (518) 456-2898 to find out more about our services and to volunteer.