Mission Moment: Years-Long Wait Pays Off

Mission Moment: Years-Long Wait Pays Off

Chandra Johnson wore glasses ever since she was little, so she was used to needing a little help to see.

But, in 2006, she developed an issue with her prescription. All of a sudden, she was struggling to see things in the same way that she always had. A visit to her doctor led to a potentially devastating diagnosis: Johnson had Stargardt Macular Degeneration.

“I was nervous and scared and it was really hard,” she said.

What followed was a journey of 15 years to finally receive the assistance she needed. Stargardt Macular Degeneration is a genetic eye disorder that causes progressive vision loss because it affects the retina, the specialized light-sensitive tissue that lines the back of the eye. Initially, Johnson didn’t know what to do, where to go or which doctors to see. She went to seven different specialists before she found one who provided the care and insights she needed.

Still, Johnson knew developing skills in the areas of using a cane, using adaptive technologies and receiving guidance on how to perform daily activities would help ensure that she was equipped to remain in the workforce.

“It’s hard trying to do these things on your own,” Johnson said. “For example, I looked up magnifiers on my own. But, there are so many websites with so many devices – you may not get the right thing because you’re not sure what the best thing is for you and having people help you figure that out makes a big difference.”

An administrative assistant by trade who worked at a public school for 17 years, Johnson discovered Alphapointe and the rehabilitation services offered by the organization. And, every year, Johnson worked with her state counselor to apply for admittance to Alphapointe’s rehabilitation program. And, every year, due to a lack of funding, Johnson’s request was denied.

Until this year.

“Every year, I would stick to my plan,” Johnson said. “I would apply for all sorts of things that were based on state funding. This year, I remember the specific date – we submitted my plan on December 20. Then, I got a call in January. I was so excited and wanted to start as soon as I could.”

In January 2021, Johnson finally began the training she had sought for more than half a decade. Since then, she’s received instruction in all the areas she’s sought for years: learning best practices for things people do every day such as cooking and cleaning, using adaptive technologies for computers and developing her cane skills to name just a few.

But, what Johnson found the most useful might be a bit surprising.

“The thing that’s been the most valuable is just to know that you don’t always need to have special equipment to do things,” Johnson said. “It can be helpful, but if you don’t know how to use the equipment, it doesn’t matter. Even a regular computer can do so many things, but I didn’t know about all the features that most computers have. Those are the kinds of things that have helped me a lot.”

After completing her training at Alphapointe, Johnson is back on the job market. She’s looking to return to her roots and work in an office setting where she excelled for nearly 20 years. It certainly took more time than she imagined to receive this specialized training from Alphapointe’s experts, but Johnson has a message for those who find themselves in a similar situation: keep your head up.

“I know it’s a cliché, but I always try and remember that somebody has it worse than you,” Johnson said. “Being blind is a disability, but not having eyesight doesn’t mean you lose everything. You can still eat, walk, go dancing, listen to music – you can still do so many things. If you just sit there and lay around and cry, that’s what life is going to be for you.

“Staying at home is probably easier, but I want people to not be afraid because going through a program like this could seem scary,” she said. “When you get to Alphapointe, this is the best experience someone could have. But, the one thing is that people need to be driven by themselves because you will work hard. For me, using a cane was very hard. But, you’re not here for a picnic, you’re here to learn. There are a lot of people waiting in line to get these services, so when you’re here, you need to take advantage of it. It took a long time for me to be here, but the wait paid off.”