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Blind vision: Woman seeks to build community among the visually impaired

By Erika Pedroza | Published Saturday, May 3, 2014

It may not be through her eyes, but Telena Graham of Cottondale has a vision.

After losing her sight 15 months ago, the 47-year-old former interior decorator has a yearning to help others who face the same struggles she does.

PERSONAL PREFERENCE – Depsite the advice of most doctors, Telena Graham prefers the “rolly cane” over the straight cane. “It seems real asinine that they’ve got something tapping over stuff when you could roll over something and catch it,” she said. “I really want to push to change this, because it makes more sense to me.” Messenger photo by Joe Duty

“There are so many people out there that’s got it worse than me,” she said. “I’m just blind. But don’t tell me I can’t see, because I’ve got a hell of a vision.”

That vision includes establishing a group where the visually impaired can gather for fellowship, game nights, fundraisers and support.

The Wise County transplant fears that if she doesn’t obtain some sort of help, she’ll be forced to move back to the Metroplex, where she lived before moving to this area 16 years ago.

“But we don’t want that,” she said. “My husband and I built our dream house out here. We love it out here. I just need some help.”

It isn’t necessarily help doing household chores or running errands.

“I can do just about anything,” she said. “I don’t like the word ‘disabled.’ I don’t like anybody telling me I’m disabled. I’m not disabled. I just do things differently now I just have to learn a different way to do it.”

What she lacks is the support and understanding of others in similar situations.

“I want to be a part of helping to end this feeling because I know others have to be feeling it, too,” she said. “It feels like a prison, and I want out.”

UNINSURED

Graham hasn’t always been blind. It wasn’t until 2009 that her eye troubles began.

Graham’s husband Bill, a self-employed engineer, had always kept health insurance on the family. But as a way to save money when the economy tanked, Telena dropped their policies.

“Me and my bright idea, we’re all so healthy,” she said.

But that suddenly changed. She was faux painting cabinets for a client when she started having double vision – so she visited an eye specialist.

“He said, ‘You’re really healthy, you’re young. You don’t seem to have any other things going on. I don’t think we need to do an MRI since you don’t have insurance,'” she recalled. “So he gives me these trifocals and sends me on my way.”

That fall, Telena visited her son in New York.

“I started having numbness on the right side of my face,” she recalled. “I was still having some vision issues, but I thought I just needed to get used to the glasses.”

Still, something didn’t feel right so when she returned from her trip she visited her doctor, who scheduled an MRI for Dec. 3, 2010.

After the procedure, Telena and Bill stopped to do some shopping before heading home.

LIBERATING CONTRAST – Telena Graham of Cottondale sits behind her dark-stained banister that once was painted a lighter color. After going blind 15 months ago, she painted her colorful walls a plain beige and the banister a chocolate brown after discovering how contrasting colors enable those with even a hint of vision to see more. On a metaphorical level, the banister can be seen as imprisoning the once active mother and wife. “With all this happening to me, it’s like I’m in prison out here,” she said. Messenger photo by Joe Duty

“I was in line paying for my new ornaments because I’m a big decorator. At Christmas I decorate my whole house,” she recalled. “And my doctor keeps calling me. I wasn’t thinking anything really serious or anything. I called him right back and he asked if Bill was with me.

“I told him he was, and he said, ‘I know I closed at noon, but I want you and your husband to get back over here as soon as you can.'”

The MRI revealed a massive tumor pushing on her brain stem.

“The doctor said that it was a miracle that I hadn’t already died or had a stroke or something,” Telena recalled.

Because she didn’t have insurance, the doctor sent her straight to the emergency room at Texas Health Harris Methodist Hospital in Fort Worth, where she sat for four days unattended by a doctor.

“The nurses were super,” Telena said. “But this neurosurgeon, because I didn’t have insurance, wasn’t in any hurry to see me When she finally decides to see me, this neurosurgeon comes in and she goes, ‘Yeah. You’ve got a pretty good brain tumor. If you don’t have something done with it soon, you’re going to die, have a stroke or go blind. But it’s voluntary.’

“‘When you get insurance, come back and see me.'”

Telena left the hospital and sought a second opinion – depleting the family’s savings as she tried to figure out what to do. She even applied for charity help at M.D. Anderson Medical Center in Houston. But was denied because of her husband’s earnings.

“By the grace of God, somebody told us about the preexisting condition insurance through Obamacare,” she said. “I got that insurance, and that saved my life. That’s the only reason I’m sitting here today.”

In Dallas, she consulted a doctor who confirmed the tumor’s size and risk. However, he didn’t seem convinced of the need to remove it. Finally, she visited a neurosurgeon at M.D. Anderson who agreed to do surgery.

“He said he’s got a wife about 40 years old, and if it was him, he would do the surgery,” Telena said. “So I said, ‘OK, let’s roll.'”

LIGHTS OUT

On Feb. 24, 2011, surgeons removed 70 percent of the tumor. Because the last 30 percent is wrapped around her cavernous sinus, doctors opted to do proton radiation therapy, also in Houston, to try and eradicate it.

She underwent that procedure around the holidays of that same year.

“They made a mask that fit on my face, and it bolted to the table,” she said. “I had to wear it every day, Monday through Friday, for six weeks. They had to give me anxiety medicine because it was very traumatic for me.”

But she made it through and came home.

Unable to feel much on her right side, Telena managed to tear her cornea.

“Even though one of my eyes was very blurry, I never even once had the thought of losing my vision,” she said. “I still had my left eye. It was great.”

Then on Feb. 2, 2013, during a baby shower she was hosting for her daughter, it happened.

“I’m sitting in the living room. We’ve got it all decorated with lambs and baby stuff everywhere, because, oh, I went all-out for my grandbaby. All of a sudden,” she snaps her fingers, “lights just went out.

“I’m scared to death. I’m sitting here going ‘OK, be cool, be cool. Don’t ruin this for your daughter.’ I called a friend over and asked her to help me. She played it off.”

Telena rushed to a neuro-ophthalmologist, who said her optic nerve had been damaged by radiation.

“I call the radiologist, and apparently I’m one in a 1,000 that this happens to,” she said. “My eyes are fine. It’s my optic nerve that got damaged. So did my pituitary gland because they’re right there next to each other. So not only am I a hormonal crazy woman, I’m a blind crazy woman.”

She laughed. “Not really. I haven’t been that bad.”

Doctors tried hyperbaric oxygen treatments – 56 of them – to no effect. Then they tried steroid infusions, but those didn’t work either. They attempted avastin chemotherapy, also to no avail.

BREAKING OUT

Before losing her vision, Telena was always on the go.

“I loved big trucks, loved sports car,” she said. “I’m a car fanatic. I had a Ford F-250 Super Duty with a 6-inch lift kit. I cruised around town in it; that’s just the way I was. I had a Corvette, and I loved to be out. I was never home. I was always doing interior design jobs or faux painting or planning events.

“With all this happening to me, it’s like I’m in prison out here,” she said.

But she’s hoping to change that by starting a “blind community.”

“I’d like to find friendship; I’d like to find companionship between the blind community,” she said. “I’d like to do things for the kids; it’s fun There’s just all kinds of things I could see us doing.”

From painting Christmas ornaments for a fundraiser, to outlining with Puffy Paint the numbers on BINGO for a blind-friendly version of the game, to blind bowling to organizing a self-defense class and even a support group for spouses and loved ones of the blind – she has plenty of ideas.

“There’s a lot of things we could get our hands into,” she said. “I’m not scared to try anything once, and if we like it we’ll do it again.”

The group could also share tips and advice. Even though she’s been without her vision for only a year, Telena has a couple of crucial pointers to share – like how painting with contrasting colors enables those with even a hint of vision to see more, and why she prefers the the “rolly cane” over the straight cane most doctors recommend.

“I hate the straight cane,” she said. “The straight cane tells everybody, ‘Geez, she’s blind’ because you tap, tap, tap. Well I was tap-tap-tapping, and there’s a curb, and I tapped right over it. I would’ve busted my face if it wouldn’t have been for my husband.

“The cane with the rolly ball would’ve caught that. I don’t understand why a straight cane that you tap is better than a rolly cane that you slide in front of you because it picks up more than the tap-tap cane … I really want to push to change this, because it makes more sense to me.

“It seems real asinine that they’ve got something tapping over stuff when you could roll over something and catch it.”

Rounding up a group of people to share that kind of advice would be therapeutic not only for the physical ailment, but for emotional reasons as well.

“People are my drug,” Telena said. “I love people. I love to be around people. I feed off of people. It gives me my life back basically, being around people.

“And you know, I just want to help people.”

She admits she hasn’t always felt this driven.

“I went through my stages. I’m not going to lie to you – I still have my good days; I still have my bad days,” she said. “But every day I wake up, I thank God I’m still here.”

And while she’s here she wants to live fully.

“I’m tired of just existing,” she said. “That’s why I’ve reached out I want to create something that makes us feel like we belong, to share and help each other. A place to be comfort. A home away from home. I feel like it’s something I’m meant to do.”

FELLOWSHIP FOR THE BLIND

Telena Graham, who lost her vision 15 months ago, is looking to build community with others who have gone blind. She envisions meet and greets, game nights, fundraisers for research, dances and discussions.

If you or someone you know would be interested in participating or helping, contact her at 817-988-0478 or telena.graham@aol.com.

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