Kay

Cause of blindness - Diabetes

Kay is a mother and grandmother that lives with diabetes. After over 15 years of dialysis and diet management, Kay lost an eye to diabetes. She also lives with neuropathy and has undergone multiple amputations.

Kay’s first experience with diabetes was from her grandmother, a Sioux Native American who lived with diabetes before her. Kay practiced injecting insulin into an orange to help her grandmother.

When Kay was pregnant at 28 years old with her daughter Sarah, she was diagnosed with gestational diabetes.

“They told me if I wasn’t careful, my baby may not make it. That was so scary...”

Thankfully Sarah was born healthy.  Some gestational diabetes resolves after birth, but for Kay it developed into diabetes proper. The doctor told Kay she couldn’t eat high carb foods or sugary sweets. Unfortunately that meant Kay couldn’t eat the staple foods of her Sioux culture.

“I couldn’t eat beans, I couldn’t eat potatoes. I used to make homemade breads.”

With diabetes, these foods are high sugar sources that send blood glucose soaring, accelerating the diabetes’ harmful progression. Kay shifted her diet to vegetables, eggs and chicken to control her blood sugar.

Kay was forced to view food through a new lens, she asked the same question all diabetics must ask themselves: “What can I eat now?”

For Kay the loss of bread and potatoes felt especially unfair; Kay wasn’t even eating what is commonly understood as unhealthy, like soda, candy and pastries. So Kay lapsed back into the diet she grew up with, the foods she had always loved.

And like most diabetics, Kay would not experience the effects of her diet for years to come.

–––

It wasn’t until Kay was 50 that the diabetes finally affected her vision. She was driving home in the rain when she noticed something odd.    

“Everything was ripples, it got real hard to see. At first I thought it was the rain, but the ripples stayed after the rain stopped.”

Then Kay’s retina detached. She went into surgery and spent weeks recovering.

“There’s no words for it, that was real tough.”

Kay gained some vision back, but now she saw in gray. She didn’t fully recovery, and the diabetes continued to rob Kay of her vision.

Kay raised five children through diabetes and vision loss. She cooked and cleaned, and Kay also knitted, crocheted, and crafted her own jewelry. Kay and her daughter Sarah would go to the store to buy materials. They would select beads by talking through color shades that Kay recalled from memory. Though Kay lost her color vision, she could still remember unique hues. She held a pattern in her mind, combining colors she no longer saw to continue crafting beautiful work.

Then Kay had a second retinal detachment.  Kay went through more surgeries and another difficult recovery. Despite the treatment, the ripples and grayed vision worsened, further distorting Kay’s sight. Her vision loss and neuropathy progressed until crafting became impossible.

Kay was adventurous despite her progressing vision loss. Once, when she was visiting Sarah in Hawaii, Kay decided spend the day at the beach. She insisted to Sarah that she would be okay on her own.

When Sarah returned from work, she couldn’t find Kay. After a few rounds of looking, Sarah finally found her near the bathrooms, bright red, and sunburned all over.

“Then my mom turned real brown, and she peeled all over. We got aloe vera and aspirin. Fun times, right mom?”

Another time in the south bay area, Sarah got a call from her dad. Kay had disappeared.

Sarah told her dad to wait, Kay would probably call her. Sure enough, Kay called.

Sarah: Where are you?!

Kay: I’m up at my friend’s house in San Jose. Your daddy made me mad, so I hid the car and took the bus.

Sarah: You can’t see! How’d you drive??

Kay: I can see a little bit, I drove the car around the corner so your dad couldn’t find it. After that, I used my cane to find the bus stop.

Even as Kay’s vision dimmed she still found adventure in her life. Nevertheless, Kay still had her fears.

“I was scared I wasn’t going to be able to see the things I love to see. And I was afraid, I wouldn’t see my family again.”

Kay’s family decided to visit her in California over the holidays. They came from all over, including New Mexico and South Dakota. But unfortunately Kay had heart problems that required a defibrillator. Her body rejected it and she was hospitalized.

The day Kay was released her sisters were out shopping. Kay told her husband to take her shopping, but he reminded her of the doctor’s instructions to rest. Kay insisted, she refused to be apart from her family after they had come from so far.

“I had never seen my oldest sister out here, but she came out. And my little sister too. So I got to see them, all of them. That was real nice.”

Kay’s diabetic complications continued progressing. Vision loss and neuropathy were only the beginning of an onslaught that Kay would brave for over forty years.

Kay has been on dialysis for 15 years. Because of her diabetes, Kay lost one of her eyes, both of her legs, and a kidney.

“I accept what’s wrong with me, day to day I accept it. You have to accept it.”

In greater need of help, Kay was admitted to a care home.

“I met some nice people. I’d always ask, what’re we gonna have? And they’d say soup, or spaghetti. When I wouldn’t eat what they brought, someone nice would sneak me an egg sandwich.”

Though Kay enjoyed the company of many of the caretakers, the care home failed to let Kay exercise her independence.

One time Kay was ready to get into her wheelchair from her bed. The attendant was insisting to help her, but Kay knew she could do it herself.

Kay: I can get in there by myself.

Caretaker: No you can’t, we’re going to bring someone over here to help.

Kay: Shut up I’m gonna do it!

Eventually, Kay and her family decided the care home wasn’t looking out for her best interest.

“I always wanted to cook, but they said I couldn’t. I can’t see, so they think I’m going to burn myself. But the blind center taught me, they taught me how to put things on the stove, and turn it on.”

Sarah put it plainly:

“We look out for those things, so she can do the things she wants to do and be safe about it… People don’t know how to handle blind people. They think it’s just a plain handicap. They still can do things! They just do it different.”

“We want her to do things. And she wants to do things. So there was just no way in hell I was going to let anybody else care for my mother. I want to make sure my mom gets the best, and the only way that’s going to happen is if it’s going to be me.”

So Kay went home to live with Sarah and her family, and there Kay began to exercise her independence more. It took time for her family to adjust to Kay’s disabilities, especially when it came to understanding what she was capable of doing without help. But Sarah always advocated for her mom. Her family used to worry about Kay cooking, but Sarah assured them Kay could do it.

“We’d all be cooking and someone would shout, ‘hey she’s got a knife!’...Yeah, but she knows how to use it.”

Sarah became Kay’s primary caregiver. She was compassionate and more importantly, empathetic.

“I was able to train myself to take care of my mom, and I taught my dad and my brother. We do everything as a team. I made them sit and close their eyes. We had to think about it; what is mom feeling, and what is she going through?”

Sarah wanted her mom to have the best life she could, and in many instances that actually meant doing less for Kay and letting her mom lead her own life proudly.

“As a caregiver, knowing my mom and all she’s been through, it’s important we put ourselves in her shoes. What would I be able to do, and what wouldn’t I be able to do?”

“We take everyday as it comes. One minute she is fine, next minute she is in the hospital.”

Kay’s most recent incident started with a cut to her right hand. Some skin came off, but it seemed harmless. But the wound got infected and Kay’s hand wouldn’t heal.

The infection worsened and in the end they had to amputate Kay’s index finger. Losing her finger and her advanced neuropathy has limited Kay considerably.

“The things I want to do, I can’t. I can’t see or feel.”  

“My one big regret, what I would advise to others?... Follow what the doctor tells you.”

Kay herself admits it’s hard, but after all she’s gone through, she more than anyone knows the value of managing diabetes. She has survived through suffering that would break most people.

“We see so many people give up. They just accept death, and that makes them die quicker. My mom isn’t like that. She fights. I see that, and it makes me so proud of her.”

“We have other relatives who have diabetes, they do whatever they want. They get on dialysis, then it’s real. But then it’s too late, even though they still have a chance.”        

“You still can do it, look at me.” Kay tells them. Diabetes has taken so much from Kay, but Kay hasn’t lost faith. Sometimes she cries over what she’s been through, and for what she’s still going through. But her response isn’t to give in. It’s to live on.

“I love to be out in the sunshine, I can just sit outside and enjoy it. That’s what I do.”

Kay loves music too, and her heart is anchored in Christian faith; she prays and sings in her ancestral Sioux language.

“One thing I have in my life is Jesus Christ. And I always ask him for help so then I don’t get lonesome.”

To learn more about Kay’s condition, continue here.