Mindy was three years old when she was diagnosed with rheumatoid arthritis; her sister was five.  They were the youngest siblings in America to be so diagnosed. 

I met Mindy when I was bringing two bird-killing balloons to the cans at Lincoln Beach ramp. Mindy was sitting at the foot of the ramp, looking seaward, a bit pensive. I didn’t know why, of course.

As we chatted about balloons and other things, her pensiveness evaporated, and bubbly erupted. I found Mindy vivacious, effervescent. When I mentioned her positive vibes, she said she always considered herself “bubbly.”

When I saw Mindy’s face light up, I could see how it would light up the faces of those she met—like mine. She said, “I’m always the playful child in my group.” I discovered it was that spirit that carried Mindy successfully through life.

Mindy, thirty-seven, told me she was born in Long Beach and has lived here all her life; she said she had vivid memories of life growing up. I asked if she would agree to an oral recording for our library’s oral history project, and she agreed.

We later met for that interview near Gregg LaPanna’s Lazar’s Glizzy.

We sat at the boardwalk bench on a blue-sky sea breeze day. Mindy told me more about herself, and when she did, I decided to write this essay about her.

Since age three, the rheumatoid arthritis has affected her elbow, right wrist, and left eye. Her sister Amy had the debilitating effects on her elbows, knees, and hands. A younger brother, Mathew, has no arthritis.

At age five, Amy had trouble walking; they went to the doctor, and the sisters were diagnosed.

Good people step in for good people—And that’s good.

At age twelve, their mom, Marlene, died from breast cancer.

Dad, Tom, was present for them one hundred percent when Mom died, but the family also had help from long-time friends Ron and Trish Paynter. I’m sure the Paynters were just being themselves, doing what they always did, making a difference when it was needed. But that difference left a permanent impression on Mindy and, I’m sure, many others.

Mindy said, “They were my family’s best friends my entire life, like my surrogate parents. Mindy spoke enthusiastically, her words tumbling out in dear recollections: They did so much for us. Trish got us on the bus for school and so many other things. We spent Christmas Eve together, even Mother’s Day. Ron always said to his daughter, Olivia, Mindy’s best friend, “You’re never fully mature until you lose a parent.'” Mindy asked Olivia, “I guess I’m mature now?” Olivia said, “I guess you are.” Dr. Ronald Paynter died two months ago, but a wise man and dedicated healer left his mark.

arthritis didn’t hold either sister back

Amy is now Amy Alpren with two children and a successful career working for Northwell and CBS as an analyst. 

Their dad was a builder, and as a child, he took Mindy to many construction sites. She learned the basics of building from him and later applied to the NY School for Design. She said, “They only took seven people a year, but I crushed the exam.” 

She graduated and worked as an interior designer for ten years.

Currently, the most trying effect of Mindy’s rheumatoid arthritis is in her left eye. It becomes inflamed, and the pupil gets stuck open. 

Mindy said, “When the pupil gets stuck open, light flutters in, and it hurts; it burns. The inflammation of the muscle in the eye socket has so many veins that go from your eye to your brain,” causing the pain. She said, “Sometimes stress triggers it, sometimes exhaustion.” She said her sister gets her arthritis symptoms from the weather.

Mindy said, “I’ve been on steroids since three and gel eyedrops that help separate the pupil from the outer eye so it can expand and contract again.

About 2010, when Lasic surgery became popular, Mindy said, “My dad took me to three surgeons in Manhattan—none would accept the job.”

She said Inflammation is the main problem with the eye. And with any post-surgery, it is important to control inflammation and the drainage of any backup fluids. Since inflammation was her main problem, they refused to do it.

Mindy saw X-rays of her eye and said, “It looks like a dense yellow cloud, a mustard yellow, like a bad shot of the moon.”

As we sat on the boardwalk bench, looking at the ocean, Mindy, with her left eye, saw only the colors before us: the dark blue to light blue of the sea and sky. She didn’t see the horizon’s edge where sea and sky meet, as full sight allows. The green grasses of the dune in the foreground had no definition.:

Consulting Mindy, I’m able to demonstrate her vision:

Fortunately, Mindy’s right eye is 20/20, and with that one eye and resilience, she developed another successful career. 

Aldous Huxley said, “Experience is not what happens to you; it’s what you do with what happens to you.” Mindy continued putting her assets of a good eye and perception to work.

Mindy said her right eye works wonders for her. She said, with it, “I’ve always been able to see colors correctly.” She said, “It’s my biggest win. I can see green undertones and blue undertones,” which helps customers match their decor.

Mindy moved on from interior design to FFElegance, selling fabric, wallcovering artwork and casegoods furniture to hotel interior designers.

Last year, Mindy encountered a stressful meeting on a business trip to Dallas. She was in a dark conference room, and the bright light from a huge TV screen focused right at her.

On the flight home, with the altitude and the pressure in the plane, her eye hurt so bad. She said, “You have to keep it covered; put a lot of pressure on it. It’s hurting your eyeball, so you feel if you hold it in place, it’s not going to put all the pressure on your brain.”

She said, “My eye was already swollen and now with the altitude, it’s pushing so much into the temple. I had my head buried on the drop-down table, crying and praying for this to end. I have never felt anything that painful.” She said, “I took four days to calm down.”

Mindy said sometimes she has such bad inflammation and she doesn’t want to go outside, “Any light kills it.” In high school, she wore an eye patch when she had a bad inflammation.

Do you think Mindy would be embarrassed by the eyepatch? Not Mindy. With the help of her friend, Gina Pantony, she bedazzled her eyepatch.

There is no eyepatch now, but Mindy protects her eyes and, with her good eye, sees the sweet sand, sea, and sky of Long Beach, NY.

We don’t just see with our eyes; our experiences affect our perception. Mindy had good people doing good things for her in her life, and her mind embraced them. Now, she sees the beauty in life—and people.

Still bubbly—after all these years

Mindy still drives; the DMV has no problem with her condition, as her right eye is 20/20.

When I asked Mindy if she would still fly, she said, “Of course, I’ll fly; inflammations only come once or twice a year.”

I said, “You have a good attitude about your situation.” She said, “I mean you have to. Things happen to everybody; we all have our “stuff.” But at what level? If it affects you in a negative or hard way, you have to make the best of it and laugh. Because, you know, life is short.”

Mindy is happy. She loves living in Long Beach. She’s got a job that she’s well suited to. She lives with the love of her life, Noel Kennedy. He’s in the NYC Fire Dept Academy and will graduate next month and join the legion of the bravest—as a NYC Firefighter.

While interviewing Mindy, I became thirsty and had to walk back several benches for my bike thermos. I handed Mindy my phone to keep recording while I was gone.

At home, I listened to what she said while I was gone.

It was about the day we met at the Lincoln Beach ramp. She spoke of what her mind was like before I arrived. She had lost her car key and had to buy a lockout kit as the key replacement cost was so steep.

She said into my phone, “I was miserable, and Lee told me we met for a reason, and now here we are. At first, I laughed when I thought about meeting for an interview and speaking about Long Beach. Now that I think about it, it’s really sweet and special that Lee is taking the time to put people’s stories and memories together. Because one day they will fade or not be remembered if somebody doesn’t record it.”

Mindy’s Long Beach oral history recording:

Be well,

Leebythesea