Finishing up a routine eye exam, Leba Sherman listened in horror as her doctor said the words everyone dreads hearing. “Something isn’t adding up. The scans don’t look normal and I think there is something very wrong.”

At the doctor’s urging, Leba went to a retinal specialist. After months of testing it was confirmed that she had Stargardt’s disease, a genetic macular disorder that causes progressive eye damage and central vision loss.

Leba broke down to the doctor. “This can’t be happening...vision is everything. I can’t imagine life without vision. How will I live? How can I raise three children with this disease? I can’t do this, I’ve already had such a difficult life...”

The doctor offered Leba some life changing words: “You are married with three children. You have a Master’s degree and a great career. You are an accomplished person. Most people who have Stargardt’s walk into this room as children. More than half haven’t even started school. You’ve done it all already. Yes, this is hard, and it’s going to impair you. But realize you have done so much already.”

Acceptance

For a long time, Leba struggled emotionally over the diagnosis. The thought of not seeing her children walk down the aisle created deep sadness. Although Leba’s progression was relatively slow, there were moments when she did not want to get out of bed. After a year of ups and downs, she woke up and made a conscious choice to be happy again.

Leba with her family

“As a mother, a wife and a teacher, people depend on me. I can't just fall apart,” Leba decided. “I don’t want to live life in a dark place.”

Acceptance took time, and it is still a work in progress, but she firmly believes it’s everything.

“I realized this is the new me, and I had to accept it and make the most of it. I could choose to be depressed, but it doesn’t fit with who I am as a person.”

She started living life as if every day was her last day to see and created a special bucket list. Following a recent trip to Greece, Leba said, “I know this sounds strange, but in some ways I’m actually grateful for this disease. Without it, I never would have appreciated Greece to the same degree. I soaked in every moment, and saw the sights on a deeper level, knowing I may not see at all in the future. Now I am living life to the fullest and seeing more than ever before. It woke me up.”

In the past, when her kids asked for an extra book at bedtime, she would sometimes groan and say, “Oh my gosh, I can’t.”

Now, instead of OMG, no, her motto is, OMG, yes!

Yes, I’m going to read that extra story. Yes, I want to read these words because soon I may not be able to. Yes, I want to cuddle and see your beautiful face for as many nights as I still can.

You don’t always have to be strong

After her father died suddenly when Leba was in her early twenties, she learned from grief therapy that it is okay to be weak. It was a lesson Leba applied to her own circumstances. “One of the worst things to say to someone who is suffering is to ‘stay strong’ or ‘you’re going to be okay!’ Maybe I’m not going to be okay. And maybe I don’t want to be strong.”

Sharing her story has empowered Leba and given her strength on hard days. “I posted a message recently and the feedback I received was tremendous. I refer to these messages on difficult days. Knowing that sharing my story can help someone else with their struggle motivates me to open up.”

While messages from friends help, her startup fashion company Elle n Dee has kept her busy and distracts her from the reality of the disease. Through Elle n Dee, Leba creates beautiful clothing, and a portion of the proceeds go towards finding a cure for Stargardt’s disease. Running the company helps Leba feel vibrant and alive, and allows her and her business partner, Danielle Scharf, to raise awareness.

Elle n Dee clothing

Ultimately, Leba’s strongest source of support comes from her husband and family.

“I have an incredible family. My husband is phenomenal, and our strong foundation is really what gets me through. I can’t fail because I do not want to let him down.”

Although not every day is perfect, Leba is happy and grateful for her life. Instead of dreading the future, she looks forward to what’s in store.

Leba’s Hebrew name is Leba Tova Bat Malka. She can be reached at leebish15 at yahoo.com