Actor Phillip Van Lear and his caregiver wife Heather know what it’s like to live with severe vision loss. In an interview with the Glaucoma Research Foundation (GRF) at the 2022 Glaucoma Patient Summit, Philip reflected on his 22 years of living with glaucoma, while Heather offered practical advice on caring for a loved one with low vision.*

‘An interesting journey’ (0:40)

Van Lear was originally diagnosed with open-angle glaucoma in 2000, and then received an updated diagnosis of acute end-stage open-angle glaucoma in 2015. “It’s been an interesting journey,” he says with an air of positivity despite his losses.

He describes his first encounter with the disease at a Chicago Cubs game as “a bit shocking.” While using binoculars, he kept trying to clean the left lens, believing it was dirty. Closing his right eye during the process, he realized it was his left eye that was fuzzy.

He stopped asking ‘Why?’ (1:56)

Phillip says he “stopped asking why” long ago, “because I don’t know if we’re ever, as human beings, as finite beings, ever entitled to know the answer why.” Instead, he prefers to ask himself: “What can I do with this?” His belief is that living with glaucoma “is an opportunity to be better, not bitter.”

While the psychological and emotional aspects of life changes can be challenging with a glaucoma diagnosis, “It’s not the end of our lives,” Van Lear says, In fact, with solid support, effective therapies, and top-notch care, “there is so much more in front of us than behind us.” This includes being an inspiration and support to others with physical challenges.

Being a caregiver (3:37)

Though caregiving hasn’t been easy, his wife Heather says, the significant teamwork needed has brought her and Phillip closer. Her advice to other caregivers includes these tips:

• Discuss how you can both make things easier at home.
• Stay open and educate yourself, as changes will be needed. 
• Have patience; glaucoma progression is slow, and adjustments will be ongoing.
• Be supportive, even when you don’t have answers.
• Take advantage of available resources and tools.
• Ask what you can do to make their life easier (e.g. cut their food for them), as well as what you can do together.

Advocacy and education (6:05)

Phillip had only learned of the GRF shortly before the Glaucoma Patient Summit, and was immediately impressed by the organization’s depth of research and dedication to patients. He and Heather are excited about their advocacy, and are working to inform other patients and caregivers about GRF.

Phillip’s hope in life is to help “make this journey more easier, more accessible, more comfortable for glaucoma patients and their families,” and encourage more involvement from scientists, clinicians, patients, and caregivers for “more of a team effort.”

Adapting to glaucoma (8:08)

Heather says glaucoma’s family impact has been “life-changing,” but in a good way. They now move through the world more closely, plan their travels carefully, and always sit in the front row at a movie theater or sporting event.

Some household changes include:

• Using “sticky dots” (tactile markers) on household items, like the microwave
• Having their children put shoes, bags, etc., in the same spot all the time
• Organizing their refrigerator for greater ease of locating items

They’re open about Phillip’s vision loss with visitors. Their children’s friends are also made aware of it. 

Final words of advice (10:49)

Heather reiterates that caregivers should take time to do research and get input from their doctor on ways they can help.

• Take low-vision workshops. 
• Make use of online resources and support groups.
• Develop a “toolkit” of strategies you can use.

Phillip encourages people to attend the Glaucoma Patient Summit, as listening to experts can inform, inspire, and boost confidence. The event, he says, “can truly get you excited about how you can better deal—live, not just survive, thrive—with the disease of glaucoma.”

*Glaucoma Research Foundation. (2023, February 24). Heather and Phillip Van Lear: A Glaucoma Patient and Caregiver share their Personal Story [Video file]. YouTube. Retrieved from https://www.youtube.com/watch?v=Bfn12HgH3wE