By Marquis Vaughn
Scheie Vision Summer 2020
Early one June morning in 2019, Sam Hendrickson, 50, was ready to begin the day when he felt that something was not right. “When I woke up, I discovered that I couldn’t see out of my right eye,” he recalled. “I was rubbing it and threw water on my face, thinking that I maybe slept on it weird or something. When I realized that I didn’t, I got really scared.” This led him to go to the Scheie Eye Institute emergently.
Sam was no stranger to the University of Pennsylvania Health System. At the age of 10, he was diagnosed with diabetes at the Children’s Hospital of Philadelphia (CHOP). His endocrinologist referred him to see a retinal specialist at the Scheie Eye Institute, Alexander Brucker, MD, who regularly monitored him for diabetic retinopathy over subsequent years. When Sam experienced sudden vision loss in his right eye, he had no hesitation calling Dr. Brucker, who told Sam to come in right away to be examined.
“He ended up sending me right upstairs to Dr. Tamhankar, and said that this was not a retinal issue, but something different,” he explained. Madhura Tamhankar, MD, neuro-ophthalmologist at the Scheie Eye Institute, noticed the swelling of the right optic nerve, and diagnosed him with non-arteritic ischemic optic neuropathy (NAION).
NAION occurs due to loss of blood flow to the optic nerve, which is the link between the eye and the brain. This condition causes sudden vision loss, usually in one eye. Essentially, Sam experienced a stroke in his right eye. “This is a condition that can cause irreversible vision loss,” explained Dr. Tamhankar. “Sam had a particularly severe form of it, and he lost his vision in one eye. During his initial examination, we found that he had vision loss in the other eye as well, and his optic nerve was swollen in the left eye also. Unfortunately, there is not much to offer in terms of any treatment.” Thus far, clinical trials have not shown much efficacy in treating NAION. In a matter of weeks, Sam’s left eye suffered the same fate, causing him to lose vision in both eyes, becoming legally blind.
Sam described his new level of eyesight as “living inside an impressionist painting—it’s very blurry, out of focus.” Needless to say, this event completely changed his life. Being the patriarch of a blended family of six, he could no longer work, causing him to go on full-time disability.
“This is the hardest thing I’ve had to deal with. There’s nothing like being able to see. It’s hard to describe, but it’s one of those things where, like many people, I took it for granted until I didn’t have it anymore,” said Sam.
Other eye conditions, such as macular degeneration or glaucoma, typically cause gradual vision loss, so people often have an opportunity to prepare or adapt to losing their vision over time. But when somebody goes blind in both eyes within weeks, it can dramatically affect their mental health. Questions arise, such as: how am I going to support myself? What’s going to happen to my children? Who is going to pay the mortgage?
Within a matter of weeks, Sam, with the help of his wife Christine, began to take steps to heal and overcome his visual disability. “Sam and his wife were extremely motivated and wanted to pursue various interventions for his recovery,” said Dr. Tamhankar.
Besides a low vision evaluation, Dr. Tamhankar suggested that Sam and Christine schedule sessions with a grief counselor, which proved very helpful. Coping with blindness can be very overwhelming and challenging. There is a complexity of emotions involved, such as anxiety about the future, depression, and helplessness. It can affect not just the patient but also immediate family members. “One of the biggest frustrations is the things you used to do, you can do them, but it takes so much longer because of the impairment,” Sam described.
Technology and assistive equipment have also helped Sam to navigate through his blindness. Sam met with Ranjoo Prasad, OD, of the Penn Center for Low Vision Rehabilitation at Scheie. “It was very hard for me to see, and then we met with Dr. Prasad, she gave me tools,” he explained. “For example, one of the tools was Apple products. I switched my phone over to an Apple phone and began using a lot of great accessibility features for visually impaired people. Then my mom and sister chipped in and got me a 13-inch iPad, which I first discovered in Dr. Prasad’s office.”
By pinching and enlarging the screen while wearing magnifying glasses prescribed by Dr. Prasad, Sam can see some text and even send emails and text messages. Sam says his children have come up with a rap name for him, playfully calling him “40 Font.” Sam also utilizes navigational apps such as Google Maps and Be My Eyes, which uses volunteers to let users know what is happening in front of them and answers questions in real time.
Dr. Prasad emphasized how important timely care is for patients experiencing sudden blindness. “There was no delay in Sam seeing me, so we could provide him with these resources and refer him to appropriate providers,” she said.
Sam and Christine are also very involved in advocacy to support families affected by autism. Their eldest son, Liam, now 20, was diagnosed with autism as a child. In December 2019, only months after he became blind in both eyes, Sam traveled to London to present a poster entitled “Nurturing Families with Special Needs” at the World Congress on Special Needs Education. He discussed special education needs from an international standpoint.
“I had my iPad in front of me, and we coordinated the slides we were going to talk about and we did it! We pulled it off,” he said. Sam had always planned to start a non-profit to help and work with families who have loved ones living with autism. Now more than ever, he is determined to continue his work to raise autism awareness and support. “You don’t need your vision to help people,” he said.
Sam remarks how his wife has been a source of strength and support for him during this transition. Christine has been invaluable in spearheading his recovery efforts, helping him achieve his therapeutic goals and gathering resources for him. While researching, she noticed that resources for the blind were hard to find. Having just received her PhD, she had refined her research skills and now had the time to investigate this area.
“I met with Dr. Tamhankar and shared with her all that we had accomplished in six weeks, and she was taking notes about it. I went home, and rather than send her a list of things, we created a website so it was not just useful to her, but to the people she had connected us with, and people started to call me,” Christine said. She went on to explain that people who are going blind are already dealing with many changes and emotions, and they should not be worried about how to find certain forms or locate particular services. This could only add more stress to patients and families dealing with visual loss. Sam and Christine continue to work and gather resources to add to the website, which can be found here.
Sam and Christine also recently joined a private rowing club through Princeton University. “You don’t need to see where you’re going. In fact, you row backwards and you use a coxswain to guide the boat,” Sam said.
Sam has good days and bad days just like everyone else as he strives to cope with his vision loss, but he doesn’t let that get in the way of his drive to help people. In fact, it’s one of the motivating factors that keeps him going. His spirit of giving has been enhanced due to his vision loss, and he truly believes that it is imperative that we help one another.
“The whole point of living through experiences like this is taking what you’ve learned and sharing it with other people so they can become stronger, and that’s what I would like to do—both with vision loss and my non-profit,” he said.