Episode #49: Martel Catalano
Martel Catalano is the Executive Director and Co-Founder of Beyond My Battle, a non-profit helping individuals and loved ones manage the emotional stress of serious illness and disability. Martel was diagnosed with a rare eye disease, retinitis pigmentosa, in her early teens and after many years of pushing her condition away, she began a journey inwards in her mid-20's to understand her anxiety and depression. Today her work guides others in reducing stress, reclaiming power, and reestablishing a loving connection to the self and those most important.
About five years ago, Martel Catalano realized she couldn’t ignore her chronic condition any longer. She has retinitis pigmentosa, a degenerative eye disease that causes a person’s visual field to get smaller and smaller--and there’s no known cure for it. After going through a period of, as she calls it, “denial and disassociation,” Martel realized that her denial was causing additional health problems. On today’s episode, Martel and I talk about why she decided to lean into her diagnosis and address her stress about her condition, and how she hopes Beyond My Battle will help other people with illnesses and disabilities do the same. We also talk about what it’s like to live with a visual impairment that’s invisible to others, and how she handles moments of misunderstanding that happen when people aren’t aware of how she sees her surroundings.
“I didn’t hide it, but I also didn’t talk about it.”
Here are some of the things Martel and I chatted about:
What retinitis pigmentosa (RP) is, and how it affects vision (particularly night and peripheral vision)
The symptoms she began to experience around age 13, and how those symptoms progressed
Why it’s important, when possible, to seek out a specialist while searching for a diagnosis
How denial about her condition manifested in illnesses like anxiety, depression and GI issues
Realizing, with her mom’s help, that she needed to address how RP was affecting her life
How fear held her back from meeting other people with her condition, and how that’s changed
The negativity that’s sometimes present in online support groups, and how that adds to stress
Starting a different kind of support group--one aimed at remedying emotional challenges
How Beyond My Battle evolved into what it is today, and the kinds of resources it provides
Using language that’s based in self-inquiry, rather than focusing exclusively on positivity
How rewarding it is when she hears from people that they’ve been able to address their stress
The survey her organization conducted, which showed a huge void in emotional support
Her decision to move to upstate New York, and how she has benefitted from that move
“I used to walk away from that situation and be teary-eyed or feel angry at that person for not understanding, but now I see it as an opportunity to tell that person, ‘oh, I’m visually impaired and I have a really rare condition where I can’t see below.’ And to see the change in their face in that instance is remarkable, because no one has told them that before.”
Support for this episode comes from Felix Gray. Felix Gray makes stylish, high-quality blue light filtering glasses. Their prescription, non-prescription, and reader glasses filter blue light and eliminate glare, helping wearers combat tired dry eyes, blurry vision, and headaches related to screen use. To try a pair for yourself, go to felixgrayglasses.com/madevisible. You get 10% off when you buy 2 pairs and 15% off when you buy 3 or more pairs. Both adult and kid sizes are available!