Conversations with… Jessie Wolinsky (Subject: Vision Impairment and Fundraising for Foundation Fighting Blindness)

Imagine finding out that you were going to lose your vision. What would you think? How would you feel? Who or where would you turn to for support?

Thanks to people like Jessie Wolinsky, those who face that diagnosis have a place to go for help.

Not only does Jessie passionately fundraise for Foundation Fighting Blindness, but she has also founded the support group Sight Club and shares her own vision impairment journey online. Her goal is to offer support, friendship and hope to those in a similar position to herself and educate those without a visual impairment on life with one. She has an incredible bubbly, upbeat personality that shines through in the message she projects to the world. It’s a real honour to share her story with you this week.

You have been fundraising for Foundation Fighting Blindness (FFB) since 2006 – wow! What have you done in this time?

I started when I was 14 years old and so far I have raised around $200,000 for blindness research. I have also been lucky enough to speak at several fundraising events, serve as the president for the FFB’s Los Angeles Chapter since 2018, and start a social club for visually impaired young adults living in Los Angeles.

What has fundraising brought to your life?

Fundraising has brought so much joy to my life! Not only do I feel as if I’m taking control of my future by raising money for a cure, but it has also allowed me to share my story and inspire others to embrace their own unique story.

You have Retinitis Pigmentosa (RP). How has this impacted your life?

Living with RP has really been a rollercoaster of emotion for me. I was diagnosed when I was only 7 years old so growing up with it was incredibly difficult. I always felt different from everyone around me and I didn’t have any confidence in myself for a very long time.

I started getting involved with the FFB and fundraising when I was 14 years old, which was also when I started to battle depression. I remember deciding that I was going to kill myself if I ever did go completely blind. That thought was comforting to me because I felt as if that was the only way to have control over my life. I thought that ending my life would be better than being a blind person, so to say that I am incredibly grateful that I have shifted away from those thoughts is an understatement.

I still struggle with depression and I’m sure I always will, but these days I find myself feeling blessed to have RP because it’s allowed me to have a different perspective on the world. I’ve learned how to be a much more compassionate and giving person because of this disease. It has given me a unique purpose in life, which is to help inspire others to embrace themselves for who they really are despite their insecurities or shortcomings.

What do you wish people knew about sight loss that perhaps they might not?

I want visually impaired people, especially visually impaired children and young adults, to know that losing your sight doesn’t mean you are losing your life. That’s what I thought for a very long time. I grew up believing that I would never be able to live a happy, successful life because of RP, and over the years I have learned how untrue that is.

For people who aren’t visually impaired, I would want them to know how important it is not to judge people because everyone is fighting a battle that you might not know about, so being open minded and willing to learn about other people’s struggles is important. I also want to encourage people who aren’t visually impaired not to be afraid to ask questions if they meet someone who is, and not to assume that they can or can’t do something. At the end of the day, visually impaired and blind people are just like everyone else. They just want to feel included, supported, and loved.

You share your story with an incredibly strong, positive mindset. How have you nurtured this perspective?

I consider myself to be a positive person with a positive mindset, but thinking positively about my life doesn’t come naturally to me. I work at it every single day.

It has always been easy for me to be kind and loving to other people because I know how much I appreciate receiving kindness which inspires me to spread it, however being kind and loving to myself has always been a struggle. I have been in therapy on and off since I was 7 years old. Learning to talk about my issues instead of keeping them bottled up has been one of the best things I have ever done.

Fundraising for FFB has allowed you to do some incredible things that take a lot of courage such as public speaking. What advice would you give to someone who is wanting to take on a new challenge or try something scary like that?

I am honestly so scared of trying new things! It takes a great deal of courage for me to put myself out there, however when I have allowed myself to be vulnerable, wonderful things have happened for me. I don’t think it’s easy for anyone to be completely open to new situations, but it is so important to break out of your comfort zone because that is how growth happens.

If I could give advice to someone who is wanting to take on a new challenge, it would be to believe in yourself and the undeniable power that you have. Nothing that is worth doing is going to be easy. It’s normal to be scared, stressed, and unsure, but you’re much more capable than you think. Just go for it!

(Full disclosure: I’m still working on this too! Being confident in yourself is hard work, but it is work worth doing.)

How has the network of people you have met on social media and working with FFB supported you with your own attitude towards your vision health?

The people that I’ve met through the FFB and through my social media have been total life savers. It wasn’t until I started meeting other visually impaired people that I realized that blindness wasn’t a death sentence. I have so many strong, smart, and incredibly successful visually impaired and blind friends who inspire me every single day.

I remember in 2018 I spoke at a gala that Stevie Wonder attended and I got the chance to meet him. He congratulated me on my speech, and then told me something that I have thought about every day since. He told me that the sighted help the blind to see, but the blind teach the sighted to have vision. Hearing this made me feel as if I was chosen to have a visual impairment because I am strong enough to handle it and use it to help make the world a better place.

Without people like Stevie Wonder and the countless other wonderful visually impaired people I’ve met, I wouldn’t feel as capable and confident as I do today.

You have recently started a fantastic new initiative, a club for visually impaired individuals in LA.  What do you hope that this club brings people?

Sight Club is all about creating a safe space for visually impaired people to connect with each other, share their experiences, and have fun! I would love to see Sight Club expand to other cities so that no matter where someone lived, they would have access to a community of other visually impaired people and feel less alone.

If I wanted to support FFB, what could I do?

The best way to support the FFB is to make a donation to help fund their research to find cures for retinal degenerative diseases such as Retinitis Pigmentosa. Clinical trails are incredibly expensive so getting as much funding as possible is crucial.

In addition to donating, spreading awareness is very important because many people aren’t aware of these diseases and how detrimental they are to those who are affected.

If you could sum up your outlook on life in one statement, what would it be?

I am not always able to control what happens to me, but I am always able to control my reaction.

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