Finding Support

Yellow and black caution uneven surface sign with stick figure stumbling in the air over something on the grouondOn the local news, I hear it all the time. A reporter may say, “the driver of the car sustained major injuries but is expected to be okay, ” or, “the victim has now been discharged from the hospital.” The camera cuts to a smiley anchor and a few notes play as the next lead begins. I cringe. Must be nice for viewers to disengage and move on to something mundane like the weekend forecast. Meanwhile, I can’t help but think the person on the mend has many struggles–physical, emotional, even perhaps financial–ahead.

Maybe a person miraculously walks away from trauma with few initial injuries, but goes on to develop chronic health problems like anxiety or back pain. A person who is, “expected to be okay,” will still face adjusting to life after a loss. When we endure loss, we carry scars. The effects of trauma can linger well after medical charts are filed and healthcare bills are settled. Who manages and heals invisible scars?

When I experienced significant vision loss five years ago, I wanted to find other young adults dealing with vision loss. It’s important to find supportive peers who are dealing with loss, too. While family and friends can offer incredible help, sometimes you need to relate to your peers for certain things. I googled for organizations and support groups and websites to find others like me.

I found a lot of medical information, but not always emotional support. I found a ton of senior centers offering group therapy for people with macular degeneration. I found many hubs like the NFB’s group for parents of children with vision loss. I happened upon a site called VisionAware, but as it seemed to be new and while it’s potential was great, I didn’t find what I was looking for there. Yet.

Instead, I started writing my blog and reading other blogs and websites dealing with vision loss. I started my Low Vision Blogroll on the right sidebar. I continued to occasionally read VisionAware’s blogs and I read Foundation Fighting Blindness’s Eye on the Cure blog. I listened to podcasts hosted by people with vision impairments like How to Be Blind and High Contrast (rip), and BBC’s Ouch! and In Touch. I looked into joining national organizations and Stockton drove me to a few meetings. I joined twitter and made more connections on social media. I reviewed books with blind characters. Eventually, I realized by relating to others in books, on blogs, on pods and by sharing my experiences every week with you on Adventures in Low Vision, I connected with many people like me.

Recently, a fellow writer, Audrey Demmit of Seeing Possibilities, invited me to join VisionAware as a Peer Advisor. When I revisited VisionAware, I realized it had blossomed into a great community for those new to and living with vision loss. The VisionAware site offers more than medical information about eye conditions; it offers things like peer support and career advice and parenting discussions and resources to find many services near you. It’s the kind of thing I wish I found five years ago as I started to adapt to my disability. Priscilla Rogers, Program Manager for VisionAware, introduced me to some of the other Peer Advisors and I met many interesting and helpful peers. I decided I wanted to be a part of the movement. Today I’m pleased to announce I’m a Peer Advisor for VisionAware. Check out my first Visually Impaired: Now What? blog post, Freedom Sticks. Woot.

We all deal with and struggle with loss. It’s okay to ask for help and seek out resources. It’s how over time we are, “expected to be okay.” It takes support. Now everyone, let’s talk about the weather.

When you experience a loss, where do you find motivation and support? Has it changed over the years? If you or someone you know gained a visual impairment, have you visited sites like VisionAware yet? Do you find it helpful to relate to peers experiencing similar losses? Tell me about it.

 

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8 Comments Add yours

  1. Modwyn says:

    I love how you presented this post.

    It’s also important to analyze the mission of these organizations and groups. Sometimes a “support” group is not all that supportive. Groups that focus only on a cure can be really depressing and offputting to people trying to live with visual impairment.

    It’s exciting that you’re helping people be more than okay!

    1. Thanks, Modwyn! Matching needs to missions is a great way to find good resources.

  2. Anonymous says:

    Sooze, I do not believe that I have ever told you, but you inspire me every day, as I am positive that you inspire many individuals and will continue to do so in your new ‘venture’ as a peer advisor. Love you, Aunt Susie

    1. Thanks Aunt Susie, love you more!

  3. Trisha says:

    It’s wonderful that VisionAware has blossomed into a great community! It always helps to find others experiencing things similar to what we’re going through.

  4. Casee says:

    It definitely helps to have people that understand what you are going through. It is fun to commiserate, laugh and cry together, and encourage each other to get on with life. Congratulations on your new gig!

    1. That’s right, Casee, commiserate, encourage, get on with life.

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