Friday, September 7, 2012

Tulsa Council of the Blind

Logo of person with white cane.
As many of you know, my husband Bill is legally blind. He began losing his vision in 2006 after a visit to get contacts. We visited eye specialists from here to the East coast in search of answer to why he was losing his vision, but no one seems to know. The specialists at Johns Hopkins in Baltimore, MD, finally decided it was probably genetic or an autoimmune disease. He said this is the standard answer when they can't figure it out.

We were both hoping the vision loss was temporary; but, after consultation with doctors from Dean McGee, John Hopkins and Mayo Clinic, we finally had to accept the fact that, barring a miracle from God, he would probably not regain his sight.

In the meantime, we were both struggling to adapt to these changes. Bill was struggling with his lost of independence. No more could he get in the car and go somewhere. He has to depend on me to drive him. I was struggling with a change of roles. Bill had always been the one who went out to work. He loves being with people and want to go, go, go. In contrast, I enjoy working at home alone and only like to go out on special occasions. It was the perfect marriage. He enjoyed going out and I enjoyed staying home. We were both happy. But now, our roles had reversed. How would I be able to take care of all the things that Bill used to take care of? How would Bill be able to adjust to staying home and being dependent on others? This was a scary time for both of us and we didn't know where to turn for help. The doctors only worked on a diagnosis; they gave no advice on where to get emotional support.

In desperation, I began searching the Internet for blind support groups and only found one: National Federation of the Blind. We went to a meeting and quickly wished we hadn't gone. The leader of the group told us in no uncertain terms that if we came there because "Oh, I'm a poor little blind person and I need help, you've come to the wrong place." Both of us wanted to slide under the table and disappear. We stayed for the meeting, but were so glad to go home. That was definitely not the help we were looking for. We went home and prayed for help from somewhere else.

Finally, after searching the Internet some more, I ran across a small posting from a person who ran a support group in Tulsa called the Tulsa Council of the Blind. We went to the meeting and found just what we were looking for. They were helpful, supportive and caring. They told us where to go for more help and who to contact. This was the breakthrough we had been looking for. From there, Bill has been able to get help from the VA, the Oklahoma Department of Rehabilitation, and more. Emotionally, we have both learned to adapt and are making progress in getting back to a new normal.

I said all that to say this: I have just finished creating a website for Tulsa Council of the Blind. My goal is that this website will not only make easier for someone to find this organization, but that it also will help others get the help they need when going through a transition such as ours.

With the help of the staff, I have including information about the organization and its services, as well as links to other websites with helpful information for both the visually impaired as well as for the family and friends of the visually impaired. While on the site, you'll learn interesting facts about the blind, gain knowledge about the causes of blindness, discover resources for helping the blind gain confidence and independence, and even find educational resources for parents of school-age children who are blind or visually impaired.

If you know anyone who is losing their vision, please send them to the Tulsa Council of the Blind website.  And if you have a website or blog or Facebook page, please link to the website so that others can find it. Don't let them go through this alone!

UPDATE: Sept 21, 2012. I just received a nice note from the new president of NFB apologizing for the treatment we received at the NFB meeting. It's nice to know that someone cares enough to reach out and make it right.

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