Overcoming obstacles with Optimism

In an upcoming event I am scheduled to attend, I saw this option: “Individuals with disabilities are encouraged to attend all (school) sponsored events. Do you require an accommodation in order to participate in this program?”  I thought a lot about this offer.  Assistance would be nice.  I do have disabilities.  However, I think the organizers were thinking more along the lines of wheelchairs or assistance for low-sight individuals.  My thoughts went more towards having people hold my hand and guide me in a world that sometimes leaves me a little confused.

Helping others

Thank you morguefile.com for the use of this photo.

If you passed by me, you will see a lady with a slight limp and a quick smile.  You will see someone who sees where she is going but does not always see the hallway on the left she should’ve gone down when you said “take the first left”.  You will see someone who is grateful when you said you want to speak with her later, but she – having prosopagnosia – looks lost as she scans the room suddenly panicked noticing there are three men with greying hair wearing a navy jacket just like you.  I am embarrassed when I leave a piece of my lunch hanging on my lip, but I don’t know it is there because that area is still numb like the entire left half of my body used to be after my stroke.  You cannot see any obvious physical hint showing my frustration when I look for the person who was going to walk me to the podium, but I fill with dread and worry when I don’t see her as the room quickly fills with individuals.

Thank you to http://www.lighthouse.org/ for granting my use of your picture.

Thank you to http://www.lighthouse.org/ for granting my use of your picture.

I am a slightly disabled individual inside of a, for the most part, able body.  I commented to someone how much I would appreciate them going with me to this particular event, so they could hold my hand.  The comment was answered with a well-meaning chuckle saying they had no doubt I would be able to handle this on my own quite well.  I hesitantly agreed.  They were correct.  I will do just fine on my own.  I always do.  But, believe me, sometimes facing a world you cannot fully see and being close to people you cannot recognize is more challenging than I may let on.

The event I am attending wants me to check an option if I “require an accommodation in order to participate in this program”.  I am sure I will leave it unchecked.  After all, in the one line how do I explain I would like someone to come so I can hold their arm and have a friend who will guide me?  There is no simple way to explain all of this within a small space, so I will eagerly seek out an individual who will quickly and fully understand when I say I am lost because I cannot recognize anyone in this room.  Maybe they will be willing to walk around with me.  Sometimes it is invisible limitations that leave me so lost. Yet, I always remember maybe it is these exact same limitations which have forced to me to have grown so independent and so strong.

Finish Line For Coronado Bay Bridge Walk

4 Years 4 Miles

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Comments on: "Being Disabled In an Able Body" (16)

  1. Tara,

    Thank you for your thoughtful post on the almost invisible disabilities. Over the past several years, a number of times, I nearly reached the breaking point with technology companies over their easy access machines. I have engaged in the email version of a shouting match with Microsoft over the unfriendliness of Windows 8 to people with tremors and those who think in terms of pictures instead of words.When my old laptop died on New Year’s Day, I went as far as to beg them to let me keep my Windows 7, mouse and keyboard. Touch screens are next to impossible for me to use. I end up sending stuff to the great LA-LA land of who knows where. I had to resort to mail order to get a new laptop with Windows 7. No retailers are permitted to sell Windows 7 now.

    My wife and I are getting settled into new routines here in PA. It is great being minutes away from family instead of 10 hours. I have a new website and just posted some new stuff on my blog By’s Musings. I invite you to look at it. You may find the website and blog at http://www.higheredbybaylis.net. I am in the process of gearing up to start advertising for clients for my new consulting/coaching business HigherEdByBaylis LLC. Sitting at home is getting on both my nerves as well as my wife’s. I need to work even though I can’t do what I used to do.It’s like I said in one of my early posts. “I know what I know and what I know is still revelant.” I just need to find a way to convey my thoughts and ideas to others.

    Shalom and Blessings

    By

    • I am so glad that things are working out well for you. I would guess your family is comforted knowing they have you close by now. That is surprising you are having so many problems with Windows. It is a good point about the touch screen. A great point actually!

      Thank you for sharing your new website information. I’ll be stopping by very soon. Your clients are going to be lucky they have a chance to work with you!

      Tara

  2. Tara, if I lived closer, I’d go to all of this stuff with you.

  3. i wish could be there to help. 🙂

  4. Wendy said:

    What a moving story! Thank you for sharing your journey. How brave you are! And yes, life is so much easier with support. There are many things we can all do for ourselves, but do we always have to? I have PTSD from an infant anesthesia without anesthesia, and while I don’t thankfully now have any physical limitations, my mind and body are often in a state of tension and stress. I have a scar on my belly that people don’t see, but I’ve struggled emotionally all my life. I could relate with your words on a deep level. Much appreciation. It’s just so important to be loving toward everyone because we have no real idea what others are going through.

    • Living a life with tension and stress on a constant basis must be exhausting at times Wendy. You are a very strong lady. Thank you for sharing your story and helping others learn one of the many ways PTSD effects people in invisible ways. Your love and strength are motivation to many.

      Tara

  5. I certainly agree that being independent — both chosen and thrust upon you — have made you strong and self-reliant. But I also agree with the commenter who says, Why do you HAVE to do that all the time?
    I know this from Frank, whose hearing is getting to be non-existent, that there are invisible disabilities. People look at this able-bodied person and it doesn’t dawn on them that he might have a disability or handicap. But he does. And like a typical guy, he doesn’t tell them in advance. I would! If they can’t see it, they don’t even know there’s a possibility to help! To be alert to difficulty! And you certainly look able-bodied, bright-eyed, bushy-tailed.

    Give people a fighting chance, is what I say! Tell ’em! If you don’t want to actually ask for help, you can just let them know that this kind of assistance would be useful/comfortable if it’s possible. And since you know that you’ll manage without them if necessary, then you’re not pressuring them or anything.

    I’m not great at sizing up sensitive situations, and I’m shy about offering assistance. So I regard it as a privilege if someone makes known what would be helpful, and that my help would be welcome.

    My two cents!
    🙂

    • Your words are always worth much more than two cents to me Judith! I will meet someone there, strike up a conversation and let them know I will need them to seek me out when they see me again. Yet, prosopagnosia is so difficult for people to understand in a passing conversation. The quick explanation is always returned with, “I understand. I’m not good with faces either.” Not at all the same!

      I am certain I will make connections. Maybe I will have a shirt made that says: We met but I’ve never seen you before or forgive me if I just explained face blindness to you a minute or two ago.

      And again, your thoughts are always priceless to me!

      Tara

  6. What a powerful post and strong person! I bet you get a lot of rude comments when you bump in to people because your visual field cut. I know you’ve learned to scan your environment, but it doesn’t just happen all the time. Your problem isn’t something you can read in a book and understand, it’s something you understand when another lives it!

    Have you found yourself fixing one side of hair and not the other? And eating only half of what’s on the dinner plate because that’s all you see? Which is worse the visual field cut, or the numbness you continue to feel?

    I admire your wisdom and experience. I never said anything for years and never asked for help until I realized I could use it as an opportunity to educate about brain injury. I would definitely hold your hand and help you through these difficult times.

    Take care and stay safe, Edie

    • Thankfully, my experience with visual neglect has been very limited. I do not remember ever paying attention to one side of my hair or make-up and not the other. I suppose that is an unexpected gift of face blindness…I take no more than the required amount of time glancing at my reflection in a mirror. And when I do stop and look, makeup for interviews or such, I take extreme notice to every single detail being reflected. There have been occasions where I still felt hungry after eating breakfast. It isn’t until I put the plate in the sink that I notice the hunger is due to half of my toast still sitting on the plate! 🙂 Best answer to that common “see food diet” joke where if you see it you have to eat it.

      I was taught a great game when I was working on ways to cope with my loss of sight. We lined the hospital hall with post-it notes. I was timed trying to read the notes of numbers and words I saw written as I struggled walking down the hallway. We did this again and again working on both walking and seeing at the same time. When I feel I am slowing down on my scanning awareness, I still work on this in my halls at home.

      The numbness does not bother me as much as it does other people. I remember sitting at a table with a young girl. Her family knew of my issue with loss of feeling on part of my face. I left a piece of food hanging near the corner of my mouth. This little girl innocently pointed it out. Her mom was mortified! She was so embarrassed her daughter called me out on this. Me? I was grateful. I tried to tell the little girl thank you, but that did not mend the mom’s disappointment in her daughter. I wish I could feel all my face, but more than that, I wish there would be no awkwardness in saying, “Tara, wipe your mouth right there.”

      I don’t know there is a “worse” remaining disability. I think they can all cause extreme discomfort for other people around me and unease for myself. I just hope people offer a little room when I make unexplained errors. Just like everyone else in this world, we all have flaws that will show through at one time or another.

      And, Edie, your kind words and thoughts do help me navigate through these times of learning. Thank you for this.

      Tara

  7. wsquared77 said:

    What a wonderful post. Thank you so much for sharing your story. I especially love the title because that has been so much our experience with our son through the years, even before we knew of his prosopagnosia diagnosis. He looked fine, his grades were good, he didn’t act out, but yet he was startlingly “fight or flight response” anxious in certain types of situations. This even left us as his parents baffled at times, and often made for an uphill battle trying to get others to recognize his struggles. Thankfully, without even knowing what we were doing, his dad and I did act as the “friend” that you mentioned to help him navigate his world. I believe this has helped him along the way, but has also meant that he is much less willing to be away from us than another child his same age usually would be.

    Thanks so much for your blog. I am learning lots from it!

    • You have done the greatest thing any caretaker can do: Never stop searching for answers! I have no doubt your son will find his way as he grows. Now that you have a name for what creates his anxiety, you will find even more coping techniques you can all use. I wish you the best of luck. Write me any time you want. My email address is in the “about me” hyperlink at the top my page. Please, never hesitate to write if you need any extra thoughts.

      I wish you, your husband and especially your son the best of luck!

      Tara

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