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Posts from the ‘Disability and Other Myths’ Category

Music Bridging the Gap

“Love in any language, Straight from the heart, Pulls us all together, Never apart.”

And once we learn to speak it, “All the world will hear Love in any language Fluently spoken here”. Sandi Patty sung this song and it was authored by John Mays/Jon Mohr

Throughout my life, it has been music that has saved me from the insanity of life’s happenings.  Music has been a vital part of my day. It has calmed me, allowed me to express emotions that I could otherwise not readily connect with, and it has allowed me to create wonderful things.  There is one other wonderful thing about music: it is an equalizer.

My earliest memory of music is of my father playing the piano.  I grew up hearing Grieg, Rachmaninoff, Mendelsohn, and countless others.  Music was sometimes what I would drift off to sleep with. Music was also a chance for me to sing.  I couldn’t do many things as a toddler, but I could carry a tune. I was singing before I could talk or walk.  Because of my father’s music background, I was tested for absolute pitch, or perfect pitch, as it is more popularly known.  I don’t quite have that, but I’m not far off from it. Considering the fact that I also have hearing loss, this isn’t too shabby.  I’m proud of what I can do with music, and that I’m good enough to sing with a string quartet. It would be great to sing with an orchestra.  What a blast that would be!!!!

I’ve sung in Italian, German, Spanish and Latin.  Music is a way of universal communication. Music, when done well, can shine as an example in any language and the beauty that it contains.  I am discovering that there are beautiful recordings in the Dutch language. When I listen to them, the guttural Dutch sound becomes a thing of wonder.  When the singer sculpts the words well, there is an understanding that bridges the gap. Just like the “I love you” that is spoken in any language the meaning cannot be misconstrued.  So “love in any language” becomes “music in any language.”

Music is the one thing that anyone can do!!!  Think about it for a minute: You can teach someone to carry a tune and match the note.  But, you don’t have to teach a child to open their mouth and sing. Singing comes naturally.  Intelligence and physical ability are not factors here. Music is everyone’s gift of being heard.

Bridges to the heart.

Throughout my life there have been many bridges.  One of the most powerful of those bridges has been volunteerism.  During my life, I have been both a volunteer, and the person on the receiving end.  Both sides of the process are filled with positive feelings.

There are many ways of giving.  Some commit to careers of service to others.   Many people choose to give to an organization that represents something meaningful to them.

As I stop to think about the process that my “future guide dog” will have gone through, the first phase of that is the volunteer family who will take “my Eyelette” into their home and love and play with him, or her.  What a gift!!!! Taking the time and the love to raise up a playful puppy in a healthy manner so that it can become a healthy guide dog for someone else!!!!

There is someone here at the Loo Erf who came in as a volunteer and he has affected me greatly.  He loves what he does and it shows. The tricks and tips and encouragement that he has given me are gifts.  It is a treat to have a braille lesson or a Dutch session with him. Personally, I think he has given this place a piece of his heart over the last 10 years.

When I was in my 20’s I spent time doing an internship that involved those with mental illness.  I gave several hours per week to those who needed and in return I received a new view of life. They taught me to laugh in a new way.  They taught me understanding. I learned so much from each of them. I still think of them and wonder where they are now.

We used to watch one of the Animal rescue shows.  Many of the animals were depressed and beaten down, but with the love and help of volunteers, they became “cute animals” and we renamed the show “cute animals.”  Volunteers are great!!!! Volunteers change lives.

My Pitch.

Think about giving some of your time.  The rewards are phenomenal. The sacrifice is well worth what the recipient will return to you in love and appreciation.   Get out there on the web and Google up your loves, because somewhere out there someone needs you to give to them.

Thanks, But Not This Gift

Late Wednesday I asked Jon “if you could give me a gift..any gift what would it be?” I wasn’t ready for the reply.

He told me he’d give me a healthy body. He told me he would want to take away all my discomfort and give me health and I was stunned silent. Two days later and I’m still stunned.

I’ve had this petite, not-quit-a-gem of a body for 56 years now and while I don’t appreciate its lack of functionality at times I still love being petite. It is who I am. I love my blue eyes and my once-curly hair. I don’t like the PXE that has made life hard. No, I don’t like that at all.

I’ve made the comment before that if I could see normally I’d want to play tennis. That would be first on my list of items to do. That is just a thought and a desire, but when I think of things in terms of my entire life changing, I have cause to rethink. Doesn’t everyone want health?

About two weeks ago, my family found out my younger brother might be facing some serious heart surgery. He, like me this past year, had to come to terms with his own mortality. It changes you and causes you to rethink who you are and what you do with your life. Things that didn’t seem needful take on a new view. In this past year the things that really matter to me have changed.

As much as I would like health, I’m going to decline the gift. It isn’t that I’m not moved by the thought, it is that it would change some things. It makes me think of one of the most powerful “Generation” episodes of Star Trek and the lesson that it teaches.

In the episode Jean-Luc has yet another encounter with Q. He comes to understand that the lives we live are due to the choices we make. We walk the paths we walk because of what we either do, or fail to do. I may not like the hassles that my lack of a healthy functioning body brings to my life, but without it I lack the knowledge and power that its lessons have taught me.

Instead of pontificating on all the lessons I’ve learned (and I could do just that ) I’d like to ask you each some questions: Would you change your life? Would you alter it so radically that the lessons you have learned now would change? Who would you be if you weren’t this current “you”? How does thinking about this alternative you change who you are going forward? Why would you make the changes? What would your reasoning be?

The offer of Jon’s gift has made me look at myself and accept that I’m OK with the mess of my disability. I’m more accepting of it than I thought I was. I like me. I may not always be happy with life, but I like my life lessons and am glad I’ve had them to shape who I am.

I will return to the gift of health. It is a good thing to ponder and revisit because it has made me think about my life in new and better ways.

In asking myself the question, I found another gift. This gift is that I like being Gail. I like some things about being who I am with my own disabilities that I didn’t think I was happy with. Thanks, Jon.

Faces In The Light

This post is a project to see if I can describe what it is I see (and can’t see) clearly. Would you please let me know with a comment if I was successful?
Thank you. ***** The diagram for the eyeball is at the bottom.
Gail
When you look at a face, you most likely, see the entire face. The details are clear: eye and hair color, nose, and ears all stand out as a part of the person. You can tell who they are by how they appear to you. You magically memorize things about this person’s face so that the next time you see them you may recognize them. That tiny computer in your head does the job it is meant to do. You bring up their name and with it many other things regarding this person. You can say that you know this person. But, what if it doesn’t work in this manner? What if your brain, or more specifically, your eyes, can’t process this information normally?
What if when you see someone you can’t recall or even memorize the face. What if your software is not in working order? What do you do then? You are in the dark with this face even though there is plenty of light around the person.
When we are babies we begin developing facial recognition. Our brains slowly discard the skills we will not need. For instance humans need to see human faces vs. monkey faces. As a baby you are capable of viewing and distinguishing all faces and you learn that because you don’t see monkeys every day the brain can now discard higher levels of monkey software because it won’t be using it much. Knowing what monkeys look like is good enough. The brain has learned that it does need to focus on humans, so that is where the brain will focus development. Now,
the brain needs to understand many things about human faces so the brain develops these skills. By the time the person is a bouncy one-year-old the brain has a Doctorate in facial recognition. BUT, what if in the process of developing the brain there is damage and critical steps are not completed properly? This is what happens when there is a lack of visual development.
What doesn’t work?
From this blog you know that I was born with cataracts (I had no light perception due to the clouded lenses) and that on my first birthday I was operated on and given sight in my right eye. Six weeks later the left eye was also operated on. The surgeon did a beautiful job!!!! So, I was now a happy sighted one year old who is simply a bit behind developmentally.
After the surgery I was given glasses. At age 14, I began to wear contact lenses. At the present, I wear only one lens due to the fact that my right eye is not able to be helped by the lens. (The cornea is no longer the proper shape) While they could do some surgery it is a risk I am not willing to take. Surgery would put me at risk for bleeds in my retina, which could lead to blindness in that eye. So, back to childhood….

Because there was no vision during the first year of my life, several critical phases of development could not complete properly. Muscles in my eyes failed to learn to strengthen themselves and nystagmus (rapid eye movement) came about, I also did not develop full facial recognition during this time. In later years the PXE decided to contribute a bleed in the retina and lessen what vision I have. This is why I have only 12% of my vision left. The percentage is a far better description of what I really see. It isn’t about distance but rather about what I can really see in a comprehensive manner. So if you have 100% of your vision and can see something easily, chances are that most likely I’ll have to blow it up and make it BIG or stand closer to the object in order to see it. .
What works?
How do I see things and how do I function best?
When a visually impaired person enters a room they don’t really survey the room as you do. They look for seating. They do this because this is of great urgency for them. This doesn’t mean that they will get the best seat: they get a seat. After they have a seat they will then proceed to check the room out. There is a problem with this process and that is that the person might not yield the best seat for their needs. The best seat for me is a seat facing away from the window. With my back to the window there is no glare for me to deal with. This means that I can see lit faces instead of dark faces. The best room is also well-lit with both ceiling lighting and lights that shine upwards. The room should have no shadows. The number I use is a combined total of 1500 lux. The equation works out to 1250 from the ceiling and 250 upwards. Warm light is better than cool lighting. Those are the basics.
Seeing your face is important to me. I wish I could recognize you easily, but for me the process is just that: a process. For me to recognize you,I need to spend time with you. I’d say two or three hours will do. I need to have those hours over a period of time. Doing it all at once doesn’t get my brain to learn about you. As I study your face I acquaint myself with who you are, physically. After several hours, I am better able to recognize you.
If you cut your hair, change your hair color, gain or lose weight I may not know you at first. You will need to remind me who you are. Think of it as having to do a software update.
The question of using the voice arises and the answer to this is that I can only depend on the voice as much as I hear. So, I use a combination of things. Because I see better than I can hear (reliably) I use my vision to learn and understand and my hearing becomes the secondary sense involved.
I’ve shared a great deal of information with you. I suspect that many of you out there will be wondering what do I do with this. What am I supposed to do when I’m around you? I’ll answer that with this: A simple kindness goes a long way towards true understanding. You can make sure that I recognize you. That is a great beginning.


Dear Parental Units

Dear Parental Units,

It seems that I’m the recipient of an opening in the space-time continuum and being as I’m a very brainy baby I’m going to take advantage of it. I don’t know how long I’ll have to say all of this so here goes something!

I just popped out and I know you are so glad that the pregnancy is over, you are through labor and delivery, and that I have 10 fingers and 10 toes. My head looks normal and I’m breathing and crying. All is well, for now. Enjoy the next six weeks because after that you all are going to enter a world that you don’t know you are unprepared for. Good luck: we’re all going to need it.

Six weeks from now, Mom, you are going to decide to take me to the pediatrician because my eyes don’t look right. I’m not tracking stuff and you and Daddy are concerned. On that day, you are going to get a bucket of news you are not ready for. I’d have liked for both of you to go instead of just Mom. You see, if you both hear the news together it will be better that way. So many times mommies have to hear difficult news without daddies being present and that isn’t right. I can tell you that getting your kid diagnosed with disabilities is bad enough, but often it is the mother who hears it first, on her own. Even though the woman (yes, in 1959 you won the doctor jackpot and got a woman) is going to spend time with you and she is going to remind you that this is not your doing and that you had a very mild case of rubella and nature happens. She’s going to try to help you deal with it all in one day. I’ll tell you now that her good intentions won’t do the trick. Don’t feel bad. Doctors still don’t get it and in time I’ll come to have friends who are doctors and they’ll validate this fact. Talk about it and help others to go through what you have been through. Sharing will be good for you and others.

So, take me home and get that home nurse and learn and enjoy having me. Let me explore, and let me be the happy soul I am. Let me grow up in the loving secure environment you both want to provide for me.

I can feel that I’m getting older.

Now, growing up is tricky. You are going to want to shelter me from bullies, failure, and all things that go bump in the night. Unfortunately, you can’t. You are going to want to hide when I come home from school crying because of the bullies. I need you to put your arms around me and let me know that you love me and when I shed tears you cry with me so that I know it is OK and that you hurt with me. That would be the best!!! But the era you are raising me in will teach you differently and you will hide the pain you feel. I’ll grow up and gain insight into this and it will be alright.

While I’m on the subject of things that hurt: don’t trust care givers. I know that in the 1960’s you won’t think that your daughter can be harmed by any form of abuse. The disabled are hurt by angry people and sometimes well-intentioned do-gooders who should not be allowed to work anywhere near them. I’ll be hurt, but I’ll get through this as well. We are all three victims of having had this happen to me. You didn’t know, so don’t feel guilty over not knowing. When you do find out it will be because the time is right and I will heal from past pains.

I need to tell you that you began to do some good things for me in the late ’60’s and early 70’s. You need to pursue those things even more and give me the jump-start on my career planning and help me to see that I can reach my dreams. Just because I’m disabled doesn’t mean I can’t achieve what I want. I know my limits and I don’t need society putting false limits on me.

I’m feeling even older as I write this.

Dad, you and I are going to turn out to have passions in the same areas. Social injustice is something we will both come to understand. I’m glad that you will work with, and respect, women. I’m glad that you will be open to that.

Mom, you are going to wind up raising two daughters who have health issues. It is going to change our family. I’m glad you will have Joyce because she’ll be things I’m not. She’ll be easier to raise: trust me on this one. We will both cause you and Dad to grow beyond what you ever thought you’d have to do, but in the end it will be worth it.

As I grow up, I’m going to want to do it all by myself. I’m going to want to be just like the other kids. This is going to be hard on you, Mom, especially because you and Dad decided you’d stay at home with the kids while we were growing up. He won’t be home as much as you might like for him to be, but I know that you will tell him everything and he’ll be in the loop. But, back to the being like the other kids. This is something that many disabled kids feel so try to understand and let me do it myself unless I ask for help. Let me struggle some and then gently offer, even if I make a stink. I’ll understand when I’m older and all grown up.

You should put me into Girl Scouts. Give me outlets that will help me to make friends and to achieve goals. This would also help society learn that the disabled CAN participate. This is very important for girls!!!! This is something you won’t think of doing and I wish you would. I can tell you this because it is something you would think of if I had been born at a later time.

Help me discover who I am as a young girl so that I can grow to be a strong woman. Putting me in dance and swimming lessons is going to help me to become more coordinated. It is also going to fill my intense need for being in and near the water. I’ll learn from these and even though the dance will be hard, it will plant some seeds.

I’m going to have insight into what I need. Listen to me because others won’t, and as you support me you can know that I appreciate the fact that you value who I am. I’m going to raise a wee bit of hell along the way and you two won’t understand it, but you will accept it and love me.

When I reach my teen years I’m going to struggle with who I am becoming as a woman. Part of this is normal for all teenagers, but there are special issues that are associated with disability. How I wish someone would author a book about this stuff so you both could read it! Unfortunately, there won’t be a book. Maybe in time I’ll write that book or maybe someone will beat me to it.

Early on in life you are going to turn me on to books and I’ll devour them. I thank you now for this gift. Reading and learning will be one of my great joys. It will allow me to stand equal with anyone.

Oh, something is happening.

Mom and Dad, I’m going to thank you, now, for all the time you will give to me. Driving me when I can’t drive, reading to me when my eyes just can’t see straight, and staying with me when I freak out because the depth of things is hard for me to see. The times when you have held my hand and helped me navigate going down to rivers, and other hard-to-get places, will be appreciated. I’m going to thank you for trying to keep the family in “normal” mode and doing things that my siblings enjoy. They will need that

Night Walk/Maira

Night Walk and Maira

I guess you could call today “Maira Eve” and as I have been thinking about my life and events that lead to this very day I thought I’d update the original posting. This post tells of how I came to understand that I needed to have a dog.

For the past four years I have referred to Maira as “Eyelette” as all things living need a name. I’ve even had a tiny transitional object to pull out of a drawer or sit upon a desktop when things seemed grim. Right now it just seems surreal. This REALLY is happening!!

It has been a long journey and tomorrow at 0930 I will be at KNGF to begin my two-week intensive work of becoming a partner with Maira. What is in store for me? I don’t fully understand at this moment. I am packing my bag and will find out in the morning. So now for those who will walk with me and remember that night of several years past…..

Night Walking

Late this last November I found myself waiting for my husband; we were to meet at the shopping area. My iPhone went dead and I was scared. It was dark and windy and I knew I’d have trouble walking anywhere alone. I almost left the stairs, where I was sitting, in hopes that he’d look for me there, to go look for our car. I should have known that the car was there…where it always was. But, fear kept me on the stairs. Had I left, I’d have found the car and, safety. I was to discover that I had been doing a dangerous dance on a rooftop with a skylight.

I finally decided to walk to get to the bus. I was scared. The thing about being half blind (or so I thought) is that bumps in the sidewalk aren’t your friends. Bumps can really hurt you. SO I walked in the street …but then the streets here in Europe can be bumpy as well. The streets everywhere are bumpy. It just doesn’t pay to try to stay safe or sane when you can’t see the road. I was walking SCARED. In my mind I was dancing on a skylight and trying to calm myself and telling myself that I would be just fine. I was scared because about 10 years ago some nut with night blindness hit me and I fractured my L1. I was scared for some good reasons. In feeling the fear I realized that my vision was far worse than I had ever admitted to myself.

Normally husband is my “Seeing Eye Hubby” and I depend upon him. But hubby was in some unknown place and I was scared. I was all alone and there was no one to help guide me. I made it to the bus, which was a good ten minutes walk. Then I had to face the walk home; which in many ways was even more terrifying. You know you are severely low-vision when you have a dark street with a dim light and you think that you know the road but don’t know where the bumps are. All at once I realized that I didn’t know the road at all. I had to make a decision: walk fast or walk slow? I just walked. All I wanted was a phone and a warm house. More than that though: I didn’t want to fall on my face.

After what seemed like a horrible forever I could see the house and then the car and the door. I crashed through the metaphorical skylight. The tears and mixed emotions exploded within a safe house. I was grateful that I had made it home. Jon, who was upset and concerned, came to me. At that moment I realized that I would never feel as safe as I once had before. That crash was just the first.

Life can be a terrifying dance routine with a choreographer gone mad. That is when you slam through the skylight. This is when your soul sinks and you discover that you are frail. Then, and only then, can you realize that you have been dancing on a roof top with a skylight.

In the next days I began the search for the “doggie” school. After a week of looking I knew that I needed to approach KNGF. I made the call. The darkness has served as a reminder that I am not safe. The naive woman who was dancing on a skylight is no more.

Today

Jon is downstairs cooking dinner and I am wondering what will unfold next. As I look back over the past few years it has been quite a ride. The Loo Erf, the beginnings of a new private practice. It will be a new dawn in the morning. I can’t wait!!!!

A Sad Update

I am going to post this to my blog because it will reach more people faster.

On Monday, 23 June, I went off to the KNGF with high hopes. Maira is a great dog, but she will not be mine. On Thursday, the 26th, I was admitted to the UMC-Utrecht neurology unit. The short story is that after all of the time I spent planning, I can’t have a dog.

I am totally bummed and depressed and feel like a piece of my world got yanked out of my life. It did. But, I will move on. For now, it is important that I accept and take the time to cry tears of sadness.

I am thankful for some great doctors. I am thankful that I am alive, and that with care, I can stay that way. I will say more later. For now I am just trying to enjoy my first complete day home from “the big house” as Jon and I call it.

With much thanks for support,

Gail