A Valuable, but Unusable Gift

It’s four thirty on a Sunday morning. I’m awakened from a sound sleep, and I’m not sure why. I don’t need to be awake for a couple more hours, but, since I am quite awake, I reach over to pick up my cell phone on the night table.

The notifications pop up on the screen. I notice that I’ve missed a call at 3:30 AM. Who’s calling me at 3:30 am?

I tap in to the message. “Rusty, my name is Sarah. You don’t know me, but I’m from your church. I’m calling you because of an urgent situation. My daughter died about eight hours ago. We’re donating her corneas and I thought of you.”

I was stunned. By this time my wife was awake and I said, “I need to make a call.”

I explained the situation.

“I know her.” She said. “She has the cute little girl who runs around during church; she doesn’t have a shy bone in her body.”

We were both shaken.

The bottom line is that I could not use the gift I was so generously being offered because I have retinitis pigmentosa. I needed to inform mom. I left a message and laid back down. But thoughts of the little one and her sweet and thoughtful mother made our sleep restless until we needed to get up for real.

This event brings up a complicated cocktail of thoughts. Besides being saddened by the loss of life and potential, I was honored and blessed by the thought that this grieving mother offered me the gift of sight. In her loss, she was prepared to give me such a valuable gift. I also felt sad in a way that I had to turn it down, but hopeful that someone else might benefit. The next morning I called to explain why, and to thank mom and offer our condolences.

It makes me think about the idea that blindness and eye conditions are misunderstood. So many times as “disabled” folks we are offered kindnesses by well meaning people who are not really aware of what we need, if anything.

Have you or someone you know been offered a gift, a service, some kindness that you don’t need, or maybe can’t even use?

Share your thoughts.

Handiwhat? ... around the house

A few years ago, after I had bought my first condo, and decorated it myself, two friends, a couple, offered to help me spruce it up a bit. This was not a pair of well-meaning sighted people giving the blind guy a handout. The husband is blind, and his wife sighted. Their real motive was to make my home more attractive for when I invited female guests over.

Anyway, one of the projects was to replace an ugly light FIXTURE hanging over the dining table. I had always been afraid of anything having to do with electricity. My friend Alex demystified the entire thing for me. With their guidance, and Jana’s eyes to let us know which wire was white and which was black, I changed my own light!

This was the first of many home improvement projects that I have accomplished, mostly on my own, in my own home. Besides having installed many light fixtures since then, I have also replaced water faucets and a garbage disposer, AND installed a dishwasher in our kitchen, replaced a wall switch with a dimmer, and an exhaust fan in a bathroom.

I doubt that many, if any, sighted people would have offered to teach me to wire in a new light fixture. They would have been unsure of my capabilities, fearing what they fear themselves, closing their eyes and playing with live wires. Today it’s easy to go on line and read a DIY blog or check out a Youtube video to understand how to complete a project safely, and decide if it is something I feel I am capable of. The man on Youtube won’t judge my capabilities based on his own fears. He won’t even know that he is assisting a blind person, and he won’t be afraid either.

Blindness is not disabling. Any blind person with his or her other senses can do these little odd jobs and many more. It is true that for some of these tasks I have succeeded with the help of others who have shared bits of wisdom, and my wife is the one who now tells me which wire is black. But there are tools available which make it possible for an unassisted blind person to tell colors, and test electrical connections.

Is the work always perfect? No, but it’s functional and I did it, and my wife and I have worked together to accomplish something. That’s more valuable than paying an outsider to do something I can do myself.

That day when my friend Alex and Jana taught me to replace the light fixture in my house, they did much more than help me impress the ladies. They gave me the confidence to do many jobs for myself and, eventually impress with my confidence, not my home decor.

How do blind people dream?

One of the most common questions asked of a blind person is, "what are your dreams like?"

I canot answer for all blind people, but for me, and what I've heard other blind folks say is that they experience dreams like they experience waking life.

when I'm awake I have light perception. I can see light around me, coming through windows and doors and from light fixtures, my computer screen ETC.

So, when I'm dreaming, I see light coming from the usual sources as they appear in my dreams. I also hear the voices, the echos and other appropriate sounds and spacial clews just as if I were awake.

I still have crazy dreams, flying, being in strange incongruous situations. I find myself having deep conversations with unidentifiable people in weird places, but I experience this the same way i would if I were awake.

Grieving Blindness: Blindness sucks! 5 stages of "dealing with it"

I’ve been asked whether I ever feel as though I’m missing out on something because I cannot see. In short, yes. And there’s little I can do about it. So then what?

Many blind folks will try and put a brave face on, and I usually do too. After all, what use is there in dwelling on the negatives? To be sure there are negatives.

I cannot see my wife’s facial expressions or reactions. Can I figure out what she’s thinking or expressing? Yes, by asking or listening, but I miss out on seeing emotion sculpt her face. Not seeing faces sometimes makes it difficult to interact with others.

I cannot see a sunset paint the sky and silhouette a range of mountains. I can hike through those same mountains, but I miss out on the majesty and subtlety of the colors drenching the peaks.

I cannot see an iPad. Yes, I can use an iPad, but, many of my musician friends use their iPads on stage to read lyrics and chords and perform unfamiliar music. For that matter, I can’t sight-read any music. I miss out! Yes, of course I can play music and it is one of my greatest joys and liberations, but I cannot read and simultaneously play a song.

So, we’ve got that out in the open. WE MISS OUT ……. on certain things. So what then?

In many minds, sometimes including my own, the most important thing about getting over it is problem solving. But I want to spend a little time on mourning.

Loss of sight, while a perfectly surmountable condition, is difficult. It’s ok, and, I believe, healthy, to grieve blindness.

You may have heard of the five stages of grief: denial, anger, bargaining, depression and acceptance. These stages are usually associated with dealing with death. But they can help us understand and learn to live with loss, in this case, the loss or absence of sight.

Denial is, in my mind, refusing to acknowledge blindness. When I was maybe six years old, doctors prescribed a set of lenses for me. This was probably to keep me from poking my fingers in to my eyes, but, I still remember family and others asking me if I could see better. I couldn’t, and I didn’t really know why, or even how to answer the question. There was likely no curing my Retinitis Pigmentosa, but some were in denial. As I grew, I refused mobility training for a time; later, I minimized the use of a white cane. In retrospect, this may have been a foolish denial on my part.

I still feel anger as I experience moments of inability to surmount a problem my blindness creates. I hate being stranded, whether it’s a late Dial-a-ride bus, or train stoppage, the inability to use a piece of technology, or the stupid way I’m treated by some unthinking sighted person. I even feel anger at myself when I spill something or trip over something left in the middle of the floor, even if by me. Anger is a real part of coping with blindness. Praying and deep breathing are some of my favorite coping strategies in these situations.

I cannot think of a time when bargaining was a part of my experience with my inability to see, but from my interactions with parents of blind children, I can imagine that in the darkest moments they must have had desperate conversations with God, or others in power to try and make things better. This too is perfectly normal.

Though I have not had serious bouts of depression, I have had moments when I have felt deeply empty, as though the surface attempts I make at coping with blindness are no match for the loss. I’ve felt as if few people can really understand and accept me and acknowledge my potential. I’ve often felt that disability counseling should be an available option for these times. As I understand it, this too is a perfectly normal response to a great loss. We are not sick, just dealing with something difficult.

Acceptance is where we are headed. This stage is about accepting the reality in which we live. This doesn’t mean that blindness is great! Few of us would choose it given the option. But it’s where we find ourselves. Now we must continually learn to live in a world where sight is unavailable to us. But, many other things are.

Our self-confidence, knowledge, education, personality, support network, and many other tools are the way we succeed.

Do I miss out? Yes, on some things, and it is important to acknowledge that. It is healthy to see it for what it is and move on from there to make more of it.

Reference: http://grief.com/the-five-stages-of-grief/

Not So Gentle Reminders

This morning, as I walked in to the kitchen looking for a mid-morning snack, I smelled the unmistakably sweet fragrance of fresh cut roses. I thought, “where is that coming from?” At first, I thought I must be mistaken. “Maybe one of the kids left an open container of some sweet drink out.” But, as I followed my nose to the counter, I found, nestled way back from the edge, a little glass vase containing three roses.

“Hey bebe,” I usually call my wife on my lunch break. “I found the roses on the counter.”

“I tried to put them somewhere that you wouldn’t nock them over.”

“Probably a good idea.”

We both laughed, but I knew what she meant. Slowly we are learning to live in each other’s space.

We’ve had our share of reminders that I can’t see a glass that someone else places on the counter where I’m not expecting it. Heck, sometimes I nock things over that I’ve put there and forgotten about.

It is at these times that I am rudely reminded that I cannot see.  There are other times, to be sure, but spills, a wasted drink, a broken jar, these are little occasional reminders that, try as I might to carefully use my other senses, a gentle touch, and my memory to compensate for not being able to see my surroundings, I am not perfect, and I am not sighted.

It is difficult to explain how surprising and rude these episodes can feel. I’m pretty good at this blind thing. I have a very gentle touch. I can play, and occasionally win at Jenga. I’m adept at reaching out, and pretty nearly placing my hand on a doorknob. I know how to reach across a table, at just the right height to find a glass and not nock it over. I’ve practiced the skills to help others forget. I occasionally get the backhanded complement, “you don’t look blind.” It makes me mad, but also some how feels good.

So, when I make a mess, I feel like I’ve failed. I feel ashamed. Sometimes, if I’m not careful, I’m tempted to blame the person who put something where I wasn’t expecting it, even if it is me.

I am continually working on not letting those experiences bother me, just as my wife thinks of putting the roses where I might not nock them over.

Lessons in parenting a blind child from two poorly educated children of migrant farm workers

My mother graduated from high school in Calexico, a small US town on the border between California and Mexico. My father had a sixth grade education which he probably received in Tijuana Mexico. They met because their families attended the same church in Santa Ana California. Both of them told similar stories of traveling between Northern and Southern California chasing fruit harvests as children.

After giving birth to my older sister, my mother seemed to have trouble conceiving again, but they both wanted another child. I imagine that someone must have suggested that they become foster parents, and so, in about November of 1969, they were given custody to one blind baby they called Rusty. After a year of fostering me, they adopted me. They chose to keep the blind child.

I mention that they were poorly educated because I want to point out that they didn’t know, or do anything special to raise me. They were not up to date on the latest techniques for sensory enrichment. They didn’t know anything about advocating for me. But they loved me.

Yes, they took advantage of every opportunity the foster system and the educational system offered, but aside from that:

My father and I spent time in the garage. He taught me how to use a crescent wrench as he worked on the car. He taught me how to use a hammer as he worked around the house. He taught me how to tie a tie as we got ready for church. As I got older, I spent time around his carpentry shop, and though he never was bold enough to teach me how to properly use powered saws, he gave me small jobs boxing furniture, and I would go with him to make deliveries, helping to carry beds and dressers in to homes.

 
My mother worried. But, what’s important about that is that she didn’t restrict me from learning about my surroundings. Maybe she knew something, intrinsically, about “LRE” least restrictive environment? She told stories about coming home and finding that I had climbed on to the roof of our house. I would run, at high speed, through the hedge of rose bushes between our yard and the neighbor’s. More than a few times she mopped the blood away and took me to have stitches after I ran in to a sharp table, or injured myself in some other way. But, she knew better than to lock me away where I couldn’t hurt myself.

Someone might see this as irresponsible parenting. I believe, however, that it was an act of love to teach me, their blind child, to take chances, to reach in to the unknown, to embrace the world around me even if I couldn’t see the  danger in it.

INTRODUCTION

As a blind person, having benefited from the kindnesses of many sighted folks, I believe that the most I can do is help others as I have been helped. So, that's the purpose of this blog, to help others, as well as myself, navigate the intersection between the sighted and the blind worlds.

I was born blind; grew up in “the system;” and have led a successful life, with gainful employment, a graduate level education, and a fruitful family life.

I hope the articles here will be inspiring, educational, and informative for many. I hope they will also invite discussion and interaction. I'm looking forward to hearing from you.

Often it is difficult to see beyond one's own understanding to know what others do not know. If you could sit for a while and have coffee or tea with someone, like me, what would you say? What would you ask??