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Posts from the ‘Living With Disability’ Category

Gratitude for Tech

In early November, on a lazy Friday afternoon at around 3:00 PM, my tech world blew up. The power went out in our neighborhood, and with it, my computer died. While I knew it might be repairable, I also knew this was not the first round with this issue. Getting it to the repair place would be one thing; the other thing was whether I wanted to spend the dough to have it blow up yet a third time. The next day I ordered a new machine. That machine arrived three weeks later. In the meantime, I was on my iPad, and had to deal with eye strain. 

This time I began to notice that I depend on my tech, and I need to use my Mac for work, and to do some basic tasks. I was in panic and upset mode. I think I drove a few people to collectively shaking their heads.

Technology is a gift, and a curse. As a society we’ve surrendered ourselves to machines with screens, social media, and a connected lifestyle. I didn’t grow up this way. As a kid I had to ride the bus to the library, have the librarian locate the proper microfiche, and then copy information. Copy, paste, and cut weren’t options. Research, advertising, and social connection were so different! Google makes our lives simpler. Yet, here I am typing this tech lament. Why? 

Over the past few months, I’ve ranted about issues surrounding disability, and how many don’t really get how we roll. What works for you may be a far cry from what will work for us. What works for one disabled soul will not work for another. This time it isn’t about cutting us slack: it’s about understanding our panic and why the loss of tech is different for us. For us, it can become a crisis.  

I’ve been thinking about this for some time now, and it stems back to childhood for some of us. It’s about parenting and beyond. 

There was a time in our history when a child was born, and the doctor sent the baby home with the parents to let them discover that “something isn’t quite right with our newborn child.” I was lucky because my parents understood what they were and weren’t seeing at six weeks old. In 2022 we understand what disability looks like at birth, and we’re aware of what it might look like in early childhood. This translates to being able to provide resources that will enable a child to succeed in school and in life at an early age. It also means that if tech is to be part of that process it can be delivered to them. Individual Education Plans (IEPs) can be structured for the the child to include needed assistance. (OK, if and when the system works well.) Providing reliable, accurate information to both children and parents is a huge portion of the process.

There is another part of the issue that isn’t tech, and it affects us deeply. It is about having accurate information for lifelong interaction. That information comes from two sources: professionals and parents.  

If someone is born with the disability, they are dependent on parents to lay groundwork so that as adults they understand their situation. If they become disabled later in life, doctors and other professionals need to companion with them to enable the disabled person to gain a complete understanding of what is going on in their mind and body.

The knowledge we have now, versus what the medical profession could have told me in 1970 when I was transiting the education system, has changed.  

I’m not here to talk about teachers. They are the frontline. I will say that teachers are there to teach. A checked-in parent can assist the teacher to ensure that their child is given the best possible shot at succeeding in life beyond the classroom walls. 

How do we help? I will spend the time here talking about skills. 

Do children have the study skills they need to compete in the real world? Are they given the chance to work to their full potential? For instance: a child with a learning disability may need to learn in a different manner than a child that doesn’t have that disability. The learning-disabled child may be very gifted, and need the stimulation of an Advanced Placement (AP) class in high school. Are they given that chance? Learning disability means that a person needs to get information into their head in a different manner than how they may be taught. Tech comes into its own here. The ability to hear the text read, to talk it out, and to even feel something might be options here. 

Processing disorders are common, and once it is understood that a student needs to think things through differently, it changes the game. 

Tech can be a gift. We can level the playing field with accessibility features that count. Audible, Kindle, Book Share, and other options open up the world to the visually impaired and people who deal with a variety of processing and learning issues. Now children who might have been told that obtaining an education beyond the basics of K-12 find themselves applying to graduate programs!  

What is understood now wasn’t understood when I was born. Back then my options were: learn to type and/or learn to read braille. Typing was the logical choice. Was I viewed as a higher education candidate? No, not as a child. As an adult that became possible. As an undergrad the Americans with Disabilities Act (ADA) paved the way. I had readers that enabled me to consume volumes of information. They had eyes and could point out things I couldn’t see. It was the tech that put me on the same level as everyone else. The tech didn’t come about until my grad school days. Now, I can’t function without it. I am back at the crisis situation, and what it did to me.  

I think that this piece is more of a post about being thankful for what I have as someone with very low vision. While I can see a face on Zoom, hear the distress in a person’s voice, and understand that tears are coming, I couldn’t do it without all this tech. 

I did have a tech crisis, but today I’m thankful that I have tech at the ready, and that I can move forward with a more appreciative heart.

The Burden

The disabled carry so much inside. On a daily basis we are challenged with what we let people know about our lives and our needs. Is it a good day or a bad day? Do we need to ask for help, and if so, how much of that help might be robbing us of our dignity? You may be thinking that we need to get over it. If you aren’t in our shoes, please think twice about that remark.

I like to think of myself as independent, though as I’ve lost more of my vision, I’ve had to ask for more assistance. I try to do as much as I can, and I’m noticing that the abled world is making it more difficult to do so. It adds to my daily burden. 

At first, I was going to write a regular post. Sitting here, I’m going to do this differently. Here it is: 

What I Do

As I 

wake, I notice

My legs

And

Scan the rest of my body.

I’m rested.

I move from the bed realizing that I can walk when others can’t do this.

I engage in morning listening to a book because

I can no longer read print easily. 

And,

I give thanks that I still can hear.

Today should be a good day. 

I think of those I know in wheelchairs 

or 

struggling to walk this day.

I hold them in my heart and hope that they will have the help they need to survive

Another day.

My mind travels to those who must have assistance in all things.

We don’t think about that much unless we’re directly affected by someone in that situation, and

I hope that caretakers will treat them with dignity on this day.

I leave the house to run errands

And

The sun shines in my eyes.

Even with sunglasses 

I strain to make sense of the path that

Is covered by foliage.

It is beautiful and crunchy and 

I love it.

But

I can’t make sense of the path with my cane.

How would I explain my reality? 

I try.

But

It is so different from yours.

You can’t really understand 

This life of mine.

Then I must explain to the abled that 

I can work, 

because they can’t imagine me doing what I do.

Should I do nothing all day

When I can do something I love? 

More of a burden

That I haven’t created.

I feel: 

Judged,

Enraged,

Worn out,

Like screaming!

I want to cry.

To protest.

To yell at people.

But

WHY? 

The disabled person’s greatest burden 

Is

That

We get lost in the shuffle 

And

Are not seen when we need to be seen.

Dear Helpful Soul

Dear helpful soul,

I realize that when you see me at a street crossing, you want to take my arm, tell me it is clear to cross, or even help me to cross the street. Your kindness, while well meaning, is not appreciated. I’ll explain why this isn’t helpful, or needed.

I’ve been living with disability my entire life. For many within the disabled community, this has been our situation. For some who are disabled because of illness or injury, this is not the situation. Their journey into disability might be more traumatic. They may slowly lose function in an area of their body, wake up one morning to the horror of lost capacity, or find themselves in a hospital bed with a missing limb. Many of us, if not all of us, within the disabled community deal with trauma surrounding the disability, and some must cope with ongoing trauma due to a gradual loss of even more function. Imagine someone with Usher Syndrome, who faces this on a daily basis. When sight or hearing can disappear, or you watch as you see less each day, or can’t tell what is gone until there is a radical difference, it is traumatizing.

Trauma may look different for the disabled. Please, ask and listen to understand. Someone may seem to be reacting abnormally when it is normal for their circumstances. When someone lives with ongoing events that are traumatic, and treatment for the trauma doesn’t completely solve the problem, cut them some slack. They may need it.

In most of the above situations, the journey of learning to live again may take a person to a rehab center. My journey into a rehab center began with the realization that I’d lost more vision and couldn’t see as I once had been able to see. I was down to twelve percent of my vision. For me, rehab was about learning better ways of doing things, using less of my vision, and confronting myself in a new way. I’d spent most of my life trying to fit into mainstream when I didn’t fit into a mainstreamed situation. I had to come to an understanding that now, more than ever, I had to embrace new ways of doing most things. When I think of leaving my home without my cane, I cringe and know I’m not safe without it.

Why do I need a cane? At first, I thought the need for the white cane was to enable me to navigate tricky spaces. I understood that I needed the help at night, but why did I need it in daylight? The longer I used the cane, the more I became aware of a few things. The cane let me sense areas to stay away from, such as sand or gravel. Both sand and gravel do not allow me to feel what I need to feel underfoot. I need to avoid both sand and gravel because I could slip and fall. The same scenario goes for ice and snow.

The cane also serves as a warning to others that I’m not going to see you clearly. I may not see you at all because you are out of my field of vision. People need to be prepared to take evasive action to get out of my way! This brings me to my first gripe: anyone on their phone and not tuned into their environment. Do you want me to collide with you? No, you don’t. Prevent this by walking with 100 percent of your attention on the task of navigating the space you are presently in. Having had several close calls with people who have been inattentive to their environments, I know it would be appreciated by so many. We don’t want to injure you or become injured by you. While you may not be driving, you are navigating spaces, some of which are very crowded. Please look out for oncoming people because if you don’t, someone might say something like “Watch where you’re going!” to you. They’re correct in saying this to you! Your phone can wait, and if it can’t, then move to a safe space to focus on what you need to do.

If you feel I’m being harsh, I’m attempting to protect myself in an environment that isn’t always friendly to me because I can’t see everything.   

Offering Assistance

Here’s some handy advice on assisting those with visual disabilities. You’re at a street crossing where there is no signal. You can see that the traffic is nonstop (the visually impaired person may be using their hearing to know when to cross). You also see that there are gaps that would be difficult for the disabled person, even though you could make it to the other side rapidly. You could make the offer of assistance in this way: “Wow, this traffic isn’t going to slow to let you cross easily. Would it be helpful to you if I assisted you to make a faster crossing to where we need to get?” If they say yes to this question, ask them how they want you to walk with them. This approach places the disabled person in the position of accepting or declining, and it comes with a reason for the offer. It is good help that may be very much accepted and causes us to accept the offer because it isn’t a rescue, allowing us to remain dignified—and that is a win for everyone! If we’re at a signal with a walk feature, we don’t need your help.

Speech and Hearing

Imagine not being able to hear clearly. When you can’t hear clearly enough to distinguish a D from a T or and S from an F, or other consonants and vowels, the life of a hearing-impaired person becomes stressful. 

Imagine trying to spell words that you can’t hear properly. Imagine not being able to pronounce those words properly. Add the challenge of uncertainty when you’re not sure if the word you heard spoken was “who” or “shoe.” The conversation becomes draining, confusing, and if you’re in a crowded room, it can become difficult. Social situations can become a challenge. For those with a hearing loss, the issue may be about isolating as best one can. 

While at the rehab center, those who dealt with the added hearing loss gave voice to the difficulty of hearing in the crowded dining area. I spoke with staff about not being able to enjoy the mealtime, and the need to engage in conversation at the table. No one had spoken up about this issue before. I was asked for solutions. First, I was isolated. That didn’t work. I didn’t want to eat alone. The next step was to ask others in this situation if they were experiencing this. “Yes, I am!” This was the common response. The next step was to reserve a table for us. This table was on the edge of the dining area. Nope, that didn’t work. Then they put us on the other side of the space. They were hoping the distance would solve the problem. Distance didn’t work as the noise trickled into our space, and it was difficult to filter it out. When I left, they were still working on the situation.

I’m faced with the fact that I need to semi-isolate in social situations or avoid them altogether. I’ve tried it both ways, and enclosed social situations with heavy noise levels are a pass for me.

I’ve been in The Netherlands for over twenty years now. I’ve tried to learn to speak and hear Dutch. It has been a challenge to learn a second language with a hearing loss. For the most part I try my best to converse in Dutch, and for the most part people are polite. Then there are the ones that judge and condemn. I’m told it is my fault that I can’t speak this language fluently at this point in my residency. The people who respond to me negatively are few in number, and to them all I can say is that given my situation, I do my best. Don’t judge until you understand that hearing is my challenge.

So, helpful soul, please listen for understanding. Understand that I know what I need, and above all treat me, and my disabled brothers and sisters, with respect. We’re having to face this every time we step out of our front doors. Cut us some slack, please.

Leaving the Safe Space: Part 1 of the Holiday Journey

On August 31st I boarded a flight that took me to Wales. I’d be there for three weeks. What I didn’t expect was that I’d get an education on my disability. I observed myself in ways that I hadn’t done in years, and I discovered that environments can be illusions. It was a great holiday and learning experience. 

Before Jon’s death, I had created a safe environment for myself in this home. I’d forgotten how hard I worked to accomplish the deed. Jon had his space, and all other spaces were “Gail friendly.” After his death, I put the final touch on this place. The final touch was doing the front yard, to make it safe for me to be in. It took years, and careful thinking, to do it right. I needed to look inside of myself and ask, “What is and isn’t safe about this? What do I need to work in my home?” I realized that I needed to order new office and bedroom blinds, lay better flooring, and move things around in the kitchen. I reworked where furniture was placed in the living room. This home has become so safe that I haven’t wanted to notice its safety, and I became oblivious to what I had created. I realize now that I didn’t want to leave my safe haven. Now, I will leave more often because of what I learned. I need to get out, get away, and return refreshed. Yes, I needed this holiday, and I needed to learn some things about myself.

There is a process of becoming reconciled with one’s own disability. When we’re born with it, we adjust slowly. It feels normal to us. As children we naturally think that the world may be the same for others. I thought, at first, that how I saw was normal. Then I matured and found out that while I saw less than others, my vision didn’t work the same way. My seeing was radically different. Talk about a shocker! An example of normal versus abnormal would be like going into a functional home and finding out that not all families fight all the time. For a kid who comes from an abusive situation, this is a great deal to process, and then to attempt to unscramble on their own. My vision issues were present from the beginning; as such, my parents normalized things. From a young age I had to deal with what might be considered an adult issue—I had to figure it out. No one thought to help me make sense of it because I didn’t know, at first, what I should be asking.

I’ve been sighted since I was a one-year-old. My vision, what I have of it, is what I have. It’s my normal. Lack of vision didn’t slow me down: I found constructive ways to make things happen.

That was the way it was—until it changed. It changed for me one cold November evening when I engaged in some Night Walking. That night the world became unsafe for me, and I discovered I’d lost vision. That night led me to the ophthalmologist, realizing I might need a guide dog named Maira. It would also lead me to a place called Loo Erf, and fifteen months of rehab with the help of Koninklijk Visio. While the Loo Erf was a lesson in adjusting and confronting my vision once again, it forced me into the realization that I had lost more vision due to the PXE I lived with (Thanks, but Not This Gift). Looking back, I thought I’d done all the work. I was wrong. There is always more to discover!

One of the issues that I’ve had to deal with, and I’m not alone in this, is that I need to control the environment. I need good lighting, the best seating I can get in any room, a good hearing situation, and spaces that allow me to function as normally as possible. I’m not a control freak, but I need to see and hear it all. This also came up at the Loo Erf with my mentor, who thought I was being controlling. He consulted with another mentor who worked with visual and hearing issues, who informed him that I wasn’t controlling, but rather I was doing what I needed to do to gain environmental control in order to maximize the best situation for myself.  The holiday was a lesson in gratitude for my environment, and also a lesson in what I can’t do by myself. YIKES!!! I discovered a list of “can’t-do-it-alone items.”

I can’t eat in poorly lit places anymore; I can’t walk and explore new places without assistance; it is harder to adapt to new places rapidly. While I can navigate a new location by creating a map in my head, I may not see all of the dangers without a sighted person to alert me to them and prepare for them. And so it was that “Myrtle Mae” (my cane) and I had a grand time in Wales, and I had sighted people with me the entire holiday. And yet, I still silently freaked out when the new space came up. It was a cross between wanting the adventure of it all and freaking out that in order to have the adventure of it all, I had to do new places that were not safe or familiar. It could have, but didn’t, traumatize me. I know how to deal with such things now.

My cottage mate, Sara, was a gem. She sacrificed exploration to allow me my limited abilities. On Saturday, while I crashed, she went out exploring. I’m glad she did. Grace and Ken were loving, kind and gracious, and they took me to Joe’s Ice Cream Parlour. Claire was her wonderful self; we talked and giggled and learned from each other. (Thanks for the taco run.) Sue and Paul were delightful. None of them made me feel ashamed, awkward, or incapable. If I needed “eyes,” they became “eyes.” Unpacking and repacking is never easy for me. Taking the suitcase down and setting it up again was not fun. Everyone was stellar during the time I was slowly coming to terms with a reality I wouldn’t connect with until I walked through my front door. The reality: my home is what I need to have in order to make things work for me visually. I’ll leave because returning will reinforce some good things. I’ll leave home because I need the time away from my home with a holiday.

Looking back, I realize that, along with the cough from hell, I was dealing with a vague uncertainty that hit me each time I walked outside, had to learn a new place, or navigate something else that was new. Myrtle Mae and I walked, but I was never alone. The fact is that I only have 12% of my vision left, and that isn’t a great deal of vision. It’s enough to consume tacos and to do the things I did. I’ve returned home to a Gail-friendly home. It is good. 

I’m still in shock over what I learned, and know that my reality is far different from the safety of this home. It is unsettling. It is real and what I and so many other disabled people face when we leave safe environments.

The Hitch: Part 2

Is preparing to go on holiday always a hassle? I got all the crazy put into place and found another crazy but not-so-crazy something waiting to greet me: my calendar! I think I need to travel more often. It could serve to keep me on my toes.

The above sentiment is healthy, and yet, I don’t like to travel due to what I wrote about in the first post; here I am poised to do this again. I know I’ll love it once I’m there; it’s the getting-there part that is annoying me. It’s also the fact that I’m self-employed, and the secretary/boss has to make sure all things are buttoned up before going. The hitch? People with low vision don’t do things fast; we do them slowly.

I can listen to stuff on audio that is at a faster speed than you might think possible. It takes time to learn to do it. When it comes to seeing, I look slowly to make sure I don’t see it wrong. So, clearing my schedule takes more time. Everything does. I wish it were not so.

The most frustrating thing I deal with is the “abled” who get bugged because I’m not doing it fast enough. Do your work, people! I am not your problem. Your inability to exercise patience with me is your issue, not mine. My independence is not up for grabs. Is yours?

Maybe the biggest hitch in our lives is people who aren’t willing to allow those of us with lesser physical abilities the opportunity to create our own ways of independent functioning. Those of us who have done our work know our limits. We ask for help when needed. The chances are high that in therapy, a rehab center, or somewhere else, we’ve had to come to terms with hard realities that haven’t broken us. If they did break us, it was only until we scraped ourselves off the emotional floor and got up again, knowing we could rebuild ourselves. We’re secure in what we need and don’t need. We don’t need others trying to feel comfortable for their own sake.

I spent fifteen months in a vision rehab center, learning how to do new things independently, without the use of my eyes. The two most essential skills I learned were how to talk to others about what I see and don’t see, and the ability to face the ugly truth about what my life really is. Simply stated, I learned to deal with messiness in constructive ways.

I spent one hour every week being confronted by the sweetest woman. She could match her clothes to a coffee cup and dish out confrontation of the highest caliber. She made me think, reframe, and understand myself as a person with disability. Most of the residents didn’t like the process; I inhaled it!

Our independence comes at deep personal growth, and often we pay a price for that growth. We lose friends who can’t deal with the fact that life is messy. We gain new friends who get that the messes of our lives encourage the roots we’ve planted to go deeper, to reach the water that is buried deep within the earth of our souls.

We’re strong; we can stand for ourselves. So, cut the worship narrative—we don’t need it!  We’ve dug down in places you may have not gone yet. You may have dug in soil we’ve not been in. Let’s learn from one another by offering up the needed insights we can give to each other.

I’ll settle into a slow, methodical clearing of my calendar this week. The days of fun, laughter with friends, eating, and discovery are near at hand! Time to move towards it. Hopefully there won’t be any holiday hitch.

The Hitch

I’m planning my holiday, and over the next two weeks I need to firm things up. During the past few weeks, I’ve come to understand that Covid-19 set me back in the travel department. I had not realized this until I started this process of booking flights, making sure I could get to where I was going, getting the proper testing done, and making sure that I can get to the airport. When you’re disabled, can’t drive, and depend on third parties to make things happen, it puts a kink in things.

There is a part of me that doesn’t want to deal with any of this; I just want to stay home and not deal with the hassle of it all. I know I can’t do that. So, I better face up to the hassle and get it all done.

Meanwhile, I’ll tell you about why being disabled and traveling when you’re single is such a major pain-in-the-everywhere.

When the average person plans a trip, they plan the trip, get themselves to the airport easily, check in, find the gate, and get on the plane. When the average disabled person plans a trip, there are added complications: HOW am I going to get to the airport? Is my needed assistance set up and confirmed? Is the airline I’m flying on friendly to people with my particular disability? Are the airports friendly to people with disabilities? If I’m on public transit, is it reliable? If I’m in a taxi, is it reliable? If friends are helping, are they dependable?

Now, add to all the above that I’ve got to meet travel requirements for airlines and countries before I board a flight! Can I get to a testing center? Do I need to ask someone to take me to the center? When do I need to make the appointment? Are the sites for the information accessible?

By this time, I want to curl up, call it off, and stay home. That won’t do.

This leads me to people I know who use travel services that support the disabled, at a slightly higher rate. They pair people with companions. For some people, this works well. For me, I’m not really interested in this type of thing. So, I have to deal with the annoyance of creating and doing it myself. Visiting friends for this holiday is the best option.

Don’t take this the wrong way: travel is skewed to favor those who can easily do it. It brings back memories of family activities where my siblings would be able to get to the accessible places; my mother felt like she needed to stay with me, and I felt guilty over depriving her of being with the rest of the family. “Mom, I can watch,” were words often spoken. The memory hurts. Now, I don’t just watch—I join in on my own terms as best I can.

I use the “wheelchair” service, I get assistance, I have cards in large type for safety instructions, and I meet some very nice people who are there to help me get to where I need to go.

This time around I’ll connect with friends that I love. I’ll explore beaches and other places, knowing that those I’m with will understand that I don’t see the world as they do. This time I’m staying in a cute but quirky cottage by the sea—some wonderful locations that will afford me more beach time than I’ve had in almost a decade—and I’m going to eat my way through all destinations. Eating is one thing that I can do without issues! So, let the feasting begin the moment the wheels are down and I’m on terra firma!

This week I prep so that next week I can relax about it. This week, I’ll embrace the insanity and make sure it is all ready for the safe, fun, event-filled days I’m hoping for. Next week I’ll reward myself for a planning job well done. Well, that’s the plan right now.

Minor Stroke of…

*Note: This happened in 2014. The similarities between a minor stroke and grief are mind-blowing.

October 3rd was a glorious and warm fall day. Jon and I were visiting friends. The drive south was warm and sunny, and we were having a great conversation. The visit was great and we were now headed home for a nice long weekend. We were in Utrecht, stuck in traffic, and I was getting tired. I put my head down. “We need to leave for home earlier,” I said. Once again, rush hour.

Pulling into Huizen, we decided to run to the store for butter, and I stayed in the car because I was just so tired. It was then that I lost all strength in my neck. I couldn’t keep my neck up! Weird as it was, I ignored it. Jon helped me into the house and I just sat on the sofa. He made dinner and we watched television.

It was after a bit of whatever-it-was-we-were-watching that we took a pause and he noticed me. I felt terrible and my right leg and left arm felt funny. He said that my face looked like it was drooping. We called the after-hours doctors. They sent a doctor out. I knew then that something was really wrong, and that I was headed to, as Jon and I call it, the “big house.” Yet another medical adventure was underway.

After the doctor took a look and got my history, he phoned Utrecht UMC. It was determined that I would go there, as my records were there and they knew about my situation.

The best way to describe what happened to me is that I felt detached from my world, and my body was not in my control. I felt suspended in space and at the same time, as if I were a heavy, limp weight that had to be helped to do things. My right leg felt like it was suspended in mid-air. I would later be able to state that I felt as if my leg were “drunk.”

Ambulances are weird spaces. They can be disorienting and scary. Instinctively I knew I was having a stroke but I didn’t want to verbalize it. That was too terrible a concept to utter. At the time I just wanted Jon to be with me, and it seemed like it took him forever to get there. As usual, there had been a car accident, so the doctor was off with somebody else.

Finally at 2:00 am, I sent Jon home. They’d be coming for me to admit me, and he needed rest. As it turned out, I won the hospital lotto that night and was wheeled into a private room. Now that was luck! Peace was to be mine in the days that followed as my health crisis unfolded. It had only begun on that Friday evening.

Before admitting me they had done a CT scan, but not an MRI: That would be done Monday. CT scans don’t show everything and this one was no exception. I had lots of symptoms that didn’t seem to last, or make sense. By mid-Sunday my right leg felt paralyzed. As I lay there wondering what was coming next, I thought, What if my lungs shut down? What if I can’t breathe? Or, what if I die in this room all alone? Now, that got me thinking. Being alone in this situation was scary. I would later beg a nurse not to leave me in the middle of the night. He was great and stayed until I calmed down.

By this time in the process, I needed assistance in getting around. It was not fun and certainly somewhat embarrassing, but you do what you have to do to keep what dignity you can. My speech was also being affected in strange ways; it was different from anything I had experienced before. The left side of my face felt like it had puffed up, as well as my tongue, and I was speaking weirdly. I was now scared. The nurses just watched.

Throughout the entire process they kept asking me to rate the pain. The rating was never higher than an eight. I had suffered worse pain with a pancreatitis attack! They kept asking and I kept telling them where things stood.

Monday came and I wound up getting an MRI. Then it was time to wait. And wait I did.

Jon came and it felt safe. Then the three doctors came in. There were no smiles. This isn’t good news, I thought. I heard the word “stroke” and then I was swirling in words. The whole thing sounded like the voice of the teacher in Charlie Brown. I just faded in and out and thought, What have I lost? I was sure that my right leg and left arm were damaged. Anything else? I thought as I lay there taking an inventory.

I wanted to scream “STOP!” so I could process this. “STOP! You are going way too fast! I’m falling behind!” Jon was now upset and asking why they had not done the MRI sooner. Why had they not seen the stroke on Friday? We thought I had not had a stroke because of the CT scan. Yet in my gut I had known I was having a stroke. I’d just had the weekend to believe otherwise. Why had I deluded myself?

Now I had to tell my family what the real situation was. I knew this would disturb my mother—it did. She was already thinking that I’d die. Thousands of miles away, she wasn’t taking it well. I only found that out when I spoke to my sister. The friends we’d visited on Friday had contacted Jon to see how I was doing. Upon finding out now that I’d suffered a stroke, they drove up to the UMC to be there and offer support.

The nice thing about private rooms is that nursing staff will let you violate the rules with visitors. They stayed until nearly 10:00 pm. Then they left, and Jon followed shortly after. I was now alone. I had to now make a choice about medication. That seemed to be one thing I remembered in the earlier conversation.

The last thing I wanted to deal with at this point in time was vision loss. I had to decide if I was willing to risk just that. Did I want to risk going blind but still be functional? I knew it could happen. It was a chance I had to take. I had to risk taking a drug that would save my body from another stroke but could wipe out the remaining 12% of my sight. I spent Tuesday agonizing over the choice, knowing that I had to accept the pill or whatever it was I was in for. I was still symptomatic and Wednesday it was decided for me. I drank the powder that would be a daily routine until forever.

Wednesday also brought with it a friend who knew of a great rehab center that was 15 minutes from home. I am so thankful that Marion knew where I could go for the needed rehab. Sometimes you get lucky with the right information when you least expect it. I feel very fortunate that way. So, I might not have had a say in medication usage, but I did get to have a say in where the rehab was to be done. I was learning that I had to take what positives were handed to me and accept them. The anger at the negatives would come in time and all too soon.

I got lucky in that there has been no major damage. You never get well from a stroke. You can recover a certain amount of usage and strength. You can learn to manage energy wisely and move on. But, you don’t get well. That will never happen, and believing that you will get well is a myth. So, I’ve entered the recovery and learning phase of post minor stroke in my life.

I have shed tears, felt despair and emptiness, and at times feel like I’m a burden to Jon. He is listening and offering support. I know this isn’t easy on him either. It is a balancing act of allowing him bad days as well.

I appreciate that friends and family want to send kind thoughts and prayers. I think that is more of a comfort to them because somehow they feel as if they are helping. It is nice to be thought of in that way when I am so far from you. What I need is help and at this point that means phone calls and visits, as well as a meal so that Jon doesn’t have to shoulder it all by himself.

I just folded some laundry and I’m wiped out. You don’t know how much energy you consume until you don’t have any to put out. In the past few weeks my life has changed. I know it will change more. Some things will be good and others won’t be so easy. I got lucky; it could have been so much worse, and I’m thankful that it wasn’t. I will recover all I can. I will build strength up in as many ways as I can. I have begun the fight in simple ways. This is something I know how to do: the inner warrior is back. I’m ready to fight for everything I can recover.

When

“Mommy, are we there yet?”

The woman in the front seat of the car is fighting the urge to turn around and duct-tape her child’s mouth shut—permanently. This phenomenon has happened on every long journey since time immemorial. Then the mother has this flash in her mind that carries her back to the beginning of time and particles smashing together. Maybe it even happened with the sludge of the universe as the Big Bang occurred. Imagine two atoms: “Are we there yet? Are we done yet? Can we get on with the Paleozoic Era?” But, duct-taping them would have caused a disaster. She smiles to herself instead and continues to focus on the road ahead.

Maybe in the grand scheme of the cosmos, delayed gratification is one of the great laws. The universe took the time it needed to come to its present state. That can teach us something. The universe was formed with only what it had on hand from the first moment all things slammed together and all things followed in order. No credit here. It waited. The universe used its resources where it needed them, when it was ready for each new phase.

Let’s face it: Putting pleasurable stuff off is a drag, but a necessary drag. Delayed gratification is about learning to respect the journey. Delaying gratification is about knowing that you can never have it all, instantly. Delaying gratification is about learning to work for what you want—waiting for the good stuff until you can get it in a healthy fashion.

But isn’t that a myth? You well remember that last flick that showed someone having it all: the big house, expensive car, fashionable wardrobe, fulfilling job, loving family and friends, and, let’s not forget—physical beauty. But, it rarely comes instantly. Real success, like the universe we live in, is painstakingly forged one item at a time. Yet, today, there are those who can’t wait. Saving is a thing of the past. Sorting out needs from wants is becoming blurred.

Remember childhood with its lazy times of fun and exploration? If you are old enough to have been raised during a time when play was really creative and done outdoors, you perhaps remember when books were a passage into another world (and not instantly made into movies), and TV was something that you watched for very few hours weekly. If your childhood was like this, then you are one of those who learned a valued lesson: doing fun things takes planning and time.

It is also highly probable that chores and learning to work were a natural part of your life. You had to save for what you purchased. I remember going to the store to purchase some shoes I’d saved for. For weeks I walked by that store window and looked at those slingbacks. Getting them made me feel “adult” and responsible. I earned those shoes. I wore them out proudly, had them repaired, and continued to wear them out.

For each of us the lesson is different: Anticipation is a good thing. Anticipation makes the gift we are receiving more intriguing, the new dress more exciting, and the new car that we saved up for more valuable. Anticipation gives a deeper meaning to most things we have and desire. There is a type of magic to working for something. Keeping it becomes valuable to you because to discard it when it still works means that you are discarding your hard work. Tossing it out just to get the latest thing can be an issue.

As I think of all the technology that has evolved since I was a kid, I remember that sunny, July day when Neil Armstrong and Buzz Aldrin touched down on the moon and life as we then knew it was altered. The moment was electric. Now it seems that much of the “electric” has gone out of innovation and progress. Progress is a constant in an advanced society. More and more, having it all instantly is a must. Trading up for the latest in tech, when the old is still of value, is common. To suggest that you keep what you have might be heresy. It is about having the latest and dumping the old. There is a rush on to have it all NOW with no waiting period.

We now have smartphones, smart drugs, and smarter cars, and yet we have not become any smarter ourselves. While results are faster, we as humans are still finite. We live through our technology. We live, thinking and feeling as if all answers must come fast, as if deeper thought should somehow be instant. We want that insight NOW, rather than being willing to let life teach us. We might even become impatient when our first few searches on Google fail to turn up what we need. Searching shouldn’t take us so much time. Why can’t we get it faster? Well, searching on Google is hard work, that’s why. Finding the correct answer does take some deeper looking and heavier reading. In the process you might conclude that there is not a perfect, or good enough, answer to your search, and that maybe it DOESN’T exist out there in cyberspace.

Remember when science was supposed to save us? Remember when the Peace Movement was the answer to conflict? Remember when autonomy was the answer to authority? I think we need to reread The Glory and The Dream by William Raymond Manchester.

Maybe we as a world need duct tape on our gratification instincts. Okay, that is an eensy, weensy, bit extreme. Or is it?

I have taken up baking. It is wonderful to create something that comes out of the oven and is warm and yummy. The fact is that baking demands that you wait. There is a proper time when eating will bring the desired pleasures of good food. Just think of something you love melting in your mouth and your brain will light up in anticipation. Your mouth might begin to prepare for the pleasure as you read this. BUT, you have to work to make it, so you had better make lots of it to enjoy!!!! Yikes!! I want to eat those scones I plan to bake for Saturday, but I want them right now!!!

The whole idea for this commentary came from a conversation I had with someone about the guide dog I’m working on getting. I’ve been in this process since 2010. At this point, I just want to move on. I’ve had to think about whether I’m ready, or even wanting, to move forward, because I can’t wait. Like the universe, I have had to work with raw thoughts. I’ve had to shape and train them. Crossing the street in safer places has become a must. Thinking about HOW I’ll do it and memorizing routes takes time. Learning the train stations and bus stations has been fun, but I’m glad I’m past that.

I’ve had to reevaluate my established walking routes, my future needs, and the needs of our cat, Penelope, who will have to welcome a dog into the house. Getting this dog is life changing, and making the correct choice at the right time is important for our family.

I’ve spent 15 months in Apeldoorn learning what things that I’ve needed, and lacked. While I was in Apeldoorn, I was also able to observe others with dogs. My process is of more value because of all of this. While I don’t want to rush things, I feel the time has come to move things along. It isn’t about “when” but rather about the process and how secure I feel with it.

Childhood is all about “getting there.” Young adulthood seems to be moving in the direction of attempting to get it as fast as possible and show it off. Eventually there comes a time in life when you reach “wisdom,” or the point when you accept that you never will fully have everything you think you need, but that you can have the “needful things.” The journey is what it is all about. Saving up for the good stuff is where the greatest reward lies. Understanding our real needs and allowing ourselves to have wants that might become realities brings peace through expectation.

“Mommy, are we EVER going to get there?”

“Yes honey, count the green and red cars, and tell me how many you can find.” I’ll be content to count the red and green cars until the doggy enters my life. I hope it is sooner than later because I feel better about “it” coming into my life now.

*Note: The dog turned out to be a no go.

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 sang this song and it was authored by John Mays and 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, Mendelssohn, 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 with 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 ten years.

When I was in my 20s, I spent time doing an internship that involved those with mental illness. I gave several hours per week to those who were in need 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.” So 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.

The Gift of Being Heard

I’ve spent many hours listening to and being listened to. I’ve communicated, at least on some superficial level, what I meant to say. I pause to listen, to tune in, but in my haste, I fail to hear the real sound that I am in need of hearing. I listen, but fail to hear.

You can learn listening skills that will, if you practice them, enable you to not “spring” too soon. You can learn to clarify what is being said, and the person on the other end of the conversation may come away feeling as if they communicated successfully.

We listen inquisitively, we listen out of curiosity, we listen in hopes that if we do so it will somehow all be over and we can say “I listened to you. What more do you want from me?” We listen with resentment and fear. We don’t really want to know. We listen passively. We practice “active listening.” We justify all of this as doing a good bit of what we perceive listening and hearing to be.

At the end of the person’s sharing, they may be frustrated by the lack of listening we displayed. Maybe they are right. Maybe we blew it all off, tuned ourselves out. Maybe we did a “good enough” job of listening, but it wasn’t good. Maybe we got lucky. Maybe they left feeling a bit better for having spent the time in conversation. They might feel any of the above, or they might feel something else, and we might not be given the chance to find out just how we did during that conversation. There are times when we only get one shot at listening and turning it into truly hearing what the other person is telling us.

Each conversation is a one-shot deal. It is my observation that for most of us, we spend time listening, but not hearing. Hearing is an art and most of the time we fail to do it very well. Hearing is acknowledging what is left unsaid, as well as the spoken portion. Hearing is seeing and feeling the richness of the soul. Hearing can be like unwrapping a gift box. There are no courses for hearing. There are only times in our lives when we are the person who hears in fullness and the person that is fully heard. These are the times that we remember most. To fully hear and be heard: to grock it (Stranger in a Strange Land by Robert A. Heinlein). This knowing is what hearing and being heard is all about: to have a fullness of understanding and to view the “gestalt,” or the picture in its entirety.

Recalling the conversation that sparked this blog title isn’t essential. The last comment, however, was the true gift: the gift that told me that for a brief moment in time, I mattered to this person. “You needed to be heard.” Those words became significant. That one sentence caused my soul to change. I had been given the gift of being heard and I knew it.

Hearing it Physically

Music is a major part of my life. I listen, I sing, and yet I don’t hear all of its richness due to a hearing loss. I can hear harmonies, but not the richness that is present. I miss what the composer intended that I hear. If I use headphones I can hear more, but not all of the richness that is present. Headphones can be a pain. To hear the richer and fuller sounds of the music, I must wear them. I must use them when I Skype. I must be tuned into the other person.

Recently I decided that I needed to revisit the hearing instrument market. I had worn one such gadget from the mid ’80s to the late ’90s. The gadget was big and not very effective. When I moved to Germany, I stopped wearing it. I would live without hearing because it felt better to not have that gargantuan thing in my right ear. I would also be rid of the background noises that were not wanted. Hearing was not pleasant.

Life changed and I needed to see if I could introduce a better quality of hearing pleasure into my daily experience. I found a center that does thorough screening for hearing loss and took that information to the techie who would do the actual work of finding the proper gadget for my sorry state of being. I didn’t feel very hopeful. My past experience was foremost in my mind.

The next week something wonderful happened: I heard a conversation and didn’t have to ask the person to repeat what was said. This was novel!!!! There were no raised voices. The experience was beautiful. Listening was effortless. I could once again hear the world around me.

I began to explore and found that I could have background music on and still hear!!!! I could listen as our three cats munched down their meals. Cats are noisy when they munch. I could listen to the sound of the water, which had always seemed so quiet. Once the initial adjustment to hearing old sounds in new ways passed, I was happy. I was excited about having something else switched on. That switch was triggered a week later.

That next Monday, my music-listening program went live. I heard music in a new way. I was ecstatic. I could hear notes that had gone missing!!! The guy told me about some technology that would enhance my hearing experience to even greater heights. I had him order the “Mini Tek.” NOW I WAS EXCITED! Oh, to hear the world in ways it was meant to be heard!

This gadget Mini Tek enables the user to have the sound transmitted directly to the hearing instrument. I would have a clear stream of beautiful noise!!!! I would be tuned in precisely!!!! I would hear my phone conversations while out and about and not have to ask the speaker to repeat themselves. Life was getting to be a bit of heaven on earth… UNTIL I found out that the insurance, which was paying for thousands of Euros of hearing pleasure, would not cover this 300 Euros of enhancement technology, and I was faced with having to return the box that I had only hours before opened so excitedly.

Returning that box to the Beter Horen (we’re now in Holland) was one of the most depressing days of my life. I asked my husband Jon to do it because I was too depressed, too sick in my heart of hearts, to take it back. So, for now the gift of really hearing music and out of the house phone conversations is not happening. For now it is hard, but not as hard, to hear. But this is just about physical hearing and not about the needful hearing.

The Gift Box

Fortunately, for the true hearing of the soul I don’t need a hearing instrument. I don’t need a Mini Tek; I need an open heart that is tuned to the correct frequency of another’s heart. The transmission will be clear. I will be shown what I am meant to see and hear. That is what the gift of being heard is all about.

The gift of being heard is about feeling the soul. We must not only hear the words of the heart, but we must see the landscape of the soul. Only with both true hearing and clear vision can we understand and grant the gift. Only then can we hope to understand the rich soul-scape that awaits us. Only then will we rejoice and be thankful that we unwrapped and shared the gift of being heard.

Radical Compassion

In 1958 there was a pandemic, and my mother happened to be pregnant with me. It was only a slight case; she didn’t even know she’d had rubella until after the fact. It was during an era when medical abortions were done if the parents and the doctors were willing to do so. My mother told me that they didn’t ask, so the docs didn’t offer. Nature took over and produced a child who had been conceived to be healthy, but who became injured while still in the womb. That is what nature does.

In talking with my mother about this issue, she once told me that she could understand both sides of the argument and why a woman would choose one or the other. From her I learned that the issue around the health of an unborn child, or the termination of that pregnancy, is not an easy, cut-and-dried process. The choice to raise a disabled child came with a great deal of pain and learning, as well as tears and sorrows on all sides. Society blames and doesn’t help. My mother learned radical acceptance and radical compassion. I watched, I listened, and I learned from her.

In the past month, I have sat and watched as so many have blamed gun owners, children, the shooter, the NRA lobby, and Congress for the travesty of yet more dead kids. I hurt for the families and friends who have lost children. I am angry that people are using an act of violence to force a political solution, as well as a mental health solution, to this situation. There is enough greed and corruption to go around! There is more than enough blame that is being spread to the innocent. I want to scream “NO! STOP IT!”

I do support change. I’d like to see assault rifles, code red drills, bullying, blaming, and greed to be taken off the streets. I’d like to see respect and support become common. I’d like to see corporations become responsible for what they are putting on the streets. I‘d like to see violence in video games and films done away with. I’d like to see everyone have access to good mental health care and not just a set number of visits per year. I’d like to see education and understanding for all.

I’d like to see scientists search for effective medication that could reach into the abyss of a shooter’s mind and allow that person to be healed with both medication and talk therapy. It is dark in that mind. It is lonely in that mind. To be able to befriend such a person would be rare. Why? Because what such a person thinks is so black, so far from the norm, so chaotic that most professionals can’t—or won’t—even go there. I’ll venture to speculate that the person owning the thoughts is just as terrified of going there. What I’m talking about is a radical compassion for others.

Few have been able to show such compassion because few are the Buddha, Mother Teresa, Jesus Christ, or others. To be part of that universalizing place takes a lifetime of journeying. However, each of us is capable of listening with love and compassion. You do it as a child when you show sorrow for your friend’s pet that passed on. You do it when you spend time listening to a friend sharing grief. You do it in a darkened theater when you let out the buried pain that you can’t show for yourself or someone else, but can show for the character in a film. You do it when your best friend tells you that they are coming out, and your love for them takes you to new places of joy and acceptance for who they are. You do it when you ask “Why?” and come away with only more questions, but a determination to find one solution and you join a cause. In joining, you move to radical compassion, when you sit down in a room and listen to the others who believe differently than you do. You do it when you realize that “they” care just as much as you do. You do it when you take a hand and find a way to work together for peaceful solutions.

I saw it in my mother as she was faced with how society treated her two disabled daughters. I saw it in her heart when she wept and yet didn’t lash out at others for the treatment that came to her children because other parents didn’t teach the same values of love and acceptance.

I want to see more kids step up and take responsibility for the things they can do. I want to see those of us who are older applaud the courage that we are witnessing and show love and compassion for the process they are initiating. I’d like to see each of us stop and think about the words we speak and the actions we take in our daily lives, and how they might affect others. I want to be on the path of radical compassion with my fellow human beings. Right now it feels sparsely traveled. I think back to my mother, and if I can do what she was able to do, I’ll be doing well. Join me on the journey. It isn’t an easy journey, but my mom thought it was worth doing, and so do I.

Sneakiness Is Happiness

Today has been very hot. I like the heat because it means that the sun is out and the sky is blue. The only bad thing about the heat is that sticky, humid feeling. Today I had to be out in the heat and it was wonderful!!!!

Why? Well, it was because of all the nice things that happened while I was out and about and doing the many things that I had to get done. I was out alone with Myrtle Mae. Myrtle Mae is a good sidekick. “She” keeps me safe from others. I’ve also noticed that people are really nice to me when I’m buzzing around with my stick. (Myrtle Mae is featured in stick magic.)

There are so many things that are different about being a person with low vision. Some things are just more complicated and time consuming than they are for a fully sighted soul. People being nice to me made me feel OK about walking around in the heat. So to balance my happiness, I find myself listening to one of the most pessimistic guys of rock: Don Henley. I like Don.

There were things to do, like the veggie run and the bank. I like getting this stuff done—but there was also laundry to do before I could do the veggie run.

I tell you all of this because the man did something wonderful for me. He can be sneaky in phases because my sight just isn’t good enough to see what is going on in my tiny room that I use as an office. I didn’t see the first phase at all.

My office is filled with very “Gail”-type things, two of which are parasols that are mounted into the corners of the ceiling. Once they were up I thought, Wouldn’t it be cool to backlight them? I haven’t thought about it for some time. He has.

While I was out and about, he got to work and gave me a very beautiful surprise to come home to. Yup, he backlit my parasols!!! So, even though it is hot out there and in here, I’ve got the tiny lights on. I couldn’t resist as it is so pretty to have the soft light around me.

Being nice pays off not because it has to—it just does. There is something about generosity that is contagious. So, when I’m out and about, I smile, and others say hello to me. Why?

I think that is because we, as humans, crave positivity in ways that will never be fully understood. I, for one, have no desire to study this, as it takes some of the magic out of the process. I will studiously avoid the research on the topic. Some things are better enjoyed and left alone.

I think I’ll go find someplace cool to enjoy the evening. I also must switch to something other than Don Henley. Before I do—remember to smile and see what you get in return.

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-quite-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 (Pseudoxanthoma Elasticum) 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,

Gail

P.S: Please scroll down to see a diagram of the eye.


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 then a happy, sighted one-year-old who was 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 (Pseudoxanthoma Elasticum) decided to contribute a bleed in the retina and reduce what vision I had. 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 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 it 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 who is 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, that you are through labor and delivery, and that I have ten fingers and ten 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, remind you that this is not your doing, that you had a very mild case of rubella and nature happens, and 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, 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 caregivers. I know that in the 1960s 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. All three of us are 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 ’60s and early ’70s. 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, but 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-to 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 and Maira

I guess you could call today “Maira Eve,” and as I have been thinking about my life and events that have led 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 set 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 ten 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 on 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 rooftop 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