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Posts from the ‘Living With Disability’ Category

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