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Posts from the ‘Musings and Insights’ Category

Dec 16

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.

Dec 9

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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.

Dec 6

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

Aug 23

The Rose Room

As some of my readers know, I’ve just painted and will be painting the rest of the space soon. There was one room that has gone untouched. It is a beautiful rose color, and in it there are many treasures. It is the Room of All Things Gail.

On the walls there are works of art, and each piece has a loving history.

There is a painting that my aunt Ruth did way back when that I treasure. I love it because she let me have it, knowing how much it meant to me. There is the counted cross-stitch that my friend Leann labored to create for me. It is beautiful, and I cherish it because she performed a labor of love when she stitched it.

Along with that, my older sister Beth has a place of honor with the picture that has been with me since childhood. It is a Gail version of The Princess and the Pea. She put me in a blue dress on top of many mattresses. Each mattress is a different color and design. I love this so much and someday it will go to one of her daughters.

Hanging in the Room, and moved from the bedroom, is another counted cross-stitch. My sister-in-law Peg made this for our wedding. It, too, was done with love. Shared love is the only requirement to be placed in this Room.

I also have two stained-glass pieces of art that my mother-in-law Mary made. I am so thankful to have them.

Hanging in another place of honor is the wedding bouquet that my three sisters-in-law Peg, Bev, and Rebecca created for me.

There are two parasols that Jon hung up. I’ve mentioned in “Sneakiness is Happiness” that he backlit them for me. That is a day I will remember forever. Oh, the love that filled the space that day!

The Room holds objects that span the years of my life and are sacred to me. It holds something from a friend who I came to know in the last five years of my life. That friendship has given me many gifts of thought and hope. Thank you, Betty. The Room is my place of healing and restoration. I can sit quietly, get ready for my day, and read in that room.

In some ways the Room has existed for a few years, but in other ways the Room is new. The Room in its present form emerged into its new role in my life over the late summer and early fall. It started with knowing that I wanted to place a new piece of furniture in the Room, and as I envisioned where it would go and how it would feel in the Room, The Room grew in purpose and my understanding of the space began to change. What I had used as an office during Jon’s life would be no more. My office was to move to the other side of the house where the sunlight can stream into it and I can see out into a larger world.

This Room called Gail is a place of healing and hope. This is where my heart is found, where the healing is strongest, and where, when I enter, I find the most peace.

For those of you who read “Raw” or listened to the podcast (Parts 1, 2, and 3) that I posted late in 2017, my healing journey has been both traumatic, challenging, amazing, and in some ways even peaceful. I suppose that it has been a combination of watchfulness, the love and caring of others, and the understanding that this type of pain and hurt only dissipate when faced head-on. It is my tiny sanctuary, however, that allows me to find what I most need in my heart.

It is the realization that I can say a loving goodbye to someone I have loved deeply. He is not in pain now. It is also an acceptance that I can hold on to his memory in new ways.

The creation of this space has done its secret healing and holds a place in my soul that I didn’t understand until I let go to find it.

I don’t think that there is any single or correct way to heal from something like this. I think that the best healing comes from following your heart and soul and listening to your gut. Healing involves talking and finding a supportive listener. For the listener, you need to choose wisely. Find someone who you feel a bond with, someone who respects you, and who you respect. If there is not such a person in your life, then find a good therapist who understands both grief and the loss involved with a completed suicide.

Healing is about recognizing that you will have really good days, really bad days, happy days, and days of hopelessness. Healing is about allowing the depression that will come because of the death that has entered into your life. Sit with the depression for a time, and if it doesn’t fade, seek professional help. Healing is about understanding that the pain will diminish and calm. Healing is about loving yourself. It is about seeing yourself in the mirror as “enough”: no more and no less than “enough.”

Healing takes strength and courage. It is your own unique journey.

As I spend time in this healing space, I’m discovering its complete power. It is the power of the lit candle in the darkness. It is the homing beacon that steadies me. It is that place that tells me that I’m loved, both by myself and by many others who I both know personally and who I only know because of the Internet.

To walk through the process of healing is also to be able to look out the window on a grey day and see the sun that the clouds hide. It is a knowing that you and only you can fully understand. It comes from traveling through it and stumbling along the way. It happens when you stand up once more and say “AGAIN!” You are never beyond, but you have moved on.

Forward movement takes on many forms. Sometimes it is a return to the old haunts, and other times it is the unexpected and unfamiliar that call to the soul. In many ways, the Room of All Things Gail was totally unexpected to me. It was a feeling that I had to create a place of sanctuary.

As I write this, I am in my new, blue office space surrounded by books, my sand tray collection, and hope. This space is one I’ve claimed as mine. As I look out of the window, I see the stormy skies closing in; I see the other homes in the area. Most of all, I see LIFE. It is good. It is peaceful and this is my space now. This is the room where he wrote the notes. This is the room where he spent so many hours. And yet, this is not “that room” any longer. The painter came one November day and covered the rich green walls with my beautiful blue color. The painter took nothing away but what had to go. It doesn’t hurt like it did a year ago. This is a place I come to work and to enable the healing of others. This room also holds some treasures.

While blue is the color of my soul, it has not been the color of my deepest healing. That has been rose. That Room is just a few steps away from where I now sit working on this, and I shall go there to feel the warmth of the sanctuary: the Room of All Things Gail.

As I sit here, I realize that I could not have created this lovely space without the Room of All Things Gail. It was the power of healing that let me say goodbye to what had been, and greet anew what was to be. It was the power in that Room of Rose that set me on a journey to claim the space I’m now working on. It was the realization while sitting in that space that I could, and should, listen to my heart and follow my desires to create what I wanted for myself. Thank you, Rose Room. I think I’ll go there now to pause, give thanks, and continue the journey.

Aug 1

Navigation

River pilots have been a mainstay of the great rivers of the world, and in the U.S. they taught many how to navigate dangerous places and waters. I’ve used this analogy in closed groups, and am now choosing to use it here in this space. I hope the message is one of hope. This is an imaginary conversation.

The master river pilot and I sit in the boat eating bread and cheese, drinking the cold water of the river we’ve been on. The pilot is silent and waiting for me, the student, to comment.

“Devastation and damage is there. That is what I see.”

“Is that all?”

I slice off more cheese and bread and drink the water.

“No, I see triumph and wisdom.” We turn back to view what was navigated, and we both sit in silence, thinking over the trip that has placed the boat in its current location.

WHOA! We both survey the damage, crazy as it is, and we embrace. I’m sobbing in joy and gratitude. I stammer an “I could not have done this alone,” and take the pilot’s hand. “You didn’t tell me how beautiful it would be, and I didn’t think I could see it this way. This river is magnificent! And so is the damage!” Yes, in my fresh realization I discover that the damage I have navigated has its own beauty.

We can see it all! The mountain and the sacred space. We can see the dark, creepy forests and the valleys that held spaces of peace. I wonder if the people that were there are still present, or if they have also left for new destinations. I notice a city and inhabitants exploring its environs; they are being told to get on the newer, more elaborate boat that has been brought to this point in time. I knew it was time for a new boat, and a new journey. I understood the pilot would not be as active this trip, but that if I asked for help and assistance, I would have it. I had grown much, and it was time to test my new strength against the currents on my own.

I remember the terror of boarding a tiny, dilapidated boat, feeling as if it would get me nowhere, and preparing to sink as I went out on the water. But I remember thinking that if I had to be on the water in this craft, I’d better do my best to save or repair it. And that is how the journey began. I remember beaching the craft and walking inland to a forest that looked dark and threatening. I sat on a rock and cried because I knew I had to go into that place and I was alone and fearful of journeying into the darkness. I wasn’t afraid of what I would find, but I was uncertain of navigating in the darkness. As I sat there, I heard the tinkle of bracelets and earrings. It was a gypsy lady! She was saucy and vibrant and said that she’d been in that particular forest in the past and would be glad to serve as a guide. Together we reached a meadow of great beauty where the gypsy helped me locate a magnificent chrysalis that was just about to hatch, and as we watched it, the most beautiful butterfly emerged. It was the soul of the woman who had gone into the forest!

“This is yours and it will be with you forever.” The memories come back and the memory of the bond between the two of us floods my mind. The butterfly has remained nearby as the journey has unfolded. It holds magnificent strength! I know now that I have been molded by this soaring creature of such beauty, and I still wonder why I have not captured its deeper essence.

In wondering about this, the butterfly responds to my heart:“You have! You have been so busy on the journey that you’ve failed to look in the mirror! All you see is the damage! You know the beauty is there, but have you really claimed it for yourself? You are aware of triumph and wisdom, but are you aware of them residing in you? Don’t you remember when I broke free? Don’t you remember how I soared? Do you think that was only the beauty of my wings? You doubted what I gave you, but I’ve been near you all of this time. I am you, in pureness! Take a fresh look at me!”

I return to the boat and realize I’m crying. I gasp for breath and try to calm myself.

The master looks at me, the student of the river, and echoes the butterfly: “Your butterfly joined you so long ago that I think you have forgotten her full power. You have held her close and soared, and at other times sunk into deep despair. She never left you, and when times required her to, she reached down and pulled you up to travel on the river another day. I sent the gypsy lady to you when you needed a primer that would serve you well and prove to you that you could do this work of Life.”

I sit speechless. What words can I use to respond to this? I don’t have words—only a realization that truth has been spoken.

“When I asked you what you saw, you spoke of the worst first. You have done this type of thinking for so long that it has become primary to your functioning, and yet when you stand tall and survey the surroundings, you also speak to the triumph, and finally, the wisdom that you have gained.”

The master teacher and navigator has me focus on the rapids that I so recently transited.

“Look! What is there?”

“Only triumph. I don’t see anything else. But you were there with me, guiding me through the rocks, and when the boat began to take on water you stood and watched as I bailed myself out.”

“I only did that to teach you to trust me as you never have trusted me before. I knew that in your heart you wanted to learn it for yourself. You have learned this part of the river well. Well enough to guide others. Look again and learn from the journey you have been on. You are not that scared, younger woman of so long ago. Look at your hands. Feel your strengths.”

Once again the truth is spoken to my heart.

In the past two years, the journey has taken me to many places on the river. It has been a transit and journey of a new type. Leaving the old and finding the new, only to discover that the old has served in ways I never felt it could.

The boat I am in now is simpler, yet sleek and modern. The guides who have served to enable me to navigate the rough stretches have come and gone. Each has taught me new things. Each guide has specialized in a very particular portion of the river. But the pilot who began the journey with me has remained.

As I think back over the journey, I’ve come to understand the lessons the river has taught me. Pain and growth, whether in childhood or adulthood, teach strong lessons. I’ve gathered them in and managed to weave something out of it all, yet I’m not quite certain what it is all about. I just know that it is there, and that someday I’ll look over it and maybe have some insight that isn’t present now.

What I have learned from all of this is that there are times when the insights we gather serve us well, and other times when our view can trap us into paths we’d rather not wander on.

So, as I pause on this river, look and observe, I can’t get too snarky or certain. I am, like each of you, a traveler on this river. I navigate it with respect. I turn to the master pilot and navigator and announce that it is time to run this new river area. I smile, get a slice of bread and cheese, and more fresh water. I wonder who the new guides will be. I wonder if I’ve learned enough to guide myself or others. I realize that it’s not my call. But the master of navigation seems to feel that I’m ready. I turn my back on the damage holding the triumph and wisdom in my heart and raise my voice to the skies in a way I have not done in two years.

“Okay, cast off!” I drop the ropes that have anchored the boat to shore and sing as I do so. The boat feels good and sturdy, and I know that on this new stretch I’ll learn, grow, and move in ways I have not done before. I wave to the navigator, who is once again on the shore but never out of contact range.

“Show me what you can do now! I’ve been waiting so long for you to run this portion of the river, and run it you will!”

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