The Joy of Mania

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Last Sunday, we had a houseful. My sons, Ethan, Jesse and Eric came. Ethan brought Otis, his 16 month-old son. Otis is learning to talk but more adorably, he communicates in gestures, pointing to emphasize, and shrugging to say, “where did it go?”

Jesse brought his three girls, Marissa, Claire, and Ally. They are six, five and four. Otis is going to think that all the girls love him, because his cousins dote on him.

Also, we had a treat. Frank’s nephew’s girls, Hannah, 9, and Sophia, 7, came with their mother Heather. So we had five girls and Otis here all at once. I was overjoyed.

Frank has a special relationship with Marissa. She runs right to him when they get here, because he’s her buddy. She makes up games for him, draws pictures for him, and is totally engrossed in her play with him. She needs the attention, having to compete for attention at home with her sisters.

The three girls were adopted when they were 2, 3, and 4. They’re tiny, measuring up to only the fifth percentile for weight and height of their peers. Sophia is small, but Marissa looked tiny next to her.

I was really looking forward to their visit. Usually, because I’m in my wheelchair, I have a hard time trying to figure out how to interact with the little ones. I long to get on the floor with them and play like Frank does. And usually with that many people here, I withdraw, and have difficulty speaking or talking. But this time was different.

Ally asked her father to read a book, and when he said no, I volunteered. It was such a joy to read to her. It was one of my favorite children’s books, “Are You My Mother?” When I got to the part where the baby bird meets the noisy snort, Frank chimed in with a bit “Snort!”

The girls love coming here. I have arts and crafts supplies. Heather did a craft kit with all of the girls, helping them make decorated hair clips. She was wonderful. She left a rock painting kit with me so I can play with the girls the next time they come.

I got manic that night and for the next week, I was manic and had a very hard time sleeping. I was so excited that I had not become withdrawn this time, and had enjoyed socializing with everyone. Jesse and I talked about Trump and he showed me a selfie he had taken in front of the White House, flipping it the bird. Haha.

I spent my nights on the computer, shopping for crafts kits for the girls to play with when they come. I bought them smocks for the rock painting. I bought Otis a toy airplane because he didn’t have any toys here. I was so excited, it was like a curtain had been drawn and I was connecting with my grandchildren in a different and authentic way. All this time, since December, I had struggled to communicate and play.

Usually, mania isn’t my friend. I lose sleep, I cause more weakness, I run down my body. But this time I thoroughly enjoyed the elevated mood and the urge toward creativity.

During this time, I made the slideshow I posted here on my blog. I mailed it to my family members. At last, after months of stagnation, I feel alive and purposeful.

Finally, I can play.

Love,

Gail

On Isolation

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I am an isolated individual.

In 1960 at the age of five, I was stricken with polio, completely paralyzed and placed in a steel cylinder which did my breathing for me. I spent three months in the iron lung. I could not communicate with anyone. As a result, I spent most of my childhood nearly mute, and at the age of ten I was given a diary and discovered writing.

I was and am a very deep and intense person. On top of that, I have extremes of mood from bipolar disorder and nightmares from PTSD. Writing has always been an outlet for me as I am less able to communicate verbally, still.

Socializing is painfully difficult for me. I understand the root of the problem, having been brutally bullied as a child, but I still long for connection with my fellow human beings and so I make an attempt through writing.

My isolation has produced things of which I am very proud. I have a book of poetry which is a lifetime collection of deep and meaningful observations on life. I have a published memoir of my experience with polio and my subsequent recovery. I have deep and meaningful relationships with Frank and my family members.

But in the dark of night, by myself because I am unable to sleep, the isolation of being so verbally limited pains me.

I like to write inspirational blog posts. This time I don’t know where I’m going with this, except to reach out and touch you and feel you close to me. We all walk this earth alone and die alone, and none of us can peek into the mind of another. But when we converse, when we risk our vulnerability to share our fears and weaknesses, we also risk connecting and understanding and caring for each other.

This week I will try harder to speak more to others. I will try more often to post my feelings. I will rely less on memes and more on authenticity to connect with my friends.

Perhaps in this effort, I will find myself a little bit less isolated, a little bit less lonely, and a little bit less fearful of rejection.

May we all strive to gain a little more authenticity in our lives.

Peace to you all.

Love,

Gail

Upon Hearing a Rilke Poem

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It is Sunday. This is the day when Frank gets us coffee and donuts from Dunkin’ Donuts and buys his Sunday Boston Globe and spends the greater part of the morning reading. I spend time on the computer, usually on Facebook sharing posts and responding to posts made in my post-polio support group. It is a very serious group with people experiencing debilitating disability and desperation about the progressive nature of our syndrome.

But today there is a lightness in my heart, and a freedom from my usual obsessive worrying about the future. In a rare state of tranquility, I am able to just experience the present and be thankful and grateful for the peace and beauty in my life.

I am not in pain. Not physically or psychically, and that is a blessing worth noting. I am comfortable in a way that eluded me in the past. My physical and emotional needs are being met. I am not struggling.

I was listening to Boston Public Radio this morning and they had a guest on who is a Buddhist ecological philosopher. She is eighty-one years old. She has been a translator and worked on Rainer Maria Rilke’s poetry for years. During the segment about her life, she read several of Rilke’s poems. I was moved enough to want to buy Rilke’s works. Being a poet myself, I am a little bit ashamed that I wasn’t familiar with his work, but I am well-written, but not well-read.

The poetry was gorgeous. The ones she chose to read focused on spirituality and death, but the beauty of the imagery elevated the subjects to a level of experience that was transcendent. Rilke believed, as I do, that life ends at death, but we must make peace with death and use our lives to fully experience all the possibility of our humanity. The natural world plays a large part in his expression, and it was in this that I found an inspiration so very real to me completely uplifting.

I used to get high when I entered an art museum or thumbed through one of my art books. I never experienced this by reading poetry. Until now. The high is a result of having the poetry read to me aloud, the way it is intended, by someone who is in love with those written words. I forget her name, but I’ll never forget her voice.

Today, for all of you, I wish the transcendence from your everyday to a high of delight and wonder. Whether it be art, poetry, or some other pursuit of your own, I hope you find meaning in your life and can rise above your problems, even if just for a moment.

To the everlasting light in our lives,

Love,

Gail

 

A New Life

IMG_0435On March 24, 2016, Otis Donald Anderson was born. This new life is precious to me. He is my only grandson. I never knew how moved I would be when holding my grandson in my arms for the first time. He is perfect, a blank slate as my son, his father, says.

The first day we went to Ethan and Andrea’s house to see Otis, my tremors were very bad. So bad that I worried I would drop him when they handed him to me while I was still in my wheelchair. The tremors continued throughout the day, and I struggled to be calm when holding him. I got to feed him his bottle twice, and marveled at the daintiness of his fingers and the whispers of his eye lashes. I stroked his black hair with my shaking hand, praying for relief from the tremors that prevented me from fully enjoying being with him.

My physical therapist had suggested I ask my primary care doctor for a prescription for Lyrica for nerve pain. Lyrica was developed as a sleep aid, but when given to patients with MS, it was discovered that it quelled their nerve pain. I took the Lyrica, and within one half hour, I was without the pain in my ankles and legs that I had lived with for at least four years. One side effect that surprised and delighted me was a lessening of my tremors. The shaking that rocked my body from my hands to my feet had almost been silenced.

Two weeks later, we visited Otis again. This time, instead of the ratchety movements of my arms and hands holding the baby, calm arms and hands caressed him in his coverlet. I was able to trace my finger along his cheek to feel his newness, and loved touching his little legs and felt his tiny feet inside his onesie.

My only job is to love him. Now I can be tender and calm. My body doesn’t betray my wishes to caress his face with a loving touch. I still have minor tremors, but the difference between the two visits is profound. This has been a gift to me, in the midst of a very happy phase in my life.

In one year, I am a grandmother four times over. My son Jesse and his wife Ines adopted three sisters, age 3, 4, and 5 this year. Marissa, Ally, and Clare know me only through Skyping and phone calls, but they are due to visit in July.

The blessings abound. Four precious little lives are enriching my life daily. My tremors are quieted to a degree I can deal with, and I can be the grandmother I want to be. Just when I thought I needed to accept the pain and tremors as a part of my post-polio syndrome progressing, I was pleasantly surprised by a pharmacological intervention.

There is hope. There is always hope. In the midst of a struggle, we might be blinded by the waves of difficulty washing over us. But sometimes, just sometimes, we get through it with a better understanding of ourselves and the gift of some sort of intervention.

We don’t have to do it all alone. Accepting help has been very hard for me, but I have learned it can mean the difference between suffering in silence and living fully in the moment.

To Otis, Marissa, Clare, and Ally, my lap is open to you now. My love is for you.

To my readers, take heart. If an intervention doesn’t present itself for you, look outwards for help in your struggle. Learn to ask for it. Learn to know you deserve to feel better.

Until then,

With Love,

Gail

Transitions

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I have post-polio syndrome. Recently, I have transitioned from using leg braces and a walker to being in my power chair full time. It was a hard transition, but with the love and devotion of my beloved Frank, as comfortable as it can be.

We don’t live in an accessible apartment. And although it is spacious enough, driving a chair around presents challenges. The nights are easiest, as I am alone in the living room without my braces on, and usually spend time writing emails to my loved ones.

Post-polio syndrome is a cluster of symptoms which show up 30 – 40 years after the initial diagnosis of polio and after a recovery is made. It includes increasing weakness, extraordinary fatigue, pain, and breathing and swallowing difficulties. I have all of the above.

Transitioning to my power chair meant I had to give up my networking group. It’s a fabulous group of dear friends who promote each other’s Etsy shops and items. It gave me a sense of purpose and enjoyment in my day. And I miss celebrating each other’s successes.

At first I was going to close my shop as well, as it’s difficult to get packages ready to ship now. But not wanting to give up everything that gives me joy, I have chosen to keep it open. I’ll be making more jewelry in March.

But I now have more time to write; maybe not the eloquent prose and poetry of the past, but more honest and straightforward blog posts about my life in the present day.

Tomorrow I am going to my doctor in Foxboro. A special van with a lift picks me up in my wheelchair and transports me to doctor appointments. This is another challenge, as good driving is required of me to stay on the lift and back up onto it when I arrive there or at home.

Recently, we went to my son and daughter-in-law’s baby shower. We visited their home for the first time and enjoyed the day. But I think it’s going to be the last time I can visit, as having to walk up and down the few steps to their breezeway proved to be almost too much for my weakened knees.

This is a post about my disability. The next time I write, it will be about the baby shower and my expected grandson. He’s due in April.

I just want to say there is life after living in a wheelchair. Rich, wonderful, inspirational life that seizes your heart and catches your breath. The people in my life are as loving as before, as helpful as they can be, and I get to laugh each and every day.

So, tonight while I am writing my emails and listening to my iPod, I will relish the quiet of the darkness and solitude which I find so comforting.

To all of you, may you have a wonderful day.

With Love,

Gail

 

 

 

Thanksgiving Eve, 2015

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Dear Friends,

These past few weeks have been some of the most difficult ones for me in a long time. Faced with almost being unable to walk at night without my leg braces, I have been contemplating going into assisted living.

This is a picture of my beloved Frank. He is the love of my life, my best friend, my teammate in life. He and I talked and talked about my situation, and have come up with a few solutions. I thought that this would be my last holidays at home. I thought I would have to leave my love. I can’t predict the future of my disability, but it is progressive.

I know that I must live in the moment, in the present. As much as I fear the future, I have the love and support of Frank and my sons and daughter-in-laws, my two sisters and my brother. When I live in the past I am unhappy. When I project to the future, I am unhappy. But when I live in the present, I feel the bountiful love and beauty that is my life.

I live in a gorgeous apartment out of which I can see the sunshine on the sheer granite cliff across the way dotted by huge oak trees. I have seen deer, owls, and hawks. A fox walking across the lawn in front of our patio door bode a good omen the night before our wedding last year. And the hummingbirds courted me all Summer long.

This is a special Thanksgiving for me. I can no longer cook a meal, but a neighborhood restaurant is providing us with a turkey dinner, delivered by volunteers. We are having two of my sons, and a daughter-in-law for dessert after they have their meal at their father’s. It will be a loving and fun time, full of smiles and laughter. And I will cherish each moment, knowing that one day in the future I will be in an institution.

I’m writing to encourage each and every one of you, whether you are alone on this holiday or surrounded by friends and loved ones, to cherish the moment. Live in the now that is your life, a gift to you only. It is a gift to do with as you please, to make choices, to rejoice in, to grow. Join with me in my joy of the love and the beauty that is this universe and natural world we live in.

There was a meme running around Facebook recently. It said something like, “We live on a blue planet revolving around a ball of fire in an endless universe, and you don’t believe in miracles?”

I’m not religious, but I am very spiritual. I do believe in miracles because I am one. I’ll write more about why this is another time. Just let it suffice to know that we are all miracles, and the answer to our prayers lie within.

On this Thanksgiving Eve, 2015, I am home. I am loved. I feel the gratitude deep within my heart for all of the blessings in my life. None of us can predict the future, but we all have the present moment to live.

And I am still walking.

With that, I’ll say,

Love,

Gail

 

 

 

 

 

Prose – Another Mountain to Climb

These days I am engrossed in my next big project: the writing of my next memoir.

The title? “Anatomy of a Nervous Breakdown.”

On the cusp of turning thirty in 1985, I suffered a complete nervous breakdown. This memoir is my journey of climbing a metaphorical mountain to recovery and health. There were many mitigating factors, but in the final analysis, I have no regrets about my life choices.

Set in a Victorian institution in the 1980’s, the book offers up huge doses of human frailty, growth and sublime comedy.

My philosophy for writing this book, which I am writing for myself, is that we all have our breaking point. If you’re religious, which I am not, reading it may be one of those “There but for the grace of God, go I” experiences. If indeed truth is stranger than fiction, this book is hitting its mark.

I am being extremely strict with myself about honesty. It would do me no good, assist in no healing, wouldn’t help others for me to fabricate anything within this book. Few of us are as honest with themselves as I am attempting to be. Revisiting this time in my life through the writing of it makes me wonder how I survived, both physically and emotionally. As I write, I am revisited with the pain and horror of my own flawed, distorted, and ill mind of those days. I am also revisiting the love I found in a locked ward. Who would expect through such a human tragedy would bloom hope and love and new life? I didn’t. But that’s what I found.

And I am finding it again. I belong to wonderful writer’s group made up of thirteen or so writers who put their hearts into their own writing to better themselves. They also offer critique and edits and feedback on each piece every person brings in. The side effects of this sharing are kindness, camaraderie, and love. Were it not for them, I wouldn’t have the courage to do what I am doing.

While I was writing my first memoir, “The Girl in the Iron Lung,” I kept a scrapbook unknown to anyone. The marked up pages of my chapters which I received back from the writers were full of comments. I cut out the comments and pasted them into a journal to help me keep writing, to find purpose in the pain of it, and to ward off the loneliness I felt with the memories of my past. I still have that journal and turn to it sometimes.

I think it’s time for me to start another journal. This one will be even more meaningful than the first. Rather than exposing the broken heart of a little girl, I am revealing the depth and fractures of the distorted mind of a young woman.

That woman was me.

 

Love,

Gail