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 I was so excited that I had not become withdrawn this time, and had enjoyed socializing with everyone.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

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 – The Bright Side of the Moon

The last time I posted, I was bogged down in what I cannot do anymore, and losses which were out of my control.

I have those spells, particularly from November through January of each year. It isn’t seasonal depression, I love the winter, it’s more of an anniversary reaction for the time I spent in the iron lung so long ago.

As I could have predicted, my malaise has passed with January’s passing and I am now living on the bright side of the moon. Physical problems have receded into daily routines, and I am once again loving, laughing, and playing my days away.

It was a dramatic shift. After months of feeling like I weighed 2,000 pounds and couldn’t lift my head from the sofa side, I feel energetic and in control of what I am able and wanting to do each day and night. Over the course of one weekend, the compass turned 180 degrees.

I am happy.

But credit is due where noted. Frank came to my therapy session and the two men, through some magical act of osmosis became ancient tribal medicine men and healed me in a fortnight. Sure, I had something to do with it, but honestly I was falling deeper into the pit than I have in over ten years and suffering immensely. At the time of my last posting, I really couldn’t separate my emotional deadness from my physical obstacles. I think this may be true for many people who suffer chronic illness, with or without pain. Yes I have that too, but I have a new approach to pain as well, and am avoiding most of it by conserving my physical and emotional energy. I have that luxury over others who have true chronic pain syndromes. My heart goes out to you.

I began my recovery with Frank and Peter and went on to start doing small things against my tendency to isolate. I visited my new neighbor and stayed and talked. She seems unhappy, but it didn’t sway me and my forward motion to feel better. She’s had a lot of real life loss as well, and it helped to feel not so alone with it.

The next day I made a bracelet. I had had the materials for over a month, and was unable to do that which I find such pleasure in when I am in a level mood. It’s a genuine blue sapphire and fine silver bracelet. All of the silver is handmade either by the Karen Hill tribe in their family forges in Thailand or by Bali craftspeople. I seek out these people to buy from to support their efforts at self-sufficiency and creating beautiful works of art.

The next day I used materials I had had for three months, and created a glass and crystal light blue necklace with an Italian hand blown Murano butterfly heart pendant and large silver heart shaped clasp from Bali. I still have the matching bracelet to create.

I go on about this because right now this is my affirmation of life. Creating the jewelry gives me a purpose, an artistic outlet, and something about which to feel accomplished. It’s meditative, it’s spiritual, it’s the real deal for me.

I hope by reaching out to you, you find an affirmation, too. I recall when I was in the iron lung at age five, I learned to paint on a paper using my mouth to hold the brush. I know a little about finding purpose and self-expression in life in a movement toward joy.

Until then,

Gail

Losing Time

I had paralytic polio at the age of five in 1960. I recovered fully and went on to raise a family, climb mountains, and live a full and exciting life.

In 1991 I was diagnosed with post-polio syndrome and put back into leg braces and was told I would experience slow progressive weakness and fatigue. I have.

I use leg braces and a walker and have an power chair for being in the community.

I am a writer and a poet and have published books and created some beautiful jewelry as well.

I never expected to be homebound, though, and here I sit on that threshold, not just unable to tolerate the fatigue of going out, but coping with immense fatigue without any exertion at all.

My days are being stolen from me. I sleep an average of five to eight hours a day now, and am very weak when I am up.

I am frightened, I am angry, I wanted more time just like the rest of us.

We never know when time will be stolen from our wishes and plans for our days.

I implore you to take the risks you have been thinking about now, before something unseen comes along and takes your time or energy away.

That’s all for now,

Gail