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 I was so excited that I had not become withdrawn this time, and had enjoyed socializing with everyone.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

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 – My Own Private Thanksgiving Parade

It’s been quite a while since I posted anything personal here. I think in my last personal post I talked about my fiancé going through a serious health challenge. As the only thing certain in life is change, so too, have we gone through changes.

First off, Frank’s treatments for aplastic anemia are working and he only needs to visit his doctors at Dana-Farber in Boston once a month. Eventually he will wean off his medication, and in the spirit of Thanksgiving this is a near miracle we are both blessed and grateful for. His humor has endured throughout, and his spirit and tenacity are to be marveled at. He has never complained. Not once.

During the height of the danger of his illness and treatments, we moved in together to an apartment in a neighboring town. Neither of us could move ourselves, though I did pack myself, and we had another blessing of family and friends who combined the muscle and finance and emotional support to make our move possible. I’m giving thanks to all of them, and for the good fortune of finding a place which is like a palace to us.

The environment of the complex we used to live in was dirty and unkempt. I cherish some of the friends I made there, however we had a dream of living together and after six months of research I found our home.

The people here are happy and happy for a reason. It’s gorgeous, it’s wooded, it’s clean, and it’s beyond our greatest dreams. It has aided in restoring both of us in our health, both emotional and physical. Unlike so many at this holiday season, we feel safe and live in a protected place which makes us feel proud. Living in this way gives a person a certain wealth of self-esteem mixed with humility. We are lucky in so many, many ways I only wish for everyone else in our restricted financial position.

Happiness cannot be bought or sold or acquired through nice places to live or hefty incomes. I believe it comes through directing one’s life toward choices which add a probability of happiness, in spite of the challenges within each life. In order to do this we need a clear vision of our goals and the ability to calculate the moves toward attaining those goals one small step at a time.

For hungry and oppressed people, this clarity is usually mired by the strength it takes to survive.

This Thanksgiving I want to thank all those who made it possible for Frank and I to attain our happiness in our two lives shared now as one. You are most cherished and counted among the most broad terms of our support system.

For the hungry and alone, I am thinking of you at all times. This holiday is one of gratitude for me for the health and wealth which surrounds me and I honor you in your personhood and dignity of purpose.

Much Love,

Gail

Flash Fiction – Up

The word is up. The word count is 150.

Mildred had been a shut-in in her studio apartment for years. She longed for her family, now gone. She was alone by herself.

She lived in an elderly apartment complex. Mildred had dreams of going on the Autumn foliage trip on the senior bus with all of the neighbors she did not know.

She was an avid nature lover and even in the darkness of the past years, she had put up a hummingbird feeder.

This is my last chance, thought Mildred. She called and made a reservation, not knowing how she would possibly get on the bus.

When it came time for her to board the bus, she thought of retreating back to her room and chair.

“Step up on my hand!” the bus driver had said to her. Mildred gleamed. A dream of a lifetime. She felt loved.

Prose – Love in a Tornado

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How do I begin?
For the past two months (I only vaguely know how long) daily life here in my world has changed dramatically and is still changing at breakneck speed. I’ve had to adapt quickly and accept things I don’t want to accept. I’ve also had the gift and a promise of a substantially more satisfying life. How can this be possible?

My love has a rare blood disease which suddenly threatened his life. It has lead to hospitalizations and frequent treatments of transfusions in Boston. I recall the day I accepted it. I was beside him in the infusion room and wept for three hours, unable to halt my grief. I wept out of love for him.

Going to Boston for long days of treatment is difficult for both of us. We ride at seven in the morning in a shared van for an hour to two hours to get there. We are usually waiting for another shared van between two or three in the afternoon, arriving home around four or five.

He’s exhausted because of his condition, the treatments, and the trip. I’m exhausted because I am disabled and rely on leg braces and a walker to get around. We have combined emotional exhaustion. It’s an understatement to say it’s difficult.

But these days have a gift in them which hasn’t gone unnoticed by me. We have grown closer, and although he has been my fiancé since March, being together while he goes through this trial brings out our love and commitment even stronger.

We live in separate apartments in the same complex. I have been searching for a two-bedroom we can share which is affordable. Our dream of living together suddenly crystallized two weeks after his first hospitalization. We accepted the offer.

Living in love together will be healing for both of us. But moving at this point in time has thrown us into the chaos of positive stress, too. While he is heavily burdened with taking care of himself, I am feeling inadequate because of my physical limitations.

It will all happen. It will all come together. We have been offered so much help that I envision a smooth transition and a happier life, regardless of what challenges lay before us.

I am putting my money on the best yet to become. In love, together, as one.