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

 

 

 

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

Flash Fiction – Travel

The word is travel. The word count is 150.

Rich was disabled with a dying pancreas, but his wife Sheila provided well for them with a high tech job in Silicon Valley. Sheila was a Buddhist, going on many weekend retreats away from her fatalistic husband. He just couldn’t get his Om in order, or meditation or peace of mind enough to join her. Pain meds were his way of life, and even marriage counseling was failing to keep them from drifting apart. All they had in common were their two cats.

As a last resort, they planned a vacation. They would travel to Alaska to the wilds of North America to reignite their togetherness.

Rich obtained the necessary prescriptions for the trip, and Sheila promised to let loose and leave her Buddhism at home.

Upon returning from a glorious trip with glaciers, wildlife, snorkeling, kayaking, and whale watching they agreed upon one thing. They would split the cats.

Are you flashing yet?

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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.