One year is not enough –
but all we have is now.
I have been held by you
like the earth clings
to the sapling’s tender roots
so it can reach for the sun
and blossom, however briefly.
In Gaia’s day.
One year is not enough –
but all we have is now.
I have been held by you
like the earth clings
to the sapling’s tender roots
so it can reach for the sun
and blossom, however briefly.
In Gaia’s day.
As long as I could remember, my mom dominated the house with her rules. She was a strong creative, and a very complex woman.
From the time I could talk, I’m sure, there was the no talking rule and no laughing rule. To talk to her or to laugh would bring upon one of her rages, especially at the dinner table. I learned very early on not to laugh at home, and there was no humor in my parent’s relationship with one exception.
With her friends, she was a different person. She laughed, she flirted, and she played. I observed this in astonishment, because this was not the mother I knew. My parents had monthly parties with their group of friends, and they drank and laughed and made sexual innuendos with each other. At home, quiet was the rule and I was to stay in my room away from them and not bother them.
I have always been attracted to funny men. They let me play and laugh, which was downright dangerous as a child. They were free of the rules I had grown up with and I love to be made to laugh, even at my own expense, because I know how serious I am.
I have also had a lot of serious things happen to me. I almost died from polio as a child and had to endure the torture of painful physical therapy to get well. I spent a whole summer in full leg casts.I had a surgery when I was ten for a tendon transplant in my right leg. I was brutally bullied by the neighborhood boys and girls as a disabled child. There was nothing funny about my childhood.
I developed bipolar disorder and suffered. I married an abusive man and acquired PTSD. I was plagued by nightmares, flashbacks, and migraines almost daily. I was diagnosed with schizoaffective disorder and succumbed to psychosis at times. Later on, I was diagnosed with breast cancer and have had surgery twice for it. There was very little that was funny about my adulthood.
Then I met Frank. He was funny. He poked fun at me, and gave me the permission to play. He taught me to enjoy watching and laughing at comedy. He is the perfect yin to my yang. We’re a lot alike in temperament, but I get the added bonus of having his jokes to laugh at, and his tickling to squirm from.
When I met him, I knew he was fulfilling a lot of childhood needs I had that had gone unmet. His physicality and gentle stroking of my cheek filled a void that the absence of affection in my childhood had caused. His patient listening made me feel valued and heard, even though what I was saying was trauma related and frightening oftentimes. I was badly broken, and he told me I would heal. I hung on his words more than he knew.
He was right. I have healed in a lot of ways. But I am still serious, and a deep thinker. Frank even teases me about my thinking, telling me that it gets me in trouble. He’s right, but a lifetime of thinking doesn’t get turned around in a few years.
Today I can laugh without fear of retribution. I still have trouble making jokes of my own, but that’s okay. Sometimes I think Frank would prefer a funny woman to joke with, but he chose me for reasons of his own, too.
He rescued me in more ways than one.
I hope you have someone to laugh and play with in your life today. Life is short, and laughing is as emotionally necessary as crying to cleanse the soul. There’s nothing like a good belly laugh that causes tears to run down your face.
Are you a funny person? Do you have someone in life to joke and play with? Was humor a big part of your upbringing?
When I was fifteen, I suffered my first depression. My creative writing teacher sent me to the guidance office because he was concerned about the content of my writing. I was relieved to see the counselor, and told her my feelings and the fact that my brother had just been arrested for heroin possession and I was afraid he was going to die.
I went home that day and told my mother that I had been sent to the guidance office. She flew into a rage and screamed something about never talking about our family to anyone. It was the first chance I had of getting help for what would later be diagnosed as bipolar disorder. And because of my mother’s reaction, it would be fifteen years and take a nervous breakdown and hospitalization before I actually got the help I needed.
Bipolar disorder is marked by periods of clinical depression which “swing” to periods of mania or expansive and high mood. In between there can be periods of normal mood and activity.
Depression is marked by hopelessness, suicidal ideation or attempts, and excessive dark thoughts and excessive sleeping or the inability to sleep. It is difficult to take care of oneself, and one often lacks the interest in doing so.
Mania is marked by elevated moods or a period of “highs” which may include pressured speech, irritablity, excessive physical activity, risk-taking activity, promiscuity, spending sprees and high creativity. In severe cases, there can be psychotic episodes.
23.3 million people in the United States, and 60 million people worldwide have this chronic mental illness. It may have familial roots, and affects the chemistry of the brain.
The treatment is often a combination of supportive therapy and pharmaceuticals. Some patients stop treatment thinking that the illness is “gone,” but it is chronic and incurable.
Now that I look back, I suspect that my mother may have suffered from manias, being excessively active and creative and also bursting into unprovoked and unpredictable rages.
But I don’t suffer from that. I am what you would call a highly controlled person with bipolar disorder. I have my mood swings, sometimes extreme, but I also cycle quickly into and out of the swings and am able to remind myself that this, too, shall pass.
People with bipolar disorder do suffer greatly, but for those whose creativity and productivity is boundless during the “highs,” it can also be felt to be a blessing if it contributes to their art.
Bipolar disorder can contribute to high success in business, comedy, acting, music, writing, and art. Many famous people have and have had the disorder and gone on to success in their chosen field. They are exciting people to be around, with infectious humor and flights of ideas.
If you suspect that a young teen or twenty-something is suffering from bipolar disorder, offer support without judgement, and the opportunity to get professional help. Many suffer needless years because of the stigma of mental illness preventing them from seeking help.
Do you know someone with a chronic mental illness? Have you been reticent to talk about it with them?
I went to college in my thirties after I divorced my abusive husband. It was a tumultuous time, but so rich in personal growth. I was recovering from a nervous breakdown and four months in a psychiatric hospital. I was beginning to feel the effects of post-polio syndrome, but mostly just fatigue. I was not interested in dating; only in writing and raising my three sons.
At the university, I tried out various majors, starting with English and Music. I had been writing since I was ten and had been a flautist for just as long. I took flute lessons and saxophone lessons, and got good grades in both. But when I took a class in Chaucer and failed, I decided to change my major to Psychology. I minored in Anthropology.
My children knew it was stressful for me to be commuting and working and trying to study. I had bought a one-bedroom condo, and had bunkbeds and a single bed in the bedroom for them. I slept on the sofa in the living room. I had sold my childhood home to my ex-husband because merely being in the house caused severe depression and it held so many childhood ghosts for me.
I had offered to split custody of the children every other week. Joint custody was the law in Massachusetts, and even though I thought my ex was cruel, my therapist insisted that they needed both of us. I also dropped the criminal abuse charges I had made against him in the interest of not involving the children in a lengthy, drawn out court trial.
This is a picture of me and Eric, Jesse, and Ethan at the National Seashore on Cape Cod. It was the last vacation I would take with my then-husband. This is my favorite picture of me with my children. I was happy and for a moment, without burdens.
This picture was taken in August, 1984. When I see what I have been through and where I am now with the love of my life, I am amazed. Now my children have children and and I know that they survived their tumultuous childhood.
I still have a therapist I see weekly. My own childhood and first marriage and mental illness need attending to. Some day, I hope to be strong enough to leave therapy. But for now, it keeps me afloat on the ocean of my dreams.
Have you ever thought of writing your life story, or a chapter of it? Has your perspective changed over time? What might keep you from sharing your story?
How across the universe you found me in my darkness,
a child in the corner of the room.
Through the years you visit me and reach out a hand
to touch, and linger on my words.
However disorganized my thoughts became
or truly navel-gazing, you came.
“To lighten up, even the darkest day.”
Thank you for your kindness.
Thank you for following me.
Most of all, thank you for not forgetting me.
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.
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.
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,
On 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.
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.