Here is the YouTube link to Nancy and my’s video the won honorable mention.
I have recently been working on series in mixed media – acrylic, watercolor, stamp, and collage. With golden wings and flower crowns these angels symbolize the mystical, the spiritual, transcendence.
Perhaps one day I will transcend from my weary limbs to appendages that serve a different purpose. Dawning wings that allow for freedom of movement, not stuttered by tremors, cramping or pain. “Looking for angels, calling all angels, seeking angels” all messages that resonate with me. I would welcome aid from the spiritual, the metaphysical, the extraterrestrial, the magical.
Perhaps this deep seeded wish is a sign that change is near. Or, perhaps the wings are what I will imagine as my hands, now that mine are less able.
Flamingos became a part of our family story when my cousin and I insisted that my Uncle Wayne find a new way to mark his crab pots. All we found in the bay marking the pots were plastic milk containers that all looked alike. It took my cousin and I hours to find our family pots off the coast of Camano Island. To solve this issue, I sent him bright plastic pink flamingos to attach to his crap pot buoys. This began decades of gift exchanges. The more outrageous the better. My aunt even devoted part of her otherwise “Sunset magazine worthy” garden to display a flock of questionable flamingo garden decor. She and my uncle have been on the receiving end of countless gifts from friends and family who have joined in the playful exchange.
Wayne is my mom’s first cousin, not really my uncle, he is my cousin. My grandmother was his father’s younger sister. Mum and her siblings grew up with Wayne and his brother. They were two plus years apart in age and shared many family dinners and holiday times together. I use the term uncle as an affectionate nod to way I care about him. I have been lucky to spend a great deal of time with he and his family, especially on Camano Island, where they spend Summers.
My “uncle” Wayne was diagnosed with Parkinson’s disease nearly twenty years ago. He will turn eighty next month. His birthday is the day after mine, November 24. Over the years I have watched him valiantly fight to maintain his independence as the disease has slowly stolen his muscle control and much of his mobility. He had a surgery called deep brain stimulation twice to help relieve some of his symptoms. Yes, BRAIN surgery. He also takes medicine every 3-4 hours to help him maintain mobility. Walkers and scooters help him to navigate the landscape of his life. He has a recumbent bike that he rides as often as he can. It is an exhausting existence to observe, yet he does so with courage and little complaint. He is quick to offer a joke or witty remark, he laughs often, AND he continues to show up despite the challenges. We share a new level of appreciation for one another, a deeper understanding. We share more than a family tree, more than our flamingos. We share our diagnosis of Parkinson’s.
When I decided to participate in a fundraising walk and gathered my team, I named our team, Team Flamingo. Flamingos are a unique bird, bright in color and survive in the most extreme climates, they thrive in the muck. They stay in large family flocks and are very social. Just like Uncle Wayne and me trying to thrive in the muck of an uncurable brain disease keeping family and friends close. The pink flamingo never fails to bring a smile to my face.
This year I participated in my fourth Sole Support Walk raising funds for Parkinson’s Resources of Oregon (PRO). This organization is the umbrella agency that coordinates support groups in Oregon and is a phenomenal central place for anyone to access information about providers, support, respite and social work services. They support the Young Onset Happy Hour group that I co-founded. It was the third year of Team Flamingo. We raised just over $5000. It was a great event full of family, community, laughter, exercise and music. The flock was strong with many other young onset women who share my challenge and make it worth the fight. I am so very grateful for all that participated, donated, cheered for and loved me through another year.
Despite the muck …..WE WILL SURVIVE AND THRIVE.
We use our hands to function well in the world; to put on our clothes, to feed ourselves, to care for those we love. I have used my hands to help mamas bring their babes into the world. I was honored to work as a midwife “catching” babies for over 15 years. I had a collection of photographs of old weathered hands hung on my office wall. Hands fascinate me; what stories might hands hold? What special touch were they a part of? Hands of the aged showing their wear intrigue me, drawing me into what stories they hold. My dream that one day my life, and the work done with my hands, might hold a story worthy of sharing.
After leaving my practice as a midwife, my hands have been busy in new ways– I call this part of my life “Act Two.” In Act Two, they have learned to mix and play with watercolor. They have learned to jab, cross, hook, and upper cut; boxing with the heavy bag, speed bag and mitts. They tend a garden, make jams and can tomatoes; craft wreaths and sew. They move when delighted or excited by lively conversation. They also shake and are weakened by Parkinson’s Disease. New skills and challenges for a new time of life. I have been learning acceptance.
It is a new issue, a new diagnosis, that I am struggling to accept. Both hands are now changing as the muscles spasm and do not work with each other. My fingers, especially the middle fingers, fail to close into a fist. When I sleep, they might clench and are hard to open when I wake. In the car I often appear to be giving people “the finger” while driving because I can’t curl my fingers around the steering wheel. I am beginning to explore adaptive tools to let me continue to drive.
Dystonia– abnormal contraction of muscles.
Since being diagnosed with Parkinson’s I have been attending boxing classes that use high intensity interval training to provide a workout which elevates my heart rate and focuses on balance. We box, jump rope, do push-ups, run stairs, use the treadmill and swing battle ropes. In the last few months, it has been difficult to put on my boxing gloves and punch the bags. Using the jump rope has become nearly impossible because I can’t hold the handles properly. Exercise is a lifeline for those with Parkinson’s disease. This high intensity work out is one of the only things that is proven to help slow the progression of the disease, I consider it my “medicine.” Dystonia is painful and it is becoming more difficult to exercise.
I love my hands and treat them with respect and kindness. I soak, stretch and flex. I slather them with essential oils and rich lotions. I get massage and acupuncture as often as I can hoping to make them feel better.
All this care and they do not work as they used to.
I have made a living with my hands. My second act has been empowered by things I CAN DO if my hands work. I have loved the symbolism of hands and now it is my hands that are the most disabled part of my body.
I understand intellectually that it is the lack of dopamine in my brain that is causing dystonia. Dystonia is a diagnosis separate from Parkinson’s. It can happen to any muscles in the body. My hands, arms, shoulders and torso are affected. Many people with Parkinson’s get dystonia in their feet. It is more common in Young Onset Parkinson’s Disease. The irony that I have used my hands in my profession, I have learned to paint and to box in retirement and now I am slowly losing the ability to continue is devastating to me.
I do not feel ready for this challenge.
It is only in the last year that I have been more comfortable with my new role, retired midwife and empty nester. How long will I be able to use my hands to paint?
I am not ready to give up the use of my hands.
I am stunned by feeling….. disabled. I am grieving. I want my function back. When will it stop? Is this the end of many dreams?
I desperately want to someday cradle grandchildren, to take care of my loved ones, to continue to care for myself into old age. I want to make baby quilts, teach my grandchildren to paint, build sand ca
stles and crochet. I am 52 years old and not ready to need help cutting up my food, carrying my cup of tea, getting dressed and driving.
I feel despair. I am trying to continue to move my body and use the parts that hurt and don’t work well. I’ve started new medications but, have yet to feel relief. Perhaps they will work soon? Maybe new medicines will be developed? Maybe the cure will be discovered? Hope is a powerful ally. However, the reality is that dystonia is affecting my spirit to feel hopeful.
Pain is a constant partner and a challenge for me – deep aching and prickly hot nerve pain that starts in my hands and radiates up to my shoulder and neck. Many nights I take a dose of muscle relaxants to help me sleep. I am actively practicing meditation and mindfulness. I work to accept the sensations. It is a new challenge to not REACT to or JUDGE but to simply BE with the sensations. I work very hard to avoid the dark place of “this will only get worse.”
I try hard to remember that each day that I wake is an opportunity and I am grateful to be here. But sometimes, the dark sets in and the waves of grief overtake me.
Today is one of those days.