Know then that the body
is merely a garment.
Go seek the wearer, not the cloak.
I put on a shirt this morning. One pleated in the back to comfortably fit my narrow shoulders. Shoulders that are narrow because I do not sit up straight. My back has been curved for most of my life. This is just fact – something I have adapted to along the way.
I have spent a lot of my life adapting – adjusting over the years to changes as my joints and muscles have tightened. It is part of living with a disability. Every day I have a choice – to wake up with a sense of ownership or frustration as I prep for my day. For almost 60 years I have been able to balance ownership and frustration. No reason to fight it – and certainly no interest in feeling sorry for myself.
Then there are the times when a sense of loss washes over like a wave. I met that wave this morning, grieving my unexpected losses.
It was as I put on a shirt. One that used to fit comfortably. In a second I felt a longing for my body of the past. Clearly our bodies change over time. Aging has it’s on way of sculpting and re-sculpting. Yet when these changes include two mastectomies it requires a certain type of adjusting – a more practiced way of ownership. This ownership takes courage – a lot of courage. There is work in facing a truth each day. A truth reminding me that part of my body has drastically changed. Sometimes it takes more work than others but each time a decision is made to take a step forward and forge ahead.
I have always looked at my future through the eyes of possibility. Seldom have I faced an obstacle that did not have an alternate path. This is the way I have lived and live today. Each morning I know at my core that the mirror before me reflects a whole person. Physically altered by surgeries and age but whole.
So I try to be gentle with myself when I meet the sunrise with the feeling of sadness and loss. Life is not a race to avoid oneself and there are moments when it is important to pause.
This body, my garment, has needed patching. The words from Rumi instruct from without and within. As the ‘wearer‘ I am grateful to understand the difference between being a whole body and being a whole person.
Gratitude that can often change the course of a day.
Quote and photo from Rumi Facebook page
We are not permitted to choose the frame of our destiny,
but what we put into it is ours.
Destiny’s frame may not be chosen but there is always a way to stretch its boundaries. An example is the image within the ‘frame’ reflecting my life, a life filled with curiosity and grace. Many would not believe what I have packed into my own frame and there is still plenty of room.
It is important that I begin to reflect on what ‘fills’ my frame acknowledging those who have assisting me in this work. Much of my journey has been achieved with companions willing and strong. Each day someone walks through my door to assist me. If I tried to list the names of all these companions/caregivers we could very easily end up with a small town! From nursing students to professional barrel racers (cow girl and her horse), from women who were native to Switzerland to women who have barely been outside their small, rural American town.
Germany, Sweden, Latin America, and across this country – I have been introduced to the world in a most personal way. I have learned to be surprised by nothing even when I hear the care assistant say she received her first gun at 10 (probably not the most shocking but something that can be shared). I have learned to listen, been counselor, presided over marriages and sat by hospital beds and joined care assistants in funeral homes as an advocate or a shoulder for support. Boundaries — oh yes, it is a task to keep boundaries clear with those who work with me day in and day out. Their job is extremely personal which often requires living with ‘grace in the grey’.
This is a community of people who continue to ‘walk’ the road with me, joining me as support to be independent. Their diversity keeps me on my game. Their willingness allows me to continue my work stretching Destiny’s frame. Their presence reminds me to remain grateful.
for those who have already seen this post, please read again – the wrong draft was published!
these are the wisest of words. having lived with a disability since birth I understand they describe so much of my way of living. while adapting, adjusting and adapting some more, I have been no stranger to the concept of acceptance. each step on life’s way I believe a choice is made, an attitude checked. my passion for life and all of its adventures has always taken precedence over doubts or discouragements.
this is a good thing but to say that I never get discouraged or tired would be a lie. acceptance can take a lot energy.
natural- right? of course.
adjusting to changes can take a lot of energy – this is not to be taken lightly. just like people’s tolerance for pain may vary, such is true for a person’s ability to adapt to changes. there are times when one must slow down and re-set. my re-set often involves time for prayer and silence, care and support of friends and family and an ever growing ‘gratitude’ list.
acceptance is an active word. each day I awaken to begin anew and at that moment know I have a choice to live through the day putting acceptance in motion. it is so much better for my body and spirit. without acceptance the day can become a battle leaving me bruised and exhausted at the end of the day.
so on this second day of 2016 I am grateful – for people like Michael J. Fox who live life to the fullest. he has shown many of us how to accept a situation and figure out how to move through it.
prepared to accept what comes my way, I am grateful for new beginnings – be they a new day or a new year. Welcome 2016!
Within your heart, keep one still, secret spot where dreams may go.
Awake at 4:30am, I wonder what has stirred me?
These past weeks I trained several new caregivers. Many hours have been spent sharing personal details and staying very alert to our every move. This type of training is much like dancing – together we learn the steps and build the trust needed to lead and follow.
Then there is the introduction to my life. Where is my family? Why did I move to Asheville? Do I like to shop, read books, watch tv… Questions begin to slow when I explain my vocation — an Episcopal priest, where I have lived — from the East Coast to the West Coast, my schedule — time for quiet, prayer, writing projects, workshops and meeting friends for food and fun. Most caregivers are not accustomed to working with folks like me, active people who live with a disability. It takes a while to get oriented. My job– to be patient. Be patient and remember to protect the space for my dreams.
I have a dear friend who once asked how I managed to have any privacy and time for myself. She watched my life as it always seemed filled with people. People, who by necessity, must be in my rooms and touch many of my belongings. She could not imagine how I might find a way to have private time and space. “No one caregiver knows everything about me.”, I replied. “Somehow I am able to create a space that allows for privacy and solitude.”
This is not to say that finding private time is easy. And so I return to my opening question:
Awake at 4:30, I wonder what has stirred me? It is my alarm for peaceful time alone. When most of the world still sleeps, I awaken ready to revisit my dreams. My eyes open to discover a moment when images and ideas can rise to the surface and find expression.
This time is never taken for granted. It has to be honored. All of the people who assist me with the details of my daily life rely on my ability to find these moments. It is time to remember my dreams and find ways to bring them to life.
I welcome this opportunity and give thanks for a new day.
When we begin to believe that there is greater joy in working with and for others, rather than just for ourselves, then our society will truly become a place of celebration.
I see myself in the picture above. No one would argue that each step taken by this child equals the strength of a million men – especially in his young body, mind and heart. I remember the struggle pulling each leg through to complete one step. Even when the last step felt impossible, the person by my side gave the extra push by their own excitement and praise. Without that support and persistence, who knows what my future would have looked like. Out of necessity I have redefined achievements along the way. It has taken a ‘village’ of supporters to keep faith, confidence and hope as motivation.
“When we begin to believe that there is greater joy in working with and for others…” Words worth so much! To see a need and offer what we can. To listen and share the hopes of others. By doing this we are nurtured in a mutual way. We are united with a sense of responsibility and gratitude. It is easy to see a situation like this and understand the need for a supportive and creative community.
These words are against the grain, there is no doubt. From TV to self-help books and teachings, we are conditioned to always place ourselves as first in priority. Look around, how can we be drawn toward a life where we share our resources and receive the gifts offered by others? To make it clear, we are not talking about sharing what we have with “those people” out beyond us. The quote above by Jean Vanier speaks of a particular way to share and work — a way that brings mutual benefit for all. If any time in our history has cried for this type of sharing, it is now.
Today — I celebrate twenty years as an ordained priest. Reflecting on one’s experience in ministry can be a risky endeavor. I share these thoughts inviting the wisdom and insight of those who read this blog.
My life as a priest has been unique and filled with surprising moments. On a day such as this, many of these memories greet me for celebration and reflection.
We planned my ordination for May the 8th to correlate with the feast day for Dame Julian of Norwich. A holy woman – devoted and faith-filled, Julian lived in the middle ages during a time of plagues and war. While struggling with a life–threatening illness she experienced a compelling and personal encounter with God. Surviving – she knew the gift of health and life and vowed to live a mystic’s life. Most of her adult life was spent living in a small room connected to a church in Norwich, England. Like an anchor to a boat, Julian anchored herself to the church. From her room, through a small window, she met and counseled people who came to her, offering comfort and holy wisdom to the village of Norwich and beyond. Within one room, she counseled those in need, spent hours in prayer and put into words her insights about God’s love and mercy. These writings would come to be known as: Showings – The Revelations of Dame Julian of Norwich. It is believed that she was the first woman to have her writings published in English.
We planned my ordination for May the 8th and welcomed the communion of the saints led by Dame Julian. Twenty years later I find myself curious about the connection between my ordination and Julian’s feast day. Being a woman and a person with a disability, living my life as a priest would present unknown challenges for me and others. As time has passed I know my ministry has been filled with courage and grace. Courage–unashamed of my differences, I have entered doorways into churches and homes that had previously not been opened either to women or people with disabilities . Grace- all has been possible through a vision beyond me.
Anchored in her one-room home, Julian of Norwich shared her wisdom and faith with confidence and compassion. Her story has been encouragement and inspiration for me. I know something of being held in one place–anchored if you will. From this wheelchair I have been present to people in their joy and sorrow, prayerfully spreading God’s good news.
In many ways twenty years is just the beginning! What have I learned up to now? I have learned there are many more questions than there are answers and much of our time is spent learning to live with the questions. I have learned that while we live in a world wrought with anxiety, people long for the presence of peace–not a lot of words just peace. I have learned that miracles do not always manifest as we might have envisioned but miracles they remain. I have learned to be grateful for hope and honesty in moments of despair.
Most important, I continue to reflect on the wisest words ever shared from Dame Julian. “All shall be well, all shall be well, and all manner of things shall be well.” We do not get to know how life’s story ends. Carrying these gentle words along the way has brought light for the journey.
I know this child. I was she. With few role models to begin the journey, I faced my own mirror and saw a ‘dancer’.
There was no textbook for how family could raise a disabled child with confidence and opportunity. In the late 50s and early 60s few families had the support of established organizations nor were encouraged to meet with one another to share their struggles and successes.
Blessed as a child I knew few limits. My memory takes me to friendships and fun. My memory takes me to travel, family, school and all things that nurture the imagination of a child. The limits that were obvious became challenges (puzzles) to solve. The world was before me and all I wanted to do was move through it with the spirit’s music and rhythm. There were plenty of times when I needed that music to cushion and calm. Every child has to face the hard edges of growing up. These edges were particularly unique for me (as they are for any child growing up with a disability) – I entered the world of medicine, doctors and surgery at a very young age. Recovery from multiple surgeries was hard but to go without I could not have moved forward. So, there was never a question – recovery it was. With encouragement and love from parents and friends, I made my way through those young years and into an adult life filled with opportunity.
“Dancing” takes on many forms and the steps change throughout a lifetime. Ordained an Episcopal priest, I have the honor to lead the steps in faith’s dance, through the grace offered by God’s spirit. Now retired, I am testing the next steps in this dance. Again, the textbooks are few for what the road ahead should look like, which is a good thing because my style would most likely challenge any expectation. As many readers know, I have recently moved. Along with settling in a new home, I am meeting new doctors and other practitioners on a regular basis. To my surprise, there have been several moments when I have been thrown back to hard edges of my childhood. While recently meeting with a new physician, I made mention of how grateful I was to be so ‘healthy’. Her response – ‘yes, you have few immediate health problems which is good. You are in pretty good shape to be so ‘broken’. ‘Broken‘ – a word I have never thought of when describing myself. I may be able to understand her intent but the word used was hurtful.
That same confidence that carried me through childhood, the confidence that knew few limits, is still ever-present – ready to redefine and move ahead with the dance that is before me. I take these new steps grateful that I know the difference between being healthy and being whole. Like the image of this tiny dancer — it is not about seeing the broken – if that is all we see than we miss the beauty before us. She has all she needs.
I know that child, I am she.