loss – Page 9 – Janis Dehler

A True Sister Relationship

Yesterday was a day for my sister, Mary Beth. Acting as her guardian, I attended her annual review. I have another biological sister, Diane, who I travel with, shop with, laugh with, and reminisce, and support each other in many ways. I have soul sisters who enjoy what I enjoy, see and experience life similar to me, sharing each others life journey as chosen family. These sister/female relationships are important to me, helping me to see and understand myself, challenging me to grow, offering the welcome place that needs no reintroduction when there has been absence.

My relationship with Mary Beth is different in that she does not have verbal language or adequate sign language to engage in conversation. In her 55 years of life she has remained at mental age 3 – 4 years old. She was born with an extra chromosome which gave her the label and diagnoses, Down Syndrome. In small town North Dakota in 1962, there were no support services for her or our mother and our family. Mary missed out on the early stimulation that is now begun immediately after birth. Our mother, father and us 4 children missed out on education, emotional and psychological support, peers and mentors who understood the challenges ahead. The family felt and experienced the many emotions and changes this birth brought without the guidance, supportive services and compassion that was needed and our parents navigated the waters alone through some thoughtless hurtful comments made by people who did not know what else to offer.

Throughout all of this, Mary has made herself known through her wants and needs and her personality shines. Sweet is a common word used to describe Mary. A sweetness of being that is at her essence. She is very independent minded, focused, determined, creative, and unique in her style. For years Mary loved to buy jewelry and would daily wear almost every piece. Mary loves to work and stay busy. She will be the one at her day program who with a sensibility of hospitality, or control, will take everyone’s coats and hang them up, take everyone’s lunches and put them where they belong. Mary loves to exercise, especially dance. She loves going out, shopping, eating, and riding in the car. Mary is an artist at heart. She seeks out art materials, has had caregivers who help direct her with painting and creating. Drawing and coloring are soothing to her and hold a special time for her each day. When she was small she used to sit on the floor in the bathroom while I was dressing, doing hair and make up. Mary is a “girly girl” loving to have her hair, nails, facial, any primping will do. Mary has had a long time boyfriend named Bob. He is very attentive to her. At socials he will come get her to dance, until Mary wanders away distracted by balloons or pop, then Bob will find her a bit later for more dancing. Every year they attend prom together.

Mary has a new challenge that has been growing over the years and is the added layer of Alzheimers. Sometimes in the day, her sweetness is hard to find. She is not sleeping well. She now is eating all pureed food as she cannot tolerate texture. When frustrated she will lash out physically or drop to the ground. An hour later, she will be back to Mary as we know her. She has forgotten to wear her jewelry. She lives in a group home and I am eternally grateful for the love, care, understanding and determination of her caregivers to keep her quality of life to what she knows it to be and work with her to soothe and comfort.

This is a hard piece to write as there are so many feelings surrounding this relationship. I can easily name some of them, grief, guilt, joy, love, compassion, ambivalence, affection, admiration, irritation and at times I have felt disgust at some of the behaviors. And, did I say guilt? It is a relationship where enough never seems enough. There is always more to be met. These feelings rise and fall. There is no justification of the feelings, no rhyme or reason, they are just present when they are present. My own acceptance of the feelings makes all the difference. I don’t own any one feeling in this relationship. They are all present and all matter and do not define me or Mary or the relationship. They simply rise and fall.

When I feel guilt especially, I do a reality check and breathe it through. I can no longer enjoy bringing Mary Beth home for over nights as it is too far out of her daily routine. It is too challenging for her and for me. I miss the Mary who was not driven by her compulsions, who was not affected by all the medications. And yet, I know that the change we live through is the nature of life. Everything is change. We change and strive for adaptation. Our bodies and minds age and we seek ways of comfort and normalcy. I do not long for the sweet days when my children were little; I delight in their growth into their mature life. I realize I can let go of the longing for the Mary of the past and celebrate the life she is striving to live. I continue to see the sweetness, continue to hold with compassion this sister relationship that has been part of my life since I was 12 and which continues to grow in its own complexity as every sister and sister/friend relationship does.

Mary offers me the same mirror of relationship as does my sister, Diane, and my adopted sisters as well. We are all here to help each other in our journey of life navigating the waters as spirits in a human body. That is what I offer to Mary Beth and that is what Mary Beth offers to me in return, as we each challenge each other to show up in what ever way we are able, to a true sister relationship.

Posing

The Face of Resilience

The senior apartments I visited yesterday morning were full of little goblins ages 2, 3, 4, wandering from one elder to the next who sat in the entry and had bowls of candy pieces they would drop into each bucket. Then up the children went to the apartments and walked the halls popping in as cats, princesses, spiderman, to bring laughter, hoots, and smiles. I arrived early and was able to sit and take it all in. When the time was right, I went up the elevator and found the woman I was visiting, having recently lost her husband of 60 years, in her apartment looking deeply sad, feeling lost in her loss.

As we talked and she shared with me the story of her life with her husband a smile arose on her lips as she was there in her memory of him when they were young. Her face lit with contented love and then she returned to the feeling of sadness and weariness. So many emotions riding the waves of grief that it can be exhausting yet that is the sign of hope and resilience, we are not sunk in one emotion. We are complex beings and as the building was full of laughter and fun while behind a closed door a woman sat in sadness we also have access to an array of emotion at any time throughout our day.

Sadness, loss, feeling out of step, are feelings that will need to be navigated as she makes this journey and yet there will be a child, an animal, a memory that will call for attention, surprise her in a moment and her heart will respond, a smile may form, a memory of her love will show, a feeling of herself being a child again might delight. These moments are what bring us further and further to the surface so we might catch a breath before we again descend. Each day, month, year, we stay on the surface a bit longer as we attend to each feeling as it arises.

Our natural instinct is to flee from the pain. That is how we are wired. When the pain is so great, we might seek to numb ourselves, deny the pain, anything to avoid. If we can act contrary to our instinct and allow the feelings to move through us, allow the memories to arise, allow for help in the process when it is too great to be left alone, we find that out of the muck, the mud, the rocky soil of our soul the flower of our life rises. There is no time line on how this all moves. It is unique to each individual, to each loss, to each story. The loss is part of our life journey. No more no less. It is what we look back to at the end of our days as we start to name what is of value, what we have accomplished, what we have brought to the world, what we grieve and what we celebrate.

Some choose to make the journey, others do not. Some talk it through others create or write or build. There is no way. There is no judgment. There is no promise. There is only hope for the journey and the renewal of life as we heal. As we daily attend to all the losses that come our way and increase our emotional vocabulary and intelligence we build resilience for the tougher times, the losses that seek for transformation of a soul. Those losses that turn life on its head.

A flower on the Camino rising in the drought and rocky soil

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What Brings you comfort?

It has been a busy week. My daughter’s kitchen was flooded, my mother in law fell, my sister Mary with Down Syndrome and Alzheimers is having moments of acting out, my uncle was placed in memory care and we will visit tomorrow. Client X is raw with grief and planning a trip to “just get out of here.” Client Y feels that she is loosing her faith and belief in God. Client Z needed placing in a mental health unit for protection in his grief. Some days, some weeks are more painful than others.

It is a good day to seek comfort. People, even clients, will ask, “How can you do this day after day?” “How do you take care of yourself?” In my department we ask each other the same question. It is the same question I ask my clients. Tonight I turned to spaghetti, Modern Family, a bath and music. Going for a walk is always good. Some days it is a bigger hunk of chocolate than the usual small square.

I always ask my clients early on in our sessions, “What gives you comfort?’ “What do you seek for support when you are hurting?” Many times I receive a blank stare. Who would know the answer to that question in such rawness? That is a fair response. Who would know when all we want is the one we love? But I let the question sink in. Maybe in a week or a month the body, the mind, or the spirit might offer up the answer. I need to start reading novels to quiet my mind. I need to have some quiet reflection time every morning. I turn on the tv to get to sleep. I like to turn on music really loud and cry. I buy myself flowers as he would have done. I might hear, I have been drinking every day. I just want to go to a bar and meet someone. I turn on the tv and sleep with it on all night. I don’t turn out the lights. It is the only thing that gets me through.

There are as many unique answers to this question as there are people and losses. Maybe comfort is that which makes us feel at home with ourselves. Or maybe it is simply something to help ground us. Or maybe to help us be somewhere away from the pain or to be in a state of numbing ourselves from the pain. In our pain and loss we ache for the familiar to take a break from the new world that is opening before us. To be someplace where we can feel at home and be ourselves. Maya Angelou in All Gods Children Need Traveling Shoes states that “The ache for home lives in all of us. The safe place where we can go as we are and not be questioned.” Away from any judgement and attempts at smoothing things over, both from others and ourselves. The spiral is a good symbol of this journey of comfort as we empty ourselves on the journey in, find our center, sit in peace, allow ourselves to be filled and then bring that which we find back out into the world, into our own soul.

So, it is a good day to remind myself that every home in my community has a story of loss. No one is immune. We can’t compare. Whose pain is worse, more? We each are called to live out our story as it appears. It is a good day to remember that simply looking someone in the eyes and smiling can change the world of that individual for a bit of time. Someone smiling at me gives me a lift into peace and joy. It is how we care for each other, even the strangers that we might be, not knowing what effect we make in the world but always believing we are all of consequence. We all matter. We all make a difference.

At David’s on the way to Astorga on the Camino Frances