Between Light and Darkness
Navigating Caregiving, Illness and Grief
Living With, Moving Through, Shifting Perspectives
By Yasemin Isler
March 2021
Dear reader, you may choose to read both parts or skip to Part 2, if you are not interested in my personal narrative.
Read Part 1, Personal Narrative
Part 2
Some Insights that May Help You
As a foundation of being human, we want to be happy, healthy and free of suffering. When things get hard, our capacities are tested, sometimes more than others. Our natural tendencies keep coming back up. We push away what’s hard, unpleasant and painful; while wishing for, holding onto and even grasping onto what’s good and pleasing. When faced with losses that arise from death of a loved one, a debilitating illness (ours or of a loved one’s), or caregiving, we are placed on the fertile ground of experiencing the unpleasant, painful and even unbearable.
Anecdotally, when I teach classes and guide others who are grieving, caregiving, living with illness or other life stressors, these practices and ways of being resonate. Each person applies them a bit differently. That’s the beauty of choice and empowerment of one’s self. After all, each person is unique. There seem to be some patterns and similarities that show up, too, in our common humanity. May they serve you in a way that is most supportive in this moment and in the future. Please be kind with yourself, let go of expectations of performing well or outcomes. Take it slow and know that you are doing the best you can. You can start with any of the following stepping stones, if another order speaks to you more.
Navigating the Grief Journey,
from an Inner Compass
1 - Belonging
At the root, we all wish to belong and be loved. Many obstacles in life challenge our sense of belonging. Grief, illness and caregiving, can easily make us question where and how we belong. They can be isolating.
Finding our community that can support us through these challenging times is a gift and often a necessity.
It may be strange to consider this; however, we may find connecting with a community of strangers who are experiencing the same type of illness, caregiving, and/or grief may be what we need. Think out of the box and let go of how you think your loved ones may support you. They will do all they can. That may be enough. There is a chance that they will be burnt out or experience empathetic distress and are not equipped enough to support you as they go through their own grief witnessing your suffering.
I have made wonderfully nourishing connections, and friendships, with widows. grieving parents of grieving children, parents of children with chronic illnesses, caregivers, those living with similar illnesses, among other communities I became part of. I could not imagine my days without the community support from these like experienced people who have become my extended support system. They remind me that we belong, in good days and bad. In our common humanity of rich experiences, some of which include suffering, we continue the bonds of belonging, feel accepted, not questioned, less isolated or doubtful that we are on a lonely league of our own. I feel more complete in the fullness of family, friends and extended beloved communities.
2 - Kindness
How often do you forget being kind to yourself, just as you are? Would you treat your friends, family or even strangers the way you sometimes treat yourself? More than likely, we have higher and stricter standards for ourselves than anyone else. Keep being mindful of how you are with your precious self. We need to be intentional and mindful to bring ourselves into the equation of kindness. It may come easier for some. I often hear from students and clients that they have never thought or tried to be kind to themselves, whether due to their upbringing, social conditioning or self-imposed ideas. It may take effort to be self-kind. Even being kind and gentle noticing that fact is a good start.
Rather than figuring out how to get to the finish line of self-kindness, offer yourself mini kindnesses throughout your day and start seeing how you are responding.
Allow making mistakes, turning back to your old habits and begin again.
Kindness includes being kind to our bodies living with illness, aging, how they are now as opposed to what we expect them to be and how we want them to function. Loving ourselves, and our bodies, just as we are, may make us believe that we will not motivate ourselves enough or that we may get lazy. Did you do better with a teacher in primary school who was humiliating you for your lack or the one believing in you doing the best that you could do, even when you made mistakes? More likely, the latter.
Our bodies are doing the best that they can in any given circumstance. I am more grateful for my body now than ever. It has gained weight, aged, and miraculously performs the best way it knows how, whether in allostasis or homeostasis. I don’t have the know of how to control every single cell or organ on my own, including how I breathe except when I control my breath for a few seconds. My body is enabling me to be in this life, at this place and time. All I can do is be grateful and kind to it.
Children can also be kind and loving to their bodies, too. We can be their role models and encourage them to be kind to themselves and their bodies. Letting go of expectations and being amazed at how our bodies are working, to the best of their abilities, is a place to start and keep returning to. The people we are caring for are doing the best that they can; their bodies are doing the same. When our care is as good as possible and they are not recovering as we wish or expect, all we can offer sometimes is kindness and awareness that things are beyond our control, and letting go of the notion that if we can’t fix things we are insufficient. Blame towards our ailing bodies, or of those under our care, is not going to make things easier nor healthier. It may make things worse and unnecessarily more stressful.
Remember to be kind to yourself and how you are reacting or responding to your experiences, whether being ill, caregiving or grieving.
No matter the circumstance, kindness has the capacity to open a window, and let in the warmth of a spring day, during the stress of needing to go against the current of the current events.
It may allow us to be with what is, even when things are beyond our control. Kindness is the antidote to many negative mind states. Try it a bit and see. When you are kind, can you really be angry? And if you are angry, sad, frustrated, or hopeless, be kind to those emotions; allow them to be there. They are normal responses, as normal as being human. We are meant to experience them. We can still remember to be kind to ourselves in the midst of these difficult emotions.
3 - Intention
Our intention will take us places that our plain old mental goals and measurements will not so quite. When we intend including from the depth of our heart, or that emotional space that touches us deeper than just thoughts, we participate in our lives in our wholeness. It is ok to have the intention to heal, to feel better, to be of service to those in need of receiving care. We can set our intention for the best possible outcome, based on the way things are right now. We can intend to be in the best shape that our body can be at this moment, and our desire to be in health now and in the future. Our purest and deepest intention will mobilize us to rise to the occasion, even if that occasion may be not what we planned or had in mind.
Knowing that we, and our bodies, are doing the best, under the sometimes insurmountable circumstances, allows us to receive the care and attention, and accept to be with all that is beyond our control, without feeling guilty or inadequate.
Caregivers continuously go above and beyond what we think may have been humanly possible to keep going. We care and do the work of humanly love to alleviate the suffering of another. We start from the unspoken intention of to be of service. Stay grounded in your intention to give comfort, to support, to love, to be present, knowing that is the only thing within your control. Stay in that intention whilst keeping in mind that you are one part of the cogwheels of life and you are not the entire system that can affect everything else. Let go of guilt of not doing enough and focus on loving and caring the best way you know how.
4 - Acceptance
Acceptance often feels like a very passive and defeating word. We can look up what it means in the dictionary, yet the sense it gives to most people is that it makes us weak. It begs to be explained further to clarify what it really means to be accepting. When we accept, we are not necessarily agreeing with anything. We may in fact find the situation completely unjust or unfair. We are still aware of what is here, as is, what is not changing, whether we agree or not. We are noting what is happening. The current is already moving in its direction, and we are becoming aware of this movement, whether we agree or disagree.
We can experiment with acceptance gently, initially, if the situation is not in our favor by any means. We may, for example, just note what is happening or what our reaction to it is. If there is a way to shift things, by all means we can do so. We can also note when we just can’t shift things or change them, letting that into our awareness as well.
Sometimes, it is too hard to accept, especially if we are grieving a tender loss. Be gentle, slow and kind.
Sometimes, if we can be with what is, we can invite ourselves to be with it, in small quantities. Eventually, we may notice that we are ready to turn towards it a bit more easily and be with it for longer periods of time.
Remember being kind as you move through this acceptance practice. You don’t have to be accepting all at once. If on the other hand, fighting against the current seems to be a regular pattern or habit for you, become aware of that and start noticing whether it is serving you.
5 - Loving Awareness = More Mindfulness and Compassion
Bring loving attention and awareness to your experience. Notice whether you are judging yourself, or another person (the one you are grieving or the one you are caring for), or the event itself. As if you are holding a baby in your arms, or a baby pet you care about unconditionally, approach yourself, the other person, your experience with tenderness, and loving awareness. Aware of what is here and kind towards the ones experiencing it.
6 - Wise Balance & Equanimity
When we let go of our expectations to be able to control all and everything, we begin navigating into the territory of a balanced wisdom. Keeping the experiences in lightness may not always be possible. When our minds and hearts are in the right place, and we are in control of our own actions, that is simply the most we can do. The rest is not up to us. That may be hard to digest, especially when we see our loved one suffering, especially if that loved one is our child. We have the right to be angry, upset, frustrated, even hurt. It may be impossible not to take this all personally. How can we remind ourselves in the midst of the grief that we are not the only one who is experiencing a similar situation, or that no bigger power in the universe is out to hurt us or our loved one?
Practicing equanimity of being with what is, not only the good but the most challenging, is one of the hardest things to do as a human being. The more invested in a relationship or an event we are, the harder it becomes to stay equanimous when it’s just too hard. So, we may need to accept sometimes it is just too hard and not be hard on ourselves that we cannot find the balance and accept everything as is. You can start this practice slowly as well.
Notice the little things you can’t control, like the weather or the traffic and be ok with them whether they are ideal or ‘miserable’. Slowly extend your awareness to things that are more challenging.
Notice you are doing the most that you can. Notice that things are beyond your control. Notice you still love fully, desire the well-being of your loved one fully. If nothing else is working, refocus your attention on love, kindness and what is right, as you slowly expand being with things as they are. And as often as you can, return to love.
7 - Allowing and Being with What is
When we hold things in our awareness with love and kindness, we may notice that something, beyond just our basic thoughts, is at work. You may call it god, the universe, your higher consciousness, your sub conscious, or a larger consciousness beyond just you. Sitting quietly, without expectations, noticing your breath or another anchor in or outside your body to ground and settle you, just being here, in this moment, you may notice that time shifting and your awareness expanding. Each moment becomes precious when we sit with what is, when we are loving a person we care about who is ill, and there is a moment of stillness when things are quietly allowed.
I remember caring for both of my parents when they were ill and for my husband, the moments when I was simply there for them, with them, experiencing alongside them an illness. I was experiencing from my point of view. I was not expecting the next moment. I was rather being in the moment of whatever would unfold next. When they had comfort, and the moment was peaceful enough, and I did not get carried away thinking into the future of their life ending, I appreciated that one singular moment, fully experiencing it with my senses. Their bodies breathing, the light and color of the room, the sounds, the smells, my own heartbeat. Letting go of planning or expecting and allowing to be with what was, as it was, because that was the moment as laid out in front of me, I think, created more peace and calm within to respond to medical alerts with a clearer mind. I also created memories that remain, of peace and calm and of love.
In the moment, being with the moment may be hard. Especially seeing a dear loved one, maybe even our child, suffering, or being different than how they used to be. That moment keeps passing into the next moment, but you have control over how you respond to just this now.
When things get too hard, pause and ground yourself in the present moment.
Reconnect with your body. You may a teacher to guide you how, initially. Notice your thoughts and reactions taking over. Connect back to your breath, your feet, your hands. Look out the window and rest your attention on a tree or nature, if that’s available to you. Ground yourself even in three breaths with where you are now. Or find your here and now stone. I find myself rubbing my old necklace, noticing its smooth surface, temperature, the curves of the silver spirals attaching it to the chain around my neck. Coming back into the here and now, from my stories of the past or the worries of the future, being with what is here. And loads of love.
8 - Listening to the Wisdom of the Body
Our minds plan things for our bodies often. We want tour bodies to look a certain way, to perform in certain ways.
We often think of the virtues of mind over body. This is a reminder to also remember the wisdom of the body.
We often say “the issues are in our tissues” when we teach meditation or practice anything that focuses on somatic awareness. Our emotions are reflected in our bodies. If we start paying attention, we may start noting where we held certain emotions in our bodies. This can be fun; it can also be traumatic depending on our life experiences. When you are ready to approach it, my recommendation is to do it with an experienced teacher or guide.
Our bodies are wise to function in the best way they can. My own and my son’s illness, and many millions who are experiencing ME/CFS, is to take the cue from the body. This is one illness where over exerting the body has dire consequences. The term is post exterior malaise. For a period of time, it was thought that the illness was cognitive and deconditioning of the body. So, a treatment protocol was created that included gradual exercise therapy and CBT. My son was initially prescribed this treatment as well, where the physical therapist was guided to keep making him exercise more over time and increase his heart rate and aerobic activity. After a few PT appointments, my son fully crashed, the crash lasting a few months. This has been a common symptom among many unfortunate ME/CFS patients. Since the initial release of the research study, it has been debunked and made public that the results were cooked. Luckily GET is no longer a treatment of course, for most. All along, ME/CFS patients have been benefiting from prolonged rests, and some are lucky to slowly get better, while some remain incapacitated. I hope that my son will be among the lucky ones.
He is fully aware of the needs of this body and rests when he needs to. We are both aware that forcing his body to do an unnatural act will have only dire setbacks for weeks. He is also very aware of his body to recognize how his emotions are showing up in his body, Practices such as a mindful body scan are supportive for him, myself and those I guide through. They may be ways to help become more tuned in with the body. For those who need to move more, movement that incorporates mindful awareness, yoga, mindful walking, Tai Chi, Qigong are wonderful to consider. If nothing else, see if you can note when and how your body wants to rest, sleep or move and attend to that.
9 - Cultivating Joy, Resting in Gratitude
We have many joyful memories of being at the beach, a vacation destination, time with friends and family, cozy time at home, Omega Institute (one of our favorite places to be), or simply resting when needed. Sometimes, we are both bed bound, as happened a couple of times over the last year. We managed to laugh a lot, making jokes, watching funny mini shows. If not laughing, we focused on what was still right for us, even when others may have looked at us and felt sorry. We had things that were going right in the moment.
Cultivating joy does not need to focus on special occasions that are deemed to be perfect in our minds.
When we set the bar up high to experience joy in only such rare occasions, we spend our wheels trying to get to that unrealistic or scarcely available destination. What makes you smile, laugh or enjoy the moment in the midst of any day? If nothing else, what memories can you relive, in order to reconnect with the joys that you lived in the past?
Being grateful is the same. It is not meant to be nor need to be complicated. We may be conditioned by social upbringing or lived experiences to assume that things have to be top notch in order to be grateful. What about the times they are not? Does that mean we need to wait for the unattainable, once again, that may come up sometime in the future, or work ourselves up to unreasonable heights to save gratitude for a moment that may not arise? Hopefully, you agree that we don’t. Just keep noticing your default mindset. Are you naturally noticing more things to be more grateful for? If so, continue with this way of being. If you notice that old habits keep landing you in noticing more of the negative, know that this is normal, and you may need to work at cultivating gratitude before it becomes more natural.
Whether you start journaling to list your gratitude for the day finished, become aware of the joy and gratitude in the moment. We are wired for negativity bias so you may need to spend some extra time noticing all that is right in your day. Smell the smells, see the colors, shapes and beauty around you, the eyes of your beloved looking at you, a leaf slowly growing on a tree branch, the sound of each wave contacting the beach, bird songs, warmth of the sun, whatever gives you a moment of joy. Stay with it and feel alive. Let is wash over you; feel it in your body. Stay with it as if it’s the only thing present. Install in your memory bank all the joys and grateful moments that you can, when you can.
10 - Forgiveness
When my husband died, I was heartbroken. It was hard to digest in so many levels. While I won’t get into the details here, what made me cross over a threshold of healing was to forgive the event of his illness and dying, and how he and we experienced it. I was lucky enough to be suggested this by a healer who noticed where I was initially stuck, on the event itself. I felt that we have done all we could and it still did not result in his coming back to health, his vibrancy and living beyond the age of 51, to enjoy with his beloved young son and wife.
It is often that those who are grieving, caregiving or ending up with an illness, feel the guilt of not having done enough or not doing the right things. We may be prone to inflict guilt one way or another, on ourselves or others. Guilt may be a way to gain control over things when we cannot otherwise control the outcomes. Remember the part about not being in control over everything, even if we try? Let guilt go, if it is not your doing, and when much bigger circumstances than you had a role in the experience. If you feel that you could have done better, still recall what you knew at the time. You more than likely did the best that you could do at the time.
Forgiving self, the other, the event, are thresholds to move us through healing of our hearts, bodies and minds.
Forgiving self, the other, the event, are thresholds to move us through healing of our hearts, bodies and minds. They are practices of letting go and letting be. Start with something or someone easy to forgive. Start with asking for forgiveness about a small thing you did. As we shed the weights of burdens and guilt, forgiving offers us a sense of lightness. All is forgiven. All is to forgive. As a gentle reminder, say sorry more often. Slowly, as we become more aware, we may notice that we also learn to be aware of our words and actions, perhaps to have less guilt trips to create. Still, be kind, and remember, to err is human.
When I was once mentioned as a tender teacher, I didn’t know what to make of it. I remind myself that I am often traveling the path of grief, bereavement, illness and caregiving in my work and personal life. I suppose it is an ok place to start with tenderness. I recall my beloved teachers and the ones I lean towards are the ones who are wise, tender and smiling at me, from their heart. We look up to other people as our teachers and yet we are our own best teachers, as much as the next person at the super market counter who may be teaching us something about life, and vice versa. So, what I offer here are just suggestions that seem to work, over time, in one way or another. While you are figuring out how to navigate your grief journey, whether as you bereave, live with illness, give care or experience another loss, be kind and tender with yourself. Navigating this territory is are from one and done; it is a process. Be patient and allow yourself to go slowly.
With Love,
Yasemin Isler
March 25, 2021