Yael Shira

@yaelishira | contributor
Hi friends, My name is Yael and I am happy to be here :) For a long time, I quietly read articles from The Mighty, especially as I was navigating a new MS diagnosis with additional chronic illnesses from childhood. Writing for me has been a form of healing, and yet I kept meeting internal resistance when I thought about sharing. The resistance still comes up, but the desire and purpose supersede it. We heal through self-expression, and even more so when we are with community. I am looking forward to connecting with you - with every-you! - and to learning and growing together.
Yael Shira

Chronic Illness: Feeling Like You Live a 'Double Life'

“Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”— From “Illness as Metaphor” by Susan Sontag Citizens of that other place… That “other place,” the kingdom of the sick. It is a place with its own language and customs and landscape, a shadow-place of shadow-people. Take care if you enter: the farther you step, the less substantial you become. There, your body blurs into something darker, slower, less stable. To live with chronic illness is to reside at the borderland between these two kingdoms. It is a border defined by competing identities and wary coexistence. It is a timezone of its own. I wake up in a state of perpetual jet lag, disoriented, trying to discern where I am that day. Today, I woke up feeling tired and heavy. These days, I am pulled toward the shadows. A few months ago, I bumped into a friend on the bus. She is in medical school, and we began talking about medicine and patient care. She told me about a part of her program, which pairs medical students with patients in order to gain a better understanding of the patient experience. “So once a week I go to the home of this old woman who has Parkinson’s, and she is really amazing. She always has family over when I’m there, children, grandchildren and she cooks for everyone. She loves it and you can see that she has so much energy.” My friend smiles and then continues. “One time though, I went with her to one of her doctor’s appointments. And she became very quiet, unsure of herself. It was like she became another person altogether.” This is the dual citizenship that Susan Sontag describes in her book, “Illness as Metaphor.” On one hand, we live with energy. We are active, we are able. And then, like this woman, we fall sick and we meet that other side of ourselves. That side that doesn’t feel like ourselves at all. I haven’t written about this for a long time and I know why: I was feeling good, living in the kingdom of the well, and I did not want to think about the other side. (How easy it is to disregard the other citizenship when you feel secure within one kingdom, how far apart they seem!) And now, I am back to spending mornings at appointments in the neurology ward in the hospital. I sit in the waiting area with the other patients. The old man walking stiffly with his walker. The woman with her face half paralyzed. I am often the youngest in the room. And from there I continue on to the university, to work in a lab with other graduate students. Sometimes I wish I had a walker or a mask of old age to explain and make visible my “weaknesses.” (No — I retract this, I am grateful for my ability to walk and move unaided. But. My body is a deceiver, hiding invisible scars.) And all I think about is these dual identities, about the borderland I inhabit and the tension inherent in it. I have things to do, responsibilities and errands, tasks to complete, friends to respond to, and life to live. And I am tired. Bone tired, nerves buzzing, body in pain, I can’t, I can’t (or can I?). I am unsure, confused about what my capabilities are each day. “I don’t know what to do,” I told a friend recently. “You need to accept yourself where you are,” he said. Where am I? A Thought: I might not know where I am, but I know some truths. From a place of uncertainty, from this tense borderland, comes a certain clarity — a sudden insight into how simple things can be. What matters? Health matters. Mental, physical — you must take care of your body first. It is the Foundation from which everything else can arise. Time matters. The way we spend our days is the way we spend our lives, and life is the most precious gift. People matter. Cultivate relationships and celebrate every point of connection. And: It does not matter how slowly you go, as long you do not stop. This story was originally published on Medium.

Yael Shira

Chronic Illness: Feeling Like You Live a 'Double Life'

“Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”— From “Illness as Metaphor” by Susan Sontag Citizens of that other place… That “other place,” the kingdom of the sick. It is a place with its own language and customs and landscape, a shadow-place of shadow-people. Take care if you enter: the farther you step, the less substantial you become. There, your body blurs into something darker, slower, less stable. To live with chronic illness is to reside at the borderland between these two kingdoms. It is a border defined by competing identities and wary coexistence. It is a timezone of its own. I wake up in a state of perpetual jet lag, disoriented, trying to discern where I am that day. Today, I woke up feeling tired and heavy. These days, I am pulled toward the shadows. A few months ago, I bumped into a friend on the bus. She is in medical school, and we began talking about medicine and patient care. She told me about a part of her program, which pairs medical students with patients in order to gain a better understanding of the patient experience. “So once a week I go to the home of this old woman who has Parkinson’s, and she is really amazing. She always has family over when I’m there, children, grandchildren and she cooks for everyone. She loves it and you can see that she has so much energy.” My friend smiles and then continues. “One time though, I went with her to one of her doctor’s appointments. And she became very quiet, unsure of herself. It was like she became another person altogether.” This is the dual citizenship that Susan Sontag describes in her book, “Illness as Metaphor.” On one hand, we live with energy. We are active, we are able. And then, like this woman, we fall sick and we meet that other side of ourselves. That side that doesn’t feel like ourselves at all. I haven’t written about this for a long time and I know why: I was feeling good, living in the kingdom of the well, and I did not want to think about the other side. (How easy it is to disregard the other citizenship when you feel secure within one kingdom, how far apart they seem!) And now, I am back to spending mornings at appointments in the neurology ward in the hospital. I sit in the waiting area with the other patients. The old man walking stiffly with his walker. The woman with her face half paralyzed. I am often the youngest in the room. And from there I continue on to the university, to work in a lab with other graduate students. Sometimes I wish I had a walker or a mask of old age to explain and make visible my “weaknesses.” (No — I retract this, I am grateful for my ability to walk and move unaided. But. My body is a deceiver, hiding invisible scars.) And all I think about is these dual identities, about the borderland I inhabit and the tension inherent in it. I have things to do, responsibilities and errands, tasks to complete, friends to respond to, and life to live. And I am tired. Bone tired, nerves buzzing, body in pain, I can’t, I can’t (or can I?). I am unsure, confused about what my capabilities are each day. “I don’t know what to do,” I told a friend recently. “You need to accept yourself where you are,” he said. Where am I? A Thought: I might not know where I am, but I know some truths. From a place of uncertainty, from this tense borderland, comes a certain clarity — a sudden insight into how simple things can be. What matters? Health matters. Mental, physical — you must take care of your body first. It is the Foundation from which everything else can arise. Time matters. The way we spend our days is the way we spend our lives, and life is the most precious gift. People matter. Cultivate relationships and celebrate every point of connection. And: It does not matter how slowly you go, as long you do not stop. This story was originally published on Medium.

Yael Shira

Chronic Illness: Feeling Like You Live a 'Double Life'

“Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”— From “Illness as Metaphor” by Susan Sontag Citizens of that other place… That “other place,” the kingdom of the sick. It is a place with its own language and customs and landscape, a shadow-place of shadow-people. Take care if you enter: the farther you step, the less substantial you become. There, your body blurs into something darker, slower, less stable. To live with chronic illness is to reside at the borderland between these two kingdoms. It is a border defined by competing identities and wary coexistence. It is a timezone of its own. I wake up in a state of perpetual jet lag, disoriented, trying to discern where I am that day. Today, I woke up feeling tired and heavy. These days, I am pulled toward the shadows. A few months ago, I bumped into a friend on the bus. She is in medical school, and we began talking about medicine and patient care. She told me about a part of her program, which pairs medical students with patients in order to gain a better understanding of the patient experience. “So once a week I go to the home of this old woman who has Parkinson’s, and she is really amazing. She always has family over when I’m there, children, grandchildren and she cooks for everyone. She loves it and you can see that she has so much energy.” My friend smiles and then continues. “One time though, I went with her to one of her doctor’s appointments. And she became very quiet, unsure of herself. It was like she became another person altogether.” This is the dual citizenship that Susan Sontag describes in her book, “Illness as Metaphor.” On one hand, we live with energy. We are active, we are able. And then, like this woman, we fall sick and we meet that other side of ourselves. That side that doesn’t feel like ourselves at all. I haven’t written about this for a long time and I know why: I was feeling good, living in the kingdom of the well, and I did not want to think about the other side. (How easy it is to disregard the other citizenship when you feel secure within one kingdom, how far apart they seem!) And now, I am back to spending mornings at appointments in the neurology ward in the hospital. I sit in the waiting area with the other patients. The old man walking stiffly with his walker. The woman with her face half paralyzed. I am often the youngest in the room. And from there I continue on to the university, to work in a lab with other graduate students. Sometimes I wish I had a walker or a mask of old age to explain and make visible my “weaknesses.” (No — I retract this, I am grateful for my ability to walk and move unaided. But. My body is a deceiver, hiding invisible scars.) And all I think about is these dual identities, about the borderland I inhabit and the tension inherent in it. I have things to do, responsibilities and errands, tasks to complete, friends to respond to, and life to live. And I am tired. Bone tired, nerves buzzing, body in pain, I can’t, I can’t (or can I?). I am unsure, confused about what my capabilities are each day. “I don’t know what to do,” I told a friend recently. “You need to accept yourself where you are,” he said. Where am I? A Thought: I might not know where I am, but I know some truths. From a place of uncertainty, from this tense borderland, comes a certain clarity — a sudden insight into how simple things can be. What matters? Health matters. Mental, physical — you must take care of your body first. It is the Foundation from which everything else can arise. Time matters. The way we spend our days is the way we spend our lives, and life is the most precious gift. People matter. Cultivate relationships and celebrate every point of connection. And: It does not matter how slowly you go, as long you do not stop. This story was originally published on Medium.

Yael Shira

Reminders for Rough Days and Finding Joy in Life With Chronic Illness

“May I ever be in as good spirits as a willow! How tenacious of life! How withy! How soon it gets over its hurts!” – Henry David Thoreau, Journal 2/14/56 Today I was feeling down, anxious in a way that made me retreat into old memories, to previous writings. And there, between notes about the health saga, the difficulties and low points, I found scraps of optimism and hope and encouragement. One entry had a list of instructions I had written for myself. Reminders of the lessons I learned over the last few years, and guideposts to help me live the way I want to. I added and revised a few things, and here I share them with you. Twenty-Five Reminders for the Rough Days 1. Your body is what can limit you the most. You can limit yourself the most. If your body is working, and your mind is working with you, you are limitless. 2. Life is hard, but it is still good. Even when things do not feel easier, they can still be getting better. 3. Tired is not the same thing as being lazy, and rest is not always indulgent. Know how to distinguish one from the other. Prioritize quality sleep. 4. Managing things takes time. The emails, the phone calls, the appointments and tests and prescriptions, organizing the things that accumulate. It doesn’t matter how you do it, get it done. 5. Celebrate every victory. 6. Friends are everything. Value friendships fully, intentionally and whole-heartedly. Love in all the ways. 7. People will disappoint and situations will disappoint, and the disappointment will hurt, sting and pass. But if you are trying as hard as you can, and you are authentic, you can not disappoint yourself. 8. Be generous in actions and spirit. Be generous with spare change, with food, with time. Make eye contact and smile. 9. Interact with your environment. There is always more to see, more depth to uncover. An infinite amount of wonder and beauty. Watch the sunset as often as possible. 10. Find and create environments that will support you. Learn what support you need, and recognize it when it is there. 11. Do not wait for others to do something in order for you to do it. Swim in the ocean alone. Let yourself be shocked by cold water. 12. When you feel self-pity, look at a dog and smile. 13. When you feel self-pity, laugh at yourself. 14. When you feel self-pity, wallow. Sit in it and sink in it, deeply, but always emerge from it. You do not need to carry your sadnesses everywhere you go. 15. No one cares what you do as much as you think they care. So do whatever the hell you want. 16. If you can walk, walk. If you can run, run. If you can rest, rest. Wherever you are now is going to change. Meet yourself at this moment. 17. Learning to take care of yourself is a necessity. Learning to love yourself is essential. Be patient and compassionate with yourself and those around you. 18. It is not your fault. Also: You still have control. 19. There is not one “right” timeline. Don’t compare yourself to other people. 20. Money is a means to an end, not the end itself. Use it to make your life better. Buy the avocado. 21. When something is hard, you can get depressed by it or you can see it as a challenge. Challenge yourself. 22. Choose your challenges wisely. 23. Questions to ask yourself daily: How can I make today great? How can I be good to myself? 24. Here are things that make you feel better: go outside. or sit by a window. watch the light or clouds or rain or swaying trees. listen to music. talk to a friend. talk to yourself. take a hot shower. walk stretch move. read. write. create. get upset or sad or angry, dramatically so, until it is everything until it is released. breathe deeply. smile, softly. 25. Thank you and thank you and thank you for all the Good. So you plant your own garden and decorate your own soul instead of waiting for someone to bring you flowers. – “You Learn,” Jorge Luis Borges