surfing waves

Riding the Waves of Grief

Surfing waves

This Thanksgiving was not a typical holiday. There was no big family dinner for me, no turkey or stuffing, no loud noise from nephews and nieces running around. And there was no dining room table to sit around at my parent’s house. Instead, the dining room had become a make-shift bedroom occupied by a living room chair, a small dresser filled with just pajamas, a card table holding a blood pressure cuff, gloves, towels, and a hospital bed. The only thing that remained the same were the towering bookcases from floor to ceiling that overflowed with books, which were now hidden behind framed pictures of grandchildren, children, my aunts and uncles, and model airplanes.

My Dad loved airplanes. Growing up, we would sit around the kitchen table for dinner and whenever an airplane flew overhead, my Dad would inform us kids the type of airplane based on the sound of its engine. He had about 300 books about aviation and airplane history, airport design history (ah, the Art Deco Design of Buffalo’s Central Terminal!), and the evolution of the legendary Douglas DC-3. This was his favorite airplane, of which I endured many lectures of how it revolutionized air transport. He had exquisite DC-3 models he had painstakingly built, framed pictures of DC-3s, a picture of a DC-3 for his screensaver, and even a mousepad with a picture of a DC-3 that my Mom gave him.

Drawings of airplanes and a model airplane made from paper towel rolls made by his grandchildren also nestled amongst framed memories that encircled this makeshift bedroom like a protective wall of love. And within this protective wall I sat with my Dad, as he lay in his hospital bed on Thanksgiving Day. This hospital bed would not be here much longer—only four more days to be exact—before it would be taken apart and put back together in another home, which would hopefully also be encircled by his or her framed memories. This Thanksgiving was the purest and closest form of a Thanks-giving I have ever had or will again. I sat quietly thankful, feeling privileged to have this time alone with him. The true meaning of Thanksgiving was felt that day as I held my Dad’s hand under the dimmed light.

Physical Symptoms of Grief

I truly believe that he is only gone in physical form, but that does not seem to change the grieving process. At first, I was forgetful, in a daze, and had trouble concentrating. It was the epitome of brain fog. I forgot to pick up my brother for the funeral. Then, after the funeral passed, relatives went back to their homes and I and my siblings reconnected with our families after being away to help care for my Dad the past one to two months. It is then that I suddenly experienced intense back and neck pain. Emotional pain shares the same areas as physical pain in the brain.The brain, mind, and body are interlinked into one being. Perhaps this is why I felt the physical pain of grief in my back and neck—years of chronic back and neck pain were already imprinted in my brain. It was the easiest route for my emotional symptoms to physically manifest.


Grief is known to be a psychological-emotional response to loss. But it is much more. It is as much a physical and physiological experience as it is an emotional experience, yet not talked about enough.

You can experience stomach aches, heart ache, lethargy, heart racing, and physical pain anywhere in the body. Emotionally, I felt a state of shock despite expecting my father’s death. His death felt surreal and confusing to my identity and familial existence. Physically, my body felt my shock and responded accordingly. My back and neck stiffened, bracing itself as if in a maladaptive attempt to support me. And underneath the stiffness, I felt the lethargy of grief. I did not want to do anything. I had no motivation but to lay in bed or stare at the television. So, I did just that.

Honor Thyself

My body was telling me to slow down, honor and nurture myself, to allow myself time to feel the emotional pains of grief. For one week, I cared for myself. I went to the gym, played the piano, journaled, watched the TV, and stared at the ceiling. I allowed grief to surface and discharge over and over, whenever it wanted, through tears, memories, laughter to I Love Lucy reruns, and more tears. Ironically, I had not felt that much peace in a long time.

When the week came to a close, I left my self-centeredness–my self-care–behind and went back to work, shopped for Christmas gifts, and then celebrated Christmas as if life was normal again. And then I got sick. Yep, grief is a strange process. It is exhausting and the distress of it (as well as fatigue from care taking) can suppress the immune system. Grief gave me the Christmas gift of a bad head cold.

The Waves of Grief

Recently, a friend, who lost her father last year, told me that grief comes in waves. Sometimes these waves are small, sometimes they are big. She was right. I learned of this wave-effect. They popped up when and wherever they wanted–when I was buying groceries and saw my Dad’s favorite apple butter; when I thought of something I wished I could tell or show him; when I wished he was around to edit my writing; when I go the house I now just call my Mom’s house; or for no reason at all.

“Once bereaved, always bereaved” is what we said when I worked in hospice. Our memories never go away. Our memories are tied to emotions. In our busy world we often push down grief so we can make it through each day. Companies usually offer only five days for bereavement leave. That’s not a lot of time to learn to cope with the loss of someone who had been an integral part of your life. But we don’t live in a world that focuses on and discusses emotions and emotional processing. We have jobs to go to, family to care for, perhaps our own chronic illness to deal with, errands to run, appointments to make, obligations never ending. When do we have time to grieve?

Grieving requires a fine balance, I am learning. It is a process that takes time. That length of time is unknown and may be always. Grieving is not about “being strong” as we are so often encouraged to be when someone dies. It’s about being brave enough to allow ourselves to feel. I must feel and acknowledge the sensations in my body of tiredness, of a stomach ache, an aching heart, or increased back and neck pain because these physical symptoms are all telling me that it is time to honor myself–I must take a “time-out” to feel the waves of grief rise so that they can fall again. To feel is to heal.

I have been through grief before when I lost my life to chronic illness at age 27. (You can read about my story here.) I had felt the rise and fall of grief as I watched my life and body as I knew it drift farther away while physical injuries, pain, and limitations became my new reality. Loss is loss. I remember the tidal waves of grief I had felt grew more predictable over time, calmer, and more manageable until I now can watch the small waves rise and fall without me getting swept away.

Building a Relationship with Grief

Perhaps this is what the process will be like for me now when grieving the loss of my father. The more I allow myself to feel my grief, eventually my waves of grief won’t feel like tidal waves, and over time, my body will respond less and less with physical pain and exhaustion. There is a sense of relief I feel when I think of the relationship I am developing with grief. I am befriending it. I am allowing it, feeling it, understanding it and processing it.

Perhaps the waves will become smoother and calmer as the days, months, and years go by. Perhaps the waves don’t just become smaller because time passes, but also because I am not afraid of to feel grief and its complexities, nor am I pushing it away. I am embracing it as I navigate this ride with love for my Dad and compassion for myself. After all, isn’t there beauty in grief? We only grieve so much because we loved someone so much, and still do.

Heart in sand on beach at sunset
girl closing eyes looking looks like praying with clasped hands

Video: What’s Your Healing Image?

Short Video – What’s your healing image?

Often pain leaves us feeling vulnerable and fearful. It may help to find an image that has meaning to you, such as a tree or a mountain, to help you feel strong, powerful, and confident. Images can be very powerful in our healing process. Instead of allowing ourselves to feel defeated and victimized by pain, we can feel the characteristics of that image and allow these positive feelings to penetrate our mind and body. Some people use nature scenes, others use an animal, a superhero, or you can make up your own image. What is your healing image?A

B&W picture of woman looking out on a lake on a cloudy, cold day

The Power of Our Perceptions When Suffering From Chronic Pain

B&W picture of woman looking out on a lake on a cloudy, cold day

I am often asked, “What helped you to get better, to overcome pain?”            

There are many things from a healthy diet, to yoga, stretching and exercising, to certain medical treatments like prolotherapy. Those helped me physically. What helped me emotionally cope with chronic pain, and still does, all started many years ago at an event that taught me about the power of our perceptions. I almost did not attend because I knew that one hour of laying on the floor instead of my bed, would cause tumultuous muscle spasms and increased pain; but, I am grateful courage came forth that night. It started me on a path of deep healing. 

That eventful night, I attended a Dharma talk in a run-down, white house in San Francisco. Perfectly centered between gold and red tapestries that cascaded down the front walls of a small room sat a monk whose serene expression contrasted the sharp, prickly hairs that stood erect on her shaved head. Her serenity brought me a glimpse of peace to which I and the other nineteen attendees hungrily clung.

The Dharma talk’s topic was Suffering. I knew this word well, as do most people. Its meaning is understood through experience that encroaches upon us by one means or another. To me, chronic pain was synonymous with suffering.

 “We are the cause of our suffering,” the monk told us matter-of-factly and gave an example: Imagine standing in a long line, and a stranger pushes you aside to get ahead. What is your first reaction? Do you yell at the person or make sly comments out of anger and impatience while she stands in front of you? Do you envision ways to get back at her for taking your spot and making you wait longer? Do you politely tell her that you were already there? “Or,” offered the monk, “do you first consider the possibility that this person may have been distracted by her own thoughts, not even realizing that she jumped ahead in line, or perhaps, she is in a hurry for a very important reason and it is okay to let her go before you?”

Then, she asked us:

  • Which reactions would create anger, impatience, and tension—more suffering?
  • Which reactions would not create suffering?
  • Do you think that the situation created your emotional suffering, or was it your thoughts and reactions to the situation?

 “How we perceive a situation affects our emotions and thoughts,” was the wisdom that the monk shared with us that night. 

   

Does Pain or Our Perceptions of Pain Cause Our Feeling Victimized? 

When I went home that night, I wondered how the Dharma talk pertained to me. I first thought that the stranger the monk talked about was my pain. Pain was a ferocious entity, a parasite that cruelly sucked so much life from me, cutting me off from the world. I was furious with pain. It exhausted me. It exhausted my hopes. I tried to control it, but my inability to do so resulted in feeling victimized—conquered. I resented this, thusly, I feared and rejected pain more.

Yet, later that night after the Dharma talk, I realized the stranger, which I originally thought was pain shoving and pushing me aside, was actually me. I had become my own victim. The pain was not destroying me; my thoughts, beliefs, perceptions of and emotional reactions to pain had been making me feel victimized. As we enter experiences with certain beliefs, we in turn, create a reality to validate these beliefs. Reality, or more literally, our perception of reality, is what we make it. The meaning I gave suffering, and the story about my suffering on which I ruminated, caused my suffering.

Although I hated pain and battled and feared it, I began to recognize that I did not actually hate and fear pain itself, I hated and feared feeling pain. I was not afraid of pain, I was afraid of suffering and what I emotionally identified with the concept of suffering. It is not emotional or physical pain, but the aversion to pain that caused my suffering. I had created a world of rejecting experiences (rejecting the sensation of pain, my body, myself). How could I not feel anything but enormous fear, depression, and loneliness? It was I who had been taking away my power, not pain.

Pain can feel overwhelmingly powerful, physically, mentally, and emotionally; however, just as our mind can play a large part in our suffering, it can also free ourselves from suffering. Our perceptions are subjective, not fixed. We can change our thoughts, perceptions, attitude, beliefs, and our outlook. 

 

That night, the Buddhist lecture initiated my process of learning that when we look through the keyhole into our life, it is important to detach from thoughts, desires, emotions, fears, actions and reactions. When we let go of unhealthful thoughts and reactions, we create space for positive thoughts, open-mindedness, adaptable thinking, and joy. 

I never want to limit my life, but rather, enhance my life with a reality of possibilities.

Question mark held up in front of woman's face

Do I Have To Accept Living In Chronic Pain Forever?

Question mark held up in front of woman's face

What does it mean to accept living with chronic pain? And forever? How do people do that? Should they?

I struggled with these questions for years as doctors constantly told me that I needed to learn to accept living in chronic pain. I thought, How could someone have the audacity to label me as “a hopeless case” and define my future, my life? Did this mean relinquishing hope of getting better? Did it mean I needed to stop trying? I could not, would not, accept living in pain forever

As much as I had been rejecting pain, I had been also rejecting my body.  I was attached to something that no longer existed. I idolized and clung to my “perfect” body and my “perfect” life before my injuries. Before my back injuries and pain, I was fully living life, not merely existing. I did not want this “new” body. I felt unsafe in this body of pain and had lost control over it. Because of pain and physical limitations, I lost my health, my home, my job, financial stability.  But, over time, I began to realize that my body did not do this to me. It was suffering too, and trying to heal. 

I began nurturing my body as I would a beloved child or a sick family member. I began listening and responding to its needs. Through exercising, Feldenkrais work, Pilates, yoga, eating more healthfully, and gaining understanding of my activity tolerance so I did not overwork my body and cause more pain flair-ups, I began accepting and respecting my body.

Silhouette of person with head in hand surrounded by words related to depression

Chronic pain is as much a mental dis-ease as it is a physical dis-ease.

I needed to learn to accept my body and my Self.

Chronic pain creates not just physical trauma, but a disconnection from one’s Self. Grief is not just for those who have died, but for a loss of ones’s sense of Self, including one’s belief system and how one once defined his or her Self. Within my grief dwelled so many dimensions of loss–loss of abilities, companionships, independence, and how I defined my place in the world. I felt unlovable and inadequate–unworthy. Beliefs swirled in mind, such as: I had no value in society anymore. No one would ever want to date me. I could not go for long walks, or even walk on sand; no one would ever want to spend time with me. I could not be financially independent; I was worthless. All I had is my personality, but society defines people by their career and money. I had nothing to offer. How could I exist in society with pain and dis-abilities?

How could I heal from such catastrophic losses? By increasing my physical functioning, I thought. I changed my exercise goals, bought a stationary bike, and started biking for 1-minute intervals throughout the day, trying to rebuild my strength, thinking things would get better if I focused more on my body. Weeks passed and I realized that my new bike and goals were not healing grief. 

 

To move forward in my grief, I needed to let go of my false beliefs and misperceptions about myself–how I defined myself. Beliefs are stronger than thoughts, for they are thoughts embedded with feeling. We do not just think we are unworthy, we feel it to our depths. Often these beliefs start in childhood and are strengthened by other experiences, such as physical pain and trauma, because we define everything in relation to these beliefs.

Healing from grief and its psychological consequences due to trauma, is a process, a journey–a birthing–of the Self. I needed to open my heart to myself, without judgment. With compassionate awareness, I embraced the experience of my Self. I acknowledged, experienced, and de-tached from my emotional pain, the negative self-perceptions and the stories that I had created.  Underneath, deep down, I found resilience, wisdom, and self-love. Then, I began to accept the true value of my Self, limitations and all. 

From self-discovery evolved self-acceptance, and ultimately, self-love. 

When I began learning to accept and love myself, I began to accept my life. Through my inner journey, a new freedom impressed itself upon me. I had nothing–no roles, labels, or judgments to hide behind. I am what I am. And I love myself for this.

I still look for treatments that will improve my well-being and decrease pain, but I no longer allow myself to be consumed by pain. I perceive it as separate from myself. Pain is a part of my life for the moment, maybe forever, but it is not who I am.

Is it pain or loss that we need to accept?

People have told me that once they accepted pain, they felt a huge weight lift from their shoulders. They could finally refocus from trying to find a fix to living life again. If you ask me today, “Do you accept living in chronic pain”, I will probably say no, but I accept myself and my life, because I, not pain, define who I am and the course of my life.

Perhaps, instead of patients being told to learn to accept living with pain, which usually causes a defensive reaction, maybe they can be asked: “What problems are you having related to pain?” and “How can we work together to mourn your losses and reclaim your sense of Self, feeling even more self-compassion, self-reliance, and self-empowerment in your life right now?”  After all, don’t we all need this, whether we will live in pain forever or not?

I Love me

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