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Living My Life with a Chronic Health Condition

12/21/2021 11:46:43 AM


Carrie Neiss

I vividly remember getting a headache for the first time when I was about 14, at my high school fashion show. Upon entering the building, a crowded sea of teenagers surrounded me. I tried to navigate the chaotic scene, but I felt overwhelmed as they filled the halls and staircases. My friend and I pushed through and rushed down the stairs to the gym, and there we saw a blinding show of bright, colorful searing lights, and loud pulsing music. I was in bliss, vibrating and flowing with my favorite 80’s tunes, and I discovered that although I had a great time, the event exhausted me. I was overstimulated, a term I was only going to able to understand much later in life. I came home with this new pain in my head, asking my mother for help. She seemed prepared for this day, pills in hand within minutes, she knew exactly what to do. I was very familiar with this routine. For most of my life, I had seen my mother slip away for hours at a time into her bedroom, seeking darkness, quiet and relief for her own headaches. She experienced this with her own mother, and my grandmother with her own mother. As a child, every now and then I would sense her presence vanishing. Missing her, I’d feel my sense of security falling away, and I’d keep one eye open for her return. Once she crept out, we would sit in the kitchen quietly, and I regained my comfort watching her eat something bland and soothing like Rice Krispies, or anything that wouldn’t trigger the pain to return. I witnessed her suffering in silence again and again, and I wish I knew back then how I could have helped. I was sadly isolated from what she was experiencing, and clearly sensed her needing space from us in order to heal. Years later, I would become what my mother had shown me, and throughout my life, I would see people who loved me, feel helpless and isolated when I was in pain.

In my case with chronic pain, I believe that everything is connected, and the headaches I experience are primarily symptomatic of deeper issues related to the nature of who I am, and what my body is trying to teach me. It has taken decades for me to learn, accept and honor myself as a highly sensitive person. This means that I absorb more energy from my environment than the average person. I am an empath and an introvert, and I need frequent alone time to recharge my batteries. I feel things more intensely, and I often get emotionally overwhelmed which triggers physical symptoms. My body is just as sensitive, requiring a pure diet, clean air, and I can absorb someone’s virus just as easily as I can absorb their mood. Throughout my life, headaches became the way my body screamed out for attention, ushering in lessons and wisdom for every stage of my life. I believe my higher self was trying to show me a path towards authenticity and sovereignty, when I didn’t know how to choose it on my own. Chronic pain has led me to experience many dark nights of the soul, magically inching me toward an awakening, and my transformation from guilt, shame and feelings of unworthiness, towards self-compassion and love.

In my teen years and early adulthood, my authenticity was the last thing I wanted, or hoped to find. I got headaches once in a while, resulting from the stress I experienced when I put too much on my plate. I didn’t want to pay any attention to these red flags my body was waving at me, because I was desperate to fit in, to be social and busy like everyone else my age. There was a steep price to pay for this wish, as I reached for alcohol and food to numb the discomfort and tension I felt in crowds and at parties. These addictions were a response to an urgency I felt within, to apply extra padding or protection to my body, in order to feel at ease with people. With a drink in my hand I could be the life of the party, and could socialize for hours on end. I was happy with this trick for a while, until the stress and overindulgence brought me straight into therapy for many years. This was rock bottom for someone in their mid-twenties. I was ready to remove this self-imposed padding, and see who was really underneath. Without the alcohol I could feel more, and I wasn’t sure I liked that very much. Suddenly bare, vulnerable and real, headaches became more frequent. The pain was a clue that my body trying to tell me something, but I was not interested in listening. I searched for doctors who could help me get rid of this thing that was in the way of me being like everyone else -  I wanted to be what I thought was “normal”.

I could not admit to any feelings of being different for a very long time, as it was much easier in my family to stay silent. Silence is a curious thing, because once initiated, I found that it can grow and take over when you least expect it.  I wanted to dig up the roots of my own fears, and in my attempts over the years to heal, I journeyed into the stories of my ancestors to learn about intergenerational trauma. I discovered that my great grandmother Molly, who had chronic headaches, experienced harsh antisemitism while living alone with her children in Poland for years. Her husband, Aaron, left for Canada to start a new life, and his plan was to bring the family over once he was able to. I heard frightful stories about how she regularly sent her children to hide in tall haystacks behind their home, in order to run away from the Cossacks. Pitch forks were used  to poke at the hay again and again to find any hiding Jews. By some miracle my grandmother and her sister survived, but the Cossacks invaded their home regularly, and I can’t imagine the trauma and anguish my great grandmother experienced from these continual and unexpected invasions. It still haunts me how she had to protect her children on her own without her husband, and I know they carried these memories in their hearts and souls for their entire lives.

 Hiding who they were was so normal, like many other Jewish families. As a child, I saw the women in my family perpetuate this silence. This is how they showed love, being careful what they said and who they shared things with, in order to protect themselves and our family from harm. This silence extended to protecting us from any difficult or painful situations, or conversations that might trigger discomfort. In an attempt to shield us from anything hard, I experienced shame and guilt for all my own hard feelings, as I sensed disapproval and fear for the expression of any emotional pain. As important as it is to share my story, the trauma my ancestors went through must be honored and included to understand the bigger picture. I spent most of my life hiding many things, believing I would be shamed if my truth came out. Years of building up courage and strength, has allowed me to break this silence, for myself, my family, or for anyone who might read this and be comforted. I believe healing happens in relationship. By sharing our stories with compassionate support, we are encouraged to realize that we are not alone. Slowly, we can then begin the birth of transformation, and learn how to love ourselves unconditionally and heal.

 My healing journey continued into my thirties, where a multitude of different kinds of headaches began to appear. There were menstrual migraines, headaches from colds, headaches with stomach viruses, and finally headaches with a new environmental sensitivity I never saw coming. I moved to an island near Vancouver, Canada, where it rained all the time. It took me years to find out I had a severe mold sensitivity. There, my headaches became chronic, and my immune system became compromised. I picked up colds and viruses continually, and I retreated more and more into isolation. Pain medication stopped working, and I would be up for hours into the night watching old reruns for distraction. Mornings didn’t exist anymore, and I grabbed sleep where I could find it. In my desperation, I ran to any healer I could find, one after the other, year after year.  I poured myself into books and study to try and understand what was happening to me. Eventually, I knew I had to leave my home and move to a drier climate. By the time I hit my late 40’s, there was so much I just couldn’t do. I was cornered into facing myself alone, every day, all the time. Eventually, I  believed that my body had betrayed me, and I didn’t like myself very much. I had accumulated many losses in my life over the years, in the friends I couldn’t see or had to let go of, and worst of all, the family gatherings I couldn’t attend.

 One event that sticks out is a recent Passover that was held in my parents’ home in Canada. I was visiting them from Boulder, and my sister and her family flew in as well. I hadn’t seen them in a few years and I missed them very much. I felt lonely from the start because I couldn’t stay for long periods of time in their apartment due to the air quality, and I was forced to book an Airbnb. The day of the seder I felt the pain coming, and I counted the hours left before I needed to get ready. Calculating as I always did, I estimated whether I had enough time for the medication to kick in, and allow me enough time to feel well enough to go. As the time to get ready drew near, I began to get worried. I called the house to give them updates, hour by hour, so they would believe I was trying to get there. With no time to spare, giving it everything I had, I forced myself up, feeling medicated and a little wobbly. I quickly considered the lingering pain, and decided to get into a shower and go. My Uber came as fast as I could get one, but I arrived late. The seder had begun, everyone was eating, and I couldn’t help but feel like an outsider. I couldn’t be in the apartment to help my mom and sister with the cooking, and I longed for the family bonding time I used to have at holidays when I was younger. As best I could, I tried to feel relief that I was able to get there at all.  I felt incredible shame for my condition.

 Over time, I honestly felt like there was something really wrong with who I was. The internet made me feel worse too. With the proliferation of bloggers, and personal journeys displayed on line, I  encountered so many success stories of people having healed themselves. I began to feel like a failure. The world taught me that if I worked hard enough at something and persevered, I could succeed. Action and dedication were my mantra, but I was exhausted after so many years of trying. I didn’t feel like I would get points for “just being me” or “accepting myself”, or looking within for answers. The answers were with the experts, the doctors, and healers, who I thought could remove a part of me that I didn’t like. Intuition continually knocked on my door, quietly, and sometimes very loudly, to let me “be” for a while without medical intervention. Slowly, with much resistance, I went kicking and screaming towards becoming friends with my sensitivities, as I tried to make peace with an enemy who I felt was ruining my life. By opening my inner door, I began to see the gifts within. I wrestled, one day at a time with my inner conflict, and persistently dug into the nature of who I am and what resonates with me. I had to relearn everything, and change the way I saw myself and the world. Eventually, I would commit to living from the inside out, instead of adapting to what I thought the world expected of me.

With the help from teachers like Anita Moorjani, Sandra Ingerman, Judith Orloff and others, I would learn to accept and love who I am and begin to heal my soul. Slowly, I began to abandon my search for the perfect doctor, and let go of my never-ending battle to remove unwanted symptoms. I had to learn the hardest lesson of my life, that my worth was not dependent upon achieving perfect health, or what we all perceive as societal success. I struggled, and learned to accept that some things are just out of my control. It was hard for me to learn that life is a big picture I cannot see, and I’m limited in my understanding of what might lie ahead. Faith helped me with the patience and humility I was going to need to accept my limited perception of life, and face my biggest challenge. To love myself unconditionally every day, despite the experience of any difficult symptoms. It was in the details of each moment, that I could be present and foster wellbeing, peace, and hope. I could learn to focus in the smallest of ways on finding balance, and discover opportunities to nurture my soul. I believe this is what creation is. From the smallest intention in every breath, I could build an environment that enabled me to grow and thrive. On this journey I have slowly learned to embrace compassion for myself and others, and to let go of any shame I have ever felt, just a little at a time. In darkness, where all hope seems to be lost, a crack of light eventually pushed its way through, illuminating my soul, and allowing rebirth to begin.

Tue, April 16 2024 8 Nisan 5784