An Open Letter to Medical Professionals

Everyday we touch the lives of others, whether it's an encounter that's so brief we merely notice it or an ongoing relationship through the years. No encounter is too small. For good or bad, our interactions can be very impactful upon another. Encounters with medical professionals are no different.

As a chronic illness patient, I am always nervous about encounters with my providers - doctors, nurses, technicians - as you hold great power while in your care. Those of us with chronic illnesses have countless encounters and experiences that scar us or lift us up during our medical trials. We constantly wonder if our providers will treat us with care and compassion or will patronize and ridicule us for our needs and fears. Unfortunately, chronic illness patients are far too familiar with both experiences.

Poor experiences with providers multiply our already existing fears. Chronic illness patients have encountered it all. Coldness or warmness, we notice how you look at us, whisper about us, and care for us. We're usually already on high alert, many of us have been scarred from years of testing, procedures, and whatever else the hospital typically holds for us. I developed PTSD during my first year of hospitalizations and surgeries. My entrance into a hospital capitalizes on my PTSD. It cripples me, fearful and suspicious of providers until my trust is gained. I've been ridiculed by providers for the coping techniques I utilize during procedures. I've been patronized by providers for my fear and low tolerance of pain. My death curdling cries for help have been ignored with snide remarks, my life placed on the line of an ego.

When we have a positive, helpful encounter it lifts our spirits in the midst of some of our darkest times. During the course of a year I had multiple stays at my local children's hospital. Although I don't recall many memories from this time and the ones I do recall are not pleasant memories. However, one memory stands out amongst all the others. The memory of one of my nurses has remained with me for 20 years. He treated me with great kindness and understanding. I felt safe in his care, particularly during a time that I was angry and mistrustful from a year of unceasing pain and medical traumas. His impact was so great upon me and our patient - provider bond so strong that my parents and I attended his wedding a year after my hospitalizations ended. His appearance and our interactions are hazy within my mind, but his influence in my physical and mental health during that period remains with me. The core of our interactions remind me that there is a light, even if small, that will help to guide us through darkness.

Fast forward six years later to my second year of multiple hospitalizations. As a young adult, the capacity for my memory has improved since my childhood hospital years. I am reminded of 4 nurses and technicians who aided in my emotional coping during my physical recovery from surgeries, poor health, and countless procedures. I underwent a full round of hyperbaric oxygen treatments and was cared for by two technicians whose humor and compassion actually let me look forward to my treatments. I was distracted from my worries, fears, and medical issues during the long treatments confined in that chamber. And when I returned from a procedure I often would find a technician hiding out in my room during their breaks ready for more laughter.
Although I liked most of my nurses, two stood out from the rest. One of my nurses was able to recognize me by my voice from repeated hospital admissions even before looking at his patient list for the day. His daughter would visit me to help me wash my hair. I looked forward to her visits as one of the most refreshing experiences during my prolonged hospitalizations. Another nurse was engaged to my anesthesiologist. During my many trips downstairs from my 10th floor hospital room to the lower levels of the hospital for my procedures, my nurse and anesthesiologist would have me pass along messages to the other. These messages always provided the three of us with great laughter and smiles and were vital in distracting me from my nervousness about each procedure I was about to undergo.

In dealing with our chronic illnesses, we've spent far too many days in the hospital; we've spent birthdays and holidays there. The hospital is not a fun place for us to be. We don't want to be there. In fact, we dread the hospital even if it's only an outpatient visit. We try to focus on the good experiences. The times we actually are able to laugh amidst our physical and emotional pain.

The care you take in your medical care greatly affects your patients. We notice when you're having a rough day but try to hide it from us, trying to not let it impact your care. Instead finding moments to laugh with us, give a reassuring hand squeeze, a sympathetic ear. We notice when you're exasperated with us, ready to escape from our room and get back to your home. We realize you have a long, hard day. So do we though. We aren't trying to make your day harder, we just want to feel well enough to return to our homes as well.

We find worry and fear in the harsher moments. On your bad days, those tiresome long shifts remember we bond with many of you, finding shared interests or strength in your compassion. We're looking to you for help to get through our stay. Your care makes a difference in our lives - now and in the future.

In The Stillness

I typically find myself anxiously awaiting the new year and the changes it brings. A freshness and newness to the staleness of daily life. New challenges and goals set forth with endless possibilities. The excitement can be overwhelming.

But not today. Today I just want stillness. I want to savor today's moment without the past lurking over my shoulder or the future calling for me.

Today I'm devoid of feeling, of stress, and worry. My soul, battered by the barrage of life's daily circus, longs for solitude.  No longer racing with a myriad of thoughts, my heart quietly beats and my mind lingers amongst itself in a somber atmosphere careful to not break the stillness.

Today I rest my tired body and soul, with eyes closed as I listen to the sounds in the distance; shutting out the demanding voice of life and instead merely existing. Now is not the time for continued self analysis in a constant state of self discovery and transformation. Nor is it time for tackling the never ending duties required for living. No, it is a time for a stillness that allows recharging for the mountains that lie ahead. There is much work in reaching the summit. Battles for passage and testing of strength and fortitude. There is much to be lost so that much may be gained. It is an exhausting battle.

Tomorrow is the day to let my battle cry ring out from my chest, from my soul. A battle cry to accept nothing less than the best of myself. I will take the hardness of life and I will create, forge, and transform it into survival and light. It will etch its name upon my soul. I will become it and I will know no difference.

But not yet. Today is the day I take for myself, away from the battle scene. I let the stillness wash over me, soothing my spiritual aches. Tucked away in a quiet corner of the world. I question myself not, I search myself not. I simply be. I be in a world of violence and beauty; a world of demands and gifts; a world of damage and healing. Tomorrow I fight. Tomorrow I climb.

Finding Gratitude

Finding gratitude for what life throws at us isn't always an easy task, especially for those with chronic illness. The daily fights for productivity and survival against a chronic illness often leave us physically and emotionally exhausted with little left over at the end of the day for much else. It isn't uncommon for us to feel as though the world is against at times, that we are being punished, that there is no end in sight. We tend to forget that every moment, every trial has something to be gained from the experience.

Gratitude may be found in the smallest of details, tucked away and overshadowed by the stress and chaos that is life. Our darker moments challenge our ability at gratitude; coercing us to focus on our trials and discount the positive, the strength within us that carries us through, and our own progress. Even with distractions, if we look close enough we can find a bit of gratitude shining through the cracks of the darkness.

During my darkest moments of this year my soul was breaking. My turmoil left me feeling terrified and buried alive. I was suffocating from the dark's heaviness. At the end of the passage, my eyes began to focus while I pieced myself back together, I saw the light. It showed me that I survived. I grew. I was becoming. The light was there the entire time, waiting for me to notice. I focused on my own darkness rather than looking for the light. Our default is to focus on our trials. It is far more difficult to shift our focus to find the light.

I look back on my life and I see the light shining brightly through each dark moment of my health issues that left me near death and the debilitating bouts of depression and PTSD. Without these moments, my life would have followed a different path. Guided by my own health experiences, my education and career paths have focused on the medical field and how I can help others with their own health issues. I'm grateful for the paths I'm following; without the darkness of my health challenges, I would be on a different path and I wouldn't be who I am presently.

This gratitude was not easily found though. It would take years before I would see the goodness of my chronic illness. It can be challenging to see the purpose in the darkness; we are left feeling frustrated, defeated, and tormented at times. I held onto my anger, resentfulness, and pain of chronic illness for far too long. It robbed me of appreciation, gratitude, and happiness. When we begin to release ourselves from the bondage of harmful feelings, we allow ourselves to discover purpose through the light.

You may be going through a distressing time yourself or remain haunted by past experiences. It may be difficult to understand at this moment what the purpose is of your trial and to appreciate the darkness. In the quiet moments of the day let your mind take a moment to reflect upon the goodness of your time. It may be small, but the goodness is there waiting for your acknowledgement and gratitude.

Routine Readjustments

This year has been a monumental year for readjustments in my outlook and coping of mental and physical changes. I have battled changes in my health resulting in an unexpected hospitalization after an 8 year hiatus from the hospital, medical testing resulting in no answers or real solutions to new chronic symptoms, and a mental and emotional reality check resulting in a major transformation of my mind and spirit. It has been a whirlwind of a year!

I am reminded of these events and their power within my life as I prepare for another follow up appointment with my GI doctor. I anxiously await this opportunity to further discuss the possible cause of my symptoms that are reminiscent of delayed gastric emptying. After my hospitalization this year I began experiencing a gradual increase of symptoms and severity - a mix of severe abdominal pain and nausea with occasional vomiting. After trying medications and undergoing further testing I am left with no clear diagnosis for the cause of my symptoms. During my second ER trip I was discharged with the diagnosis of delayed gastric emptying yet after another upper EDG and a barium x-ray I was found to not have any difficulty of my stomach emptying. Bentyl and Carafate medications are aiding in the management of the abdominal pain and reducing the nausea. These issues have not been resolved but are more manageable although the nausea remains more of an issue than I would prefer. As I await my doctor appointment, I've been instructed to maintain a food diary in hopes of pinpointing a culprit of the symptoms. I've realized that when my portions are too large and when I eat sweets I tend to have increased symptoms. And yet meat and vegetables are just as capable of producing severe nausea as well. Such variations increase the difficulty of adjusting to and understanding my health changes.

When I was diagnosed with a degenerative joint in my neck last year, I had a difficult time accepting that I would have life long neck pain. A year later and my neck pain is now a normal everyday experience that I live and work around so that I may continue to participate in and enjoy activities. I had to readjust my thinking and my attitude. I had to stop feeling sorry for myself for having to cope with another chronic health issue. I had to accept and move on or I would forever be plagued by the weight of this chronic condition. And so I am faced with the same requirements for readjusting to chronic nausea and abdominal pain. Hopefully my doctors and I will discover the solution for my symptoms but until then I'm learning what I can do to help reduce and manage my symptoms.

With chronic illness we are prone to ongoing fluctuations in symptoms and the addition of new symptoms as we are faced with a roller coaster of changes throughout our years. Learning to ride out the twists and turns means we make readjustments thereby allowing these changes to become our new norm. It's common for the readjustment period to last a fair amount of time and after we finally become accustomed to our new norms we are once again faced with new changes requiring all of our attention and focus.

With the aid of medical providers and our own self advocacy we are able to work towards identifying and establishing strategies to manage changes to the best of our abilities. The process of readjustment tends to include a trial and error basis as we learn what works best for us and what doesn't. With each step in the management process we further enable ourselves to adjust and learn new ways of coping, gradually ceasing the mourning of how life was prior to a change and instead embracing how we can continue to live. It is through this process that one day we come to no longer know any different than our new norms. It is on this day, we are finally living and living joyfully once again.

Feeling Your Heart

Life is a confusing, beautiful mess full of opportunities for both joy and heartache. We can take many paths in our navigation through what life offers us yet we often choose the most complicated route. We consume ourselves with fear and worry about the dreaded what if's that are never entirely answered properly as our imaginations our set free in a whirlwind of confusion. Life is not necessarily simple in our experiences but I believe we can simplify our paths by merely feeling our hearts.

Tuning into our hearts and what we are feeling can be called many things: inner voice, intuition, gut instincts, faith, etc. Whatever your preference for terminology, paying attention to the words of our hearts and souls seems to make a difference. We allow ourselves to obtain peace and comfort as we make life decisions and let go of anxieties when we listen to ourselves.

Listening to what our hearts say can only occur when we are honest with ourselves - free of preconceived ideas and intentions. We must open our minds and ourselves to all realities, not just what we want. It is easy to confuse what we want with what we need, whether it's physical, emotional, or financial. We all have ulterior motives to obtain what we want even when dealing with ourselves.

As we begin letting go of that which holds us captive through fear and anxiety, we learn to make the best decisions we can with the information we have at the time. Part of this information is knowing how we feel about a situation and about the options available.

We listen by identifying what we are feeling and allowing ourselves to feel those feelings rather than rushing through one feeling to the next. This helps in all realms of life whether it is releasing fear and anxiety, making a decision, resetting ourselves spiritually, self-discovery, and coping with life. It is particularly useful in emotional healing from grief or trauma as we cope and adjust to a life change. Not allowing the process to flow naturally and completely can be harmful as we can delude ourselves in believing that which is false within us. Rebound relationships, incomplete grieving, and yoyoing of depression and anger are common examples of rushing this natural process.

Let us not hide from our feelings, viewing them as a weakness or an inconvenience. Rather let us honor our feelings for what they are - a gift that lets us experience life in the fullest. Joy and heartache are neither to shrink back from - both lead us to the depths of unimaginable feelings and experiences that ultimately try to teach us gratitude and strength.