When You're Alone

I never truly allowed myself to believe I'd marry. I didn't think I'd find someone who would and could love me as much as I needed with my chronic health issues. I would require caregiving on a frequent basis and likely at some point, I'll require it on a much more regular basis. That is a lot to request from another person, especially from the very beginning of a relationship and a marriage. Could I find someone who would be willing to take on this responsibility from the get go? I did and I thought my life was complete...or so I thought.

From a set of unfortunate circumstances and events, I lost my trust and the life I knew had changed and I couldn't change it back. My complete life was being torn apart and divorce was on the horizon. I have a new life to fulfill on my own now.

Facing a life alone with chronic illness and the possibility for a cancer diagnosis again in my future was a terrifying choice but it was a choice I had to make. I felt completely alone in the world. Questions raced through my mind, filling my heart with fear and anxiety.

What would I do if my health worsens? What would I do if I developed cancer again? What would I do if I couldn't work anymore and support myself? What would I do? What would happen to all my dreams? Can I do it all alone? 

 Making that choice was the hardest part.

Once I made the choice, as difficult as it was, a relief began to set over me. A relief that would grow the more I shared my concerns with my friends and family. A concern that was fettered away by more and more people. My primary support system offered reassurance and oaths to never leave me alone in this world. I would be taken care of when the time came. In addition, I will be purchasing long term care insurance to ensure the financial burden of caregiving is provided for without need from others. I'm doing everything I can to ensure my own well being is cared for - by myself or by caregivers.

I'm learning more than I ever expected during this process. It never ceases to amaze me how much we can never truly prepare ourselves for all that we will encounter in life though we try.

I'm learning to value and fiercely protect my independence. To stand on my own two feet and create the life I want for myself is the greatest accomplishment I'll achieve and I am excited to create a masterpiece. To lose my independence is now my greatest fear. I will fight tooth and nail to maintain and support myself and will gladly do so. My eyes have been opened to the joy that is self sufficiency and the fulfillment that accompanies it. I'm finding that independence is much more than financial independence - it is the emotional and mental survival in the face of destructive forces.

I'm learning to cherish my support system more than ever. I'm gradually becoming accustomed to turning to the people in my support system when I need a shoulder to lean on. I'm discovering that independence isn't not leaning on anyone ever but discerning between periods when I can handle an emotionally tough time on my own and an overwhelming period when I need my support system's aid. I'm letting my people be there for me and am gratefully returning the favor.

No matter what is yet to come, I'm looking forward to tackling each issue with a new set of skills that I continue to hone. And I've realized, we're not alone after all - not as long as we let others in.

Anxiously Awaiting

The last year has been a monsoon of emotions and personal events that included a long bout of depression from increased health issues, the death of a beloved great uncle, and the emotional loss of individuals I once deeply cherished. With the ups and downs of the last year, I embarked upon a path of self discovery and self transformation. I am finding peace within myself and loving every moment of it. However, patience is by far not my strong suit.

There is a great number of things I want to accomplish this new year yet I'm constrained by time. Time inhibits my ability to complete my actions, my goals as quickly as I'd prefer. I must wait for the right time or for the process to be completed for each personal goal. I'm left anxiously awaiting the passage of time as I fervently work toward creating the life I want.

There are times when my eagerness surmounts in an exhausting, terrifying ball of anxiety. It catches in my throat, words can barely be uttered. Tears well up in my eyes, desperate to escape. My chest tightens, constricting upon itself as my mind races trying to calm itself. I repeat my self soothing mantras, frantically reminding myself that it is only anxiety...I'm not having a heart attack. Although it feels like it.

It's easy for us to get ahead of ourselves when we are so intent, so earnest for the arrival of what we want. It doesn't matter what it is, we tend to want what we want when we want it. It's hard not to jump ahead and just have what we want. We think if only we could fast forward time! The world doesn't work this way though. We need to wait for others, we need to allow time for the process, or we need to move forward in a systematic way - achieving one step at a time. But really what we need is to simply learn patience and enjoy the journey. The journey is what fulfills us after all. The ability to look back and realize I did this, I accomplished this, this was me!

Learning patience isn't easy. As a highly impatient person, I feel as though my strides in learning patience are minuscule even though I notice a difference in how far I've come in the process.

When the anxiety of impatience has a stronghold upon me, I have to remember a lot.

• I remember it's merely anxiety. If I want to calm myself, this is the vital first step. Until I understand it's just anxiety, my mind will keep racing and heaving more anxiety upon me. Self talk and breathing are essential in calming my anxiety provoked fears.
• I remember what I'm doing to achieve my goals and what I still need to do. I map it out. Where I've been, where I'm going.
• I remember my plans for reaching the next steps in my plans. Without steps lined out, I'm simply waiting without direction.
• I remember I'm doing everything I possibly can. Some things are out of my control but I'm doing what is within my control. I'm not passively sitting and waiting. I'm taking action.
• I remember it isn't always the right timing. I won't be able to obtain solutions until I can gain more answers. Answers that are only available when the timing is ripe.

The next time the anxiety of waiting hits, remember where you are, where you've been, and where you're going. This helps to keep the small details in perspective to the larger picture at hand. Although the journey of patience can be infuriatingly frustrating and difficult at times, in the end it is far worth allowing the process to take its course. We gain great insight, wisdom, and skills when we push the anxiety aside and continue on our path.

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.