"Difficulty creates the opportunity for self-reflection and compassion." -  Suzanolori Parks

​​The year of 2020 has been a memorable one for sure. For the rest of our lives, we will remember this year as the year of the Covid-19 pandemic. We will remember being told to "shelter at home" and "social distance" at least 6 feet away from others, though physical distancing would have been a more accurate term.  We will remember the closing of movie theaters, malls, parks, and beaches. We will remember that churches were required to close their doors and hold services online instead and all sports were cancelled. We will remember how we were instructed to remain home and not meet up in groups outside of our household. We will remember how colleges and schools were closed and students sent home for online distance learning instead; funerals and weddings postphoned or forced to be held virtually or without attendees. We will remember how a lot of businesses and restaurants had to modify the way they functioned. We'll remember hearing that employees who could work from home were told to do so. We will remember dentists, eye doctors, and even medical clinics closing to help decrease infection risks, to help "flatten the curve", and to save on necessary medical supplies (PPE, masks, gloves, face shields, etc) that were below adequate quantities in hospital settings. We'll remember how many healthcare workers, truckers, and grocery clerks worked hectic schedules to meet the needs of others, while putting themselves at additional risks. Nursing homes and hospitals not allowing visitors, their patients being isolated and alone will also be a too hard to forget memory. And I can guarantee that people will remember the lack of toilet paper, hand sanitizer, hand soap, and even meats in the grocery store. The daily news about Covid-19 was disheartening, frightening, and at times overwhelming while our communities tried to adjust to all the changes this virus was unexpectedly creating in our lives. 

However, even amongst the sickness, negativity, uncertainty, and fear there there will also be positive memories shared along the way. Some parents were able to spend additional quality time with their children, some families actually had time to eat together at the table again, people who were always on the go were able to sit back and relax a little more than normal. Life slowed down for many, books were read, Netflix and other TV services utilized, favorite series/movies were binge-watched, walks and bike rides in nature increased, communities came together in support of those on the front-lines, new hobbies were discovered, and house chores that had been put off time and time again were finally completed. 

Personally, I found it interesting when reflecting on the impacts this virus had on my family. Yes, we were worried, concerned, and fearful about the severity and destruction that this virus was causing in the the world, in our country, state, and town. We definitely felt increased anxiety from this health crisis. However,  our day to day schedule was not thrown out of sorts like some. The major change in our household consisted of my kids being at home completing school work, instead of at school. My daughter wrote her first fictional chapter book, which is being published, and is already writing her next book. My son had time to discover additional college scholarships to apply for. More meals (and desserts) were cooked at home, while less trips were taken to the grocery store in an effort to reduce the risk of us being infected. We also stayed away from other family members outside our house in hopes of ensuring noone became infected with Covid-19. Instead, we focused on talking with my parents and other family members on the phone or over facetime. When we did happen to see my parents, we kept our visits at a distance and outside. Doctor appointments being altered was another change for me, like many other patients. Instead of in-person clinic visits, I had phone call visits with my psychologist and a virtual online visit with my gastroenterologist. Both telemedicine styles felt strange, but were still effective.

​Surprisingly, I also noticed that the way I perceived myself during this pandemic was kinder and more understanding than how I often viewed myself prior to the virus. I figure this is because I felt like I was more connected with the world, not insignificant like I sometimes believed, as everyone was expected to remain at home as much as possible to help save lives. I felt like I had "permission" to live my "chronic illness life" because it resembled what "normal healthier" people were doing as well right now. (Yes, I know I don't need permission to respect my limitations and do what's best for my body.)

Which brings me to my intentions of what I'd like to keep and carry with me after the pandemic is over. Instead of returning to minimizing my worth and value, I want to grow from this experience.
Four goals come to my mind that may help me achieve this personal growth: 

1) Continue recognizing and appreciating the blessings that surround me. Enjoy moments, make memories, and don't take for granted the time I have with my family.

2) Always walk in faith. Everything happens for a reason. We're never alone. God's in control, not us. Stop wasting precious time and energy fighting things that are out of my control. 

3) Add variety to my days. Illness may limit me in what I can do or where I can go, but that doesn't mean that my days have to be meaningless or empty. I need to ensure that I make time to participate in different activities during the day. Some examples of tasks I can look forward are....

• Read something I enjoy
• Write, whether I choose to share it or not
• Watch Netflix series and/or movie
• Cook or help cook a meal for my family
• Stretches or light exercise
• Long hot bath or shower
• Social Media visit
• Free online educational class or video
• Talk or visit with family member(s)
• Play a game
• Work on a craft or new hobby
• Listen to music
• Step outside for a little sunshine

4) Improve Self-Compassion by having a less judgemental and critical inner voice. Replacing my negative thoughts with more kindness, understanding, and forgiveness will be my ultimate goal. I believe that I was already making some progress in this area with the help of my psychologist, but definitely still have room for further growth.
 
I know that I am human, am imperfect, and that everyone will experience difficulties in life, it's inevitable. I am going to continue trying to be more mindful of my thoughts and feelings in the moment, and accept them without senseless judgement. I haven't mastered this mindset yet, even with years of attempting to, but I'm not giving up. This will certainly be a struggle for me at times, maybe more than I like to admit, but it is worthwhile because I am worthy. In order for me to be successful, I am going to have to allow my vulnerabilities to surface. I will have to face and acknowledge the emotions I experience, including the physically and emotionally painful ones, allow myself time to actual feel them without avoiding or running away from them (yikes!), and then eventually, hopefully release the negative hold they have on me. As I've heard before, "life is messy", but in reality the messiness and beauty we experience is something that connects us all together. Everyone will encounter hardships and challenges during their journey in life, and though we may feel lost, isolated, forgotten, or alone, these feelings are not uncommon or unnatural. 

Message: The Covid-19 pandemic will live forever in our minds, and will likely be around to haunt us for quite a while. Many aspects of this virus and it's impact on our lives are out of our control. For those of us that are always searching for the purpose, let's try to hold on tight to the positive personal and community growth which can be possible and present as well. 

Music is known to be cathartic for many people for many different reasons. Specific songs that speak to you in a unique and specific way. Songs that you can relate to for a variety of situations and emotions. Maybe there are songs that take you back to a special memory, that help motivate you, or that help you express love, sadness, or anger. 

I love NF's music from his early albums to his most recent, "The Search". His lyrics are packed full with emotion. Words slung together like a masterpiece. He has composed, rapped, and sung songs that help me process anger, negativity, and frustration. One of his earlier songs, "Paralyzed" helped me when I felt like I was completely numb and irrelevant. Hearing the song was comforting to me and assisted me in moving through some my lowest emotional moments.

Below I have shared a few songs from his most recent album. These have been especially impactful and meaningful to me over the past year as I continue trying to maneuver through negativity that resides internally within me. 
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I have become accustomed to the rough choppy waters of living with chronic pain, fatigue, and more due to the uncertainty of day to day life with chronic illness. Waking up feeling awful, is not an unknown reality. Feeling decent enough to attempt living and not just existing, just to pay the cost later or without notice become overcome with symptoms is not unfamiliar either. Obstacles, pretending, making difficult choices, weighing risks over benefits, all are part of my now normal routine. It’s been over 6 years since I’ve been able to depend on my body’s response to experiencing life. Granted there have been some extremely rough waters to navigate. Unexpected swells that sent me rocking, some that have attempted to flip me under or cause me to capsize. 

During these turbulent conditions I was able to hold on, and while difficult and challenging, even if momentarily knocked down, I was finally able to regain my footing and remain upright. Surviving the unsettled and dangerous waters to slowly drift into calmer waters. Dangers still lurking around, but also able to relax a little and enjoy some of the beauty around me as well. From sunsets to sunrises, warm sun on my skin, a few clouds here and there, and the clean fresh scent reminding me that life was/is still worth living. Stormy sea conditions were still present, and not forgotten, yet were not right on top of me, weren’t pounding on top of me, all of the time. I was actually becoming able to navigate semi-safely, within limits of course, to avoid some of the storms. At times choosing a path that led me to wavy, uncomfortable, choppy waters of short unwanted storms that I knew would eventually be put behind me and a part of my past. Skills and strategies were successfully used to control the impact that the unwanted mini-storms would have on me in the “big picture.”. 

However, at times, the paths before me were not as clear. There are times that I have been caught off-guard and seriously unprepared. Recently, I felt that I was on the right track. Not perfect by far, but more acceptable. Bounced around, fatigued, still symptomatic, but choosing certain situations that were more risky to be able to enjoy some views and experiences of life with my family along the way. Mentally striving and alive. Aware that I had to be cautious and careful, not completely smooth sailing, but definitely more manageable. Thinking that finally, with support, I was figuring some things out. I did not have to sit completely still, anchored down 24/7 to remain “safe”. I did not have to completely trade my quality of life for quantity. I could take short rides to explore my surroundings, relax, and authentically smile with a sense of achievement prior to returning to my dock to rest and refuel for a few days. These days or weeks of recovering, resting, refueling, and preparing for future outings were not only acceptable and understood by me, but encouraging and peaceful for the most part because I could visualize and look forward to future outings being a possibility while also retrieving positive memories while recovering. A reminder that the consequences were at least worthwhile. Sickness and limitations were still part of my life, every single day. But listening to myself, recognizing and avoiding most dangers and not expecting too much of myself, helped build more patience when having to ride out the windier wavy waters, whether expected or not, whether when living life or while anchored down.

Just as I was gaining confidence and becoming braver, testing my limits more, and taking more risk - even if just for a day or two - a massive storm formed around me. It was as if I was trapped at sea, white caps crashing all around me, out of reach of a safe familiar place to dock. I was left feeling confused, scared, and lost. At times felt as if I had been capsized with raging waves surrounding me. My sense of safety removed, no correct choices before me. It didn’t matter which way I turned or considered treading, every direction had waves crashing hard enough to destroy me. It was almost as if I had to choose which path of destruction I preferred. Did I want to go against everyone else and fight for a new line just to risk my life for a dangerous life-threatening infection, or simply give in and literally become a shell of myself,  just dangling in the waters hoping the current wouldn’t overcome me? Partially waiting for me to completely fade away helplessly, completely missing out on the chance to reasonably experience life in spite of everything else. 

Dangling in fear that I would lose my grip completely. Part of me actually wanting to let go. A larger part of me reaching and grabbing for anything that may help me remain above the surface while feeling as if I were slipping further and further under the water. Bobbling in fear of being stranded alone and empty, no meaning left, just here until I completely disappeared. Wanting and desiring so much more! Knowing that I can’t let negative thoughts, regardless of how realistic they may seem at the time, or my fears take control as the weight of them will without a doubt pull me under. Also knowing that allowing myself to hold onto everything that I’m missing, blaming myself for where I’m at or even for where I am not at, hating parts of me that I don’t understand and are unable to understand or control, would not be beneficial as they too would do nothing except pull me deeper and deeper underwater. Eroding the part of me that wanted to remain. Regardless of my knowledge, when dangling and treading in the cold violent unstable water, it’s easy to try and escape by holding on to anything that surrounds me, positive or negative.

Most of the time, I try to reach for things that will keep me hopeful and above water. I know that I don’t want to drown, don’t want to die, and don’t want to give up. I just want relief. I just want to be me, the me that I can respect, share, and enjoy at times. The me that has meaning and purpose, can be proud of and at ease with. The me that can create positive memories with my children and family. The me that exists beyond my illness and symptoms. Time and time again, I know that there are only a few things that help me survive during these times, which helps keep me afloat when everything else seems to be hastily dragging me under. They are not immediate “cures”, they don’t offer me complete safety at the moment, but they help me through moments, or if fortunate, days at a time. Medically, and mentally, my current medical team, especially Dr K and Dr S help me stay afloat if I let down my guard and allow them. Spiritually, my faith keeps me going. Part of me still believes that everything happens for a reason. I know that God is present, and even though I may never understand what His plan is or why, I'm confident He has a plan and is always by my side. When His plan for me is over, then so will my earthly life.

My family, especially my children, are monumental in keeping me afloat. THEY are what I think about when I’m at my lowest, thinking about how much they mean to me, how much I love them, how I don’t want to do anything that will cause them additional worry or pain than I’ve already caused them. Rethinking (and at times rereading or looking through photos) of the wonderful memories that we have shared together as well as the horrible ones that I have been able to overcome with their assistance (even if they have no idea of how critical they have been at pulling me through). But I don’t just think about the past, because sometimes, as positive as it can be, it can also be a reminder of times I miss so much. I try to balance my emotions by also thinking ahead to the future. While also tricky at times because it’s easy to get sidetracked with what I can’t or won’t be able to do anymore, I try to focus my eyes on the present and future possibilities of life with them. A desire to be here for each of them currently, experiencing life with them and through their eyes and accomplishments, as well as wanting to be here to witness their careers and hopefully have an opportunity to one day be a meaningful part of my future grandchildren’s lives as well, if I can make it that far. My children are my life and I am willing to survive any obstacle for them, no matter how difficult or painful it is on me. (Other things such as music can be a helpful distraction momentarily, helping me reground myself, deafen negative thoughts, and refocus on what’s really most important to me.)  Honestly, IF it wasn’t for how much I love my kids and how proud I am of the people that they are and are becoming, if it weren’t for them wanting and needing me to be a part of their life (regardless of how I feel), I don’t know that I would even bother trying anything anymore. They accept me and love me for who I am, even if/when I don’t. 

Storms from chronic illness and life may knock me back and test my strength and will, but God, my family, and a couple of caring doctors are my lifelines if I just trust them and myself enough to reach out and hold on until calmer, more serene tranquil days can arrive. (I just pray hard that I don’t cause additional weight or strain on their lives in the process or meantime.)

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