If you are anything like me, you approach a new year with reflection and anticipation of what lies ahead. I have never been the type who has to stay awake until midnight to ring in the new year if I am not feeling it, but this year I wanted to remember kissing a rather horrendous year goodbye, and usher in a new beginning. Not one for new year’s resolutions, I instead pick a word each year and do my best to incorporate it or live up to it as best as possible. For 2020, I’d chosen “intention.” In January of last year, after years of putting myself last, I was finally starting a new job in a career field I found by happenstance. When I applied for this job, I took a chance, not thinking much would come from it other than some interviewing experience and some insight into future possibilities. Not only did I get the job, but my first day was my birthday, ensuring I will never forget my work anniversary. I started grad school two days later. “I must be crazy!” I thought to myself. How do I balance work, grad school, and keep up with the kids’ activities? I had no clue, but I knew I would make it work. Life is always a crazy mess around here, with equal parts wonder and controlled chaos.
By early March of 2020, I settled into the new job and handled what was expected in class. Things were looking up, and I was excited about our first hybrid student lunch and lecture series, the one that was scheduled for the Monday after the world shut down on Friday. The forfeiture of that event and my plans would be a new normal, but at the time, I was just angry and felt like everything was an overreaction. By the end of that following week, however, I felt this queasy feeling in the pit of my stomach as I realized this was not going to be a quickly passing semi-emergency. Throughout the long, hard months that followed, I felt the burden of loss for people I would never know, collective hurt for a nation that I love, and the pain and suffering around me. I hurt as I watched acquaintances say goodbye to loved ones, fearing it was only a matter of time before my inner circle would face the same. I worried about whether I would have job security; after all, I was the newest hire. I had to shift my focus so that the “what ifs” would not consume me.
The sense of loss, the fear of the unknown – it was all too familiar. I found myself reliving thoughts and feelings from 2005-2006, when I was a brand spanking new military spouse and mom to an infant that I was raising relatively alone. My then-husband was deployed overseas with the Army in support of Operation Iraqi Freedom. That whole year I had felt the same sense of trepidation many of us have felt since March of 2020. I watched as we lost soldiers back then. I counted the days during blackouts (no outbound communication is allowed when someone dies in combat so that others do not find out before the next of kin), hoping and praying that I would not be the next widow. COVID-19 has been much like war for me in that sense, a battlefield unknown, an enemy unseen, and death that seeps from its wrath without caring for who you are, what dreams you have, or who you love.
September 2005. The other end of the line went dead. Moments before, in the dead of night, while lying in bed, I had been talking to my husband – me in Washington state with family, and him in Iraq. I heard blasts; they were under attack. A widow, I was going to be a widow. I just knew it. It was days before I heard from him again. I lived for days with the worst of scenarios in my head, unsure if he would live or die. He was fine that time, but I will never forget the all-consuming anxiety and fear.
This virus can make me feel crazy in a similar way. Never had we been so anxious to go to the grocery store, to hug anyone outside of our immediate household, or to face the judgmental stares of strangers if we forget to wear our masks. I am not a widow, but I never did get my husband back from war; he came home severely wounded, with a brain injury, and my life was never the same. Suddenly I found myself thrust into the reality of life as a 22-year-old wife, mother to a baby, and caregiver to a husband who could not function without constant help and assistance. I chalked up my horrific lower back pain to the stress of caregiving (spoiler alert, it wasn’t). Besides, I was far from a priority at that point. In the coming years, along with worsening ankylosing spondylitis (AS) symptoms, I experienced profound grief, ambiguous loss, and compassion fatigue, learning in therapy the terminology for the things I was feeling. Ambiguous loss and grief are when you are grieving someone who is physically present, or more broadly, grieving a loss that’s unclear and without a resolution. It is quite common with brain injuries, addiction issues, dementia, and now – an ongoing pandemic. Compassion fatigue results from physical and emotional exhaustion that affects your ability to be empathetic to others.
This pandemic has changed our lives, and any loss and grief we have experienced as a result is real, even for those of us blessed enough to not lose loved ones. It has been a painful, difficult, stressful year, and I think it’s important to acknowledge that. To acknowledge the toll it has had. Someday it will seem like a distant memory, but it could be years before we fully recover from the financial, physical, and emotional impacts and trauma with which the pandemic has ravaged us.
I’d like to share a few things I found critical while I was a military caregiver that have been instrumental to me during these long, hard months.
While I know I cannot control COVID-19, I can be as prepared as possible should I (or someone I love) get sick. I try to have plenty of water, Gatorade or another similar drink on hand, fever-reducing meds, a thermometer, a pulse oximeter to monitor respiratory rates, washcloths, and many blankets. I feel better equipped to handle illness when I am prepared, and have taken panic out of the equation.
The COVID-19 fatigue is real. I have found that keeping in touch with family and friends is so important right now. Many of us feel more isolated now than before the pandemic. While I have adjusted my interactions with loved ones to allow for safety measures, I know that it is vital to keep in touch with people. I notice my mood shifts for the better when I give a friend a call or text to vent or catch up. Checking in provides a reboot, and I feel better the next day.
I am using this time to write and read a few books that friends have suggested. I shelved a writing project, but it is time to get back to it because I might not have this kind of time again. It feels good to maintain some level of productivity when many other things are out of my control. Also, we all know the soul-crushing fatigue and pain that spondyloarthritis can bring, so if this time offers the chance for some extra rest and that is all, that is enough. I will just say, find something that brings you joy, even if you have to dig deep, and even if it is something small.
As a chronically ill person, I sometimes feel as though I do not have much to offer. Still, I often remind myself that my value and worth are not aligned with whatever medical condition(s) I have. I can contribute to society and my community. The ability to connect with others living life with spondyloarthritis has brought me so much comfort. I love being able to give back through co-leading our local SAA support group.
Even though it feels like this pandemic is never-ending, I know there IS light at the end of the tunnel, and this too shall pass. While I did not intend on being a full-time graduate student during a pandemic, and I have had days where I want to give up, it turns out it really is what I need right now and helps keep me focused on something else other than everything that is wrong with the world.
I do not have all the answers, but I know that we will get through this, and while the world may look different on the other side, we must keep chugging along. If you find yourself in need of further help, please reach out – you are not alone.
Editor’s Note: It has, and continues for many, to be a very difficult, exhausting time. While we at SAA are not mental health professionals, we do have resources to share, and are here to offer support, information, and lend an ear. Support groups, message boards, up to date and accurate information, caring staff, and links to crisis intervention resources if needed, are some of the things we can offer. Please reach out if we can be of help. And if you’ve enjoyed this story, we recommend reading an online article published by Elemental, and written by Tara Haelle, called “Your ‘Surge Capacity’ Is Depleted – It’s Why You Feel Awful.” The article expands on many of the themes touched on in this story. Our deep thanks to Sara for sharing her story with Spondylitis Plus.
Sara Shaw writes true-life stories and turns her mess into her message. Her life’s passion is to inspire and encourage others to live up to their full potential. Sara is currently completing her MS in higher education administration at Duquesne University. When she is not studying, you can find her missing the gym while trying to survive the trials of life with spondyloarthritis as a single mother to her teenage daughter and pre-teen son. Sara co-leads the Pittsburgh SAA support group and loves being part of such a wonderful community.
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