How do you measure, measure a year?
Lately I’ve found myself thinking about what a year of life means to me. There are so many ways that I think about a year. A year is Earth’s trip around the sun. A year is the four seasons that change and show us all the different facets of nature’s beauty. A year can be a celebration of age or commitment to another person. All things considered, a year is a length of time. A year is equal to 12 months, 52 weeks, 365 days, or even 525,600 minutes.
Looking back on my life so far, I remember that when I was a kid in school, the school year always felt so long. A school day full of classes and homework always felt at least twice as long as a beautiful summer day that was full of play. I remember dancing in each new year at my family's party at 12:01AM on January 1st each year. I remember excitedly putting together Valentine's cards and candies for my friends and classmates. I remember wearing all green each St. Patrick's Day to be sure I didn’t get pinched. I remember waiting anxiously for each birthday and the end of the school year. I spent months planning for my Halloween costumes. I counted my blessings each year at Thanksgiving. I counted down the months, weeks, and days until Christmas. Then, next thing I knew, it was time to dance into the next year again. Each year was full. The years were full of joy and excitement, maybe heartbreak and grief, and always full of love.
This last year has flipped my world upside down. Last August, while the rest of the world was returning to normal after the COVID pandemic, I began experiencing debilitating pain and other symptoms. I struggled with being upright for more than a few minutes because of excruciating head pain, a pulling and burning sensation in my eyes and occipital region of my skull. I was fighting vertigo, and nausea. My body was overwhelmed with pain and fatigue in a way that I had never experienced before.
On the morning of August 6th, 2020, I arrived at my doctor’s office. The nurse practitioner came into my room and began to ask questions about my symptoms, and I broke down and cried as we went over my symptoms and medications I had taken in an attempt to control those symptoms. I was in so much pain that I could barely hold my head up without vomiting. She ordered a STAT CT scan with contrast to rule out strokes and other dangerous conditions. Then, the nurse came in and started me on an IV migraine cocktail in the hopes of getting control over the pain. Sadly, the first round of medications did not do anything to help, so around lunch time they started another round of medications to try to lower my pain levels.
When this second round of medications still did not lower my pain, the nurse practitioner sat down next to me to talk in more detail about my symptoms.
As I explained my experience to her in more detail, she said, “I’m a bit worried that you may be experiencing a new type of headache, so I went ahead and scheduled an appointment for you with your doctor on Tuesday. For the weekend, I would like you to be on bed rest. For the next couple days, do your best to not stand up or sit up for any reason other than to go to the bathroom."
“Why do I need to be on bed rest?” I asked.
She put her hand on mine and said, “I’m worried that you might have a CSF leak, and I’ve shared that concern with your provider. Hopefully, starting Monday, we will be able to get you on track to get healed.”
Her eyes were full of hope, so I agreed to go on bedrest while I waited to see my doctor on Tuesday morning. That was August 6th, 2020, one year ago, that I started on bed rest for a suspected CSF leak that was later confirmed on CT Myelogram. On that hot summer day, I would never have believed that a year later I would still be dealing with this intense pain. It has been a difficult year both physically and emotionally while I’ve been on bed rest. It has impacted not only myself, but my entire family.
Physically, although bed rest reduces my severe head pain caused by my CSF Leak, bedrest has increased some of my other health issues, including: acid reflux, gastroparesis, fluid retention, and an increase in subluxations and dislocations from the lack of physical exertion. The physical symptoms are difficult to navigate through each day. The pain changes every day life. It impacts me each day both physically and emotionally. This is especially true, because the symptoms are ever-changing. For me, each blood patch I get can cause a change in my symptoms.
However, I think the more devastating impact of the last year has been on my mental health.
I went from a busy, social, employed member of society to a girl who is in so much pain all of the time that she can't even sit up without winding up sick. I have been isolated from most everyone in my life. I have only seen my immediate family members who are vaccinated, my doctors and my nurses, and a select few friends who are vaccinated. My mental health has also been impacted by the debilitating pain that has altered my ability to contribute to my household, community, and even my own healing. My inability to contribute financially to my household fills me with guilt. My inability to do chores or make dinner fills me with feelings of worthlessness. The heartbreak of each failed blood patch makes me feel like I am a failure or like I am doing something wrong. Living every day through high pain levels can lead me in a dark place some days. Often, I feel like a burden on my loved ones and friends even though getting out of bed is all I can manage to physically and mentally do. The pain is overwhelming and I frequently feel perplexed as to why the human body can tolerate so much pain from a condition that is not fatal. The darkness can creep in from every direction some days.
As a person trained in mental health, I recognized that it is important to honor that these negative feelings because they are a natural part of the grief process. To recognize that, when I can express them in a healthy manner, I can work towards finding a healthier mental state. I have also always strived to share my experiences in order to support others going through this journey so they know that they're not alone in the darkness. However, what I've learned this past year is that, sometimes, when I think I'm sharing to ensure that others don't feel alone, I'm also sharing with the hope of finding out that I'm not alone.
I am lucky to have a counselor, supportive friends, and an incredible family who have helped me through this challenging time. They have helped me to navigate my grief, break out of my isolation through non-traditional methods of visits, and have held on to hope when I have needed to let it go to lessen my burden. It is not perfect. Some days are awful. However, I strive to continue to wake up each day and remind myself that I will find healing some day.
To learn more about CSF Leaks and their impact on patients, visit https://spinalcsfleak.org/
If you are currently experiencing a mental health crisis and need immediate assistance and are in the US, please call 1-800-273-8255 or text HOME to 741741.