I have been trying to write this for weeks, but I’ve had no inspiration or ambition. Today was an exceptional day and I’ve had a strong cocktail, so I am ready to get real.
I try to keep my Facebook posts and external persona… to be as positive as possible. I try to not post or share negative comments. I don’t share my woes because I don’t want anyone’s pity. I know so many others have it way worse than me, so I have no right to complain. I put up a positive front, but it’s a smoke screen. I’d like to think that I’m fine, but I am not.
As some of you know, I suffer from fibromyalgia, which causes me pain, debilitating fatigue, insomnia, depression (in the form of lack of ambition and crying for no reason), wanting to sleep all day), anxiety, lack of focus, short-term memory loss, digestive problems and general malaise*. It keeps me from working a ‘regular’ job, which is why I teach. * This actually reminds me of my pregnancy… but that ship has sailed so don’t worry.
I am not myself and it sucks. I don’t feel like communicating with friends or taking on any kind of responsibility. I’m a social creature, so this goes against my nature. Most days, I sleep 10-13 hours, usually during the day because I can’t sleep at night when my pain and digestion is at its worst. This aggravates my aches and pains, so when I am out of bed, I medicate with cannabis, pain relievers or alcohol, sometimes I do all three. I know this is not healthy for me but what choice do I have. One day last week, I was out of bed for only 5 hours. Every muscle in my body hurt. My hands were curled up in spasm. I had difficulty walking without support. I felt like I was dying that day.
To compound the situation, a few things happened. My dear friend William, who is like my brother. He was my lamaze coach and helped deliver my son Dexter. I got married at, and lived in his house after returning to California. I nannied his boys, bonded with his wife Katie. William was family. He died suddenly in December, just a week after we saw him. It was like a dagger through my heart.
The second thing… I developed new symptoms since November: lack of appetite leading to weight loss and what I perceive as unusual bruising. A decade ago, I had bladder cancer which was extremely rare for somebody my age and gender. My doctor warned me that this kind of cancer almost always returns. My dad died from his second bout of colon cancer, so cancer is on my mind. I had blood work done and everything looked fine. My bone scan showed that I have suffered bone loss, due to early menopause, which puts me at risk of breaking bones. I was scheduled for my annual cystoscopy (a year overdue) and a colonoscopy to rule out bladder and colon cancer. Both my procedures were canceled because of the pandemic. So I still don’t know what’s going on with me, which increases my anxiety, blah blah blah. I am taking a ton of supplements, hoping that something will help.
The worst part is, I feel guilty about my condition. Let me explain.
I’ve had 14 years of survival training at Burning Man. I survived a divorce, losing my ability to work due to a work injury, being a single mom, caring for my parents as their health declined, dealing with their deaths, POA and financial responsibilities. I spent years emptying my family home and managed an expensive and lengthy renovation, and eventually the sale of the house. My sister Clare has been waiting to start her new life in Canada with her husband, and I wanted to give her the nest egg my parents intended. I feel so fortunate that my husband, Eli, was able to finance and facilitate the renovation, which benefits my sister, myself and my son. I could have never done it on my own. Unfortunately, after the years of my efforts, the outcome of the sale has caused a rift between me and my sister. This is not what I intended.
So why do I feel guilty about my condition? Its because I like to see myself as super-human. Although I am not big and strong, I do have skills… not nun-chuck skills, bow-staff skills or computer-hacking skills. I have skills like sewing, teaching, writing, organizing, using tools, the ability to fix things and use obtainium (things that would usually end up in landfills). I learned resilience and how to use resources at hand, from my parents and for that I am grateful.
This pandemic is exactly what I’ve been training for. I should be making masks for 12 hours a day. I should be doing my part in saving the world, right? But the truth is, most days I can’t even get out of bed. A few days ago, I ran out of my medication because I wasn’t paying attention. I can’t even care for myself. Fail.
Yesterday was the first day that I felt good in months. I don’t know why, but I suspect it’s the change in weather. I suffer the most during winter storms, and in Tahoe, it stays cold for a long time and the high altitude is hard on me.
Yesterday I went to the beach while waiting for my prescription, something I don’t usually have the energy or gumption to do. I finally started sewing and prepping sock monkey kits (a fundraiser I am doing for our maker space, Truckee Roundhouse). Today, I went for a hike with Eli into the woods near our house, then walked to the beach in the evening to view the SpaceX satellite constellation orbit overhead. It’s the most exercise I’ve had in maybe a year. We watched the sunset over the glassy lake. It was magic.
I felt human again. This hasn’t happened in so long, the experience made me cry. Days like this just don’t happen for me. I am careful to not have false hope, because I know I can’t maintain this good feeling. I just feel so grateful that I had these two great days. I have no idea what the future holds, but I always brace for the worst and hope for the best.
I am finally sharing this because I needed to own it. We are all suffering right now. We all have our struggles. I know I am not alone and want to let others know that they are not alone. Today I was reminded that these struggles don’t make anyone less of a person. I can still enjoy a beautiful sunset.
To be human is to suffer, but it’s also to know… that joy is still possible. Bottom line, keep hope alive. Namaste.