Ok, I don’t necessarily believe that phrase. I believe people have a right to vent, be angry, even say unkind things in letting off steam. Being “nice” is definitely not necessary. I just realized I was shifting away from the core of who I am, which is an eternal optimist thrown in with a healthy dose of reality.
What I realized for me personally these past few months is that I have been hit by a lot that sent me from a mode of being strong to being a victim. It felt like my personal life and my health had fallen apart and then we had to throw in a global pandemic.
I have had 2 different neurologists agree with my meningitis diagnosis. Meningitis, unless you have had it, is a beast. It was the worst headache I had ever experienced combined with unbearable physical symptoms. The worst part was my shift in personality. I went from living a life of healthy grief for a lot while maintaining my gratitude to get by, to feeling ugly, seeing everything as ugly, and generally hating everything. I still could say I felt grateful for things, but it was a lost art as my life path.
I forgot about the wonderful people and friendships that have come into my life the past several months as the meningitis plays so many tricks in your mind. I knew I didn’t feel right. I knew I felt dark, but I also didn’t know what to do as it took awhile to get a diagnosis and subsequent treatment for it. I was really sick.
The symptoms correlated to when I got my stem cell injections. Although there are studies of negative reports of stem cell injections, I can never say the stem cells caused what happened to me. I might have had a strange infection in my body at the time, or maybe there’s some filler or binder that was in the stem cells themselves that made a perfect storm for me. Perhaps it was just bad timing of something about to hit me regardless. I wouldn’t go back and change anything even with becoming very sick that is finally letting up a bit. Stem cells were a gift to me that I genuinely appreciated. Meningitis, no matter how it came about has been pure hell. The hardest part for me is that I will never know.
As the Coronavirus pandemic started to become very real in the United States, I didn’t think it would affect me much. I stay home a lot anyway, it felt like a welcome time to force myself to rest, and I had the thought of it being a perfect time to catch up on things around the house until the anxiety set in…
One of the things I have been extremely proud of in my trauma healing is my ability to manage my anxiety. I received a scholarship to do unlimited livestream iyengar yoga classes through a studio in Berkeley, California. I was happy to continue my yoga classes until a couple days in, I took a particularly intense, yet beautiful class that pushed my strength beyond what I knew I was capable, but at the end where you lay in a quiet state of savasana, I was on the verge of a panic attack. I felt like I had lost control. Not lose control in a pathological way like I did anything strange or hurt anyone. It was more like a mental loss of control.
So I sat with that anxiety for a handful of days. In sitting with my anxiety, I deactivated my online presence. I shut down my Facebook account and removed this blog from public viewing. As many with a trauma history can attest, feeling powerless over everything is a bit triggering. It mostly triggered anxiety, but it also put me in a victim mentality. Instead of feeling strong, I kind of wanted to hide. So I did. I honored that.
In my hiding, I continued to message a woman I befriended who is extremely ill. Our relationship is one of words. She doesn’t have the strength to talk on the phone, but she can write the most meaningful, powerful, and insightful things to me, especially when I can’t see the point in anything. Through her words and reaching out, I realized my power lies in my own actions, who I choose to be as a person, and how I react. Understanding I don’t have the power or control to fix a global pandemic, a situation in my personal life, or even fix my health (although I will never give up with my kale, yoga, and doing everything possible from my end to make it better). The peace of remembering I have complete control over myself was a major shift from the anxiety I had been experiencing to a sudden calm. My extremely ill friend was there to message me several times a day to champion my discoveries and sit with me in sadness. We also joke, laugh, and simply write about the mundane. Despite never meeting me, she knows the me of today probably better than anyone I know. There’s power in having a relationship of words that flow and flow, exactly like a pen pal of the digital age.
I wasn’t ready to have an online presence. I realized how much I hated Facebook as even though I make an attempt to be as real as possible with my health struggles and victories over them—sometimes, it still gives a false sense of who I am in what I’m able to achieve, which lately isn’t much beyond my basics. My basics take a lot of energy. Following a strict anti inflammatory diet isn’t as simple as popping something in the microwave. It takes planning, diligence, and willpower to get in my 8 servings of fruits and vegetables a day and eat fresh foods that aren’t processed. It’s not a rich, bourgeoisie thing. My grocery bill actually went down as snacks and junk food cost a lot. My ill friend pointed out to me again and again as I drug my tired body to continue to eat healthy and stretch even as I managed dealing with the symptoms of suspected Coronavirus as assessed by one of my specialists. I didn’t get tested as I would have had to go to a drive thru testing site. When you get completely winded, dizzy, and have a high fever, driving didn’t feel safe. My coughing wasn’t going to make it any easier either. I had to promise to call an ambulance if my symptoms got really bad as having a diagnosis of pulmonary sarcoidosis puts me at a higher risk of complications.
So I basically did nothing for 9 days. I know how to eat healthy for nasty disease. I was very still or asleep 20-22 hours a day until a dog would stand on me and cry to be let out or fed. I kind of resented my dog’s needs for several days, but like a small child, they have to have care that I had to provide. It’s not like with my suspected Coronavirus, I could call someone to just help me out. So many who have had it have called it a “lonely disease”. People did drop off my prescriptions, fresh foods, and even a little love.
So the pandemic that wasn’t going to bother me, hit me personally. It also hit me in other ways. I feel the emotions of others. I could feel the frenzy of my neighborhood website as people begged for ideas on stores to find the basics or vented about how anxious they were. The virus didn’t probably just enter my body, it entered my soul. I worried, probably too much about friends losing jobs. I stressed terribly over friends I wouldn’t hear back from for several days. I deeply care about people. If I send you a text asking how you are knowing fully that things have gone downhill, I expect a 5 page essay outlining all the intricacies and complexities of how your life is as I wonder. I worry. When I get back a “fine”, it almost hurts my heart as I truly want to know if I reached out. In this pandemic time, someone said to me, “Lizzie, you need to stop caring so much”. It’s probably true, but my circle is my circle and know people don’t have time to outline their lives in a time of social distancing as my friends are have hit their own panic button, well except my very ill friend. I also did my own distancing as talking became an impossible feat of losing my breath and coughing.
I’m not completely sure what the point of this blog post is except to say I had to disappear to save my own sanity as my focus had to become internal instead of distracting myself with outside problems or influences as everything had become just a little too much. Within a couple hours of activating my Facebook account again, I found myself angry. You can’t explain via Facebook that an hour outing in beautiful trees doesn’t equal wellness. It equals the fact that i needed a much deserved break from the banality of laying in my bed day after day and my smiles were genuine. They were also mixed in with barely being able to breathe and coughing fits. (Not one soul was around, so I was being a responsible social distancer!) So I don’t know if I’ll keep any kind of online presence. I know showing my reality on Facebook has inspired many. I know this blog has been a lifeline for several based on personal messages, emails, and comments.
I’m in a place of “I don’t know”. My health is precarious as no matter how beautiful the pictures are of my going out to enjoy nature for an hour where I didn’t move around much, it has left me a bit feverish, given me a sore throat again, and falsely represents how “easy” my life is.
I went out today as being holed up in my house for weeks with my human contact being through a screen has been hard. I knew I would pay a price physically for my outing but sometimes filling your soul is just as important with healing.
So this blog has been extremely important for me. It’s been my therapy in many ways. It allowed me to express my sorrow and joy. It often helped me figure out the beauty in a lot of chaos in just writing it out.
The world is shifting, and so am I. We can’t predict the world shift. I can’t exactly tell you the trajectory of my own shift. I know my WordPress subscription is paid until June at which point I’ll decide if this is my path or move onto doing other things. I have lots of things I want to do!
For me, the beauty of losing control was to gain some back. A pandemic frees us from distractions. It’s given me time to rest through my illnesses without the guilt of not being “productive”. It’s allowed me to realize that in my forced isolation, I have so many. It’s giving me time to think about what is feasible for me given my limitations. Just because I’m handed several wonderful opportunities doesn’t mean I have to or even CAN fulfill them. My life is important whether I continue to be frequently debilitated by illness, living a simple life, or create a shift in thinking through my art and writing in a more public way.
For now, I give myself a huge pat on the back for taking great care of the basic parts of life and realizing that gratitude and grace lie in sometimes the tiniest things. The world may feel like it’s spinning out of control, but the sun rises and sets each day as it has for an eternity. The sun brings me joy even when my joy is experienced in a forced solitude.