I’m freaking out. I’m freaking out about the rapid spread of Covid-19. I’m freaking out about this upcoming election, knowing the resources I depend on as a single mother of two could change drastically as the government's funding shifts in various ways. I’m freaking out about the health and longevity of my family, friends, loved ones. My anxiety levels are at an all time high. I know I’m not the only one.
This has very clearly become a frightening time in our history. Not only for our country, but for humanity. Many days, I feel that my story in the grand scheme of things - and the story of my family - is small. That our voices, thoughts, and struggles don’t need to be shared, because ultimately, we’re surrounded by people with only their own intentions at heart.
The truth is, my story IS small. But... I’m not the only one with a story like mine. My concerns are just that of one person. But... I’m not the only one who feels the way I do. My fears and anxiety are just mine to deal with. Society has provided us all ways to deal with our fears and anxieties on our own. Quarantine is showing us just that…our resources to keep to ourselves are LITERALLY at our fingertips. I can get my groceries delivered to me. I can do work on my computer. I can stream any sort of entertainment for myself and my children on my smart tv, my old iPad or my phone. I can use an app to talk to my therapist about my fears and anxieties.
But how do I teach my kids, who are now sheltered at home now to care about others who are living with less or are struggling more than us? How do we teach our kids to consider others when it feels virtually as if it’s every man for himself?
I guess this is where social media and the internet in general may come in handy. And it’s the reason I feel the need to share my story today.
In 2014, I was pregnant with my oldest son, Leyton. At the time, I was living the freelance/stay-at-home life. In the 4 years before he was born, I had started experiencing vertigo, numbness and tingling sensations in my body, overall aches and pains I couldn’t explain, and bouts of fatigue unlike those I had experienced during my depressions. I had begun to seek answers for these symptoms, but I didn't have much luck.
Then Leyton was born. And about 3 months after he arrived and my hormones started to rebalance, my body became VERY much imbalanced. I was too weak to lift my baby. When I would sit him in the bath, I’d almost fall into the tub every time. This escalated quickly, then one day in October, I woke up with a severe pain in the back of my left eye, which ended up radiating into my entire skull, down my neck, into my left arm. Initially I thought I was having a stroke. Through several visits to the neurologist, MRIs, and a lumbar puncture later...it was determined I had multiple sclerosis.
I told family. I told close friends. Eventually I had to start to tell coworker, clients, potential clients and coworkers, more friends, my son’s teachers...While I wanted so badly for it not to affect me and my day to day life, it was inevitable that it was affecting it and would continue to do so.
As a creative type who made a very small living off of creative projects and endeavors, it became abundantly clear that I needed more. More health coverage for me, more financial means for the kids (and my medical treatments), and more stability as a whole in my life. So I worked my ass off. I worked my ass off as long and as hard as I could. Unfortunately, working your ass off = extreme stress. Extreme stress = very bad for MS.
I went into debt. Continual MRIs, treatments, prescriptions, therapy. None of this is cheap. And it's even more expensive when you have something called multiple sclerosis, where only a small fraction of the treatments are covered under insurance, and the cost to meet deductibles are high. What you don’t expect is the guilt that comes with MS...or I suppose that comes with any diagnosis that is life-altering. For me, the guilt came in the form of a question: “What good am I to the world? What good am I to anyone?” I tried intensely to prove, not only to myself, but to everyone, that I still had value. By doing that, I continued to pile on the guilt. At any point in time if I physically and mentally couldn’t deliver on a task, my value lessened. To be fair, I may have had people in my life contributing to that. But I should have seen what was happening...I was allowing myself to disappear. I was allowing myself to become nothing.
So here I am. Almost five years later, and I have had to make some huge changes in my life in the hopes that my body will begin to heal enough to thrive a little bit longer. And it’s a hope that many others have living with cancer, autoimmune disease, chronic illnesses, you name it. I’ve socially distanced, I’m tired, very tired. But I now know (and maybe sometimes have to remind myself still)...that I'm NOT nothing. I am a person. I can still contribute to relationships. I can still contribute to the development of my children. And maybe, by opening up about my multiple sclerosis, I can contribute to the horrible healthcare situation we find ourselves in as a nation.
I have multiple sclerosis. I may speak more about it at other times, because I'm afraid of what's outside my door right now, lurking. Many people like me may be affected by Covid-19. Many people NOT like me may be affected by Covid-19. Every one of us will be affected in some way undoubtedly. I’m not really sure what life looks like moving forward. Which is why I feel it’s so important for people to share their struggles and share them with their kids. There is still so much we can do for others to show empathy and consideration, and to let others feel as if they're not alone.
Please share with me ways you’re teaching your kids to care about others while we all live in a state of isolation. I’m looking for ideas for my kids and I’ll share anything I find. We are now in this. We're all in this together.