I was hesitant to join facebook for many years. (I have this issue with making sure I’m not “trendy” – no facebook, twitter, or hashtags for me, thanks. By the way, I am using all of these now). I finally gave in to facebook after it reached 1/2 billion users. Since joining facebook, I have joined a few debates where I left feeling more angry, annoyed, exasperated, etc. Sometimes I’ve gotten caught up with reading negative stories and comments, which always leave me feeling worse. I often think about the usefulness of spending time online and sometimes feel shame and start criticizing myself for sharing too much. These experiences remind me of a recent article I read on FB about how everyone is angry all the time, so we go online to express our anger, and become more angry.
After some recent reflecting, I realize how great social media has been for me. For me, the good far outweighs the bad. Social media has pushed me in ways I never thought possible and for that I am extremely grateful. My struggles have changed my entire life and as I’ve shared some on social media I realized social media sites don’t have to be a negative experience.
I have been trapped in a body and mind behind barricades stemming from sexual abuse starting when I was 9. I grew up feeling like the way to show strength was to keep private things private, cope with things on your own or bury them, don’t let people see you struggle. This was my mantra. I coped with my continual physical and mental struggles by putting up walls and not letting anyone in.
When we learned of our son’s disease (Tuberous Sclerosis Complex or TSC), I felt broken. I was mad at my life and felt it was unfair. I wondered how this could happen to me after all that I had been through. Throughout the following years I started to gain strength knowing how much I had already endured in my life. I’m not yet to the point of being able to say I’m grateful for my struggles, but I’ve started to see them as a necessity in preparing me to be Nami’s mom.
Starting at age 4 months, Nami started to have life-threatening seizures. Over the next couple years things got progressively worse. By mid 2012 I was desperate. I spent every moment of every day and night fearing for his life and keeping on top of medications, appointments, tests, and surgeries. I felt such intense shame for not being a better wife and mother (especially to our 2nd son) and for not doing better at work. My world was crumbling all around me and I could no longer sleep, breathe well, or carry out minimal daily tasks.
When things were at their worst, I was so tormented that I began to fear for myself in a way I never had. By the Fall of 2012 I went to my first doctor appointment where I was actually able to acknowledge my depression and anxiety. I hadn’t let myself go there before because I was so worried about being a pillar of strength, which I thought meant coping with it all on my own. At this time I started my first blog (afteritsoaksin) where I shared some of our struggles of negotiating our lives with TSC.
A few months later, I saw a therapist for the first time. I started to acknowledge the sexual abuse and the potential impact it has had on my life. I began to feel like all my struggles were tied to the abuse. I started to chip away at the giant walls that have suffocated me. As I was able to start this process I opened up more and more online; first by being more involved with the TSC community and then being able to actually start writing about my abuse in the Fall of 2014.
I feared a giant negative backlash for sharing such personal experiences, for coping too publicly. But I kept feeling like I should continue on this path. I realized there was something about sharing my experiences online that helped pull me through some of my darkest hours. I was finally able to consciously admit that my life was hard for me and own it rather than telling myself how weak I was for not enduring things better.
My definition of strength changed as I started to be vulnerable and allow others see my imperfections and my struggles. It is liberating.
Despite my initial reservations of going online, I realize that my online communities have saved me. I’ve connected with families from all around the world who share in the difficulty of negotiating their lives with the rare condition of TSC. I have connected with countless survivors of sexual abuse who give me strength and a desire to live. I realize I am not alone in having a difficult life. Rather we all struggle and it’s through enduring our struggles together that we form the best kind of human bonds. The internet has made it possible for me to be in touch with people I would have otherwise never met.
I realize that the trials I’ve endured have helped me empathize with Nami in a way that wouldn’t have been possible without them. I have learned things from other families online that have aided me in finding the best possible care for him.
Most importantly though, being Nami’s mother has pushed me to learn to connect with others and to find my own healing, which in turn makes me more available to care for my children. People tell me I’m strong and that I was meant to be Nami’s mom. I know that Nami was perfectly made to save me.