Before I say what I need to say, I need to say this about a question my friend “C” and I have been wondering for years- why do people criticize other people’s social media choices? I always wondered about my friend’s question. I adopted it as my own. We have wondered together for a few years now.
Why? Hide them. Don’ be friends. Don’t look. HIDE THEM. Block them. The why always escaped me because there are so many reasons NOT to judge people for how they use their social media. I will say it again. Don’t be Facebook friends. Hide them. Block them. HIDE THEM.
After I shut down my personal page, it hit me. A longtime friend just said to me, “Oh, dude I JUST saw you on Facebook…” Like he just caught me with a smoking gun and a dead body because I'm off Facebook now "personally". I think I called him an “asshole” and smiled and continued reading. It would take some explaining. But yes, he saw Ugly Like Me, an MS page, on Facebook. I manage it. It’s my MS blog’s page. I share that aspect of my life on there. That’s the point. So, umm yeah, BUSTED. You got me!?
When my friend said this in jest, it hit me. People will criticize how you use Facebook and social media because we love to criticize everything and everyone, everywhere. He was just saying it in jest, but you know there are half-truths revealed in such jests. It’s what we do as humans. We hunt each other down with criticisms, nothing constructive, just for fun. We catch someone, unhook them and throw them back into the water again. Repeat.
I am no different, but I am trying. It hit me when he was messing with me-why should social media be any different?
I DID deactivate my personal account, but not my MS pages. I fear some people worried I didn’t “like” them or they hurt me. I hate hurting people. To those people, “No worries. I am still here. The MS part of me anyway.” These days MS is getting bigger. Sadly, that is the biggest part of me lately, and I have much to share and look forward to listening to your stories. I find them inspiring and healing. I just don’t have a personal account anymore.
So, why did I deactivate my personal account? What’s the difference?
First let me say Facebook can be a cesspool of drama and ick. It can ruin lives, cause drama etc. BUT, It depends on who is using it and why. Like any tool-it can be used for good or bad. A knife can be used to cut an apple or…yikes! For me, it saved my MS. I suddenly wasn’t isolated when I was sick and alone. The depths of my despair and depression were unknown until I spoke about it, wrote about it, and shared on social media. Finally, I wasn’t alone. Knowing that single truth has been so healing. I don’t think I’d have made it to the six year mark with my legs in tact (mostly) if I hadn’t used it as a resource.
You don’t need multiple sclerosis to understand. You need something that weighs you down, something you can’t seem to get above, something that takes your breath away and sends your heart racing to GET it. If that is you, please know, you aren’t alone. That is why I started Ugly Like Me. That’s why I won’t let it go.
With MS and social media and technology, we can disseminate information and feelings that inspire us to heal. We can create technologies to adapt to how our disease presents. There are applications to help us better manage our disease. We can share information at lightening speeds. I organize with people from all over the world; people I would otherwise never have known. It is a magical tool. A gift of healing.
In my personal life, however, Facebook has done quite the opposite. It ruins families. People who should be interacting, calling each other, wishing them a “happy birthday”, holding hands, showing up, were using Facebook as an out, an excuse to do none of the above. People no longer have to call, or send even a weak text, they can say it on FB.
OR, they have evolved from the Facebook out and don’t get in touch at all but your pics and life are free. If they feel they got enough of their “family” by stalking walls and looking at pics, they don’t need to say it at all anymore. They have their fill without the drama. Facebook should be a supplement for families; a way to enhance when there is no other choice and we can’t engage in other, REAL ways of interaction, but it should never be a substitute for family. I'm tired of watching the destruction unfold on a computer monitor.
Facebook gave me many things; hope, a future, a way to make a living when I felt I was nothing and useless. Sanity during illness. I could see my grandfather when I was states away, while he was still alive, but very frail. But it cost me something dearly. It cost me my family too. I won’t let people “check” in on me to satiate their fear of real, meaningful, functional relationships. I won’t. So I deactivated.
So, there’s your answer. That is why I choose not to reactivate my personal account. Personally, it took too much from me. But with my MS, I want to believe that whatever the heck is happening, I can use it to help someone else. If I don’t, I will live a life of pity and without purpose. That is my greatest fear. I need to find my Divine Purpose before I go on to the next world. ULM stays.
I feel quite pathetic lately. Perhaps even embarrassed. I won’t go into details. BUT, I hold on to this-if I keep Ugly Like Me, if I help someone, somehow, in some way, then my life has had purpose. That’s all I want my kids to get from knowing me. That we are endowed with these unique talents. Life’s circumstances, how you handle them, is what brings that OUT of us. I don’t care if it’s something “tragic”-as long as it comes out. I NEED them to know this.
Even if it’s small. Or icky. Or painful. I want them to know I had the courage to stand by whatever purpose this universe has dared me to find in the shittiest of situations, and nurtured it until it came out.
I want them to watch me do it face-to-face, not via Facebook. I want them to know my heart from words spoken to them, not through some monitor or page where they just happened to bump into them. Not just from social media. In case there are things I don’t cover, in case there isn’t enough time- I want them to have a paper trail, so they can hear my voice, my tone, my heart when I am no longer able to be in front of them. But while I am, I will be. I won’t use Facebook as an out of a difficult relationship.
It’s not easy for them to understand why I am always in my head and my body. Why aren’t I playing? Why do I cry? Why do I type so much? True love is messy and ugly close up. But we handle it. I fail a lot, tut I try, and I don’t run from my kids and my husband (poor choice of words). So, that is my answer. My personal life will be lived. The MS page, to gain a wider scope, must be lived with social media as a supplement. I can’t confuse the two anymore. I don’t want to.
My MS page allows me to do great things for people who feel alone and isolated due to sickness. It allows me to reach out to them in a thick darkness others don’t dare to separate. It allows me to advocate and speak through it. It allows them the chance to do the same for me. But I don’t know a damn positive thing my personal page has ever done for my family. So there you have it. Call me anytime. OR, maybe someday, I will get the guts to call you.
Footnote: I have a good life. I was raised by a GOOD family who loved me. They deserve more than Facebook as much I do. I know my grandfather would agree.
