Writing a blog is exciting, exhilarating and incredibly scary. I love words. I love their power to communicate, to tell a story, to change the world. I love the freedom of sitting in front of a computer and typing out who I am and what my views are. Yet that very act is the same thing that scares me. It’s scary to express views. Never discuss sex, religion or politics in polite company, the saying goes. Those are three of the most taboo subjects around. Well, I guess I’ve alluded to sex since it’s an important part of attempting to get pregnant, at least pre-treatments. I touched on politics in my last post and the fact that I’m a Christian influences most of my posts, even if it’s not the actual topic. So far, for the most part, those that have commented and engaged with me have been pretty nice, but I can’t help sometimes feeling that perhaps I’m dancing around on thin ice. The truth is, I’m having a good time doing it. I’m enjoying the writing journey. I’m enjoying putting who I am and how I think into words. It’s empowering. I love engaging with others. I love the connection and the shared journeys.
But at the same time, there’s a fear that maybe it’s too good to be true. After all, everyone in the whole world cannot possibly like me and agree with me can they? And why should they? Many years ago, I came to the conclusion that it was better to be hated for who I am than to be loved for who I’m not.
On one level, that’s an easy thing to say. I certainly have a stubborn streak in me that has often caused me to dig my heels in and go against the flow. Sometimes, though, it’s exhausting going against the flow. Going in the same direction as the current is usually the easiest option. The decision to be different and not go where others are, or appear to be, is never an easy one to make, even when I know that, being who I am, I don’t have much choice.
Being Unique in Times of Weakness
It can be hard to take a stand even when we feel well, strong and healthy. What’s particularly difficult is to be in the middle of a life crisis and suddenly realise that you’re going against the flow because somehow you’re not meeting people’s expectations. It could be as simple as disagreeing with a platitude. After all, it’s my life that they’re referring to, so don’t I have a right to say, “No I don’t believe that’s why this is happening”? Or maybe it’s not making the treatment decisions, or natural health decisions, or faith decisions that others consider that you should be making. It’s hard at that moment, to have to stand up and say, “no I’m not going there. That’s not me. I don’t care what “shoulds” you want to throw at me. I am making a different choice.”
On the one hand, I realise that some of my thoughts are ones that other people also share but have either felt unable to put them into words or haven’t felt free enough to openly acknowledge them. On the other hand, I know that I have views that clash with how others think. I know that because I’ve experienced clashes in real life (as opposed to online). Those clashes are the hardest to deal with when they come about because I disagree with someone else’s interpretation of my life circumstances. It all comes back to that “why” question that us humans seem to be incessantly drawn towards. From toddlerhood, we hear the “why? Why? Why?” Because we want the world to make sense. We want the world to be fair. When it seems unfair, we want to argue with it, or with someone. We want to voice our protest. If we believe in God, we may scream out to Him or maybe our protest is the very act of deciding not to believe in Him anymore. He doesn’t deserve to be believed in if such bad things happen, we may consider. Answers, when imposed, do not even scratch the surface of a person’s questions.
Imposed answers do not even scratch the surface of a person's questions. Click To Tweet
This is Me!
When chronic illness happens, that fear of being known can combine with a fear of not being known. What if people start to see this illness as being part of my identity? With invisible chronic illness, such as Multiple Sclerosis when in remission or with symptoms that are not obvious, that’s not usually a problem. In such a case, people may have to battle more to get people to understand that although a person may look well, that doesn’t necessarily mean that symptoms aren’t present. I don’t know how to explain some of the off and on symptoms that I experience. Most of them aren’t obvious to anyone else. However, once the illness leaves a more obvious mark, such as needing a walking aid or wheelchair, not being able to walk in a straight line, or cognitive effects, then the danger can be that people see us as being our illness. I have a confession to make. Sometimes, while I’m walking, being proactive and fighting this disease, I want to shout, “This is me! No matter what may happen in the future, please remember that this is who I am.” Maybe, writing a blog is part of that. I love self-expression. I enjoy processing. I find it freeing not to hold back any more and to let the world know who I am. Being myself is an important part of telling this illness that no matter what, it’s not going to win.
This is me! No matter what may happen in the future, please remember this is who I am. Click To Tweet
So, on the one hand, there’s fear of being known and, on the other hand, a fear of not being known. What a complicated species we are!
To Agree or Disagree: That’s the Question
One of the blessings of writing this blog has been the connections that happen because of it. Many of those connections don’t take place in the comments here. They take place on Facebook or private messages. Those moments of connection happen when people let me know that they identify. I’ve been going against the flow but actually I’m not alone because suddenly, there are other people swimming with me. They have the same questions, the same frustrations, the same philosophies. But sometimes, we’ve all been scared of voicing those because we think we’re the only one. The world seems to be telling us to conform. Platitudes tell us to conform. Everyone seems to have an opinion on whether those facing infertility should have treatment, shouldn’t have treatment, should adopt, shouldn’t adopt. There are opinions on God’s place in it all and on what we must be doing wrong. It’s not everyone. I have an amazing support system actually but, you get it, it’s there. And the problem is that if you’re not asking for these opinions and they’re coming anyway, it can be pretty exhausting. Sometimes, suddenly, I’m in an argument and I didn’t choose to be there; I just chose to respond.
I’m a big fan of Myers-Briggs. I identify very strongly with my personality type and have found it helpful to my own growth and self-understanding. I’ve also found it helpful in relating to others. My type is INFJ. That’s apparently the least common of the sixteen types. My type is such that I like the fact that I’m the least common type so that in itself says something about me. One of the facets of an INFJ is that it’s important to us to get on well with others. I identify with that very much. It’s an oxymoron. Yes, that’s a posh word for saying that I’m a bit contradictory! On the one hand, I care what people think, on the other hand, I will dig my heels in and go against the majority when I disagree. I’ll do that, but inside I will care deeply; it may be tearing me apart. There have been moments when I’ve felt torn in two. It’s those two parts of my personality at war with each other. Should I try and get on with everyone? Or should I disagree?
Those moments of feeling torn in two have been more likely to happen when I was at my weakest. They happened while my husband was fighting for his life, when my body was still in shock and recovering from paralysis and when my world and future felt like it was falling apart. They happen when the pain of infertility feels like a knife being stabbed in my womb, and I’m desperately trying not to burst into tears. They happened when I was being told to go one way and I knew that I had no choice but to disagree and go the other way. Or they happened when I didn’t disagree at that moment, because I was too exhausted, or scared that I might have a public emotional breakdown. When life circumstances are draining us, it’s a sad reality that we may need to use our limited resources to deal with other people’s reactions.
The Emotional Journey
An illness either takes your identity away from you or, it forces you to fight for it and perhaps to express it in ways that you’ve never had to before. I will keep writing, not because I want to be argumentative but because I want to be me. I want to engage with suffering. Not because I like suffering but because I like being real; I like being free; I like overcoming. I like engaging with people wherever they are at in their journey. I like reality and not a pretend game of “”everything’s ok” when inside there are tears. I like enjoying life, without denying the pain. I like being me, even when words feel scary. I like pushing limits and asking questions. I like provoking thought and considering alternatives. Those are my reasons for continuing to write and for ignoring the fear of offending.
An illness either takes your identity away or it forces you to fight for it. Click To Tweet
When I was diagnosed with Multiple Sclerosis, I thought more of the physical challenges that lay ahead of me. Since I was in hospital unable to walk, that was also my current reality. At that moment, I didn’t consider the impact on my intellectual, emotional and spiritual engagement with others. My focus was on getting back to walking normally as quickly as possible. Although it was a gruelling process, and I still get pain sometimes, the physical has been the least of my battles and challenges. That in no way undervalues what it took to recover from that MS episode or the challenges that I’ve had along the way. The physical journey has been tough, but the emotional one has been harder.
Daring to Keep Writing
I have blog posts that I’m in the midst of working on and sometimes I’m scared of the things that I start to write. I’m not scared because I wonder how I could write such a thing; I’m scared because I wonder how people will react. Pressing the publish button is an incredibly scary thing to do. I’ll make a confession; I’m more scared of the reactions of some Christians than of anyone who rarely sets foot in a church! That sounds terrible because I’m a Christian myself; in fact, I work in full-time Christian ministry! I like Christians -most of the time anyway ;-)- But the theology of suffering is a difficult, and as I’ve experienced, controversial topic. Sometimes it can get nasty, albeit often unintentionally. It’s difficult because everyone brings their own experience regarding how God worked in their life and what they found helpful in a moment of suffering. Everyone brings their interpretation and perception regarding God’s place in it all. So if you start attacking that – and by attack I mean disagree- but it can be perceived as more, then it can open a large can of worms. I don’t like worms very much but, somehow, I seem to have ended up with a tin opener in my hand. Perhaps we need to open that can. Perhaps we need to acknowledge where worms are present. They’ll eat away at us if we don’t. The truth is I think they are eating away at many people and causing more damage than we realise. So, here I am with a tin opener in my hand, wrestling with my thoughts, questions and perceptions. And in the midst of that, I’m daring to keep writing. If the questions are more prevalent than the answers, then those who consider themselves to have the answers may be offended or scandalised. But sometimes I wonder how we can have the right answers if we’re too scared to ask, or face up to, the questions. Those questions cannot be answered by ill-thought-out platitudes, whether those platitudes are “Christian” or secular. And so I keep writing…. Watch this space!