My child had ME/CFS from the age of 7. For two years she didn’t attend school and for one of those years she was housebound. That time was a nightmare. I can’t adequately explain the awfulness of having a previously happy, bouncy, sparkling child change into a thin, pale, erratic, angry, unpredictable person who was so thrown by the things happening to her body that she developed all manner of psychological coping strategies such as wearing a hat all the time (the pressure made her feel safer), and rocking in a crouched position whilst in the presence of anyone who wasn’t her parents. We couldn’t leave her with other people, or even in a room with her siblings, as her fear manifested in uncontrollable anger at times, and we didn’t want to risk harm to others. She was constantly in pain, and noise, light, food and life in general exacerbated her symptoms.
She isn’t our only child and taking care of her during her illness as well as meeting the needs of a raucous energetic 2 year old and a nine year old who had her own health struggles to deal with, was exhausting and draining.
Yesterday I was reminded me of those times, when I came across a facebook post from five years ago, in which I shared my worry and excitement about the first full day my daughter was going to spend at school in over two years. As I re-read that post the memories flooded back to me, and as I processed them I was able to understand with a little more compassion, why all that followed in those next few years took place. I’ve blamed myself for so much; and now I can see, as people have told me for some time, that it wasn’t all my fault. It’s only in reading my words from that time, and allowing myself to remember how difficult, lonely and overwhelming the challenges of life were, that I have begun to have insight into just how vulnerable I was.
Maybe you are living through the dark times right now or maybe you’ve been there. My hope is that after you read this, you will be able to look at your own journey with more compassion for yourself; so this story is part of my healing, but it can be part of yours too.
Whilst we were still in the post ME recovery phase of one child, and very deeply in the sadness and stress of our other child’s health deterioration, he walked into my life and decided I was what he wanted.
He took advantage of the fact that my husband and I were too worn out from dealing with all the life stuff to take good care of each other. He didn’t come along as a friend and ask, ‘How can I support you two?’ he said, ‘You (insert my name here) are amazing. I think you’re wonderful. I want to have fun with you. Shall I send you good music to listen to, and things that will make you laugh? Shall I be your escape from the very difficult realities of your life? Shall I pull you away from your husband? I’ve got the upper hand because at this moment he can’t give you what I can. Your husband has been wrecked by the past years, and he can’t find the joy. Don’t worry about that –I’ll make you smile.’
He was in a position where he should have taken care of us. And if he couldn’t then he should not have furthered the damage.
All that happened after that point almost becomes irrelevant to me when I see that first horrible thing he did. He took advantage of the damage which years of sadness and caring had done to our marriage. So, yes I took the attention he gave me and I wanted more. Of course I did. But he should never have put it there in the first place. I can see that he didn’t respect me, or care for me, or treat me with any sort of decency.
I’m really sad when I think about it all. I’m sad that we were in such a terrible place. I’m sad that we didn’t do things that would have helped us more. I’m sad that so much hurt resulted. But we did our best. We didn’t know how else to handle it.
Here’s the good thing.
Now we do know how to protect ourselves. How to love each other in the midst of the hard stuff. How to stop ourselves from being sucked under by the quicksand of tough circumstances.
We have become RESILIENT
I don’t like definitions of resilience that talk about ‘bouncing back’ or ‘overcoming failure’, or being ‘tough’. I think resilience is when you get yourself off the ground, most likely with the help of others, and you work out how you are going to start walking forward again. You tend to your injuries. You get treatment for the wounds. You work at rehabilitating the parts of you that were badly hurt. You realize that you need a stick to walk with or a person who will hold your arm for support when you need it.
It’s not bouncing back. We have not bounced.
But we’re up and we’re moving and we still believe that life is good and people are kind and the world is not terrifying and love can overcome all things.