I Remember…

A post in a Christians with Chronic Illness and Pain group really resonated with me. It’s something I shared on here already, I believe. The person asked if she’s over sensitive or what? She has less time for nonsense now that she is living with incurable suffering. She can’t tolerate trivial conversations that go nowhere, and has no tolerance for people who don’t get it.

I wasn’t the only one who agreed with her. I recently cut someone out my inner circle. They kept reaching out to complain about her very loving husband and two healthy children who she has said herself, are victims of her very harsh temper. She knows she shouldn’t be as cruel and verbally abusive, but she is. And I am tired of the, “My life sucks. I have to parent two older, able to communicate, neurotypical, healthy children who can play together without my fearing they will destroy something or harm them and have to live with a loving husband who cooks when I order him to. How horrible is that??” Seriously, if you read her texts over the years. you’d want to cut your own neck instead of cutting her off.

But my children need me. So I told her that I hope she finds a community that understands her but I am not it. Oh my word, people truly think you owe them access to yourself the way THEY want to access you! I come from a generation where not everybody even had a landline! Let alone a cellphone! I would take the phone off the hook if I didn’t want a phone call at a certain time and that was that. Nobody demanded I never NOT answer the phone. I made it clear that she can send me an sms, she can email, she can phone me. But nope, she wanted to be in my WhatsApp world.

Nope. My WhatsApp world is for people who aren’t draining. I don’t have the bandwidth for nonsense anymore. If you are using me to vent, stop. Go vent somewhere else. I need proper friendship and true community, where we all care about each other.

As I sit here in pain even in my sternum, I think back to two people who were in my actual presence -not counting the sweet ones who have sent money for meds or surgeries, incontinence alarms for the children, Hope and love -who are what I have time for. One person is the one in the photo above. We didn’t have a diagnosis but she knew I was suffering. I have spoken about her too. How she raced down the mountain so she could stop me over using my body. I don’t know if the depth of “I matter??” I felt that day. It’s not like I had told her my body was aching. We didn’t talk about me. But it was on her mind. That is someone safe. Someone who sees me even when I’m not actively trying to open her eyes to my reality.

Another one, also happened on a Sabbath. After a long day at a church the adulterer was preaching at, I went to the car, silently hating the long drive home as it meant I still had a long wait before I could take the pressure off my swollen bones. As I chatted to an old friend, she asked, “But how are you? I worried about you when we were kneeling to pray. I didn’t like knowing you also knelt down given you live with so much pain.”

She opened the dam. I just burst into tears. Kneeling HAD been hell. It’s always hell. “But why would anyone bother thinking about ME?? I matter?? I hadn’t even said anything about myself all day! It was about her and church…”

That’s what my WhatsApp is for. For people who hear me. Not for those who want to educate me on things I know more about because I live them, not for people who forget how privileged they are to have healthy children. It’s for people like a young lady who didn’t realise till this week that the twins are autistic.

It’s for people who express shock and sadness because they fully comprehend what the impact is of what I’ve told them. My inner circle is for those who admit that parenting a neurotypical child is hard and they appreciate having a break when the child goes to her mother (child’s grandparents)so how does a homeschooling mother who is constantly with her multiple special needs parent cope? It’s in her wishing she lived nearby to do anything to take the weight off. It’s THAT. It’s living her reality which of course, isn’t trouble free, while also seeing mine properly. It allowed me to tell her honestly that I felt so jealous when she told me her daughter had gone to spend the holidays with her mother. The privilege of support, rest, is appreciated by those I invite into my world. And that’s seemingly typical for many of us who are sick.

We want to be seen just as well as we see others.

I remember these two ladies who saw me because it’s so rare for an invisible illness to be seen, and for people to acknowledge what is not spoken by the sick one. I’ll never forget it.