Perspective

A young friend and I are always bemused by people who lament and so over what is the equivalent of a broken false nail. What we’ve realised, especially in our neck of the woods, is that for many ignorant Black people, cancer is the only word to be feared. No other diseases can ever match the fear that word brings. For me, MND is one of the ones I fear more than cancer. In fact, anything ‘incurable and progressive,’ is bad news. Where there’s no hope, there is literally..no hope.🥹

Let me explain and illustrate what I mean. I have seen this in someone with an extremely treatable form of cancer. As in, she just has to take one tablet a day and she will be fine. She did. Yes, chemo was awful. So awful that after her numbers went down (CML -a long lasting, slow leukemia) she stopped chemo. For ten years she has been lying to her doctor and pretending to be taking her chemo. And for ten years, she’s never had to “change” to a different chemo pill because her numbers have been so low that basically she’s been in remission, though sometimes the levels start creeping up and her doctor asks, “Are you taking your medication?” For ten years, she has hoarded the chemo pills the hospital had given her. So, she has a stash that can control her cancer IF it becomes detectable again-she goes for tests every six months.

If cancer sufferers were allowed to choose a cancer to have, this one, her one, would be one of the top contenders.

I recall the day I told her, “My current infection is getting better. I’m not as sick anymore. But the pulmonologist believes my lungs have fibrosis. They are scarred at the bottom, especially the right side. There’s no air going through. If I wasn’t exercising, he’d be going into my lungs. But because I’m doing what I can to get air into the rest, he’s studies that I’ll have a better chance than others, of fighting infection that settles in there. But he wants a CT scan to see how bad things are.”

Her response, “I’m glad you’re better.”

I told her about AS. I told her it’s incurable. I told her it gets worse. I told her what can happen. I told her my kidneys have lost function. I told her that it can take ages to find treatments that work. I told her I have to do exercises daily to try keep things from getting bad fast. Like opening up my chest and breathing in deeply so my ribs don’t fuse. I told her about the man in our group who had to have some ribs removed because they’d fused and his lungs were compromised.

“Will pray.”

That was it. No acknowledging how scary, unpredictable, weird this whole thing is. I can imagine the more terrified response if I’d said, I have bone cancer. I don’t even have to imagine it, I’ve seen it in how she tells me about relatives I have never heard of, who have been diagnosed with cancer. That’s when I see the fear, the anxiety, the sadness that we AS people whose disease is not yet controlled feel. I see it in those who have to dump treatments due to life threatening side effects. I see it in those who have tried every single available option and none have worked. None.

And so, my friend and I (my adopted sister). Adopted by me.😅) always wonder why people just don’t try to get it. And others don’t even have any form of cancer like this particular person who is wrapped up in her own anxieties. I did call her out. Tell her that her response didn’t match the situation. But she said her problems have made her not think clearly.

Ok then…Scratch THAT friend off the list of updates. I haven’t told her about the bladder op this coming week, nor the colonoscopy nor the gastroscopy.

But you get those who do know. But then they complain about trivial problems. Light issues. Things that have a solution. Believe me, life can’t get much harder than having no family and having no job and no social benefits. Literally living through those who love you. Strangers. Not blood, but ex-colleagues and adoptive sisters. That’s the situation this young lady is in. She knows real suffering. Don’t come to us about a broken fake bail. Don’t come to us crying about one night of insomnia as if the world has ended. I haven’t slept properly since childhood. Ask me about nights spent rolling around the bed, legs cramping. Or stomach on fire. Ask me about arthritis pain. Ask me about IBS flares and headaches and stomach aches day and night.

We don’t mind knowing the trivial. But please, put it in perspective, especially when talking to us whose problems are insurmountable. 🙏🏾 If you want to complain about your boss asking you to do some extra work one evening g, acknowledge that you’re talking to someone who has no boss, and no job and would be so so happy to have a demanding boss -one evening- if it came with a salary. If you want to complain about how boring being a mother is, think about those of us who appreciated the boredom of neurotypical children and are harried and strained and stressed by neurodiversities and challenges so hard that we don’t even post about them because other autistics say we stigmatise them when we share our reality from our position as loving but tired and scared caregivers. How would YOU feel if your child -who meant no malice whatsoever/pushed you over as you bent to sweep sand into a dustpan -sand they had dragged into the house? It’s scary! She’s strong. And getting stronger. What if she never stops pulling me around? How will we both survive being pulled into the road when she’s heavier than I am? It does happen with some autistics. (I know she meant no malice as I was in the doorway. She didn’t know to go round the other way and I was therefore in her way. And she ‘needed’ to get through. She was making a way. She wasn’t intentionally ‘making mom fall.’)

My type of parenting is HARD. I have an eight year old (turning 9 next month) still urinating on herself day AND night. The stench on the clothes is unbearable. We did physical checks and her bladder doesn’t seem to be the problem…I don’t mind light hearted complaints about neurotypical children, cos hard times do exist. Just don’t forget who you’re talking to. Don’t ignore me. If we’re in a relationship, relate to me too, please. That’s all I ask.🙏🏾That’s all we ask.

And in the same way we wrack our brains for things to be thankful for, please also acknowledge the blessings you have! One friend complained about not getting a raise, but she’s been doing MUCH less work than what she was hired for, AND is living rent-free on the boss’s premises. Hello!???

PS. I haven’t even pretended to edit this. Sorry for all typos. They are totally intentional this time as I don’t have time to glance over it right now but I felt called to say this.