So once when I was teaching, a mother came to talk to me about her son. He was a plucky little kid with developmental delays. He was popular in the playground and perplexed in the classroom. We’d been working hard on building his number knowledge, which was minimal when he first arrived in my class, aged 9. He was just beginning to feel comfortable using numbers up to twenty; early stage numeracy. Progress was steady, but laborious. When the mother arrived for our meeting, she looked through his maths work and launched: “Where are the multiplication tables?” she demanded, “When I was his age, we were doing multiplications! He needs to be doing multiplications!”. It continued, in variations for the whole meeting. She was fixated on the idea that regardless of what he needed right now, what he was able to understand, what was appropriate for his stage of learning, multiplication was the fix because that is what she had done at his age. I couldn’t get her to see the realities of her son’s situation. If we leapt into times tables before he understood his numbers he would never have a foundation to support later learning. He’d have huge gaps in his number knowledge. Gaps he would fall into, over and over as he progressed through school, risking falling further and further behind. What she wanted for him was a solution. What he needed was her patience, and time.
We are a generation of solution-oriented people, aren’t we? Got a problem? Well, let’s solve it. We’ll throw all our resources at it. We’ll research. We’ll leave no stone unturned. Surely there will be a way to fix it. Because if it is broken, that’s very far from what it should be. We’ll turn the problem over until we understand it from every angle. Then we will stitch together some sort of plan. We’ll make it right. Fix it. But what if you can’t? Is there room in our minds to accept a problem that has no solution?
Having a chronic illness that is poorly understood by most doctors has been a problem for me. I’ve been fighting now for a long time to find some answers, a treatment pathway. To find a way out of my difficulties. I thought I was getting somewhere… and last week I discovered I am no further ahead than I was four years ago. Is it okay now to give up trying to find a way?
Because that is what I am doing. I am so tired of scouring the horizon for information that might help. For the right solution. I have a diagnosis that I know a lot about, but I am no doctor. They don’t know a lot about it because they so rarely see people like me. I am so tired of trying to strain to listen for the tempo playing in the minds of clever doctors. I am so tired of reading up and keeping abreast and willing a solution into being. I am so tired of carrying the responsibility of my own healthcare when I don’t have the qualifications or the brain power to do that. So I am putting it down.
Don’t be disappointed with me. If you are one of those people who have messaged me and urged me on, thank you so much. If you are one of the people who hope that my progress will help your own, I apologise. Right now I can’t refuel the engine. I’m all out of determination. I am going to use the little oomph I have left on smaller things. Hopefully, someone else somewhere will make some progress. Here’s the baton, if you want it. Maybe some more research will provide the perfect conditions for action. The sort of conditions that make doctors feel they can make decisions with confidence. A double blind study somewhere that delivers the big a-ha. A mighty health crash that delivers data up the wazoo.
I never thought I would reach a point where passivity seems like the only choice left. It doesn’t mean I accept my illness. I never will. But it does mean that I don’t believe there is a damn thing I can do that I haven’t already done. I think I finally accept that this system; all the difficult realities of medicine, do not work in my favour. And I am going to stop trying to shift this immovable mountain.
If I had some objective data that made it all really clear, it would be easier. If I fell in a different percentage of Dysautonomia sufferers. If I lived in a different country, if I had a particular kind of insurance, if I could see a specific doctor in some other more populated country…. and on it goes. I am just sick of it all. Sick of being sick and yet having to fight for help. Why is it that in some cases, our medical systems require so much of the patient, so much more than they can realistically manage?
Also, looking at my current situation as objectively as I can, I do see the problem. I’ve been fixating on IVIG (intravenous immunoglobulin) as the holy grail for some years now. I thought, if my case was auto-immune and IVIG could address the rogue antibody action, I could get better. It seemed so logical. It’s why responding so well to immune suppression filled me with so much hope! I wrongly thought it would help my case for immune modulation. IVIG itself; a blood product rather than a medication, a little bottle full of the antibodies of a thousand donors, seemed like it held the answers for me. Maybe it does. But I’m not likely to ever find out.
Because you cannot just ask for IVIG. It is in short supply worldwide. And it comes with associated risks which must be carefully weighed for each patient. Here in New Zealand, the approval process is specific. My case would need to come before an approval board who want to see hard data that explains why I should have such an expensive and precious medical resource. I am not eligible under their criteria. If any patient could have IVIG, just because they have a picture of systemic dysfunction, there would be a run on the blood bank. No board could approve my case as it stands because of what that would mean for our supply. I get that. And I hate that. What I would need is a strong letter of support from a neurologist who understands autonomic disorders. I don’t have one of those. And some blood screens to come up with a positive antibody titer. Mine is seronegative. And a series of results from all the tests I have had over the last six months that give a compelling picture. Mine do not.
So there really is no option for me. Giving up my fixation on IVIG as the potential treatment for fixing me is really all I can do for my own sanity. I have to let go of it. I have to pull myself back into this battered old snail shell and wait. One day, something might happen out there that will help me. In the meantime, I will simply carry on. I’ll do what snails do during a drought. Batten the hatches. Wait it out. I’ll take it as it comes, whatever that might be. I will hope that my brief emergence into the sunlight during immuno-suppression might leave me with a soul tan. That my short time back in the race might leave me with some mental momentum.
So I’ll be in my shell for a bit. Don’t be mad with me. Don’t feel bad for me.
And don’t be sad either, I’m doing enough of all that for all of us. I’ll be trying to think of that Mum who so desperately wanted a fix for her boy. There was one, it just took time, and it wasn’t the thing she imagined he needed most of all.
Just patience, and time.