Oops. I started writing the post below before I came away and only just finished it. It comes with festive best wishes from a snowed in Northern Ireland.
One might think that the hardest thing about tearing one’s neck up and having a stroke would be having a stroke, and having to get up again after. It turns out that might have been the easy bit.
I get better every day. I’ve started seeing every week as a new era, because each one is so massively different to the last one. In fact, I trawled through the photos today and I think one can see this. Ok, so I do look like a ghost in the Week 2 & 3 pics, but actually it’s because the macbook webcam distorts the light. So I guess I’m pointing out I’m getting better. It feels to me sometimes like it’s really slow going, but if you chart week on week… (I’ll post them another day).
The day before yesterday, as you know, I got on a plane. I haven’t come far in miles, but I simply couldn’t have done this three weeks ago. I’m with someone who knows and trusts I’ll pipe up if we need to slow down or stop. Last night we went to a guitar gig and left at 01.00: I may have spent the last half of the night leaning my chin on his rather nice shoulder, watching the action (which included a near fight between an over 60 who thought everyone should be silent and listen to the music and some twenty and thirty something’s wielding pints of Guinness) but I got to go and be treated like… like me.
What’s my point? Well, I suppose it is this. My progress since I left the hospital has been largely up to me. I’ve been supported by the best of the best, but it’s all been my pace and my call. Now things are starting to come back on line, it might be up to you what happens next. Or at least the way you choose to engage with me. 50% of people who’ve had a stroke experience depression afterwards. I have not, to date, but my trigger points are clear to me: the threat of being placed on a combined stroke/geriatric ward was one, the other is people treating me like I’m less than I was on 10 October. So I really mean it when I say it’s down to you.
You wield power. In the way you speak to me, the way you trust me, the way you respect me, the way you relate to me. Your experience of what happened to me is very different to mine. I imagine if you compare the thoughts someone who was there at the beginning (poor them – so sorry – but thanks loads!) but not much recently, with someone who’s been there every day or every week, and again with someone who’s only seen me in the past 3 weeks or so, they will have very, very different perceptions of the state of play to each other. My point therefore, is this. If you assume you know how I feel or what my deal is, or what I can or cannot do, you will be doing that with only your own subjective (and probably uneducated) view on the situation. It will likely be wrong, no matter what it is.
I appreciate my view is subjective (and biased!) too, but it’s at least informed by a neurologist, two GPs, a haematologist and a warfarin nurse, who are all great. Yet some people assume they know better than me. It may be indicative or my recovery that this irritates me greatly, even when I know it’s being done with the best of intentions. But – put yourself in my shoes – if someone tells you that all you can manage in a month is x and you know it’s already y, well, it’s not really on, is it? So all I ask of you, if you’re thinking of telling me that I can’t or shouldn’t do something, is to talk to me instead. I’m very capable of excusing myself when I need to if I overdo it or whatever, except…
… except when you back me into a corner.
So let’s be honest about what you may perceive to be the catch. I’m stubborn. I admit it. But if you tell me that I can’t do something, and I believe I can, then I have to argue with you. My worry is this: if you fight hard and don’t give me a break, I have to argue a lot, and I’m worried I might back myself into a corner. Because either I’m going to respond with, ‘whatever’ and not do it because I can’t be bothered to argue, but if I don’t or (for whatever reason) can’t, then if you keep pushing I’ll end up having to say ‘i can’ and make sure I do, even if I’d rather be able to come up with some kind of opt out option on the matter, if we’d been able to discuss it. But instead I’m trying to work out how I can manage your issue. How I can manage your point of view and your conversation so you don’t back you or me into a corner. And I don’t see the point in that. I really don’t.
So please, be kind. I am genuinely touched that you are concerned. I really am. I appreciate it a lot. But I’m still me. Bright, determined, capable and stubborn. If you’d be kind enough to take me to one side to privately mention any concern, I will listen and thank you and we can decide what the answer is then. If you’d be kind enough to give me permission to let you know if I can’t do something, or want to do it slower, or need a rest, I’d be grateful and honour that (and, hooray, I haven’t had to do that in the past 2 or 3 weeks). If you’d listen to me and believe me when I say I can definitely do something, that would be nice of you. I have lots of people I can ask for help: they have medical qualifications and know me far better than I would like. Please don’t make the stress of my day working out how to manage you.
p.s. By the way… in case you are wondering, this has only threatened to happen a couple of times so far, and only seriously once. But I’m on a massive re-entry programme and I’d like to head off any issues before they come up!