Today, I'm thinking about how I've been learning to negotiate with activities and objects that I really never had to think about before. One interesting aspect of RA, for me, is that, while I'm very lucky and none of my joints has undergone remodeling, they certainly aren't unaffected. They can be uncomfortable quite a bit of the time, and sometimes actively painful. But worse, for me, is that they often feel weak. In a lot of ways, that is the feature of this year that I've had to bring all of my self-compassion and mindfulness to bear on, in order to avoid ruminating and spiraling into worries about a future that hasn't happened yet, and which may never come. I grew up playing piano - my first real job in high school was as a piano teacher. I knit. I spin. I write by hand (and love my fountain pens and Traveller's Notebooks). I ride my horse. I cook. In each of these activities, I have always taken the strength and dexterity of my hands for granted. Up until a year and a half ago, I had never cut myself with a kitchen knife - ever. (And I cook a LOT.) I zested my thumb with a lemon zester once (I don't recommend it), but that's it. And then in the course of two months (February and March 2017), I cut myself twice, once badly enough that we sort of stared at it for a while and wondered whether it needed stitches (especially when it would NOT stop bleeding for half an hour, while I put pressure on it and held my hand over my head). It was so unlike me that I didn't quite know what to make of it - I am not (was not) clumsy with my hands. It wasn't until much later that I put it together, and came to think of it as the first joint-related warning sign that all was not well.
Rereading that, here's the statement that I think captures the emotional tension of the last year:
I am not (was not) clumsy with my hands.
That's a lot to come to grips with. (ha)
One place where I have to do a lot of negotiating is at the barn. The spigot handle of the hose I use to fill Disco's water bucket is often really tight, and the nozzle we've attached to the hose takes me two hands to open up and close again. I have learned to notice the frustration and anger that arise when I struggle with these tasks. Mostly, I manage to take a deep breath, laugh a little, and go back and take it slowly. Mostly.
On days when things hurt, one of the toughest barn jobs is also one of the most ubiquitous - picking out Disco's hooves. This is something that I need to do before and after every ride (and I also do it after turning her out) to make sure she hasn't picked up a stone which would stay lodged in the frog of her hoof, or under the shoe - that's uncomfortable, and not so good for her. It also gives me a chance to check her shoes, and the condition of her hooves, and how her feet and legs are doing. But hoof picking is a tough task. It involves bending over, picking up a hoof, and holding it while I dig out anything that's gotten stuck in there. D's pretty good about it - she picks up her hooves politely when asked (she even anticipates which hoof is next), but she doesn't do all the work of holding them up, and, lacking fingers and wrists, she can't do the digging out part (that's my job).
At the same time, I'm aware of how good for me my time with Disco is. Physically, it motivates me to keep moving - and believe me, riding a horse like her in the ways that we ride takes focus, concentration, and a lot of physical work. Emotionally and spiritually - well, there's nothing like spending time with a half-ton dance partner to ground and uplift at the same time.
All of this captures an interesting tension that exists for me at this stage of the disease. On the one hand, I am feeling and living the things that are harder for me, or that I have to negotiate differently than I have in the past - and I am sometimes feeling that as a loss. On the other hand, I am keenly aware that I haven't (yet?) had to give up anything, and that I am so very lucky to have that be true, and to have Disco (among other things and beings) to motivate me to keep it that way. I'm guessing that I'm not at all alone in living that tension, or in understanding the importance of finding and embracing those motivators.
And speaking of motivators - here's another one, with something to celebrate. Kivrin, my 17-year-old high school senior, got her license on Tuesday! She's happy, and I'm happy for her (and for me, as you might imagine).