I mentioned this in my last YouTube video, but I haven’t gone in depth about how it affects me mentally, or how some of my daily life is different. I have paresthesia, or numbness, in my hands and occasionally my toes. Most notably in my right hand.
Now, when I tell people this, I get varied responses. Most are the kind that are dismissive, or sympathetic but also not touching too heavily on the implications. But two responses I’ve gotten were empathetic, and/or supportive, and the one that was both came from a fellow spoonie.
First, I want to talk about how I feel. I’m not throwing a pity party, but it’s also normal to go through that sometimes. So, if you’re someone who’s in that place right now with your own illness, that’s okay. It’s normal to have moments that feel hopeless. Congratulations, you’ve embraced your humanity. But that isn’t me right now, and it hasn’t been much this whole time because we still don’t quite know at what level of seriousness this all is anyway.
I’m not feeling sorry for myself. Most of all, I’m not scared. Not in the way people think anyway. I’m not scared of having my hands go totally numb to the point where I don’t know they’re there unless I look. I’m not afraid of the worst case diagnosis (one possibility of which is neurodegenerative). I’m not afraid of having to alter my lifestyle; considering I have already done that with my other illnesses.
What I do fear is running out of time to do the things I love. Many of which require good hand coordination and dexterity. Piano , guitar, painting, drawing, cooking, sewing. It’s been difficult trying to do those things lately.
My handwriting, which has suffered greatly, is not the way that I would prefer. I used to pride myself in my beautiful handwriting, and now my hand cannot continue writing well for a long amount of time. My boyfriend has started checking the temperature of my kitchen sink water before I wash dishes, because I’m unable to feel how hot it is. He went to wash his hands and realized I was burning my own under the water.
Sewing the most basic things is painful. I haven’t been able to get to a piano to play and luckily guitar isn’t affected much, but will they be affected in the future? Drawing is almost impossible when my numbness is at its worst. Life is so short, but that brevity becomes more drastic when my skills are declining.
I’m eager to find out what’s wrong, so that I can move forward, get the accommodation I need, and start making a plan. I’m much more uncomfortable with the uncertainty, than I am with the diagnosis I might get. If it’s just a pinched nerve, then I’ll do the treatment and try to heal the best I can. If it’s a more chronic condition, then I’ll make a plan, and move forward.
I was more scared of losing my favorite hobbies up until recently, when I met a fellow spoonie who has peripheral neuropathy. He cannot feel his legs, and must look down at them to walk. He’s had to relearn to walk multiple times. That’s his reality. He was empathetic to the whole experience, but not patronizing or dismissive. He didn’t tell me to stop worrying, because he understood that worrying isn’t really what I’m experiencing. He knew I was only mentally preparing for all possibilities. He said it straight: there might come a day when you want to quit because you can’t seem to do anything. That I might lose more of my feeling in more limbs. That if that worst case scenario happens, I simply want to be prepared. He doesn’t quit, he knows the struggle, and he moves forward. So, his advice was this: If you look at your hands, it’s easier. Your brain will adjust to the idea that the signals it’s getting are different. Just work, go through the long process, and don’t panic if you can help it. He and I agreed that breathing and remembering that if we just remain grateful for what we can do, we can keep learning, growing, and most importantly: living.
This advice made my day, not because I didn’t already know, but because it was coming from someone who had lived it. When a doctor or PT tells you these things, it’s hard to believe that it’ll be that easy. But when someone who knows what it’s like does, it reminds you that sometimes you just have to change your perspective. So, if I have to get special art supplies, or draw more slowly, or use a different art medium, or hand sew less and machine sew more, I can. Loom knitting is already my favorite over traditional needle knitting. Making clothing can be less detailed and more basic and I can work my way up to detail.
And if, eventually, I cannot do those things at all anymore, I will find another hobby to enjoy. And if eventually I can go back to PT, or there’s another treatment and I don’t have to deal with this again, then even better. I can go forward with an even greater appreciation for how my body functions. No matter what, I’m not going to fear what happens. I will fear becoming complacent. I will never stop trying and moving forward even if every movement is painful. I will use my spoons to the fullest and keep growing and learning. And when all else fails, I will ask my loved ones for help when I need it.