I was going to make this a one line post on Instagram but thought I’d share how I’ve been feeling lately...
I’ve been pretty weak lately and it's discouraging. Maybe it’s heightened from the stress of all this division and misunderstanding and how this division penetrates personal life and relationships but either way, it’s there — achingly reminding me with every little movement.
I believe I have the skills to help others but often get tired just from basic day-to-day stuff. Jason does all the physical lifting but I do everything else required to run a house and life from bills, investments, paperwork, finances, planning, dealing with medical/insurance paradigm and needs to adapt to disability progression, scheduling...all the “brain stuff”, as Jason says. Then, basic activities like having a shower leaves me drained so by the time I get to my freelance or advocacy work I’m already destroyed.
My advocacy isn’t just me posting a picture of me in a wheelchair with a single sentence. I do a lot of art and writing. I’ve done more interviews, published essays, social media maintenance, seminars and podcasts this year than ever — all of this I get paid zero for. Not that I’m doing this for money but it can be alot when your body is dying. And, yet I never feel like I’m doing enough because I know what my potential could be without this disease.
Time and energy are my biggest commodities and I don't have enough of either.
All day I’m networking, fulfilling collaboration requests or trying to help others with their health questions or need to share. I have a lot of empathy for people who are alone but especially those caught in the paradigm of ill health and bureaucracy, and I soak it all in. I get doleful because I want to do more but this body just won’t allow it. If I get run down or stressed I get sick immediately because my immune system is that shitty (hence why I’m high risk). And then I get on myself for not being or doing enough or that I haven’t finished my children’s book yet, or this project or that.
My body simply can’t keep up with my ambitions and it’s utterly frustrating. Typing on my phone is still relatively easy and I’m fast, but I’m losing ability on the keyboard and only a couple fingers on each side (pinkie and index) has the strength to push keys. I can get pretty down about this constant loss. It’s disheartening. I have so much I could do, say and contribute if not for this body. I try to love her and most days I have understanding, but other days it just makes me endlessly cry. I wish I could maintain what I have, and every year I say this but every year more and more is gone.
I get dismayed at how little healthy people get our world. I’m dismayed at the division — often bred from misunderstanding and manipulation by power on all sides. I’m dismayed at how we behave and how little we care for each other. I’m dismayed that we are the most marginalized in mass situations like Covid or natural disasters…and in general. People don’t understand how situations like this impact us the most, and yet we are the least considered or seen. If people only knew, perhaps they’d have more compassion, more patience, more understanding...This is the world the sick and disabled live in and it can be a cruel one.
It’s difficult witnessing the degradation of your own body no matter how empowered you are. My journey of acceptance is my own and separate from the fact that society shouldn’t view me as lesser just because I’m disabled. But on the days I’m feeling particularly frail it can be difficult to emotionally carry through. My fingers are getting so languid, and on a bad day this weakness permeates my soul and I have to wonder if I can handle this....if I can handle what is to come. I have to wonder all the time if Jason died would I have anyone there for me? How would I survive? Most of the time I don’t think I would have anyone to turn to and this can feel truly isolating.
I’m doing my best to live and do in this body that is on a concerted mission to prevent me, and on a bad day it can make me feel broken and provincial. But I’m carrying on in spite of this and doing my best to create beauty and connection, and I hope you will, too. Focus less on following that rabbit hole to hatred and division.
In the end I’m doing what I do because of my body, because of this experience, and it is my point of view that matters most and not what I can or can’t physically do. I’ll keep trying to remind myself of this...🍂
Instagram.com/kamredlawsk #kamswheelstravel
Eastern Sierra 2019 road trip photo montage video.