The hardest thing about my diagnosis so far has not been coming to terms with my own mortality.
It’s been coming to terms with allowing myself to ask for help.
To say I’m fiercely independent is a bit of an understatement. Its source is two-fold – I really hate imposing on other people for things that only benefit me, and I have a stupid deep-seated need to prove to the world that I can do it by myself, thank you. It makes it harder than necessary to get things done, sometimes. I’ll take two hours to show up to a party because I don’t want to ask another friend to drive ten minutes out of his way to pick me up when he goes. I’ll load myself up like a pack mule and walk home rather than ask a coworker “hey, can you swing me by the store tonight?” even though they’ve TOLD me they’re more than willing.
Two true stories:
I had a coworker friend who waited in his car in the parking lot while I ran in for some groceries, because I’d insisted I could walk to the store later, it’s fine, I don’t want to impose on you, I might take forever, it’s okay really, I can do this – so he insisted on taking me to the store and waited outside so I didn’t feel like he was hovering over me and rushing me while I picked up the things I needed. He’s super nice and I still feel bad about that.
My boyfriend at the time once berated me because I occasionally asked him for rides to the store – we’d been dating for over a year, he was living with me so the grocery runs were for our mutual benefit, and goddammit YES I WILL GIVE YOU A RIDE, just tell me we need to go to the store, woman.
My diagnosis has come with a very humbling lesson of “No, you CAN’T do it by yourself, actually.”
The truth is that I can’t carry boxes up the stairs anymore. I can’t walk the mile to and from the bus twice a day, every day. I have had to learn how to ask for help. My outer circles have been amazing at offering assistance – I’ve been told that friends are willing to come over and scoop my freaking litter box twice a week, if I want to set up a schedule. Grocery runs. Yard work. whatever it is, just say, and someone will help me do it. I just have to let them help.
I just have to ask.
The “I don’t want to impose” part of me is appalled at this turn of events, of course. Yes, they’re willing and they say they’re happy to do it, but…they’re going out of their way! For me! Just to take me to the stupid store! I don’t deserve to trouble them so much! The “I’m independent” part of me is learning to shut up as it’s proven time and again that not only is accepting help not a bad thing, it’s becoming mandatory. It’s dangerous, because I’m also lazy by nature, and so the temptation to just not do the things I don’t like to do in the name of saving spoons or whatever other excuse is strong. I hate mopping the floor. And I’ve got people willing to do it. But I CAN still mop the floor, so that independent side of me makes me do it, while I can, because the imposition side of me is mortified at the thought of making someone else clean up the cat puke. Eventually I won’t have the strength to stand up long enough to mop my floor. So I’ll have to ask.
So. The reason this is on my mind today, is that Danielle, my best friend and main babe, has set up a fundraising site for me. And she’s
demanded asked that I link it here. This is a thing that is purely for me, to help with upcoming medical expenses and to cross a few things off of my bucket list while I’m still able to do them. The truth is, being sick in America is very, very expensive. Moving house is expensive. Buying and renovating a house for wheelchair access is expensive. Vacations are expensive. And while I have a job – a good job – I’m keeping afloat. But the time will come, sooner than I want to admit, that I have to leave that job and figure out how I’m going to live for the rest of my life on 60% of my income. ALSA says that it takes $200,000 a year to care for a person with ALS. That’s substantially more than the $700 or so I’ll be getting a month from SSI when I’m unable to work. I just can’t do it.
And so I’m asking.
Danielle told me that I have her permission to tell you guys that she made me do this. And she did; this is something I’d never have done on my own. And I’m incredibly grateful to her, because I still haven’t gotten the hang of this whole “take care of yourself first and let people help” thing, and she’s been an excellent coach and an amazing guardian in that respect. She’s been really amazingly good for me. But it’s not entirely under duress; I’m also..just…asking. I admit I can’t be completely independent, and I must impose on the kindness of my friends, family, and complete strangers on the internet. I’ll put it up on the sidebar over there. I’d be grateful if you could help.
I’m asking if you can.