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| click pic for more I'm actually trying to get the lame diamond hoe advancement on mo creatures "Serious dedication- Completely use up a diamond hoe, and then reevaluate your life choices" |
"To talk of many things:
Of shoes--and ships--and sealing-wax--
Of cabbages--and kings--
And why the sea is boiling hot--
And whether pigs have wings."
You can read the entire poem at
The Walrus and The Carpenter, which is by Lewis Carroll, from Through the Looking-Glass and What Alice Found There, 1872.
There are a number of literary interpretations, which I don't really care about and have nothing to do with today, but that quote popped into my head after a long night of forever-going-nowhere dreams about stacking black and white terracotta blocks in my stomach and going in never ending circles trying to find my car on a huge college campus and deciding I needed to let a class go before I failed another.
One of the biggest walls my medical team has run into with me is I genuinely don't know how to rest. I've been commanded a number of times to stop doing things, stop powering through, stop everything and just rest. And I'm supposed to do this on a regular basis anyway since I'm super spoonie, and I'm so used to feeling awful that I just keep going in my own very restricted way.
I grew up working pretty hard. I still got in some play time and grew into a prolific reader, but I wasn't the kind of kid who could lay around for it's own sake unless I was reading or guarding the livingroom stereo so no one would change the record. I'm compulsive even on my worst days, and it's all I can do to be 'lazy'. That was a big word growing up, and a nasty word as an adult, especially coming at me sideways during a couple of really bad spoonie years. I try to rest my body by keeping my mind busy on other things, and I've developed quite an obsession with powering through minecraft server salvage and remarket, despite having pretty cool plans for a few builds. Even in my sleep, now that I'm finally actually sleeping, I'm extremely busy in all my dreams.
Part of not resting properly is the underlying prompt to pass for normal. I want to be useful and available, and that means pretending to be able to keep up. Pretending means I hide how miserable I might really be feeling or how hard getting through the day and keeping up might be for me. Pretending means blowing off red flags popping up left and right and dancing around the distractions like minor bothers are bothersome and I don't want to be bothered kind of thing.
I had gotten to a place where I was doing pretty good. Last year was actually pretty good. I was exercising regularly, getting function back along damaged nerve pathways, controlling pain levels with good sleep, nutrition, and real rest. Because I thought I was doing so well, I jumped a little more into holidays, and by January 2017 I was hitching an ambulance ride one day over a pain in my abdomen. My main concern was that I could feel my heartbeat in a very precise spot deep inside my belly, and every time it started thumping hard and fast in there I would get breathless and super fatigued. Naturally, they immediately jumped on ruling out cardiac and a variety of abdominal emergencies, including aneurysm. I've been bad to blow off abdominal pain since I've lived with it my entire life (my childhood was miserable, part of my adulthood was worse), so once I saw I was cleared of anything immediately life threatening, especially aneurysm, I blew the rest off. Yes, I saw a notation on the CT about something I didn't understand, and yes, I blew off follow up with my doctor.
So for the last 9 months I've been blowing off worsening pain coming and going. I'm already very familiar with a number of abdominal issues and had already learned to control a lot of it, and I kept thinking, Ok, this is all familiar, it's nothing, just keep going. And I got through some pretty rough nights without telling anyone and pulled through some really hard days not telling anyone because I want to be available and useful and I'm in a position to be very helpful every single day. After years of full disability, do you know how good that feels?
October went over the top, and I still kept hiding it. I kept telling myself that awful throbbing pulse inside my belly wasn't an aneurysm, and that the hard pain moving around was probably just some kind of flare up, disregarding the fact that autoimmune flares in organs are extremely serious. I toyed around with not eating and taking breaks and other little things that didn't seem to make any difference but helped me just enough to keep faking it. I was able to fake it right up to my girls leaving for a visit with relatives, and within hours I was back in the ER because the weird rose up and spooked me and I was free to collapse into that state of uselessness for a few days if I needed to.
I know nothing yet, except that the tests and consultations are coming like rapid fire after nearly being admitted. All the years I've had so many problems and even a heart surgery, I've never been admitted. So I'm at home dealing with some quite remarkable pain and fatigue and hoping this doesn't escalate into emergency surgeries during test events or biopsies coming back with really bad news.
A lot of people have told me over the years that I'm strong and I'm brave. I keep replying back that I'm stubborn and brazenly stupid. I'm very lucky is what I am. I have the kind of mental and cognitive problems that enable me to survive hard stuff without crumbling into self destruction (a plus for neurodiversity and mental illness, guys), and the kind of personal physical and emotional history that has blunted me to pain and self recrimination, so of course I 'look' strong and brave. I'm surviving. Survivors do what they have to do to keep surviving.
It's very possible that I may not have any time for wallowing or guilt over this next month, and it's possible the only way to survive what's coming is to let a lot of stuff go and focus harder than I've ever focused. I accepted long ago that any day could be my last and I've felt lucky for decades that I'm still here. I have my mood swings, of course, but underneath it all, I know I've been very fortunate to still be HERE, saying things and loving people.
When I was on Xanga, I used to answer the featured question once in awhile. On September 23, 2008 I answered If you got a terminal disease what would you do? That might not be viewable on mobile, so I'll copy it here.
We're *all* terminal in the end. I'm a 'slow' terminal. I've already lost a niece who was born terminal but lived to 20, in spite of all medical odds. So define terminal here. I was diagnosed 20 years ago, I'm lucky I'm still alive, and I get up and face every day with progressing neurological deficit and severe pain througout my body.
So someone is asking, what would I do if I found out I'm terminal. Well, if a doctor told YOU that you would be completely crippled and blind in less than 20 years if you were *lucky* and didn't go into organ failure first, what would YOU do? I went to college and got my degree. I went on to grad school. I raised a child as a single parent and then remarried and helped raise another child. Every day I prayed that I would live long enough to see my children grown up. Every day I did laundry, made meals, and somehow made it through my day. Recently, just this last winter, I faced that I might die from liver involvement. But here I am, I'm still doing laundry and making meals. Slowly, with lots of rest.
What did I do? I faced it and kept LIVING. I didn't ask 'why me?', because statistically, why not me? Everybody's got something, right? I didn't blame God, I didn't hate my body, I didn't go on big campaigns to fundraise for a cure for my disease.
What did Stephen Hawking do? He helped flip the world of physics upside down. And dang, he's still alive, too. Some of us just won't die.
Being diagnosed with a terminal disease isn't a license to feel sorry for yourself. It's not a 'get out of responsibility' card that says you are now free to smoke and drink and do whatever you want to your poor body. It's not a sign over your head that says you get to go to the front of the line or a free meal. In fact, being diagnosed with a terminal disease is a sure bet that all your friends will fade away because they don't know how to deal with it, and that you won't be able to keep up with the fun stuff any more. So you take a good long look at your life, you learn everything you can about medications and nutrition and how your body works, you have a long talk with God, and you get real with the people around you.
If anyone out there has recently been diagnosed with something scary, bless your heart, but take a deep breath and face it. Have a good cry, have another good cry, and keep moving ahead. Say the things you need to say to your friends and family, on a blog, whatever, and get that safety net around you. Communicate with your medical team, talk to a counselor, and don't be afraid to ask friends and family for favors, and tell them thank you.
Oddly, for those on the brink and about to step over (I've seen this a few times), some feel the need to reassure the ones they leave behind it's ok, even though inside they are scared out of their wits. They can walk up to the bridge with you, but you step out alone. I think that's what we fear most, unless we're so sick that we're glad it's finally over.
Live your lives. 'Terminal' doesn't mean you're done yet.
Everyone who has known me online in some way has met this person inside of me, whether you knew it or not. I don't always talk about my stuff. I might bring it up a lot if I'm processing through something, but I don't let it eat me up. Life is way too short to sink into the quagmire of everything sux. Yes, stuff sux, but I don't want people to say *I* suck. I know I suck sometimes, I'm human, but honestly, I don't like myself when I suck, and I try not to be like that, even if my day, my week, my month, and even my year has super sucked.
I don't have to pretend for anyone. There is no 'have to'. I chose to pretend for a little while because I so loved having a useful place with people I love. But I'm stepping back now, and telling them to go on without me, like I have been doing my whole life in this house. I am part of the background, and I choose to let go of being in the foreground so that I can stay here and keep watching my people. I'm still here, still lurking, even in my own house I am the lurker. I see the stuff other people get to do, I live vicariously, and I feel very grateful I got to be here this long to see it.
Yes, I have regrets, but they're the kind that involve not having enough money to see other people and do things I want, and going there turns my soul black and makes me forget the lucky parts, so I refuse to dwell. Yeah, I feel sorry for myself for a few minutes and get a tear here or there, but I've learned from hard experience not to follow that trail through my mind because once I wind up in the Swamp of Sadness, I drag other people into the sticky mire with me and we all get stuck in yuck. There's no sense in that, it goes nowhere and solves nothing.
So I smash my brain into this kind of stuff. 54 days till Christmas, guys.
I'll share more when I know more. In the meantime, pure distraction. I gotta love all the things and all my people while I still can. 💝
