by way of an introductionbefore this pandemic began, i was just your average, everyday, completely ordinary mother of an energetic 10-year-old boy… who was in her 50s… and happened to be attached full-time to oxygen, the most obvious manifestation of my chronic illness.
okay, so i wasn’t completely normal. but now EVERYONE is connected to a manifestation (quarantine, distancing, masks) of a chronic illness (pandemic), ergo, everyone has a chronic illness. ipso facto: i am now completely normal. worldwide tragedy: the great equalizer.
now we (all) survive each day, hour by hour. those of us who have wrestled with chronic illness for a spell would be happy to dispense advice if asked. even if not asked. (we are much like your favorite relative that way. you know who i mean. and yes, possibly i mean you.)
back in the day—as my illness progressed—i would send emails to friends and family as a way to update them on the roller-coaster of my struggle with wellness. those emails morphed into newsletters, and my wellness mutated into a more severe manifestation of sarcoidosis.
at some point in this journey a good friend sent me this book: backbone, by karen duffy. that book was transformational for me. (you can read my rave review of it on the goodreads page, just follow the link.) suffice it to say that that book helped me “come out.” yup. it wasn’t until i read that book that i realized that i was a person with chronic illness. i had been struggling to keep up. to keep doing all the mom things, all the partner and friend things… all the things that normally-abled people take for granted. i just couldn’t do them anymore. but more importantly, i wouldn’t—probably—ever do them again. so, i meditated on that little revelation, and then i moved on. but let me be perfectly clear: i moved on—and keep keeping on—with the constant love and mega-support of my peeps.
now let me tell you about my amazing peeps. because my peeps are a part of me. they are partners in this ability of mine to live the mostly enchanted life i live.
- firstly, there are my skypeeps, as i call them (i explain all that on the game page):
- phil, my main squeeze. we just celebrated 14 years of wedded bliss. without going into EVERYTHING he does i will tell you that he is my sweetheart AND my rock. i rely on him to do virtually EVERYTHING. but definitely not literally EVERYTHING. ‘cause, well, that would be weird.
- our beautiful 10-year-old thunderbolt of joy, samson. you’ll be hearing a lot about him in this blog. he’s growing, learning, adapting and has become quite a help to us all.
skypeeps at skypalace
- secondly, there’s you. i hereby dub thee my flypeeps*. you may not live with me, but your presence in my life helps. your emails to me, your funny memes, your phone calls, your facetimes, your zooms, your texts, your letters, your random packages of bits and bobs, your thoughts and yes, your prayers… all of it helps. any good is all good. so thank you.
and now, the former emails and newsletters have alakazamed into this blog. this blog includes wellness logs (updates on my “health”) as before, but it’s also a portal into the world here in our home. we’ve dubbed our home skypalace. why skypalace? well, if you could name your home anything wouldn’t you choose a cool name?
what would you name your home if you could name it whatever you wanted? because, well, you can.
welcome to our portal.
*flypeeps, formerly known as team breath. if you’ve hung on to your team paraphernalia from the previous rewards program, don’t worry, those are still valid. don’t forget to have your card punched next time you’re cashing in your ‘atta gurl’ chits. there might be a free t-shirt in it for you.
*to learn about skypalace: the game please visit the game page.