Friday, November 4, 2011

The Spins and 2 Helps for Centering

Forgive me if this isn't my most coherent post. I may try to re-write it later. I just want to get this down quick while it's fresh in my mind and before either the extreme illness of the past couple of weeks, or other demands of life, crowd it out. Though I write to breathe, I have not been able to write much lately, both because I am much more ill and because I have far too many obligations pressing me. On the rare occasions when I have energy it gets soaked up by paperwork and house keeping and doctor visits, so I don't get to write. But I want to jot this down quick now so I won't lose a couple of helpful ideas and also so I can maybe share them and see if they help some ME friends.

Okay, so, the story in brief is that though I have a ton of techniques for pain management at my fingertips, there are times when they just don't suffice. Lots of times. Tonight for instance, I got the spins very bad. Not surprising. A heavy-ish meal to digest, a ton of cramping pain and headache pain, blood loss from monthly flow, reaction to pain with endorphins in the brain while meanwhile my already low circulating blood flowed from my brain to my stomach for digestion---it all added up to a bad case of the spins on top of some hefty ongoing pain.

Very fortunately, my caregiver and friend Blair was over helping out. He has been coming two or three times a week and saving my life. He'd just done my grocery shopping and cooked for me and the kids and was washing up the dishes, and I was able to ask him for help, and he did some wonderful things for me; in particular he gave me rice and a memory.

First, he helped me lower my head and prop my feet up with pillows and a blanket supporting them, and made sure I was hydrated, and then when I told him I needed conversation or a story to help me keep time flow linear, he sat and talked with me and our conversation brought up these couple of different but very helpful things I want to share.

Blair's day job involves work with autistic children in schools. This meshes interestingly with work as an ME caregiver, because the two neurological diseases share many features. Blair will get me some terms later on; the point for now is that he recognized some things I was saying about what I was feeling with dizziness and from his bag of tricks as a classroom professional working with autistic children, he pulled something that was really helpful, and it was just a bag of uncooked rice.

If you ever have the spins, or just the feeling of craving weight on you; if you like your blankets heavy; if the lead apron at the dentist feels good to you; if gravity seems often to sit too lightly upon you and you can't ground or you feel the spinning sensation or light-headedness; if you wish you had a little pressure on your temples for that eye pain or that headache; grab a bag of uncooked rice or beans or whatever feels nice and throw that puppy onto your head, or forehead and eyes, or chest, or belly. Or hold it in your hand and squeeze it. I've had my rice bag in all those spots tonight. Right now it's on my head and without it I would not be able to type out these thoughts. What an amazing tool: a little bag of rice.

The other amazing help was Blair's memory of me, from back before I was ill. As we talked about the correspondences and differences between ME and autism I explained I had taken an online test that placed me firmly on the spectrum, though I know that if it had asked certain questions about pain and post-exertional malaise it would have differentiated me from an autistic person and pin-pointed this other category of neurological illness which I actually inhabit. But you see, I can sympathize greatly with the autistic these days because we share certain experiences of the world and its too-loud noises, too-busy rooms and too-bright lights.

I have a fair number of friends with whom I am still in touch (though I rarely see anyone) who remember me from other days, when I seemed a different person, but Blair happens to be the one who said it at a moment when I really needed to hear it, so I want to write it down and hang onto it for myself, plus I want to share it with you because maybe someone can give you one of your own: a memory of your self, back.

Blair said he knew I wasn't on the autism spectrum really, that it was the disease, because this me he sees now is not the woman whom he met, who went to film school and played elf-chess and was a member of a leper colony at the Renaissance Faire and in later years took her tiny kids to a big outdoor folk fest each year where all had a blast with family and friends. That woman was never a partier in the sense of drinking and carousing, but she wouldn't say no to the ballet or a Neville Brothers show. She had creative and academic energy and accomplishments, she danced hard in Senegalese dance class and came out glowing and ready to fund raise at the public radio station all night, she had social energy for family and friends and so many beloved activities.

What a great gift. I don't know which is best, my bag of rice or my memory through the eyes of someone who saw and admired me in those days. I am clinging to both right now, after he has left for the night, and I want every one of you who is suffering from ME to have your own bag of rice and your own friend's memory. Please ask someone articulate, someone you trust, someone who Knew You When, to tell you who you were. Just to remind you. Because we do lose touch with that person and while we are forced to let go of the activities, we maybe need to hang on to the lost self: the dancer, musician, athlete, community activist, worker, parent, teacher, student, the embracer of life we once were. May we each be blessed with at least one person who can share with us who we were.

I've just jammed this all out in free flow with no editing so I hope you see what I mean. This memory given to me from another's perspective is every bit as grounding and calming as the bag of rice on my head. That woman was real, and her abilities still live inside me if only as memories. I can neither dance nor socialize now, but the heart that did these things is still beating in here. Thank you, Blair, for remembering me and giving me back to myself. Thanks for this great bag of rice on my head, too. Thank you for spinning me back to center, where I can ground, and smile.

Got to go head down and feet up again now. That's all there is. I'm glad I jammed it out and hope when I read it again it will be saying what I meant!


1 comment:

  1. You said it beautifully, Kassy. Very moving blog post. Really wonderful that you captured this moment and shared it with all of us. Here's to days ahead when rice will be for eating and memories will be for adding new ones. Many blessings to you and yours. Meg