If you’ve never heard George Carlin’s routine A Place for My Stuff, take 5 minutes and treat yourself to a good laugh. I’m living in that comedy routine these days, and it helped me a lot with perspective to find it online. I laughed so hard I cried all the way through.
The last two weeks I’ve been sorting through and clearing out my “stuff,” in preparation for a combined yard sale with the Moscow Food Co-op, who have used about a third of my large wooden garage (more like a barn) as storage in exchange for a discount for over a decade. They, too, have decided it’s time to clear out and clean up, so we will be doing that together this Saturday. In the process I’ve raised lots of dust (something I didn’t used to be able to get near because my rosacea was so bad), found a few treasures and a lot of curiosities, extras of things I forgot I had, and things i used to use that either have became obsolete in themselves, or no longer serve the once completely necessary service they once performed for me.
The two items at the front of the photo above fall into that last category. The first year I was diagnosed with MS, 1996, I did not have the strength in my wrists to hold a book up to read it. I also became so tired trying to track the lines of print that I would have to close my eyes after just a few lines. I had to be in bed a lot, with my head propped up by pillows, since my neck was too weak to hold it up for long periods of time. I had met with a very kind and resourceful occupational therapist who came over to my place and helped me figure out basic things like how to get myself up off the floor without falling, how to place my whole arm on a surface so I could sign my name, and many other useful strategies that I still call on when necessary. We also scoped out where to put support bars in the shower and tub surround. And she found me the two items that you see in the photo. An old wooden hospital table and a book buddy, for holding a book open.
In those days I spent a lot of time on my bed against those pillows with that table in front of me. I had to have my arm propped up to hold the phone. I had to use the book buddy to read, and the table to put my whole arm on if I wanted to write or draw. A lot of my conversations with visitors, or even astrological clients, or the Social Security Administration over the phone, took place from this vantage point. A dear friend of mine affectionately called it “Command Central.”
But I don’t live on the bed anymore in the way I once had to. In the 6 years since I started eating low fat whole food plants, the hospital table has stayed put to the side of the bed, a long narrow nightstand with the dog’s bed propped up against it. I’m on my bed only to sleep at night. In the daytime I’m up and about, and I take my afternoon nap on the living room couch. So now that I’m moving, it seemed fitting to pass the table on to someone who needs it more than I do. When I cleaned out the drawers I found a picture of myself back in those days. My hair is dark with henna and I’m standing by the bed, arranging the pillows before I get on it. I have faith that the rest I take will heal me, and I smile.
And rest is essential. But without the whole plant low fat food, I wouldn’t be saying good-bye to this old hospital table. I wouldn’t have written this down on July, 2010: “I’m not in my bedroom as much, not on my bed as much. Hardly at all, really, except at night, the second part of the night, after I sleep for a while on the couch with Romeo.”
I think I had a longer entry in mind, but never got back to it. What I didn’t describe at length was the time in 2010 I stood at the southwest corner of my room, where part of the masonry stove comes into it, and I looked at my bed. I had what I call a “What the Bleep Do We Know” moment. I saw my old self sitting there on the pillows, arm propped on the table, trying to draw or write in my journal. Or propped up to be able to have a phone conversation. Or even propped up to help Mike with his homework, or visit with a friend or a client. So much of my life had taken place on that bed. And there I was, standing up, watching my old self conduct business there, waiting to get stronger. I had never seen the bed, or myself, from this perspective. It took 14 years of living with the MS, and at that point 2 years of eating low fat and plant-based for that view to become visible.
The hospital table has two shallow drawers in it. As I prepared to wheel it out of the room to join the other items in the living room I’ll be selling, I looked through these drawers. I found some important pieces of paper I’d stashed there for easy reference. One was a small scrap with advice from a grief counselor I talked on the phone to after a friend of Mike’s had suddenly died in a car accident when he was 14. I had used it again when my Mom’s lung cancer reoccurred and she would not recover. It read simply:
5 things to say/hospice
forgive me
I forgive you
I love you
good bye
thank you
In the days before I changed to this very low fat whole plants way of eating, I was sometimes subject to crying jags and despair, almost without notice. I never knew when the emotional wiring would short circuit and leave me in a state of fall-apart, or what I used to wryly call “52 pick up.” It is one of the most heart-rending symptoms of the MS I have experienced. It isn’t that there should be no crying or sad feelings; it’s just that the needle would get stuck at that point in the record. I would know it, yet just have to wait until my slow nervous system found the connection that would lift the needle. Very uncomfortable and often humiliating. It immediately began to improve when I changed to this way of eating, and is altogether a thing of the past now. But when it was happening, it wasn’t easy for my son to witness. One mother’s or valentine’s day soon after a college age Mike moved out, I had succumbed to this overload, and hoped I would be alone while I waited it out. But I got a call from Mike in the middle of it, and caught in the self-absorbing cascade of reflexive despair, must have told him no one loved me, not realizing how he would receive that. A while later he arrived with a card he’d found at the Co-op. On the front was a heart with wings and the word “glory” pasted in its center–the words on the front read “There are many things, I’m sure, without which we could not live. . .But love is the only one I can think of. . .” And inside he had written, “I love you, you are loved. –Mike”
That was in the drawer too.
And finally, I found this other, as yet unfinished treasure. A handwritten start of a story about how I got into my blue house:
“312 South Asbury
She was not asleep. He was asleep, unburdened of his waking self, or her thoughts, her wakefulness. She got up. Padded through the door, then the short hallway slanting slightly to the northeast, past the small bedroom where her son slept, the globe on his desk lit up from within, each pastel continent aglow with pale light against the black maple blocking out the starlight. All was quiet. She entered her office, sat in the old worn armchair, her mother’s, at the window. She didn’t think now I can cry, but she did, the tears just came, and she looked past them, out the upstairs window into the night and across the street. There it was. The little blue house, its two narrow stories stacked neatly on top of each other like boxes, the bottom one only slightly wider than the top one. All was silent, they were asleep there, too. the young woman who watered the columbines with a cigarette dangling from her mouth each evening was hidden away in the darkness. The house had called her in some way she could not name. When she should have been grading papers, or writing, she stared instead. But it had never called her out of sleep until now.”
How does the rest of this story go? In one version, it’s simply my life the last 20 years. But in others, it may well weave its own spell, tell me something that can only become visible to me when I am living somewhere else. Just like standing at the corner of my room and watching my former self live her life on the bed. Soon, I’ll have the privilege of finding out. Maybe, like the story of what it felt like to see myself on the bed, it will remain within me for a long time. Maybe I won’t write the rest of it, whatever it is. But maybe I will. No matter what I decide, it’s a great beginning.
{ 24 comments… read them below or add one }
thanks again for the lovely writing.
You are so welcome Marge–I so appreciate your faithful reading!
O Maria, again your story moves me deeply. The card you received from your son brought tears to my eyes. So beautiful.
And your strength, then and now! Wow!!
I know those 52 pick up moments! I never realised they could be a MS symptom.
That’s the thing: a lot of what you write about, I recognise. So it hurts a little and it is uplifitng at the same time. Because you are already in the corner of the room looking at your former self on the bed. And I’m not there yet but thanks to your story I have faith I will get there too.
You write so well and have such a wonderful style. If you ever write a book, please consider this a pre-order 😉
I am deeply grateful that you decided one day to share your story with the world. You give me hope, you inspire me and I feel validated in the choices I am making.
Hugs,
Véronique
Thank you Veronique! I was surprised that it was time to write this, and it just sort of came out. I can surely understand how you relate to these experiences and how that is emotional for you. I can only say that it’s been absolutely the case that over the 6 plus years I have stuck with this, I have seen and continue to see myself improve steadily and slowly, in a way that continues to amaze me. Sometimes it happens so slowly I don’t know it’s happened until I realize I am in a whole different place. So stay with it, and see what slow miracles of your own you can manifest. We’re all different, but even not getting worse is a kind of miracle when you’re dealing with a progressive disease. Thank you so much, too, for the kind words about my writing, and your “pre-order” in spirit!!
I also am so thankful that you started writing this blog and share your story and your life with us readers.
This is so beautifully written!
You are welcome, Silva–it makes me so happy to read your words!! Thank you!!
OK, now I’M crying! 🙂
Lovely, Maria. Simply lovely
<3
Nicole
Thanks my dear Nicole, thanks. Here’s a virtual hankie and a hug. <3
How far you’ve come in the last few years! It saddens me to hear how difficult it was for so long. I can only imagine what it was like for you; I count myself so lucky I found Jelinek and Swank early, hopefully preventing anything else. I do empathize with the random times of emotional distress, unable to snap out of it, thinking bad things… The card your son gave you brought tears, and a smile, to me. Sometimes it’s the little things that snap you out of whatever space you’re in.
The story of your blue house is very sweet; it’s amazing how you knew there was something about that house, like you were meant for each other. Life has a funny way of working out. To take a cue from LOTR, perhaps finish the story with “and she lived happily ever afterwards to the end of her days.” 😉
You have no idea how much your beautiful words mean to me (and others) – I am ever grateful that you share such personal moments and stories, showing me there is always hope, even when things seem dark.
Good luck with the yard sale and continued excavation of your house! Here’s to new beginnings, new stories, and always love. xoxo
Yes, Veronica, you ARE lucky you found Jelinek and Swank early and knew you should go for it. Thanks for this beautiful comment, your empathy, your heartfelt reading–and I love your ending!! It means a lot to me to know these words make a difference. It’s one of the main reasons I write them and I always hope they will. Thanks for the good thoughts about the yard sale–guess I should be doing more on that, so better get to it. New beginnings, new stores and always love back at ya. xoox
Maria, this writing is so powerful to me. I loved it. So wonderful that you share your thoughts with us so we can learn and understand more about your journey with MS.
Thank you Carollynne! I really appreciate knowing that you found this blog post powerful and that you loved it. In a way, it was a bit of a risk, but I’ve gotten such wonderful feedback I’m glad I went ahead with it.
Maria you’ve come so far which is wonderful. Lots of bitter sweet memories but oh how you have risen above your challenges.
I too was thinking that if you ever decide to write a book about your “slow motion miracle” I would love to buy it : )
Keep on keeping on with this wonderful life of yours – it just keeps getting better and better….and what a sweetie your Mike is.
Lots of love Angela X
Thank you so much, angela, for the lovely comment and the vote of confidence about a book–and yes, Mike is a sweetie. I am very lucky. xo
Hi Maria,
I loved and appreciate your story, how exposed you must have felt sharing it. Wow.
I’m so grateful I’m eating this way (and this is how I found your blog, through the McDougall message boards). It’s a powerful, and empowering, way to live.
And that George Carlin bit is my favorite of his… I watched it so many years ago and have never forgotten it. Believe me, a few years ago as we were purging just about everything we own in order to fit into a 34′ RV, I thought of his words a lot. Thanks for reminding me of it again!
Thank you so much, Danielle–I’m glad you found this way of eating, and my blog, too, through the McDougall site. The wonderful thing is I didnt’ feel too exposed–I just knew it was time to share this–to me thats’ also a sign of healing I am very grateful for. I think this is my favorite bit of George Carlin’s too!! Sounds like you’ve lived it as well. 🙂
This is beautiful! You should most definitely consider penning a memoir (a memoir with recipes and artwork, please!)
Welcome, Pamela 🙂 Wow, thank you so much! I am going to let all this “percolate”. . .:)
I’m serious! It would appeal to so many people on so many levels: inspirational, informational and educational. Plus, you’ve already built a strong platform with your blog, FB page, and other social media outlets – the platform is a very, very important aspect of publishing these days.
Thank you very much! I am, and will continue, to seriously consider it. I really appreciate your perspective. When I am settled in my new place, we’ll see what emerges. I’m a slow motion kind of gal, but I DO feel it percolating, so it’s truly wonderful to know you think it could fly on so many levels.
What a gorgeously written post, Maria. It can be tremendously moving to find artifacts from various moments in our lives. Each time I move apartments I go through it, coming upon mementos that remind me of who I was at a certain moment, and who I am now.
It must be quite remarkable to compare a past moment in your MS story with the current state of healing and restoration. The only thing in my life that I can compare it to is when I find photographs of myself when I was deep in anorexia. They are painful, and they drudge up a lot of feelings that I hate, including remorse. But it’s also a profoundly hopeful moment for me each time I look at the shadowy girl I used to be, and then stare down at my strong body, witnessing the healthy woman I’ve become.
Appreciate this post.
Welcome, Gena, and thank you so much for this thoughtful comment. I certainly can feel how your own experience healing from anorexia would bring you similar moments and experiences. I especially love what you wrote here about it being a profoundly hopeful moment to look at “the shadowy girl” you used to be (loved that choice of words), and then stare down at your now strong body to witness the woman you’ve become. I always enjoy reading your personal reflections and recipes on Choosing Raw, and I am honored my post made you think of such profound moments in your own life. Thank you for letting me know!!
I have been reading your blog on and off (found it through Susan’s blog), and I’m glad that you are in a much better place. Reading this post brought a lump to my throat, because my cousin (age 22) has severe MS. He was only 16 when he was diagnosed. It breaks my heart and leaves me feeling helpless. Doesn’t help that we live thousands of miles away. In any case, I’m happy for you that things have improved, and it gives me hope for my cousin. Take care.
Dear RS, thank you for reading and for this heartfelt comment. I am very sorry to hear about your cousin. I will hold good thoughts for him to do better too. All best to you and your family.