Congratulations, it’s an infection!

My fellow spoonies will understand how good it was to hear from my doctor that I have (another) UTI. The “another” part not so much, but the UTI part explains a whole lot. I shouldn’t be, but I am still surprised how the effects of an infection, or anything that triggers an immune response, go so deep and wide. I’ve been taking nitrofurantoin ( a new one for me) for a few days now, so I’m expecting my strength, such as it was, to be returning soon.

In addition to overall physical weakness and increased lassitude, I find (and maybe you do too) any kind of infection leaves my cognitive functions dulled more than usual. Frustrating when I have so many brilliant ideas of to share with you.  I can feel the ideas fully formed rolling around in my noggin, but when I sit down to write, I don’t seem to be able to build words around any them. In my younger, healthy days, I wrote a great deal. My stream of consciousness seemed to flow directly from my brain onto the page. I produced great bushels of chaff, with maybe here and there an actual grain of wheat. Not so much anymore. It seems that my writing forte now is the false start. Add in the complication of using dictation software and I never seem to be able to get anywhere.

Anywho, enough about me. While I don’t think I will post to this blog anywhere near as often as I would like to, I hope you few enlightened souls who follow One Life will be patient and stay tuned. In the meantime, feel free to poke around in my photography portfolio at Captured Light.

Better yet, turn off the computer and go play in the sun.

Tombo

I’ve lived with a lot of cats. Ever since I was a kid, there has always been a cat or two around the house. I don’t remember all of their names, but a house is more of a home when there is a cat in it. There is a different kind of consciousness at work in a cat, something mysterious and intriguing. I love their distinct personalities and their independence. Cats can see things we can’t.

There are currently three cats living with us – Toki Wartooth (Not A Bumblebee), Jiji The Little Black Cat, and Tombo. Toki’s name is drawn from a universe beyond my understanding, Jiji’s and Tombo’s from the  movie Kiki’s Delivery Service, a family favorite. My daughter named them all, and did a fine job of it, I think. Toki is the oldest, rescued from the mean streets of Belfast, Maine as a feral little kitten. The other two were properly fostered and, while not blood relatives, were raised together and function as brother and sister.

I love all three of them, but Tombo especially fascinates me. I’ve never met a cat like him. His facial expressions and body language are unique (I’ve never seen a cat do that head-cocking thing that dogs do when working something out), and no one can nap like he can. He is very photogenic. Click on the photo below to see my tribute to Tombo.

Tombo

Smoothie

iuThis little machine, the Black and Decker Fusion Personal Blender, is my favorite household appliance. I won’t go so far as to say it’s changed my life, but it’s come close. Essentially a power drill with the business end pointing up, it’s fast, efficient and easy to clean up. I’m not shilling for B&W (tho if they wanted to toss a few promo gifts my way I wouldn’t report them for ethics violations), I’m just a satisfied customer.

My Breakfast Ritual

I stuff the bottle about half-full with greens (I keep a bag of cut-up kale in the freezer, spinach works well, too) and about 1/4 cup of water. Blend that up for a few seconds. Add a banana and frozen strawberries, blueberries, raspberries, or other frozen fruit (I get bags of cut-up fruit blends at the supermarket.) Fill the bottle almost to the top  with soy milk, and top with a heaping tablespoon of cocoa powder. A dash of cinnamon or ginger if I’m feeling sassy. Blend it all up until smooth, and enjoy.

Of course, this recipe is only a suggestion. Customize at will. Use whatever you have on hand. Try adding a bit of carrot, some peanut butter, coconut, other kinds of milk or  juice. More frozen fruit makes it like soft-serve. Dip into the spice rack – make your smoothie spicy with cumin or chili powder (don’t knock it ’til you’ve tried it). Go wild. You’re an adult.

The Mindfulness of Disability

One night back in early December, I fell out of bed. Well, more like slid out. I was wrestling with the flu at the time. My fellow MSers will know what that means. (For you muggles, any kind of flu or cold or infection can send multiple sclerosis symptoms out of control.) I was feeling overall just plain weak. I sat up on the edge of my bed, and in the process of getting back into it, I started to slide off, and didn’t have the leg or arm strength, or mental clarity, to pull myself back in. So, I let it go and slipped onto the floor. I ended up on my side between the bedside table and the bed, unable to move in any direction. We called the Uh-Oh Squad, and two stalwart young men arrived to haul my bulk up onto a chair. Luckily, the only thing that was injured was my pride.

Like most evolved primates, I’m able to learn from events like this. The take away is a reminder to pay attention to every step. When I am getting out of bed, or transferring from my wheelchair to the stair lift, or out of the bathtub, or from wheelchair to car, or even reaching for something in one of the kitchen cabinets, I need to be fully mindful of what my various appendages are doing. I go so far as to actually talk myself through these transfers, paying attention to every handhold and foot placement. It’s a little like playing Twister – left foot there, right hand here, right foot over there, etc., the goal being to not fall down.

Mindfulness extends into other aspects of life. When one of Jack Kerouac’s critics first saw the manuscript of the book, “On The Road,” he said, “This isn’t writing, it’s just typing.” I used to write that way, though not quite to the same effect. I just let my fingers do the work, pouring words onto the page, just typing. The goal was to be mindless, to not think about every word, plunging headlong into the stream of consciousness. I would go back after I was done typing and either make sense of it or not. I think it is safe to say that both the typing and the editing worked better for Kerouac. Writing for me now is whole different animal. It has become an exercise in mindfulness. My fingers don’t work so well, so I have to dictate into a headset. The software that translates my speech into text on the screen works remarkably well, but it requires that I speak very slowly and carefully and precisely. I need to be conscious of every individual word and punctuation mark. I would like to think that my writing has improved with mindfulness. There certainly is less of it, and that is probably an improvement.

There are books and websites and seminars and retreats and smart phone apps dedicated to the practice of mindfulness. Those are all well and good, but in the end, mindfulness is nothing more than paying attention. Mindfulness just means being aware of what’s going on around you. The practice of mindfulness is identifying the “magic moment,” when the mind drifts away from what’s right in front of it, providing the practitioner the opportunity to refocus, and begin again. There are endless opportunities in every day to begin again. Disability provides many of them. In my case, not being mindful can easily mean falling down.

Two of my favorite mindfulness teachers are Pema Chodron and Thích Nhất Hạnh. They have both written several books on the practice of mindfulness, and occasionally host seminars and retreats.

Mindful

avatarthumbWelcome to One Life, Mark 2. My goal is to post entries every day – not necessarily about multiple sclerosis or other health related issues, but thoughts, images, quotes, resources, hacks, whacks and snacks. That is the plan. As we all know, the best laid plans of mice and men often go awry. I hope you’ll stick with me, and keep in touch.

“I should like to enjoy this summer flower by flower, as if it were to be the last one for me.”

The practice of mindful living opens our environment to us exposes wonders we never imagined during the years we spent tranced. There is a holiness and fullness to our days now; the present is a good place to be. We are less concerned about the future and as we live more in the here and now, the future simply pours into the present, unnamed.

– from “A Man’s Book of the Spirit.”

My Kryptonite

Oh, yeah. Now I remember. Maybe it’s a feature of my MS brain (what’s left of it), or simply a human-evolution survival mechanism, or maybe it’s just me, but when the weather turned beastly hot the other day, it took me a bit to figure out why I was suddenly feeling so weak. Oh, yeah, it’s hot, it’s my kryptonite again. I remember years ago, when MS was just starting to rear it’s head, or maybe this was just before, on the first hot day of the spring, walking from the back door of my office building to my car in the parking lot and being mystified, and a little frightened, at how difficult it was to go across those few dozen yards of tarmac. I was still in the “What the fuck is this MS shit all about,” and the “what the hell is wrong with me,” phase. (I still ask myself, and the cosmos, those, and other, questions.) I had no idea what MS meant (topic for a future post), and was learning stuff as it happened.

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When I first experienced the power of heat, I really didn’t know what was going on. I knew about the foot drop, and the optic neuritis, and I had read about fatigue and lassitude (still believing that this was stuff I could understand and grok by reading about it), but, wham, that first wave of heat-induced weakness caught me by surprise. Oh, so this is heat intolerance, eh? Lovely. I gotta deal with that, too? (How innocent I was. Sigh.) Fortunately, I live in Maine, where we don’t have sweltering hot days very often. And after all these years, I still get caught by surprise, and get reminded all over again.

So, yeah, heat is my kryptonite. I wish I felt like Superman the rest of the time. But, hey (as we say in Maine), at least it’s not snowing.

560Click here to buy my t-shirt! Show the world you’ve got spoons. 100% cotton t-shirt is perfect for summer. Wear it everywhere! Original artwork by Val Sivilli. 50% of profits go directly to the National MS Society.