Just When I Think

I am so so so tired—tired of being brave, tired of being resourceful, tired of fighting for each toe hold of territory that I stake claim to and inevitably lose. The very labels that people use to admirably describe me have become a millstone. I am worn wafer thin by this new terrible eye pain and the chutes n ladders changes in strength; by the unrelenting financial pressures; by battling with doctors; by having this oddball, hard to diagnose/explain/defend form of an already baffling disease. 
It all is much too much.
I am not known to be an enthusiastic pet person. My husband attracts strays and would probably happily tote home the leftovers from the Ark, if only I would agree. Over the years we've always had pets, but they were clearly 'owned' by the men in the family and fond acquaintances of mine. Last year, a coworker of my hubbies, first introduced us to Sophie, a little rat terrier who had lived with a disabled lady all of her life. Sophie somehow worked her way past my natural pet reserve, and my deeper hesitancy over tiny dogs and now provides me with constant companionship, snuggled under my left arm, she is tuned to my moods and movements. Yesterday I learned that instead of the youthful five years old we thought she was, she is actually just about 13. And, her breed usually lives only into their teens. Unbelievable. Somehow I have to prepare to lose one more precious thing in my life. Now, our long-term family dog is elderly, and our new dog is too. I guess the three of us can sit around and wonder who is going to deteriorate fastest. 
It all is much too much.
When I am asked why I haven't been writing in my blog for the past few months, my instant answer is the up tic in my illness. The truth is closer to say that I can't seem to find words or inspiration. I find myself running through ideas that are either too mundane (managed to brush my teeth today and only dropped the toothbrush two times…); too personal/medical/boring (yesterday was day seven with no relief for constipation, finally called the doctor,…) or too grim (read this post). It isn't that I feel that I need to protect others from the realities of my life—more that I am not certain I want to memorialize it.
It all is much too much.
How then, do I stay sane and keep going? My answers range from the simple sweetness of dark chocolate and the satisfaction of winning at Scrabble to the savory richness of a 25-year partnership with a great guy that was honored by the amazing gift of our son. And, if these things weren't enough to live for, I am anchored by a faith that is both simple, satisfying, and so profound that after 30 years I feel like I only have a child's view. Right now, my faith life is akin to a barnacle on the side of an oil tanker. I can't really do much more than hunker down and cling to that which is known and solid. I can't see the vessel, or know where I am headed. But, I do know how to be a barnacle.
And that is enough.

Measuring Indignity on an Entirely Different Scale

Just a little earlier this evening I slid off the toilet and landed with a solid thwack on the floor with my bare bum all exposed and my undies around my ankles. Other than a twisted knee and what will probably be a rather sunset-hued bruise across my mid back, my sense of pride and dignity took the hardest hit. MS uses a rather crude peeler to pare back layer after layer of, "I would never," and "I'd rather be dead than be caught doing x,y, or z."
MS has a way of rubbing my nose in my physical failings like a parent who cruelly spanks their child for wetting the bed. It is as if a series of interlocking steps and processes that were carefully interwoven to create ME as I grew from infant to toddler: feeding & dressing myself, going potty, walking; grade school: exploring the world, meeting new people, riding a bike, playing outside; young adulthood: education, independence, travel, camping; adult: career, gardening, cooking, passion for living are collapsing back into themselves at an accelerated rate. Until I feel like my body is on a completely different journey than the one I expected to to take.
I've learned it is unwise to say I will never do or allow MS to do a certain step in my 'un'development. Although, I still cling to a few. I can't imagine having a total stranger come into the house as a bath aide. I don't think I could live if I were blind. Those are two that can crop up in nightmares. I used to be scared of being trapped somewhere out and about in my wheelchair, but in the twisted way MS works that has never happened because I am no longer able to go out and about alone because I become too fatigued and can get lost easily. Ironic, isn't it. What I feared wasn't anywhere as bad as what I ended up having to live with.
I am not particularly brave or noble or tough. I am, however, a survivor. Today required me to put aside my pride and ask my hubbie to drag my naked bum off the bathroom floor. And, knowing this damnable illness as I do, I am not too certain I want to know what it will ask of me tomorrow.

Under Water

Four months? 16 weeks without posting, where did the time go? It is as if I went wading in a pond, my feet became stuck in the muck and I was slowly drawn under the water. Over time a thick opaque layer of ice built up covering the surface and I can't move or breathe. It isn't necessarily bad in a call the coast guard panic at the disco sort of way. More, just confining and suffocating and compressing and simply put, more than I can push past, through, or over.
Clinically, this is depression topped with a heaping ladle full of chronic pain and a garnish of cognitive loss, life hassles, and other bits and pieces of this and that. Frankly I am tired and warty and grumpy. I am equally tired of putting on a brave face and fighting.
And, in spite of this terrible inertia that grips me, I will. I wasn't sure I had anything left to say on my blog. Then, the other day a friend shared that she had shared my writing with a newly diagnosed friend. If I can let go of the idea that I have to be the poster child for the positive MS patient and share my life, warts and all. Maybe there are words left in me after all. 
I can put on a happy face and act all sweetness and light. But, a little like a roman candle, I quickly fade and collapse. A short visit or a quick trip to the store or a walk around the block can lead to hours or days of increased symptoms. The pain I live with never goes away-it gnaws and eats at me all the time. Somehow, I have to find a way to live. That will be my focus.

A Touchstone of Blessing & Love

One week ago today, 17 folks in my circle bravely gathered on one of the colder rainy April mornings of late and walked over three miles for no other reason than to make a public statement that they love and care for me. WOW On my darkest days I will remember their generous giving of time and body heat as well as the generous donations from family from across the country as well as the many emails and phone from well-wishers. With a nod to Sally Fields, 

"you love me, you really love me!"

The occasion was the MS Walk 2011 and our part was TeamJanine. With 16 Members, several donors and many rooters behind the scenes.

Team members were: Sasha pushing Kaylee, next to Carol, my Mom Mary, Karin, Becky. Laura (w/ sign), Leone w/ her granddaughter Alyssa, In matching blue caps & the first to cross the finish line, Reen & Ted, next to them, my hubbie, John, next to him, our Dad, Dan. In the front, me in my wheelchair holding the team mascot Sophie next to my pops Rick and his dog Mojo. And, Janet who took the picture.

Here are some other images from the day:

Janet, Mary, Laura, Me and Sophie-All smiles before the walk and the rain

Sasha, Laura, & I share a smile with Kaylee

Kaylee, the youngest walker at 20 months, returns snug and warm! I believe our oldest walker is in their late 70s quite a range of ages!

My friend Carol might win the the award for wettest hat

Clam chowder to warm up the tired walkers: Sasha, Kaylee, Carol, & John

Leone & Alyssa return

Thank you Laura for walking, on top of working a full day, and caring for a sick kiddo! Thirty plus years of friendship-You're the best!

Rick you deserve the team spirit and purple awards. And, I am buying you a raincoat for Christmas!

And to my Aunts and Cousin who so generously made donations to the MS Society. TeamJanine raised $490. 

What a marvelous way to be reminded that so many people are willing to invest their time, energy, mind, and spirit in fighting MS and letting me know so clearly that I am valued and loved.

Thank You, Thank You, Thank You, 

Janine

An Entire Post About Toilet Paper

 Simple Becomes Complex

So, yesterday morning, the annoying electronic despot that rules my days rang at 10am on the precise dot as it does every single day with the message, PX. P is for pee and X is for time. Without this chirping time cop I have little or no sense that my bladder needs emptying and am prone to leaks where my belly is slowly wet or flooding where I resemble Noah, with no ark. Every two hours it reminds me to drag my dead butt in to the bathroom or prepare to pay for the consequences.
Back to 10am yesterday morning and my chirping PX and my Pavlovian response.I've learned the hard way not to hit 'dismiss' and not actually go. When I get to the bathroom I discover there isn't any toilet paper, no problem, there is always some in the cupboard-nope; check the closet-no; I can't find the flushable wipes. I've rolled in circles to every spot that the TP could be but there isn't anything. I know of two or three places that I could check if I could walk. Now, my bladder is suddenly urgently in need, I have no TP, and in some sloppy mix of hating my legs, the incessant beeping of  PX, and facing my third week of chronic nerve pain in my eye and head I break down in tears. Not just a few little frustration drips, but big sloppy ugly crying that doesn't have a whole lot to do with toilet paper. Luckily I found a partial roll on my commode and sat in the bathroom and cried.
A few days earlier I posited to my husband that he had better die before me otherwise I would be sharing at his service how much I appreciated his quiet habit of always filling the toilet paper holder and storage rack. That I found his simple gesture to be a statement of the wonderful care he takes of me. This made yesterday's emptiness and resulting little squall all the more ironic. 
This morning, not only was the roll full, the storage container and the back of the toilet had a small mountain of paper. And, my package of wipes were tucked at the base of the toilet. Yesterday they were hidden in plain site on the edge of the bathtub. He'd taken the time sometime between bedtime and breakfast to build a buttress of TP, his attempt to hold me together while he works across town.
I don't know if this is a story about toilet paper, or bladder function, or kind husbands. Maybe it says more about the every day hassles of my world, maybe it illustrates how fragile my emotional shell is. I do know there is meaning here: in TP, and electronic potentates, and crocodile tears. Thinking about it all now I can smile or I could cry: only time will tell tell.

Big Plans Afoot

I recently watched a show on the Food Network Channel starring Ann Burrel and have decided that if my life hadn't included MS I would have had her 'food life;' hard working, practical kitchen, earthy ingredients, food that looks so good you can smell it through the screen. I imagine a house full of friends, fresh sea food on the grill, a luscious pear torte cooling in the pantry: the pleasant thrumming of a life busily fully lived. Not perfect by any means, but as complex and alluring as Paella with Dungeness and as soul satisfying as Rogue River blue cheese.
My fella and I started together 25 years ago this month. Life was simpler then. A box of Mac n Cheese cost .39¢ and when we were flush we would throw in hamburger, onion, and, sour cream. It seemed like our lives flitted from the next term paper, pay check, or invitation to dinner with little thought beyond the immediacy of that day or moment. Life was full of bits and pieces that blended together into the rich broth that has seasoned the rest of our life together.
Our son graduates from Tulane University in May of '12. Hard to believe that this milestone has come on soft feet into the forefront of our lives. I find myself dreaming of visiting New Orleans and enjoying his life there for a few days next spring. To sit at the neighborhood cafe he described eating sweet potato fries with pecan topping. To see him graduate from college didn't seem possible a few years ago, but now, I can almost reach out and taste it. 
The past few days I've wrestled with an altogether different beast. One of the cards I've drawn in the MS deck is Occipital Neuralgia. If you asked me how I was feeling today, I would use the lay person's term of headache, when what I mean is: on the right side of my head, from the taut tendons in my neck, slowly fanning up and over the scalp before narrowing down to my eye, lives a creature that seems to writhe and slither just beneath my skin. Randomly it bites down on my eye with an ice pick of pain. The sensation is close to the drop at the bottom of the ferris wheel, pit of the stomach, nausea while also being cloying, burning, and electrical. At times, it burns so deeply I think smoke should seep from my hair follicles. Light and sound intensify every sensation. For the first time, motion makes it worse as well.
My big plans? My 'to do' list for the decade, year, hour, or minute? Sitting as quietly and motionlessly as possible. I am downright witchy. Talking on the phone hurts, maybe if I stare at it it won't wring. Maybe if I don't breathe, my headache will go away. Maybe.

It's Just Been Too Damn Hard

How have two months passed since my last post? Time slithers through my fingers like the memory of dense fog hanging onto the edge of darkened streets. At times, I've felt like I pulled a fold of the earth over my head and made a concealing pocket of cool dirt to hide in. I've watched with disinterest as the worms have burrowed by and the roots have dug deep. I haven't had words or the ambition to write them down. 
My state of being isn't any one event, one root cause, one dramatic whoopsy-daisy that can be circled in red crayon on a calendar. More like the finger of a curious child-giant reached down and flicked off the party lights, blew out the candles, and left me in the twilight. 
I can survive. MS, the old witch, isn't winning this round. I think of her sitting on her bony arse in her mushroom brown lair plotting new recipes for neurological destruction. In her best wicked voice, she challenges me: think you know what pain is my pretty, think you know?
What she doesn't seem to ever learn is what a tough old girl I am. A snippet of scripture often floats through my head on my darkest days, "I know the plans I have for you..to prosper, not to harm." This is what I cling to-not the spiteful strafings and clawed swipes of MS.

What the Dead Tell Us 
about Heaven and Hell

for Sara

Brett Ortler

They explain it in stories. 

In one, there is woman in a garden 

of a ruined plantation where the bricks

of the main house burned

long ago, but the terraces are still tended,

and gardenias grow in groups

of three or four. And a man is with her, and he loves her. 

But it begins to rain, the water is cold on their skin, 

and in that moment he knows he will go north and lose her.

For the first time in his life, he believes in heaven and hell,

not as far-flung countries, but as twin cities, 

with skylines in plain sight of one another,

both borders lined with billboards and bright lights,

and he realizes how hard it is to hear the difference 

between a city full of worship and one full of wailing

and how easy it is travel                                 

from one to the other.

Getting Back to Dancing...

I've been wading my way through what seemed an unsolvable quandary: dare I do or dream a thing when the specter of MS is always waiting in the wings to swoop in and steal the show.
This past weekend my brother came to town to spend a few days with me and others in the family tribe. He lives in Vermont and so his visits are all the more precious, because they are rare. His unending empathy and his ability to 'get' this illness, have helped to move our relationship from siblings to friends. {don't worry, bro. I haven't forgotten about the tacky 'more than a brother, a friend t-shirt that I owe you!}
It was one of those halcyon weekends with beautiful crisp clear weather that seemed to reflect brightly the connections and moments that came together to make it extra special: sharing memories of childhood family backpacking triumphs; tromping around with my 4-yr old great nephew; sharing early-morning coffee with my brother; eating way way too much at the Pilot Butte drive in. Flashes of moments that I will treasure in my memory for the rest of my life.
As we were all busily cleaning the vacation home we shared my brother asked me to take a moment and listen to a song he found particularly moving. The artist is Iris Dement, a web-described cowboy folk-singer whose lyrics are amazing. It was another song, "Shores of Jordan" on the disc that provided my transforming moment.
Music is a powerful tool for helping me to express and clarify my thoughts. From favorite songs and singers to tunes I've never heard before: transformation can come from unexpected places. Iris provided the words that gave me the answer I've been searching for:

Well, I looked up into heaven, I thought I'd solve life's mysteries.

I observed the constellations for a clue to my destiny.

But the rhyme of life confounds me, things will be as things will be.

So I'll just dance the shores of Jordan 'til the angels carry me.

I'm gonna let my feet go dancing to my very favourite songs,

'Cause I know my time for leaving is bound to come before too long.

And there ain't no way of me knowing how tomorrow's gonna be,

So I just dance the shores of Jordan 'til the angels carry me.

So, in a few sentences, tied to the last hours of a special weekend, I knew that I want to live. To relish and enjoy everything that I can. I'd be lying, if I didn't admit that this past weekend's adventures aren't costing me this week. My usually strong right side is dragging, my pain level and exhaustion are off the richter scale. It may take days for me to recover
But, in spite of the price I am paying for letting every line of my dance card be filled in—I choose to dance.

The Envelope Please...

And the answer is:
Split neatly into two camps—those with MS and those who haven't had the pleasure. (to read more about the question go to my  Previous Blog)
Those with MS expressed that there is no easy answer to the question of whether or not to risk doing a thing and face the crushing disappointment when our bodies fail us.
The 'peds' universally said go for it. It almost seemed like a wall of cheerleading shouts, trying to drown out the downer that life with MS can be.
Personally, I don't know. Reach for dreams or stay safely within the limits? So far, no answer makes sense or fills in the blanks on the 'paint by number' I am working on.
I am not sure that my non-MS people can really understand the quandary, no quagmire, that living with MS creates. Maybe my experience yesterday can illustrate. I woke up after a fairly good sleep feeling about as good as I do. This happily coincided with a monthly gathering of women for a crafting circle. I went for a few hours and enjoyed myself. I knew it was time to go when the fatigue hit in waves and I started to have micro twinges in my muscles. Home I went and within the next few hours MS started to charge me the price of playing. Stabbing electrical strikes in my left thigh, all over twitches, spasms and charlie horses (lumps of hard muscle that slink away with massage only to pop up again in another part of the limb) The most frightening are the electric jabs and weakness in my right leg, which is usually unaffected. 24 hours later I am in too much pain, too fatigued to get out of bed. Church wasn't possible. 
Was it worth it? Not right now, it wasn't. I hope that my nonMS readers will better understand the dilemma. The real world toll that doing something as simple as sitting and doing a simple craft for a few hours can make me pay.
I wish I could know ahead of time what the MS cost will be for a given activity. Then I could decide if it was worth it.
Footnote:
A couple folks expressed surprise  that I was 'doing better' than I had expected. I read back over my last blog to see what they meant. I believe this sentence "My recovery from the July relapse and hospital stay is better than I ever expected." has created the confusion. I am not miraculously cured or ready to run a half marathon. The July relapse led to 10 days in the hospital, loss of function on my left side, and the inability to transfer or dress myself. I came home to a hospital bed. So I am doing better that I was in early August, but compared to what? I can be left alone during the day. I have learned to roll over and have increased use of my left side. My left hip seems permanently profoundly weakened, and scooting to the left is difficult at best. Better? The hospital bed is gone, function has increased, while decreased cognition, weakness, and other symptoms remain. 
Footnote 2:
Please, please, please would folks stop telling me that I am just forgetful, or getting older, or compare me to folks who are forgetful and older than 65. I don't mean to offend anyone, but the cognitive problems I have aren't related to aging. Thank you.

Perchance to dream?

On the surface floats a rather obvious answer. My culture is rich in a sort of Horatio Algieresque bravado: a climb every mountain, sail every sea, be all one can be despite rain, slow, sleet or what have you. So, as long as one can do a thing, or dream a thing—one damn well better.
Imagine working for years to build a house. Each room carefully designed for form and function; from the lovely solarium looking out over the rose trellis to the cozy den with its well-appointed wing chairs and grand fireplace. One day, a letter arrives in the mail that the bank is oh so very sorry, but there was a terrible oversight and they will be foreclosing on this beloved house. The letter doesn't specify a date or a time; but it will happen. After wrangling and fighting; the house's loss is a foregone conclusion. The owner can batten down the hatches and refuse to recognize what is coming or the owner can pack a few things and depart or the owner can quietly close down the place; shroud the furniture, close off room by room; and hunker in to live out the days left to the house.
With the steady onslaught of loss caused by progressive MS, the third option was always my choice. A continuous process of closing doors and putting away those things I can no longer do. Sold the bike at a garage sale years ago; stopped driving with the arrival of aural neuropathy and weakness; left the dream job and never went back; stepped back from volunteering at my church; from the practical day to day functions to the bigger things like my dreams of an old age with my hubbie; I've chosen to close the door, mourn the loss, and move on. It is harder to cling to the cobwebs of what if and maybe and constantly be disappointed than it is to let go of losses and pack away dreams. 
Over the past few weeks I've wrestled with a fourth option. Some events that seemed too far away are now close, such as my son's 2012 college graduation. My recovery from the July relapse and hospital stay is better than I ever expected. And then, there is Desmond TuTu.
A delightful young woman I know spent last semester sailing around the world. He was part of the faculty leading and teaching during the trip. On a shore excursion that had an audience element (I am fuzzy on the details) she was sitting in the crowd when a hand tapped her shoulder. It was Desmond TuTu offering her popcorn from his tub. She took a few polite kernels. This exchange repeated itself several times. Finally, he leaned over, held out the tub, and said, "Be Greedy." Take a big handful, dive in and don't miss the buttery ones. Don't be polite, or shy, or resigned to a little bit. Be greedy.
I heard this and had one of those clear, bell tolling moments. Here I am settled into these clearly defined square feet of my life. Resigned to the room or two I live in while I purposely allow the rest of the house to slowly molder away. Can I, should I even consider opening any door, pull open the curtains on any of the things I have worked so hard to let go of?
For a walking talking non MS person the answer is simple: yes, be greedy. Life without adventure and dreams isn't worth having. But be careful, don't forget for one minute that MS is beating at the door and any minute I could have a huge relapse and no matter what I wish for I won't be walking or working or dancing again any time soon.
So, do I plan to go to New Orleans next May? Do I delve into the garden catalogues that come in the mail. Is living with the maybe of it make any sense. Or would it be better to firmly and quietly make decisions now.
Be greedy...Is that possible or even wise in the world of MS?