Wednesday, September 30, 2009

It is a good thing that I know how to Swim

I am not in the best frame of mind these days. I don't have a specific reason to be blue--nothing extra ordinary has occurred, no major tragedies have befallen, and it is too soon after a gloriously sunny fall weekend to attribute this pervasive sadness to changes in season or weather.
I avoid writing about my depression for several reasons. One, that folks read my blog and feel an overwhelming pressure to call and try to cheer me up or fix me. For me, these writings are a deeply personal, and a strangely public baring of my soul--as if I awoke from one of those public nudity dreams, discovered it was real, and then had to delicately wade through public commentary on my deeply embarrassing public parade. For another; I want to protect those in my life from worrying about me. And, to a lesser extent, to avoid the kind of inane 'cure all' blather that seems to go hand in hand with depression: "you don't have it as bad as so and so," "you have so much to be happy about," "count your blessings," and my personal favorite, "you seem so happy." Medically and spiritually I am well cared for with this challenge. And, I don't particularly like to discuss it.

Depression goes part and parcel with MS. Attributed to both changes in the brain from the illness and the challenges that MS causes in ones life.
So, what do I need? Nothing, really. Just swimming through some deeper darker waters right now. It is a good day to turn off the phone and settle in with a good book.
And a special acknowledgment to my wonderful husband. He would like to wave a magic wand and make me all better. But, in lieu of that, at 6:30 this morning he slipped out of the house and went to the store and bought me some raisin bran. Why? Because I casually mentioned that it sounded good for breakfast and he wanted to do something nice for me. So, thank you, thank you, thank you to my best friend of 23 years who knows how to make me smile down deep in my soul. And who cheerfully goes out on a dark, rainy morning to buy a box of cereal full of those 'evil' raisins that he doesn't eat.

Wednesday, September 23, 2009

Beauty for Ashes

The Willamette Valley where I live is gently slipping into Fall with refreshingly cool mornings, warmish afternoons, and long evenings where darkness slowly covers the sky. For the past couple of days a forest fire, that is burning to the south, has left the air smoky and has settled a fine coating of ash on everything.The air is so full that it tastes like a faint memory of a campfire  
Sitting and looking out my window the horizon is painted with a fine veil of haze. The sunlight, filtered through the smoke, is sharper and at the same time, somehow easier on the eye. Each morning the sunrise spreads across the horizon in a swath of raspberry and orange sherbet, with a lemony yolk of  sun seemingly suspended in the richly colored sky. At nightfall the sky itself is painted in shades of creamsicles and lemon gumdrops swirled together with the coming darkness.

In the old testament book of Isaiah, chapter 61, has these profound words:
. . .to bestow on them a crown of beauty
instead of ashes

 The fire that is raging nearby causes devastation to the forest, and danger for the folks fighting it.  The smog has wrapped itself into the nooks and crannies of the landscape. The fire, too far away to be felt or seen, has provided a canvas for unexpected beauty.
I spent this past weekend with a couple of gal friends who I have known for a long time--one over 30 years and the other around 20. This next week I am spending with my hubbie to celebrate his 50th birthday. My son seems happy and settled at his college on the East coast. (he is where he should be, but oh, how I can miss him). The rich blessing of friends and family is my own unexpected beauty in a life that can seem insurmountably hard. I hold on, when all seems dark and dismal, waiting for the sun to rise and paint my sky in a rich palette of purples. Somehow, knowing that this beauty is just around the corner, is enough.

Friday, September 18, 2009

Living and Surviving

 It is one of my bad days--the nerve pain in my arms is overwhelming and yet, I am trying to live a so called normal life. 

These lyrics from "Set Me Free" by Casting Crowns speaks to me this morning and says better than I ever could the struggle to live in spite of this damnable disease.

It hasn't always been this way
I remember brighter days
Before the dark ones came
Stole my mind
Wrapped my soul in chains

Now I live among the dead
Fighting voices in my head
Hoping someone hears me crying in the night
And carries me away

Set me free of the chains holding me
Is anybody out there hearing me?
Set me free

Morning breaks another day
Finds me crying in the rain
All alone with my demons I am
Who is this man that comes my way?
The dark ones shriek
They scream His name
Is this the One they say will set the captives free?
Jesus, rescue me

As the God man passes by
He looks straight through my eyes
And darkness cannot hide

Do you want to be free?
Lift your chains
I hold the key
All power on Heav'n and Earth belong to me

You are free
You are free
You are free

Friday, September 11, 2009

Getting a 'Handle' on life

I am waging war against my hands and arms. I noticed, this past Tuesday morning, that something was odd about my left hand, when I typed Hppy Birthdy nn-my left hand little finger wasn't making the connection from brain to keyboard. I don't miss the Q too much, but I need tab and A and shift. Apparently, my little finger is on an MS sponsored vacation.
I've had problems with my arms—almost from the beginning nine years ago. My left pointer finger started to lag behind when I typed or tried to pick up little things like paperclips and pencils. I have a cyst on the back of my hand, so naturally I assumed it was affecting my finger. The first inkling I had that I might have a neurological problem came from the insightful hand specialst who told me that the cyst is asymptomatic and my draggy finger is a nerve system issue.
This news was quite the AHA moment for me. Many little things came together and made sense: the tripping and falling; becoming so exhausted on walks that I needed rescue; the lack of 'kick' in my left leg. We, my then young son, hubbie, and I had moved back to my home town and I started a new job. Previously I had worked two jobs, had a large garden, chased a toddler, and managed our household. Now, I could barely make it through my one sit-down job before collapsing on the sofa. 
So, over the past years, starting with my left side, MS has slowly chipped away at the functionality of my fingers, hands, wrists, and shoulder. My left shoulder and scapula hang 4" lower than the right; only occasionally can I lift my left arm; both wrists hang uselessly when I take off my braces; last spring the right thumb gave way, and now my right arm drags. If I could find Frankenstein's mad doctor, he could probably patch the two arms together to form most of one working limb.
It is impossible to list all of the things that slowly losing my arms and hands costs me. From simple tasks like brushing my teeth (I still haven't quite figured that out) to hand embroidery and gardening and cooking and and and..........
The latest uninvited guess to the MS party is neuralgic arm pain. From mid bicep to fingertip I experience constant pain. I call it debutante pain after the long white gloves the debs wore. It feels as if my arms are being squeezed in a custom poured vise that perfectly fits the contours of my arms and fingers so that every square inch experiences the relentless squeezing. The weirdest symptom are the lumps that form in my muscles that can be massaged away only to 'pop up' in another part of my arm. Mixed in are sharp stabbing pains that strike out of nowhere and can bring me out of a deep sleep. Intermittent stabbing electrical pain has to be one of the worst symptoms of MS.
Right at this moment it isn't clear who is 'winning' in this war. The past few days the pain and spasming has escalated to a point that I can barely function. I am irritable, sleep deprived, and just sick sick sick of MS.  What I would give to hop on a bike, peddle along the river, and revel in the late fall sunshine. Instead I am inside my quiet house trying to convince myself that I can handle this without banging my head against the wall.

Tuesday, September 8, 2009

Inspiring words.....

Although the world is full of suffering, it is full also of the overcoming of it.

Everything has its wonders, even darkness and silence, and I learn whatever state I am in, therein to be content

No pessimist ever discovered the secret of the stars or sailed an uncharted land, or opened a new doorway for the human spirit.

Helen Keller

Fall in Oregon is my favorite season-not too hot or too cold, as Goldilocks famously said, 'Just Right.' I sit, curled up in my comfy bed, looking up at blue sky the color of joy and try to swim my way through the murky waters of illness and depression.
It would be great to sit down with Ms. Keller and explore the challenge of living purposefully and authentically within the boundaries of blindness or, in my case, MS. I
assume that my 'shiny happy people,' (REM lyric) face is required for entry into the world--no matter what my circumstances or the cost of hiding. Not, to the outside world, necessarily a bad way to be. It is as if I am coated with a mirrored surface that reflects one image to the world and another inward.
Finding an authentic balance between the extremes of 'I am perfectly fine' with 'I am wallowing in pig muck,' isn't easy or natural. I don't want to the sad sack all the time or the chubby barbie doll clown on wheels.
I strive to be brave, wise, real, and noble. But, does that mean I can't be real? Still figuring this out. For now, I will look to words of encouragement from Helen, or Milton, and scripture.

Oh yes, you shaped me first inside, then out;
you formed me in my mother's womb.
I thank you, High God—you're breathtaking!
Body and soul, I am marvelously made!
I worship in adoration—what a creation!
You know me inside and out,
you know every bone in my body;
You know exactly how I was made, bit by bit,
how I was sculpted from nothing into something. (Psalm139)

Tuesday, September 1, 2009

Hearts, Moons, Stars, and Clovers

I woke up this morning and realized something was subtly different. Those who've known me any length of time, know that saying I am not a morning person is an understatement of epic proportions. (That I am married to someone who can whistle a merry tune at 5am is one of the great ironies of my life).

Usually waking up feels like being drug from the bottom of a well, through 6ft of murky cold water, and emerging blinking and unsure of the wheres, whys, and hows, of my present state of being. When MS is factored in, I also go through a checklist of aches, pains, symptoms, weakness, and dampness. A few second summary that confirms I still have this damnable disease and a weather forecast for the coming day--yup, right leg works (shake); still can breathe (inhale); arms are aching (!) and I am as exhausted as when I got in bed the night before.

These past weeks were rough ones. With each day bringing elevated pain levels, lack of sleep, and an allover heightening of my symptoms that I like to directly contributed to the summer heat. And is just as likely linked to the vagaries of life with MS. Lately, these early morning assessments only served to remind me that the 'same old, same old,' was the entree de jour.

I started on a new med on Saturday that was supposed to have two affects on me; reduce nerve pain and make me sleepy. Imagine my surprise and dismay when on both Saturday and Sunday nights I found myself itchingly, achingly awake for hours--my skin and nerves seeming to jingle with their own source of electricity. I anticipated the start of actually sleeping well and instead found myself doing a frenetic stationary imitation of the energizer bunny. This shaky, jittery feeling chased me into the day causing my skin to seem like its own life force.

As seems usual for me I apparently fall into a group of about 2% who take this med, and instead of feeling the blissful pull of sleep end up on a caffeiney, jet laggy buzz that is quite unpleasant.

So last night I skipped the new med, took a couple of Tylenol PM, and went to bed extra early. Due to two nights of sleeplessness and the resulting exhaustion I slept better that I can remember. I am not even sure if I woke up once. This is unheard of for me. I spend more than my share of hours in the lonely parts of the night.

So, to this morning-wake up and don't know the time and am surprised to discover it seems I slept all night. Next, the check list-leg works, breathing works, arms aching-but wait right there my pain level is down and I actually seem to have energy. The bed isn't a lead weight drawing me back into the oblivion of sleep. It feels like I opened the curtains to find the sun breaking over the horizon instead of the forcasted rain, sleet and snow.

I imagine this is what Heaven will be like; fall asleep with an expectation of the same old drudgery and wake up to an entirely different manuscript. I have a long running conversation with God where I see my self with cymbals and bells on my toes serving as a dancing girl at the gates of Heaven. "Take theses shackles off my feet so I can dance." Listen

I can't say that I am currently dancing the Charlston while juggling little white poodles. Or that feeling better will last for an hour, a day, or less but I do know I am going to enjoy it while this little rainbow of 'betterness' that greeted me this morning.