Thursday, December 24, 2009

My version of A Christmas Carol

Warning, this one may cause emotions, best not experienced on Christmas...
Such a swirl of emotions and jumble of thoughts are spinning through my mind this morning that the Merry in Christmas seems far away. I need to try to work through it all and see if I can find some way to put a brake on my nasty temperament that doesn't involve bawling.
Yesterday I said something so thoughtlessly mean to my precious son that it takes my breath away. My brain is peppered with birdshot and I can't seem to bring order to the chaos. My irritability is some mix of grief over what I can no longer do at the holidays (wrap presents, cook, see family, have enough energy to go to the Candlelight service); irritation from lack of sleep and knee-buckling nerve pain in my right eye and left thigh; MS caused depression; and a yearning for life without this illness. And, to be truly honest, the wicked echoes of a childhood trauma that is linked to this particular holiday.
Living with me right now is like knowing that there is broken glass embedded in the carpet that won't vacuum up and just when you think it is finally cleaned up, you cut your foot. I've always been the happy, outgoing, friendly one and right now, I would give just about anything to find that girl again. 
My first inclination is to think my irritability is over having to release my internal list of how things should be done, or more accurately would be happily, and busily done by me, if only, if only. Very few people in my life judge me by what I can't do. And, I am just about to the point of not caring what these few do and say. Almost.
The bigger mystery is how to let go of my desire for a certain life that is no longer mine. I know intellectually that what I have is plentiful and enough. I also know that I am not spending this holiday living on the streets or in a nursing home. So much is right here all around me and yet, the tears and longing stay overwhelming.
And, the guilt of writing such a depressing posting on the morning of Christmas eve. I have to remind myself that you all; my family, friends who make up the majority of readers for this blog afford me endless support and empathy. I will do my best to have a good cry and then focus on my 'haves,' while finding room for the ghosts of Christmases past.

Monday, December 21, 2009

My Christmas list...hurry, only 3 days left

things I wish for this Christmas:

  • that everyone take a few quiet moments to connect with the Creator and the miracle of this season. This is my favorite Christmas carol, Enjoy!

  • that all those who want for family, or medical care, or a warm place, or a warm meal would find what they need
  • that I and others would be moved to spontaneous acts of sharing and giving through this season and into the new year
  • that my pernicious illness would lay low for a few days
  • that my Vermont family would miraculously appear on Christmas morning
  • that my Alaska family would also
  • that a good friend's long-haul trucking hubbie would make a safe and timely arrival
things I want this Christmas:
  • that my boy makes it all the way home from the East coast in plenty of time to enjoy the holiday.
  • a pecan pie (I'd share, I promise) and/or white chocolate with peppermint in it; oh, a a little champagne too
  • time with friends and family
  • peace and quiet to savor the wonder of this season
things I have for Christmas:

  • more than enough to eat, a comfy warm home, and my dog snoring blissfully by my side
  • dear friends and family
  • enough health to get by

things, If Santa were real or I won the lottery, I would ask for this Christmas:
I found out today that the Honda Element can be converted. Sorry hubbie, I have a new love.....

Merry Christmas to All

Thursday, December 10, 2009

I Think I Thunk What I Thought I Thunk

Brain, Brain, What is Brain:
I've started the latest post two or three times in the past week. Thoughts skitter in my mind like raindrops against polished glass. No one thought seems to stay long enough to form into a complete topic worthy of writing about. Thought and one's mind are, on one hand, like breathing, the body has lungs, resulting in breathe. Thoughts and the processes of the brain, on the other hand, give structure and meaning to the very essence of who we are.  Brains are essential for the nuance of creating a symphony and the subtle language of writing poetry. Not to mention the humdrum of living, and doing, and being. 
Brains are also at the center of multiple sclerosis. One of the first presentations I saw on MS featured chilling slides of brain MRIs with gaping black holes staring out of the squiggly grey matter that is brain. This was the first inkling I had of what my future could be. Once, at an MS community event, a woman in her mid-forties was there with her family. Her mental function was completely gone. She laughed and babbled senselessly. The image of her haunts me to this day.
MS optimists don't like to talk about the 'ugly' side of this illness. The resulting silence leads to fear and questioning. The 'new' disease modifying drugs show efficacy when it comes to preventing 'black holes.' I do take comfort in this as I inject myself day after day for the past 10  years.
And yet, every forgotten appointment, missed deadline, and subtler mental stumble, leads me to question the MS state of my mind. When I hear folks say that it is just part of getting older, I realize that they don't understand the fear I live with or the future I face or the subtle changes that chip away at my abilities. The first one I noticed was years ago. I could hear a phone number over the phone and write it down when the call ended. Something I had always done without alot of thought. I suddenly noticed I had lost this ability. Poof, gone. Just a little chip, not consequential, but still part of who I was. 
Lately, the fear is front and center. The pace of loss seems to be increasing.
Intelligence, mood, and persona don't reflect cognition. I am still a smart cookie who is mostly upbeat and outgoing. Cognition and structuralism are defined as:

  • cognition: (noun) mental acquisition of knowledge through thought, experience, and the senses.
  • structuralism (noun) a method of interpretation and analysis of human cognition, behaviour, culture, and experience, which focuses on relationships of contrast between elements in a conceptual system.
MS cognitive loss is much more subtle and troubling than mislaying ones car keys. It is losing chunks and bites of things and living with the fear of not knowing if or when I will mislay who I am.

Tuesday, December 1, 2009

Tis the Season to be.....

     What is it about this season that seems to amplify everything in life. My pastor's monthly newsletter column captured, for me, the challenge of Merry Christmas: "Have you ever noticed that there is something about Christmas that turns up the volume of whatever we are going through? If things are good it makes them seem even better. But when things are bad it makes it feel even worse. It is amazing to me that during this time of year when we celebrate that Jesus came to give us hope, some people feel the most hopeless." (Barry Lind, pastor Northwood Christian Church)
     It is as if the Joy, Hope, and Blessing that exemplify this season are just out of reach-hiding behind an opaque barrier that I can't seem to bust through.
I spent an hour this morning talking with a woman who is fighting to not have her home repossessed. She is a single mom, works two jobs, and is drowning in medical debt. Her ex won't pay child support. She is struggling to 'hide' all of this from her kids and give them a special Christmas. But, I could see that she is barely hanging on. Thank God for the BLESSING that is having a committed spouse, a secure roof over my head, and plenty of food to eat. 
     My son came home unexpectedly for Thanksgiving. His college is on the other side of the country so during the school year, we only see him at Christmas. The gift of 10 days with him was such an unexpected treat. At times I miss the little boy who used to jump in my bed and snuggle. At the same time, it is wonderful to see him growing into such a great man. For the holiday he baked three amazing pies from scratch-carrying on the family tradition of skilled cooks. Thank God for the JOY I find in my son, my family and my friends.
    I don't know about HOPE right now. It seems especially far away. The consistent presence of God in my life is my lifeline. I find myself getting bogged down in the seemingly insurmountable obstacles of the past few weeks: a new wheelchair lift, a new heating system; and other costs both material and spiritual that whirl around endlessly in my head. I am struggling with depression and nerve pain. Somewhere in there is hope; I just have to find it. I choose to thank God for the whisper of hope that sustains me.
     The answer to this might just be found in the title for this post: Tis the Season to BE. And that is enough; not be merry, just be. Every moment that my heart beats and my lungs draw air is a gift. Things like playing cribbage with my Dad and warm slippers and a snoring dog are simple pleasures that give meaning to my days. I renew my commitment to live the life I have and to hold to the things that make life livable.

Friday, November 20, 2009

Finding the words on Jon Stewart

I've tossed around ideas for a post about Thankfulness. Not the easiest concept to put into words with originality or sincerity. A top 10 list would obviously include family, friends, a roof, breakfast; subtler things like breath, and cellular structure, and the wonder of new born life are infinitely more complex and seem to defy definition. So, at 6:30am, with drenching rain outside my window, a bowl of oatmeal in my lap, and the Jon Stewart show playing on my laptop: out of nowhere comes an unexpected gift. For those who don't watch his show, it is usually 30 minutes of jokes and commentary on modern American life. A welcome respite, but not the expected source for tears of gratitude and, finally, a way to express that thankfulness and gratitude are choices that we make.
Today, on the show, his guests were two guys who form the musical group Jack's Mannequin. The lead singer survived leukemia and has just released an album that he wrote during his struggle.

 My thanksgiving thoughts are eloquently and powerfully shared in these two songs. Below are the links to the videos on Youtube. Turn on your speakers and take a few minutes to listen. I still have tears in my eyes.

Saturday, November 14, 2009

Of life before and after the twins...

After my previous post where I said, " I sat down to write this more out of obligation, " I received an email from a dear friend who I've known for over 20 years. She asked me to explain who and what I feel obligated to. This question is a fair one. I will do my best to explain something that I don't necessarily have the words for. Obligation and Guilt are inter related and the cojoined evil twin emotions of Envy and Jealousy, (that I wrote about previously.)
In some twisted way I would rather have taken a bad dive into a shallow swimming pool and come out a quad on a ventilator. I would have a fixed point that I could refer to as when everything changed. A fixed event in time that could serve as the moment my life detoured. And, from that fixed moment, have a defined reality and choose to build a life from there....or not. I would have to decide to live with the shattered dreams and somehow accept this new body, this new way of being.
MS is a different kettle of fish. My hand therapist and I were discussing my oddball hand tremors and arm jerks. I told her that my neurologist asked me why my hands were doing this--as if I were the expert. My hand OT said that every MS patient she sees has a different set of symptoms, a different level of disability, and, I infer, a different experience of life with MS. This illness doesn't hold to a recognizable set of milestones. 'yes, Janine, we're sorry to say you have MS and within 5-months this will happen, and we can use this treatment, and odds are your life will be like this.' I live in the land of uncertain, unknown, and undefined.
How then do Obligation and Guilt have a ticket to the dance? Envy is my longing for something I have lost; Jealousy is a dark heartbeat that desires what someone else has; Obligation is my desire to be the wife, mother, daughter, friend that I long to be and can no longer rely on to do her part; and guilt is my grief and sadness over what MS has stolen from me.
No one in my circle wants to flat out say it. So I will. This disease has fundamentally altered all of our shared dreams and expectations. Most of my circle knew me 'before' and that life long intimacy leads to certain expectations. I am sure my parents and brother never thought that this MS-centric reality is where we would be back when I was a little girl tramping around on back country trails. Or, when my hubbie and I first danced late into the night 23 years ago,  that we wouldn't still be dancing now.
This wicked twist of fate spins into Obligation and Guilt. Obligation (and desire) to be able to live what should have been my life--Be the wife, mother, daughter, friend that I wanted to be. And, Guilt for the altered shared reality with those whom I love. It isn't easy to have MS nor is it easy to share the life of someone who does. 
And so, all knotted up together in a giant rubber band ball are the complex emotions of envy, jealousy, obligation, and guilt. For who I long to be, and am slowly, steadily, and relentlessly, losing.
I am deeply grateful to all of you who are willing to be a part of this journey. I don't think I would make it without the amazing people who have chosen to have MS with me. Thank You! 

Thursday, November 12, 2009

Announcing New MS Geography Club

I sat down to write this more out of obligation than a burning desire to share any news. Maybe I should found a new MS organization called something like the Flat Earth Association for MS (FEAMS). Have I finally gone over the edge and lost my mind? Probably. What I mean is MS is a great leveler--not in terms of something that puts people at an equal standing, but more a steady, slow-moving bull-dozer that is relentlessly flattening my world.

I've been concerned that my posts are too depressing lately. I am selfishly writing this as a creative outlet for me to explore and explain my world. If I censor my words to appear as one of the 'shiny happy people' I lose my authentic voice. These past few weeks have been grim and so has my outlook. So all I can say is that those of you who read my blog will have to hang in there with me as I work my way through this. 

As the founder and only card carrying member of FEAMS, I embrace the belief that the earth is flat and, yes, I may have gone over the edge. I just don't seem to be able to channel Columbus's energy and drive to sail off into the unknown and "boldly go." I've been fighting this illness, the medical establishment, and loss after loss for 10+-years and I am tired.

I think the next phase for me is to start to accept and embrace where I am now. Take the upcoming holiday season, for example.  I let go of any Martha Stewart-esque fantasy long ago. This year I have finally found the voice to say that I just can't do it any more. The 'it' being the last few things I still clung too: mostly logistical support for my already over-committed hubbie. In our 23 year partnership I have always joyfully played the role of social secretary and general cheerleader. This year, I've asked my family to coordinate all details with him. This is the final letting go of a role I no longer can play. Sigh.....

Wednesday, November 4, 2009

Inspiration from the Smallest of People

My world is fairly ordered and routine. Saturday afternoon my niece and her just turned, three-year old son came to visit and ended up spending the night. My own son is almost 19 and is away at college on the east coast, so sharing our quiet house with this young boy was a real eye opener. Now, if I could just learn to live my own life like he lives his.
He throws himself full throttle into the simpleness of his life. It isn't like he is out running a corporation or balancing a checkbook. Yet, the pure pleasure he receives from driving a miniature bobcat bulldozer up and down my leg and his peals of laughter as he sends it crashing off my hip, show his zest for life. This reminds me that I can experience pleasure in the everyday sameness and minutiae that are hallmarks of a life spent at home. When was the last time I was truly enthralled and finding joy in some simple aspect of my day? 
When his 'apple cart' tipped over, everyone knew he was upset. But, the storm of crying and yelling and carrying on was quickly over. He is like a summer day in Oregon, sunny then rain with an occasional thunderstorm. His ability to openly express sadness, anger, and pain and then move on was admirable. I often stew and fuss and carry on over the smallest upsets in life-a rude clerk on the phone; a stubbed toe; or medical bill. Maybe I should be throwing one big tantrum and then let it go. 
From the day he was born his mom and family have met his every need. You can see how well cared for he is in the confidence he has that loving hands will always be there. He is at the age of starting to separate from his mom and explore outside of the baby comfort zone. I would like to bathe in that same warm sea of confidently knowing that my needs will be met. To turn off the worrying litany that runs like a marquee banner through my mind. In my day to day life I am fortunate to have many people in my world--so many people who love and care for me. It is spiritually that I need to be reminded that God is present and He cares for me more than I can know.
He played hard all afternoon. Skipping his nap due to all the excitement of exploring a new place, new people, a patient dog, and to top it off--his first trick or treating. We went for a short walk and he was entranced with finding out that acorns have hats. Every mushroom we encountered he mashed with glee. He delighted in the giant blow up costumed Winnie the Pooh around the corner. All of this adventure and excitement led to one tired and grumpy boy and one frazzled mom. And then, it got quiet, his eyes drooped, and just like that he was asleep-sitting up and leaning against the couch pillow with his arms crossed behind his head. Looking more like a movie star sunning beside a pool than the cranky little man he was a few moments before. I wish I could sleep like that. Just fold up my troubles and slide into rest.

I remember reading, when my son was a toddler, that a top-notch triathlete tried to follow a 3-yr old throughout the day--walk, bend, sit, sleep at the same pace--and the athlete couldn't do it. My great-nephew loved to climb on my wheelchair and leap off it onto the couch with great abandon. He seemed to effortlessly understand my limitations. I was laying down at one point and he quietly came into the room and stood at the end of my bed. I asked him what he was up to and he held up his arms and said, "I came to kiss you." And he did. 
Having my great nephew here certainly stirred things up. Our house seems a little too empty since he left. I hope he and his mom come back soon.

Wednesday, October 28, 2009

Fear and Losing It at the Library

My small town has a truly amazing library for a city of its relatively small size. When I lived nearby for about eight years, I was in and out of here all the time. Sitting here this afternoon, killing time until a doctor appointment, I am struck at the parallel between the progression of my illness and the decreasing frequency that I have visited what was once a favorite place.

Today, I came in with my laptop and was playing scrabble against its all knowing electronic brain until a few moments ago. I am sitting on one of the 'comfy' chairs (for whose body?) near an electrical outlet. To get into the chair I parked my wheelchair sideways and slid onto the seat. Now, I have come to realize that I am not sure how I will get back into my chair. The seat cushion is only about 3" higher, but I am extra weak due to my recent flu bug (hopefully, if I'm not home tonight, someone who reads this blog will know where to find me). 

The library is a constant reminder of things I can no longer do: reach above the third shelf for books or magazines making it darn near impossible to browse; open the three doors leading in to the building; pick up books without dropping them; or remember the dewey decimal number for the book I am searching for. 

I have to head to my appointment soon; the library's bathroom isn't accessible because of a heavy oak door and I don't trust my bladder much longer. This is the first time I have been out on my own for weeks. With the challenges of accessibility to buildings and bathrooms, the mental fogs I can experience, and the waves of fatigue that strike without warning; I rarely leave home alone. Quite the reality for a 44 year old woman. 

I used to pass this library on my way to and from work; I used to be able to open doors; I used to know my way around the bus system; I used to know how to navigate without thought. Now, I can become lost walking my dog in my neighborhood. And the result of all this change is, I rarely visit the library. 

Saturday, October 24, 2009

My Gobsmacked Week

In the Disney version of Sleeping Beauty, the princess is imprisoned in a castle consumed by a thorny hedge. She sleeps blissfully unaware that her world has become a prison. No matter how diligent I am, my own garden is steadily being overrun with the insidious spread of choking vines. Every inch, every crook and crevice is slowly being invaded by the viny tendrils of multiple sclerosis. 

This past week was a series of gobsmacked* times where I had no choice but to confront this damnable illness and how much it impacts my life. When I stay safely in the protective bubble of my house, where everything is carefully thought out to meet my physical needs, I can almost pretend that this limited life of mine is normal. Particularly if I carefully turn the lights off in the room where I store my preMS dreams and desires and accept as satisfactory a life lived in a protective bubble.

Last Saturday should have been a day of fun adventure. My hubbie planned for weeks for a Fall outing on a historic riverboat. He called ahead and was assured that the boat was accessible. In the kind of soaking rain that only a cold fall day in Oregon can produce, we ventured an hour north to the park and made our way to the boat landing. The boat may have been accessible, but the gangplank that descended at a 45 degree angle from the high riverbank down to the river, certainly wasn't. Just like that our fun adventure was over. It isn't logical or correct, but I felt like a dead mouse in a swimming pool. The couple we are with and my husband put on brave faces as we try to come up with another plan. But really, it is my chair, this illness that has ruined our day. And, who I am and MS are so intertwined that I can't untangle them.

Just a few years ago I had finally found my career niche--fascinating work, great coworkers, and a growing sense of place in my professional field.  After a year of working while undergoing Novantrone chemo therapy and seeing little therapeutic improvement and then feeling my grip slowly slipping on the complex world of grant development and management, I had to face that I could no longer work. I loved my job and still have intense dreams about it. Just when I think I have moved past mourning for this profound loss, something happens to push me right back into paralyzing sadness. On Tuesday I received emails from two women who I used to work with, one filled with chatty news of cross country travels to conferences and the other on the busy world of planned retirement. While I am thrilled to hear from these friends, their words unintentionally bring me to tears. Days filled with naps, reading, symptom management, medical bills, and peeing the dog in no way measure up to what I have lost.

To make up for the lost boat adventure, the couple we went with invited us to spend this weekend with them at their vacation cabin. Normally, we can't afford weekend getaways, so their invitation was especially welcome. And, what could go wrong, after all I was simply trading one indoor environment for another. Last Sunday night I came down with a stomach virus. After a mostly sleepless night I woke to my hubbie as sick as I was. We settled in for a day of shared misery. By nightfall he was well on his way to recovery while I seemed to just feel worse. By Wednesday, with no relief in sight, we had to consider that a weekend trip was unlikely. Thursday morning, after four days of stomach pain, a low grade fever, and the increasing weakness on my left side, it was abundantly clear that our planned getaway was not going to happen. MS causes everyday illness to hit me twice as hard and exaggerates any of my disease related symptoms.   

One of my favorite books is Web of the Chosen by Jack Chalker. In it, a pilot crash lands on an alien planet, at first he is bewildered by the strangeness of his new world. Slowly he is literally transformed into one of the alien inhabitants to the point that what was impossibly foreign becomes all he has ever known. I don't want to lose all I was and the dreams and plans that unfolded from my previous life, but maybe, if it made this MS defined life a little easier to bear, it wouldn't be so bad.

*It means “utterly astonished, astounded”. It’s much stronger than just being surprised; it’s used for something that leaves you speechless, or otherwise stops you dead in your tracks.

Wednesday, October 21, 2009

I am sick, sick, sick & it isn't MS


I am down with a stomach virus and feeling rather 'icky.' Please keep me in your thoughts and prayers. My hubbie & I are set for a weekend away this Friday--but, unless I am much improved, I won't be going.

I'll post as soon as I can,


Monday, October 12, 2009

It's o.k., I don't mind, No really...

Envy is an odd thing to live with and when it dances with Jealousy the music of my life can take a bitter turn. MS chips away at my nervous system and bits of me stop working, become weaker, and, without warning, add another odd symptom to my list of complaints. And then, as in the recent 'loss' of my left little finger, the entire mourning process of MS loss begins again. How can I accommodate this? Is it worth a trip to the neuro? Is it permanent and how pervasive? Most importantly, what will my life be like now with this latest loss. Can I still open the toothpaste tube or hold my hairbrush or zip my jacket. The little finger does much more than I realized. It isn't completely weak--I can move it and at times it is stronger than at others. 
So where do E&J fit in to the distracting, discouraging, and insidious weakening of a pinkie? It is like the old groaner, "Doc, will I be able to play the piano? She responds, Yes, if all goes well." You reply, Great, I couldn't before"  So one little digit won't cost me the ability to play a 12-string guitar or knit intricate sweaters. The envy and jealousy I feel isn't about a particular ability someone has that I once did; although I would give just about anything to have my career back or glide off on a bicycle or tend a vegetable garden. OK, so maybe there is envy and jealousy here. When I hear someone kavetch about their busy schedule with work and kids and church and and and.... I confess to dancing a few laps around the ballroom with these two emotions.
My experience with these evil twins is subtle and insidious, and most importantly, steps on the path I take to isolation and loneliness. How can 'normal' person understand living life with the relentless assault of MS loss. 
As a result I put on my 'happy happy joy' face and tell you it isn't so bad. I focus on the practical losses and tidy up my emotions. MS has its own language and is almost impossible to translate into english. I can show you my droopy finger or draggy left foot or tell you why I use a wheelchair. But, I can never adequately express the deeper emotional impact or the internal world of life the MonSter. 
What is a finger worth, I have nine more. No, actually, my pointer finger went south years ago, and my right thumb requires a hard plastic brace to work at all. So, that leaves me with seven, more or less. Will another start to fail today-this minute, or tomorrow? And, what about my toes, my eyes, and on and on. Every inch of me is run by a complex system of nerves and as I understand it, can be affected at any time. 
The impossible task is to live with knowing that any and everything could be impacted at any time. And somehow build a life of safety and security on top of this unreliable foundation. For me, the deeper foundation is the surety of God in my life. Without that, I don't know how I would live with the envy for and jealousy of the life I no longer live.

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.

Wednesday, August 19, 2009

Update on an improving Wednesday Morning

Don't have it in me for much, but knowing that many folks are keeping an eye on me, thought I should do a quick update on me and my nasty head pain:

To Whit
  • I had two nerve block injections Tuesday morning--one in the back of my head and one in my neck. Ouch
  • I am slowly feeling relief, in that, so far today I haven't actively considered banging my head against the wall .
  • I only remember waking up twice last night-so have had a little more sleep.
  • My sound sensitivity is ratcheted back a few notches and I have my blinds open a crack, cause my eyes aren't as squeamish about light.
This morning while reading James 5 I read verses 9 and 10, they reminded me to hang in there.

Take the old prophets as your mentors. They put up with anything, went through everything, and never once quit, all the time honoring God. What a gift life is to those who stay the course! You've heard, of course, of Job's staying power, and you know how God brought it all together for him at the end. That's because God cares, cares right down to the last detail.

Monday, August 17, 2009

Ranting on a Bad Monday Morning

Another Reason to Detest our Medical System

I am in pain-severe, can't sleep, can't function kind of pain, all weekend I have hung in there waiting for my pain doctor's office to open so I could be helped.

You see, I have occipital neuralgia, which runs from the back to the front of the right side of my head. It is the only MS pain I have experienced that I can have immediate relief from. The treatment is a cortizone nerve block shot into the base of the back of my head-almost worse than the pain, but worth it if this insane pain can be stopped. About two months ago, when this started, I saw my pain doc and he gave me the shot and whammo--pain almost completely gone. He told me it was sometimes a temporary fix and if the pain came back to call their office and I could have another shot (no big deal, right?)


So, on Saturday the pain in my head came soaring back and all weekend I counted down the hours until 8am on Monday. At 8:05 I left a message with his medical assistant. At 9am a scheduler called back and offered me an appointment 3-weeks from now. I explained my situation in more detail--told her that in the years I've been a patient I have never asked for immediate help. She informed me that they weren't an 'urgent response' practice and that was the best she could do was Aug. 28th. Finally, she begrudgingly agreed to let me speak to the assistant. So, the assistant calls me and informs me again that they aren't set up to respond to emergency increases in pain (yes, you read that correctly) but she can let me see the nurse practitioner -- tomorrow.

I mention that I had a bad reaction to the first shot and that Dr. Kosek had to sit with me and give me oxygen. She says she sees this in my chart notes---but the earliest I could see him is sometime in the distant future. I ask her about the next Friday or 3-week openings--these are also with the nurse practitioner.

Simply put, it is seemingly impossible for me to see the doctor. This type of shot isn't available at my general practitioner or urgent care clinics or ERs. Why didn't my doctor explain that it isn't his practice's habit to respond to urgent pain needs. I wouldn't have spent the last 48 hours waiting for his doors to open.

Good to know, but no help to me today. I hope that tomorrow--24 more hours of intense pain from now--the NP will be able to help me. Not sure what I am going to do next time.

Thursday, August 13, 2009

all the world's a stage..........

When I was a girl, long before the zoo figured out how to properly house their residents, the exhibit for bears sat prominently near the entrance. The enclosure was made of barren concrete and the caged bear paced endlessly. Back and forth, seeming to stare longingly or hungrily at the crowds gathered outside the bars. The bear's thoughts were a mystery to the visitors and each one saw the bear in a different light. Something about the restless pacing made me achingly sad. Others may have seen only a fierce animal properly contained or maybe they gave no thought at all to the endless movement of the bear on his concrete stage.

An inherent aloneness exists in difference and 'other.' I learned this all too well nine years ago when I started using an electric wheelchair. I might as well have a blinking neon arrow with 'look at the gimp' flashing over my head, following me wherever I go. When I was a 'ped' (as in pedestrian) I was unaware of the luxury of blending in to the world of legs. If someone glanced at me on campus or the bus I was just another face carried along by feet. Once the wheelchair became a part of me I entered into the intense scrutiny of difference. People stare open mouthed as I go by.

My job is apparently to assume their good intentions, politely tolerate their probing questions, their inquisitive children, and their intrusions and interruptions. I often enjoy hanging out at my neighborhood coffee shop. I sit in one of their comfy chairs, reading and getting up occasionally to add more cream to my coffee, give in to the temptation of a brownie, or use the little girl's room. Ordinary, normal behaviour, not worth noticing, unless you use a wheelchair. Just the other day two women and a little girl were sitting across the room from me. Every time I tranferred and drove across the room, the girl would point and yell, "look, look at the lady." Her mother hurriedly shushed her and then on my way back to the chair, the girl did it again and then again. I did my best to ignore her, but it is unsettling at best and down right annoying to be under such intrusive scrutiny. Finally, the mother whispered to the girl and sent her over to talk to me. Unbidden and, churlishly, I will say unwelcome, the girl came over and began to ask questions, 'what is wrong with you?' and 'why do you sit in that?' I pushed aside my annoyance and dealt pleasantly with the girl, but really, I am just a person who happens to use wheels instead of feet.

MS is not easily defined. I know a lady who has had it for over 20 years and she has no outward signs. On the other extreme my trembling hands, jerking arms, braces, dark glasses not to mention the chair instantly mark me as afflicted. You know there is something wrong with me, but what exactly? Curiousity is difficult to contain. Then, when you get to know me better, enter into my 'village' and interact with me weekly at church or in the neighborhood, you make up your own story based on physical clues. She must be paralyzed, but quad or para? Why does she have those braces on her arms? What should I say to her?

Friends and family do their best to 'read' the clues; a yawn, or a grimace, or my answers to their questions and create their own story about the state of my MS. When they ask how I am; I simply don't know how to answer. Are they asking how I am physically compared to five minutes ago, last year, or back when I only dealt with the ordinariness of the every day. Do they want a detailed run down or will their eyes glaze over. Do they recognize that certain symptoms are my constant companions.

Recently I tried to use statistics to track 'how I am' in an effort to better answer the question. My husband is a statistician and he helped me write formulas and enter data into a spreadsheet. My plan was to assign, on a one to ten scale, a daily record of my fatigue, pain, weakness, and other symptoms. Quickly our efforts bogged down and eventually came to a stand still when I realized my base line, that is my -0- is impossible to define. Is -0- me on my best day right now, some point in my past, or is -0- how a healthy body should work. It is like asking a woman to define pain before and after childbirth. She might have thought breaking her arm was the worst pain ever until that 10lb baby makes an entrance. From that time on she has to quantify pain in a entirely new way.

This public isolation
, the reality of living with a disease that is on prominent display, creates a life that is both open to endless scrutiny and shrouded by an impenetrable fog. As I write this the pain in my arms is soaring and I find an occasional tear trickling down my face. But, if you looked at me with my headphones, tucked in bed, you would never know. And, if I tried to explain, do I have the words for you to truly understand?

Wednesday, August 12, 2009

Flat and Opaque.....

Having come through a rough patch and still trudging along on what is a seemingly endless path of bad and slightly better MS days I am feeling rather flat. As I heard in the first Lord of the Rings movie recently, 'like too little butter spread over too much bread."
I am never quite sure how to get a handle on my mood when I am feeling this ground down. I am like a sailing ship caught in the doldrums. It isn't a matter of claiming a better attitude or pulling myself up by my own bootstraps.Or sleeping more or flipping some magical switch. I simply don't have the physical reserves or the mental energy to do much of anything. The odd thing is I am not bored, just flat.
I love words and the power of their meaning-to that end I am one of those odd people who reads the dictionary for enjoyment. I find them particularly useful for putting into word the most difficult of concepts.
In the Oxford Dictionary the definition of doldrums is:
1 a state of stagnation or depression. 2 a region of the Atlantic Ocean with calms, sudden storms, and light unpredictable winds.
And Flat as an adjective is:
1 having a level and even surface. 2 not sloping. 3 with a level surface and little height or depth: a flat cap. 4 (of shoes) without high heels. 5 lacking vitality or interest: a flat voice. 6 (of a sparkling drink) having lost its effervescence. 7 (of something kept inflated) having lost some or all of its air. 8 Brit. (of a battery) having exhausted its charge. 9 (of a fee, charge, or price) unvarying; fixed. (of a negative statement) definite and firm: a flat denial. (of musical sound) below true or normal pitch.
The words in bold readily paint a picture of how my world feels these days.

Thursday, August 6, 2009

Homage to Star Trek and Carpeting

I am often asked how I stay a person of faith given the difficult path my life has taken. As if calling myself a Christian guarantees a Willy Wonka golden ticket into a magical life of white picket fences, mini vans, and Partridge family living. Were this true; folks would be lining up at the door of every church in the nation. These lyrics (from I Believe, by Barlow Girl) speak to the profound challenge of having faith through all of life:
I believe in the sun even when it's not shining
I believe in love even when I don't feel it
And I believe in God even when He is silent
And I, I believe
(song) (complete lyrics)

Having faith is what carries me through weeks like this past one where I suddenly lost my voice. I cling to a silver thread that winds its way through my every day and on into eternity. Humans see suffering through the lens of their own life time-my years, my house, my job, my broken heart.
My own faith is deeply influenced by too many hours of watching Star Trek, work with me here, where time is fluid and the actions of one person resonate throughout the 'space time continuum' and impact the course of human existence for generations. If I see my own life as part of an unimaginably intricate and immense carpet being woven by a master hand--what I experience in my own lifetime becomes part of something much greater and grander. I may never see how God uses the circumstances of my life, but I do know that if I weren't here that priceless carpet would have a small flaw. The reverberations of my life will carry forward in ways I will never know.
It is never my intention to preach or judge. My words here are simply to answer the question of why I believe, even when He is silent.

Thursday, July 30, 2009

Facing the Fear of Silence

I wish I could say that I had had an intense, transforming spiritual awakening over these past voiceless days: like Moses & the tablets or Skywalker with Yoda. That speechlessness created a new state of awareness or lifted me up to a higher plane or better state of being. MS may be character shaping; but so far it hasn't turned me into a saint.
It happened suddenly--I was sitting with friends in church--happily singing praise songs to God in my decidedly unpraiseworthy voice when my throat constricted--at first I gasped for air and then coughed and choked. This passed, I drank a sip of water and started to sing again---instantly the same thing happened. I gave up on singing and sat for a few minutes. Everyone around me, my church family who keep a careful watch, were aware that I had two coughing/choking fits. But now, in the middle of service, wasn't the time for me to panic. I could still breath--I just couldn't seem to talk.
Now, four days later, the constriction seems to have eased up a bit. I can whisper in chunks of words. What I hope is a first step towards swallowing, talking, and singing again. I was diagnosed with vocal chord (laryngeal) spasms about 5 years ago The doctor said there was no known cure and I needed to be aware that my throat could suddenly close up so that I couldn't breathe. This tidbit of news followed after me like a shadow from the knife edge of a guillitine blade. I have little episodes every now and then where I cough so hard while choking that I pee my pants. I even throw up when it is intense. But, Sunday's onset brought a completely new reality into my life.
For those of you who know me, my love of talking is central to who I am. How do you boss your son around, or answer the phone, or yell at the dog, or chat with a girlfirend when your vocal chords rebel at the slightest whisper. My son and the dog were probably greatly relieved--for me, my already small enclave on the Lost Island of Secondary Progressive MS shrank noticeably. At one time I managed a research center with over 50 people in my immediate area and hundreds more across the campus as well as family, friends, and the people I chatted with on the bus, at the beauty parlor, and around town. Social interaction gave meaning to my life. When this illness finally eroded my physical abilities to the point that I had to give up the amazing job, active volunteering, driving, and bopping around town; my world reduced to the four walls of my mobile home.
I am learning, the process of acceptance is endless, to find purpose and meaning on this much smaller stage. This blog, the phone, and visitors keep me sane. With the sudden impact of a sonic boom, I lost my voice. How will I eat the sour milk that was poured on my raisin bran. With hands that don't work well, legs that are weak, and deep fatigue--this cloaking silence feels like too much.
Thursday comes with a whisper. I can swallow my pills without chopping or crushing them first. The silence is no where near over-I can only whisper a little and, without warning, my throat will close up and cut off my words and send me into another coughing/choking bender.
The insidious fear monger murmuring in the back of my mind that I might never talk again, I might never share my off-key voice with God, I might never swallow food without a thought. So many unknowns.

Sunday, July 26, 2009

Can I Stand One More Thing

I play a mental game, could I live with this....., then insert one of the less pleasant symptoms of MS. As I steadily inch downhill, everyday is spent in the unpredictable amusement park of multiple sclerosis. I am like the person staring at the Matterhorn Ride and trembling at the thought of climbing on that little car. This morning, it seems that I am forced into riding along--whether I wanted to or not.
The slow, subtle decline in percentage increments such as the diminishing sensitivity in the bottom of my left foot, is easy to ignore. Much like termites--MS nibbles away, behind the scenes, and I don't see the damage until the floor falls into the basement.
I have laryngeal spasm, that causes me to cough, choke, and drool (Oh, Joy). The severity comes and goes, but mostly I am able to ignore it. Everyone coughs, chokes, and (admit it) drools on occasion. Today is a different story--whenever I talk or swallow an intense fit of coughing follows. My throat feels tight and closed off. And, to add to the indignity, my weak bladder gives out and I pee. Also, my upper torso feels like it is slowly being squeezed in a vise. (apparently, this is known as the MS Hug). I wonder if I could live like this, silence, coughing, choking, peeing and being hugged by Big Foot. Simply put, this sucks!
What to do--should I go to the ER. What if my throat completely closes up? Doctors don't seem capable of helping me. A pulmonologist told me this isn't treatable, but then, nothing with MS is. Alleviated maybe, but not cured. A visit to the ER only results in more medical bills and a reminder that my symptoms are mostly untreatable.
I've read that Botox injections to the affected parts of my throat can help. First, of course would be expensive, icky tests like Barium Swallow, and Swallowing studies--then, if the doctors see anything, the Botox is inserted into my larnyx directly through the front of my neck. And, it isn't considering very effective. Sometimes choice in MS is no choice at all.
A friend said that even when you find yourself standing in the ashes, God is there. I cling to that on these bad days. It is easy to be a Christian on the day you win the lottery, but immeasurably harder when the losses pile up. I have on my sound cancelling headphones and am listening to Praise music. Right now, that is all I can do while I wait and see how bad these symptoms are going to become.

Friday, July 24, 2009

How do you Plan for Moments of Whimsy

So, it is a beautiful cool morning with the sun peaking over the mountains. I went outside to take a gander at my flowers and move the sprinkler. It was so lovely that before I knew it I was a pulling a few weeds from the soaked earth of the bed that was just watered. Usually I am not strong enough to pull them, but with the soil saturated, quite a few came up easily. My garden beds are lined with rounded wooden edges and the lawn grows right up against them.

Without thought I moved my wheelchair's controller and discovered I was stuck. No problem-this happens. I shifted into the high torque gear and tried to move. Nothing, but the whirring of wheels. Looking down I discovered that my right front wheel had driven over the wooden edge and was now buried up to the frame of the chair and turned at right angle to the barrier. To add to my predicament the grass was wet and my strong back wheels were spinning uselessly on the slick surface. Now I am seriously stuck.

No problem, my son is in the house and my neighbors are usually around. I reached for the cell phone to call him, after all, I always carry it in my wheelchair's pocket. No Phone. OK, neighbors then. I scan down either side of the street. No one is out and about. I know it is futile to keep trying to rock myself free--a 250 pound wheel chair with one wheel buried in the mud, one slightly in the air, and the other two churning on wet grass all being weighted down by my rubenesque frame aren't going anywhere under their own power. What to do.

So, I sat there for the next 10 minutes, but it felt like an hour. One can't crawl or scoot with only one working limb. How long before my 18-yr old son, who when I last saw him was settled in his room, playing his favorite video game, talking to his girlfriend on the phone, and blasting music, would notice I was missing?
Finally, I saw a car driving slowly down the street. I waved frantically and they stopped. Thankfully, it was a nice couple from around the neighborhood; not a scary character from Deliverance. The man knocked on my front door-no response from son. Then, they tried unsuccessfully to release me. They offered to drive home and call my husband at work. It suddenly occurred to me that my son's bedroom could be reached. Success, my son came out, lifted me upright from the chair, they pulled my chair out of the mud, and I was free.

Such a relief. And a scare. And a reminder of how vulnerable I am when I am out and about. I can't pull doors open, as the recent 20 minutes I spent in the Target restroom shows. With my cognitive 'hiccups' I can get lost walking the dog in my own neighborhood. With an unpredictable bladder and colon, I have to overcome inaccessible bathrooms. I no longer ride the city bus or 'walk' to the neighborhood coffee shop. More obstacles exist; from my MS symptoms to physical barriers, than I any longer have the strength to overcome.

This morning's scare is a reminder of how quickly I can be in trouble. The shoulds are running through my brain; I should have had my phone, I should have told my son I was going outside, I should have known better than to try to pull weeds or drive on wet grass. But, I was only going out to move a sprinkler a few feet and didn't expect the lure of flowers, freshly watered in the early morning morning sun, and the delight of discovering that a few weeds were loose enough to pull.

All is well now--even though my arms will hurt more today and my wheels are caked with mud. Nowadays, I guess I have to plan for everything--even to be spontaneous.

Monday, July 20, 2009

What do Cauliflower & Gum Have in Common?

or Someone Left My Brain Out in the Sun & it Melted

This won't be a long post, cause I just don't have it in me. I confess, I did too much and now I am paying for it. My brain feels like a head of cauliflower left in the steamer too long and my body feels like it is a wad of gum, left on the baking sidewalk and slowly melting into a pool of goo. I dislike summer--it has come to that. Outside my artificially cooled island, beckons the sun, blue skies, trips to the park or grocery store--all of the living that happens in Oregon during these few weeks of summer. I miss swimming, and gardening, and biking.

With MS, heat is a strict task master. The warmer my body temp the weaker I become and I don't have any way to predict or control to what extent I will be affected. Today I can transfer to the toilet, so far, but will my right leg give out the next time? My left leg gave up long ago. Heat also causes mental confusion. This morning my son took the lead on our weekly grocery store trip and when we got to the car to load groceries he asked me for the keys. I honestly had no idea what he was asking me for--my mind was a complete blank. Clue in brain-we are by the car, it has doors, they need to be unlocked, and I always carry the keys. But nothing, not one sliver of a clue to what he was saying. I just sat there. It is so utterly frustrating. Finally he reached into my bag and grabbed them. Then I got it--keys, car, duh! The off button gets switched and I can't turn it back on.

In many ways, on these hot summer days, my home becomes a safety zone and a prison. I didn't fully understand how much heat affected me until I moved into central air conditioning two years ago. Looking back, pre AC, I usually had a major exacerbation every summer-most of the months of July and August. Now, if I stay indoors the overheating cycle only happens when I give in to the lure of the summer sun or to living my life (groceries, church, etc.).

Summer, bah humbug--give me rain and cool grey skies anytime!

Saturday, July 11, 2009

One of those Clarifying Moments

or, always heed wise council

I live in the world of now-right in my face, every day. It is easy to spend my time looking back at was or ahead at what might have been. Things that I enjoyed; cooking, dancing, hiking or that I once did with ease that now are neglected from the stack of unwashed dishes to the unfinished craft project or things I thought would always be my future; a Master's Degree, summers in my vegetable garden, adventure travel.
So, last week on one of my dark days when the pain was winning, my insurance denied me visits with my counselor (these posts may just get nuttier now that I won't have him around to keep me sane), and I was just deeply bored with day after day at home; my dad stopped by for one of his regular 'housecalls.' I was too sick to be out of bed, so he had to climb over magazines and books on the floor, a big pile of dirty laundry, and other assorted junk so he could sit and visit with me. Several times I apologized for the mess and finally he looked at me and said;
"Worry about what's in here (pointing at his chest), not what is out here (pointing at my messy room)."

Such wise words--they brought a quick halt to my internal tape of guilt, embarrassment, and regret over how my house could be or should be. My dad was here to spend time with his daughter--not judge the state of my room or my perceived 'failings.' And, wasting time over some sort of never ending tape loop of old movies and future musing is simply that, a waste of my precious time.
The eleventh chapter of Hebrews is the 'live by faith' chapter, as testified to by a listing of famous folks from the Old Testament. I've heard sermons on this famous chapter over the years that focused on the great things each of these people did for God. Thinking about it now, I realize that these talks reflect a philosophy of measuring ones life by what one accomplishes. This past week the thirteenth verse popped out at me, saying that none of the people were given what they were promised by God-the measure of their lives came from eternity. In a sense the message in Hebrews 11:13 is the same as what my Dad told me--the internal world instead of the external--not what I have done, should do, might do, or want to do--How am I living my life today-do I have joy-do I have faith-do I focus on the many wonderful things that are in my life today and eternally or do I waste time living with bitterness and regret.
Wise words from my Dad and my favorite book--now it is up to me to live them.

Tuesday, July 7, 2009

Random Thoughts on a Tuesday Morning

My Brain is a Word Salad
Too many thoughts bouncing around in my brain to settle on one to write about. Not sure if it is the affect on my brain of the flare up I am dealing with or just that many small thoughts have taken up residence in my head.
Update on last post: My trip north in our short-lived heat wave was a success from an MS perspective. By that, I mean, the joy of watching a dear friend confirmed as a circuit court judge outweighs the challenge of the past few days. It would be fabulous if a direct line of sight could be drawn between overdoing it last Thursday with the following uptick in my symptoms. But, as anyone who has or lives with someone who has MS, figuring out the whys and wherefores of what makes MS better or worse is a mystery. I just know that this morning my lungs are congested because I am slumping worse than usual to the left--this compresses my lung and makes it slightly more difficult to breath--and I forgot to raise the head of my bed a little higher last night.
Pain Sucks: When I was a young woman I had migraines that I thought were the worst pain I could tolerate. I was wrong. I found that childbirth is no picnic, but results in the present of a beautiful new life. From what I can tell, persistent nerve pain has no 'up side.' I wish humans were born with a box of spare parts; so I could unfasten my arms and set them aside for a few days and wear my 'stunt' pain free set. I guess it is a good thing God didn't put me in charge of the creation of humans.
Alone vs. Lonely: In Sundays paper local columnist Dorcas Smucker, who is a farmer, wife, and mother of a big family, wrote about having the house to herself for a weekend. Her insights struck a chord with me because they reflect my own experience so well. {Entire column}
"The house seemed dim and huge. Everything from furniture to a left-behind air mattress seemed still and unmoving. How many closed doors did this house have? More than usual, especially upstairs, surrounding the silent hallway. I heard noises I never notice — the clock ticking, the wind, the dog brushing past on the porch, the refrigerator humming."

Later, she talked about what she learned about being alone.

I have had many friends who lived alone, and one thing I have found hard to understand, especially in the elderly, is their hunger for time with others, their desperate compulsion to talk. Now, after lighting up at the sight of my son after only four hours alone, I had a new understanding of my friends’ need to talk with a visible face.Too much solitude brings loneliness, but just enough brings the gift of rest. I was free to read, to pray, to ponder without interruption.

I often hunger for human contact, human touch and then find that my light and sound sensitivity combined with the intense nerve pain make it almost impossible for me to be around people. I will haul myself out of my bedroom, lure the teenager from his lair, grab the hubbie and curl up on the couch for a movie and in no time the National MS Warning Center that is my brain sends out hurricane warnings. The sound of keys tapping on my son's laptop, the high pitch of the TV, the dining room light, all start to swirl in my brain until I feel the top of my head start to come off. The careful walls I've built to buffer the pain begin to crumble and suddenly I rush for the sheltering cove of solitude and silence. For me, aloneness brings loneliness, but my symptoms make being around living beings just about impossible. I don't know what the answer is.

Children, Children, Children: I am so grateful for the children who grace my life.
  • a new baby girl born to dear friends on 1 July. Holding her was the best feeling ever!
  • my 5-yr old friend and lunch at the park. She's been my buddy since the day she was born and knows me only with a wheelchair, so is completely at ease. Climbing into my lap for snuggles and a 'ride.' She is balm for my soul.
  • my 18 yr old son. He is home from college for the briefest of weeks. It is bittersweet to see the independent young man he has grown into. I am both proud of who he is becoming and missing the little boy who, in what seems like yesterday, climbed into my bed to eat chocolate cream pie for breakfast.
  • my nephew and my neice's son. Busy little boys who magically grow and change every time I am lucky enough to see them.
That is all for now. I am going back to my quiet nest with my snoring dog at my side.

And, a nod to a fellow blogger who introduced me to, "Word Salad"