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"

Thursday, July 2, 2009

The lava is falling, The lava is falling

I bounce from high to low so quickly I can almost feel the pull of gravity like a bungee chord keeping me tethered to the ground and not quite able to reach the clouds. High-witnessing a friend's career-capping appointment; Low- the Oregon summer heat arrived and my body is protesting. I am sitting here wondering at the 'price' MS will charge my body for the afternoon trip to see my friend sworn in. Four hours sitting in a car, a reception in the 90+ degree heat--will the cost be two days in bed, increased weakness, or a full MS meltdown? And yet, when a friend of 20+ years achieves such an honor I am willing, no, more like unwilling to allow MS to dictate my life and choices.
The decision to do a thing, no matter the toll on my body, is relatively easy for the biggies; births, deaths, celebrations, and milestones. I can shine it on and be my funny, charming self while disregarding the 'she looks so good,' rhetoric that follows me like a trail of rapidly popping bubbles. If these same well-meaning folks could watch a trailer of what my next hours or days will probably be like--they would know that MS is a relentless task master and a few hours of shiny, happy Janine is just a cover for the reality of this damnable illness.
It's funny, but I think my hubbie pays the highest price for my forays. He is the one who will clean up the mess when my weak hand drops the bottle of salad dressing on the floor. He is the one who brushes my teeth and applies deodorant. He is the one who is awakened during the night when my legs cramp and twitch. And, he knows, better than anyone, the impact that 'real life' takes on my body.
All of this bounces around in my head; the pull between wanting, for a few hours, to be like everyone else and without a care, attend this happy, momentous event, weighted against the reality of life in a secondary, progressive MS body. I feel fierce anger that I can't control or flip a switch and make this all go away-just be a woman in a pretty dress attending a party. No amount of rest or strategic planning will satiate the MonSter.
Who knows, maybe today will be different, or at least better, than history clearly indicates. Maybe I will come up with the right formula of rest stops, air conditioning, and naps so that by this evening I am not in full melt down. I understand why virgins were sacrificed to volcanoes--I would do almost anything to stop the flow and save the village.