Life in Area 51

MS is isolating-nerve pain doesn't turn your skin neon orange, weak limbs don't glow in the dark, and eye and ear neuropathy don't advertise with a golden halo. I admit, it might be nice if what I am experiencing made itself known without going through the laundry list of each symptom when I am asked the simple question, "How are you today." At what point in responding to this question authentically (i.e. the nerve pain in my arms is severe, but the occipital neuralgia seems a little better, while the sound sensitivity is making me think about how I can quiet the darn birds outside my window, and on and on) does the asker' s eyes start to glaze over. I used to just say, 'fine,' and have moved on to the slightly more honest, "hanging in there," but in reality, I haven't the words to explain what living with the MonSter is like. People would truly look at me like a freak if I told them my body was taken over by an alien presence eight years ago and I fight every day to free myself from alien control (this could be a much more entertaining answer, I will have to consider it.
The visible side of my illness is the pale purple braces sprinkled with a butterfly pattern that I wear on my forearms and my legs--known in the biz as ankle/foot orthotics (AFOs) and FAOs (forearm)--not to mention the tilt wheelchair with its multiple wheels, loud gear shifts, and generally fascinating gizmos. To add to this, I often wear wrap around dark sunglasses due to light sensitivity (that is a nice way of describing the stabbing pain and sea sicky sensation that comes from sunshine, flourescent lights, and light in general). Quite the picture--I recently saw a t-shirt that said, Keep Staring at me, I Might Do a Trick. I want to put this on a placard and attach it to my chair.
A while back, at the local Target, with braces+chair+ dark glasses, Oh My!, two women came walking towards me, one said loudly--"Get out of the way, that lady is blind!" How hilarious--I would have some mad wheelchair skills if I could maneuver through a crowded store while blind and without some type of guide. The two women leapt out of my way safely, I am happy to report, although it was very tempting to veer towards them and see how fast they could move.
A tremendous pull exists between seeking acknowledgment of my illness and the desire to move through the world like a 'regular' person. Do I want to be the poster child for disability and illness on my next trip to the market, the park, or a party? Some questions from the public seem pushy and rude, while in others I detect a more sympathetic motive. Whatever their intent, I often feel like a giant spotlight follows me around, "everyone look at the gimp in the chair, what will she do next?" If someone sees me struggling, should they ignore it, offer to help, smile sympathetically, or ask probing questions?
This past weekend was a big birthday for my Dad and we had a reunion with family I hadn't seen in eight years. I dreaded the looks on their faces when they saw me in my chair for the first time. Wonderfully, all they seemed to see was me; after hugs, and settling in together several of them asked me gentle questions about my health. I could feel their love and concern and didn't experience any pity.
My life is more than different with this MonSter hanging around. I can't escape it, not even for a minute, but I can choose to lead a full life.

The Meaning of a Life

I learned something in Sunday school this week—no, it is more accurate to say I was reminded of a fundamental truth that is foreign to the western focus on ‘what I do, as testified to by what I produce’ as how to define an accomplished life {for those who aren’t Sunday school aficionados, hang in there, this will come back around}

My class is groping its way through Hebrews—one of the meatier books in the New Testament that explores many of the ‘whys’ and ‘hows’ of faith. Chapter 11 profiles some of the flannel board famous— those bible stories with the characters and props cleverly cut out in flannel in full 2-dimensional glory and retold by children's Sunday school teachers until the stories become more like fables than truth; Noah with his ark, Jonah and his whale, Moses and his staff.

These OT ‘stars’ are remembered for the remarkable things they did—build an ark-Noah; build a nation-Abraham; part the sea and lead his people-Moses. Their value and worth came from the things are famous for. This is true for many, if not all, historical figures, such as Paul Revere’s ride, Nero’s violin, or Marie Antoinette’s head. Again, their actions and/or accomplishments equate their greatness.

Back to chapter 11 of Hebrews, verse 13: All these people were still living by faith when they died. They did not receive the things promised; they only saw them and welcomed them from a distance. So, here it is, centuries after they lived and, instead of their accomplishments as the benchmark of their lives, it is their faith—their internal world that truly gives value to their lives.

I struggle constantly with the value of my life as I live it today. Women are held up as the ultimate multi-taskers: bringing home the bacon while looking fabulous and simultaneously juggling family and civic responsibilities—not to mention ‘finding oneself,’ through interests and hobbies. My mom is a nurse, and when she graduated from high school, women had few choices for careers; nurse, teacher, and housewife (and certainly, the career ended when the babies came.) I wonder whether my mom might have chosen to be a research scientist, or a wildlife biologist, or a chef, if she were born in my generation. I certainly was on the track to ‘having it all’ before MS interfered. I had a fabulous career, nice house, active in my church, busy family life—pretty much headed towards the ‘Modern American Woman Dream Life.’

Now, I can no longer do many of the simple things that I used to enjoy: baking, cooking, brushing my teeth—let alone the career path I was on or any of the outward things that gave my life such richness and variety. When I am asked today, what I do, I haven’t had much of an answer, at least one that I took satisfaction in.

Thanks to Hebrews 11, I am reminded that even the lions of the Old Testament, who lived truly remarkable lives, are better remembered for their faith than as 2-dimensional character simplistically played out in flannel. I can live my quiet life with integrity, focusing on what truly matters: faith, family, friendship. Mourn what I have lost and confidently move into a new perspective of how to define what accomplishment is—a life well-lived.

Indiana Jones: my role model

These past days...

My days are like the work of any Egyptian archaeologist: layers of sand, dirt, disappointment, echoes of the past, and the occasional treasure. Certain things never change and have become my ghostly companions; fatigue, pain, weakness, and depression--the constant presence of MS. Under that is the bedrock: the deep and abiding presence of my faith. Layered over these are the mix of the day to dayness of my world and times of simple pleasures that are treasured.
Thinking through this past week, a series of snapshots play through my thoughts:

• spending the evening with dear friends who are about to welcome their new baby into the world.
• taking my favorite five year old to her first theater movie. The film reflected in her wide eyes as she came up the dark hallway and first spied the giant images projected on the screen. The play of emotions as she watched the story unfold. And, her crawling into my lap during the scary part while we whispered about the 'good guys always winning.'
• saying farewell to one of my spiritual mentors who died Saturday after an aggressive illness. He lived a life full of family, caring for others, and a dependence on his Creator. I hope to live my life in the same way.
• feeling the nerve pain in my occipital nerve spike. Laying in bed and trying to fight the fear that it will return as before.
• picking flowers in my garden: in shades of purple; lavender and two different rhododendrons. The clematis vine is reaching up and over the trellis while my two new roses are gaining a foothold. The first buds on my other roses are starting to open.
• fighting the loneliness and boredom of the hours I spend alone. As I've heard, "the mind is a dangerous neighborhood, don't go there alone." Sometimes it feels like I am waging a battle with the pain, fatigue, loss, and loneliness. It isn't as simple as having the fortitude to do a thing--it is the betrayal of a body and mind that cannot do a thing.
• cheering on an old friend who is close to landing a fabulous job. Feeling an odd mix of pride in her accomplishment (she is one of the smartest and most accomplished people I know) and envy stemming from the loss of my own profession.
• going to church with my son: singing my favorite hymn and communing with God.

My days aren't simply up or down, good or bad, well or unwell; they are a patchwork of moments, feelings, and interactions. Things that sustain me and things I endure. And, like the man digging in the sand searching for ancient treasure, I am committed to this life of sorting and sifting through the days and treasuring the best times.