Friday, March 27, 2009

Claiming Joy

a conscious choice every minute, every day

Music is my touchstone--listening to favorite artists and songs transports me from my own island to a place that can be peaceful, or worshipful, or upbeat and fun: depending on the artist I choose to listen to. In the same vein, opening the blinds to let in sunshine; 'rolling' with my dog Willis around the neighborhood; or even getting dressed and moving to the living room couch are all choices and challenges that I can make throughout my days. Some days it takes as much mental and physical energy to open I-Tunes and play music as it would to go outside with my dog--and neither happen.
How then do I claim joy? To clarify, I am separating what I can do from an internal decision that isn't dependent on the circumstances that I find myself in. Many have heard me say that I can't control what MS is doing to my body (see new link '10 Illnesses Doctors Don't Understand' under the Understanding MS heading)but I can choose how I go through any given day.
I see myself as living on a deserted isle, The Kingdom of MS, and I, much as Tom Hanks in Castaway, have to carve out from an inhospitable environment a life that is worth living. The difference from the movie is that my island plunked down into the middle of my life and it continues to sit like a treacherous submerged tree snag just under the surface. Others can visit my island--but never truly live there.
One of my favorite sections of scripture is found in Lamentations--reputed to be the saddest book of the bible. In chapter 3 Jeremiah stands among the ruins of his dreams and life--and in a moment that serves as a powerful touchstone for me--he chooses to turn his mind from his circumstances and praise the Almighty. Too often I allow the outward manifestations of my disease dictate my internal world. This section of scripture inspires me take a different path.
So, this morning, when I have had a headache for almost three weeks; when I woke up more fatigued than when I went to bed; when my hands and arms are twitching; I will drag my behind out of bed and open the blinds, turn on music, and choose Joy. I can't imagine surviving without making this choice over and over again.

Sunday, March 22, 2009

Please, hold your applause........

The dance isn't over yet

I am often told what a shining example I am as a person in a wheelchair with a chronic illness. This leads me to wonder—compared to what? To whom? The idea that this illness somehow transports me into the role of the ‘suffering Christian’ or, worse the poster child for MS makes me shake my head. Would that that person be in my head for a few minutes, or go through a day with me, they would see that I am no different from any other person. My challenges are more visible and may seem comparably more daunting—but I am still just me as fallible as ever.

What then, do I want people to see? How do I want them to respond? For, undeniably, I do have an illness that is unrelenting; I am fundamentally changed in lifestyle from as little as two-years ago. Disability by its outward reminder of fundamental difference can and does create a barrier. You can’t look at me and not see it.

One of my dear friends will call me up for an evening of Scrabble. She shows up with a couple of cold beers and breezes in. We spend a companionable evening as arch rivals over the intricacies of brown wooden tiles. We may or may not discuss my illness—in a similar vein to any area of her life. While the location and length of our time together has changed from pub afternoons to a quiet hour or two on my couch—I still feel like a friend rather than an obligation. She isn’t visiting the sick friend; she is hanging out with a girl friend.

It is being seen as a person outside of illness and disability that I desire. I am so fortunate to have a ‘village’ of family, friends, and church folk who pitch-in and help me in the day-to-day, the times of crises and in the big projects. I can easily feel sheepish for desiring something more than what I am blessed to have.

The old me had more going on at any given time than was probably wise, when I look back. One program I coordinated at my church replaced me with seven people. My nights and weekends were brimming with my son’s, family, and church activities. I had a fabulous job, as well as gardening, cooking, crafts, and on and on. I went as busy as a humming bird from one thing to the next.

Now, I consider it a big outing if I can make it to the ‘funny food warehouse’ for the monthly trip to fill our pantry. It is one of my good days if I can open a jar of spaghetti sauce (with my electric jar opener) and the bag of frozen meatballs (from Costco) and dump them in the crock pot. I yearn for the days of cooking gourmet meals and entertaining folks. I would give just about anything to be able to spend Sunday afternoon puttering around in my yard. I fight with an aching loneliness and longing for the life that is slipping through my fingers.

How then should folks see me? What then do I want from other people? When my hubbie has to brush my hair, button my blouse, and cut up my meat—how can my heart not cry out for the evenings we used to go dancing? Am I patient or person?

I don’t pretend to have any answers. With MS some days I am so ill that I can only be a patient. Other times, I just want to be a wife, mother, daughter, friend.

I have said many times that on any given day I can’t control any part of the MS, but I can choose how I am in the world—a loved and blessed daughter of Christ who happens to struggle with her life a little more visibly than others. I am not a paragon of virtue or the epitome of noble suffering—just a girl striving to live her life with beauty and meaning.

1 Peter 5:10 And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast.

Philippians 3 7But whatever was to my profit I now consider loss for the sake of Christ. 8What is more, I consider everything a loss compared to the surpassing greatness of knowing Christ Jesus my Lord, for whose sake I have lost all things. I consider them rubbish, that I may gain Christ 9and be found in him, not having a righteousness of my own that comes from the law, but that which is through faith in Christ—the righteousness that comes from God and is by faith.

"7But whatever was to my profit I now consider loss for the sake of Christ. 8What is more, I consider everything a loss compared to the surpassing greatness of knowing Christ Jesus my Lord, for whose sake I have lost all things. I consider them rubbish, that I may gain Christ"

Thursday, March 19, 2009

The Story of my MS: Are Some Neuros Aliens?

What's With the Crazy Bird Picture?
I've had this picture as my desktop wallpaper for over a year. Why? I see the black background image as my MS. I see the foreground image as how I live life-in spite of, overriding, and shining beyond this invasive illness.
You see, MS is a dream stealer. I no longer bake birthday cakes, walk down the shaded paths of Hendricks Park, or even wash my own hair. I read often of the efforts of volunteers to rip out the invasive ivy plants that threaten the botanic life of this park. As with the dark plant life in the back of the picture, I can be intentional about not allowing MS to overwhelm my life.
It was subtle at first: too tired to go for a planned outing, my left pointer finger failing to connect with the correct key on the keyboard; a few trips and stumbles--my left toes seemed to have a mind of their own. My GP doctor seemed puzzled--my blood work was normal, my symptoms vague and variable--maybe my busy life of working, mothering, volunteering, gardening, playing were taking an extra toll? But, this had always been my 'adult life'--something seemed off. Later, seeing a hand specialist about a bump on the back of my left hand, I heard the first hint of pervasive neurological problems. Yes, I had a ganglian cyst on the back of my hand--but it was harmless. My weak, dragging finger could only be attributed to a neurological issue. It is too bad that the clarity of that doctors findings would become a vague memory as I dove head first down the rabbit hole of neurological diagnosis and Neurologists in particular.
Neurology is an Alien Universe
First off, I am fat and a woman--double strikes in the journey to diagnosis. The initial contact, about 10 years ago, was with a silver-haired, deeply respected Neuro doc who left me with his words, "You're fine neurologically, just lose weight, excercise, and de-stress." To this day I have never understood how my body weight corresponds with the growing weakness on the left side of my body. I know lots of fat people--many of them busy Moms--and no one else seems to experience neuro symptoms as a side effect of being fat.
Fed up with this guy, I trotted out my symptoms, experiences, and body to a younger, hip, newly minted neurologist with a ponytail-no less. By now my entire left side was week, falls were constant, and pain was becoming a new friend. From a spinal tap with over the top indicative numbers--this guy was definitive--"you have MS and I am here to help." (what a joke that turned out to be) I started working with a PT at his recommendation--this led to a referal to a wheelchair evaluator. After a tremendous amount of angst and denial, the evaluator made me see that, like a house on a rise during a flood, my independence was slowling ebbing away. Enter the wonder of an electronic wheelchair--I could go out alone: shop for hours, 'walk' to work, and even have enough energy to move through my day. With crutches and the wheelchair, I was free from weakness and fatigue--I had my life back.
Imagine my shock when my neurologist first saw me using the chair and promptly blew his top. I am glad to this day that my hubbie was with me that day or no one would believe how angry and derisive he became. What, for me, was my ticket to freedom, he saw as a sign of weakness and giving up. He no longer would be my doctor if I gave in to the 'crutch' of using a wheelchair. I was stunned and promptly, 'rolled away' from my neurologist.
Over the next few years my new neurologist, who was said to be a specialist in MS, just couldn't accept the diagnosis. She said that I had pervasive neurological symptoms, but was suspicious that the labratory that conducted the testing of my spinal fluid had somehow inadvertantly mixed my sample with someone's who had MS. Side trips to an internationally known MS doc at the research hospital in nearby Portland, confirmed my initial diagnosis. But, for reasons I couldn't fathom, she remained firm in her misgivings.
I am atypical--I didn't have brain lesions, my symptoms were one-sided (consider me a lefty), and, according to her without lesions--no diagnosis. It was the fancy doc in Portland who told us I had spinal cord, secondary progressive MS. At 38 years old I learned that I should only plan on living for another 10 to 15 years. Chilling, stupifying, and crazy making. But, back in Eugene, my local neuro refused to accept this diagnosis.
Over the next couple of years, things came together to cement my diagnosis--the local specialist left town and the replacement saw no reason to question my diagnosis. I completed a year of Novantrone chemotherapy, while working, mothering, and living, and saw marked improvement in only one area. Very dissapointing.
About two years ago, after my biannual visit to the Portland specialist, who didn't say one word about it to me. My local neuro suddenly refused to continue any of my meds or treatments. Over the phone, his medical assistant blithley informed that I 'don't have MS' and I no longer needed to see a neuro. Already on disability, having recently given up my dream job, and with losses in both legs, arms,and bladder, bowel, vision, hearing, I was stunned. I met with the doctor and he said that the doctor in Portland had called him and said it was his diagnosis that I had Conversion Disorder--a mental illness that Freud had popularized in explaining the vagaries and symptoms of hysterical females. Currently out of vogue, this potential diagnosis could bring the hope of cure, but left me with no options. The doctor dismissed me, saying no further treatment was warranted and walked out of the room without any guidance of where or what I should do. Now, with their notes in my medical chart my benefits were threatened and I was as sick as ever.
Enter a neuropsychologist, who I had seen for cognitive testing for several years. She educated me that CD was no longer used and that pschosymatic mental illnesses could be tested for. Why did neither of my neurologists suggest testing before diagnosing me? I took a battery of psychological tests and they showed that I didn't have one of the mental illnesses that manifest in symptomology. They also showed that I don't malinger over, or exagerate about the experience of my body. So, now what? The two MS experts in my area (hah!) had dismissed me out of hand.
Luckily, a new neuro moved to town and he and I agreed to start with a clean slate and confirm once and for all that I had MS or some other rare neurological illness. After two years of testing I am strangly proud to say--I definitely have MS.
Most importantly I have learned that: doctors don't define who I am or what I experience; I know my body and this disease; I have the right for professional medical care--but I probably will have to fight for it; and I can survive the devastation and vagaries of multiple sclerosis, but it is very likely that many neurologists are aliens (probably Vulcans) and they have too much control and too little empathy to wield it.

Wednesday, March 18, 2009

Who am I??

It is the most basic of questions--Do I define myself by an internal or external set of parameters or some combination of both? Do my roles; wife, mother, daughter provide my meaning? Are my possessions the arbiter of who I am (I certainly hope not). What of my skills and former profession, my education, my accomplishments.
I could easily take on secondary progressive multiple sclerosis as the primary definer of my self. I would rather see MS as an 'impactor', but not the who of me. But, so much of what I have done, what I have lost, and what I deal with every moment of every day is seen through the lens of MS. Separating the who of me from the illness seems as improbable as untangling a spiderweb.
The basics:
  • Wife, to John--20 years on June 18th
  • Mother, to Braden--he is away at Bard College at Simon's Rock in SW Massachusetts
  • Daughter to parents in Eugene and Veneta OR
  • Sister to an older brother, in Cabot, VT
  • Diagnosed with MS 9-years ago
  • Diagnosed with Secondary Progressive 7-years ago
  • Using an electric wheelchair--9 years, 4-years full-time
  • Left wonderful job at the UofO 3 years ago--on full disability
The cornerstone of who I am and how I live my life is being a Christian. I look to the book of Esther for inspiration. If I didn't carry a bible, attend church, and other outward trappings of Americanized Christianity--would those around me see Christ in my life through my words, my actions, my attitude, and how I deal with adversity.
I don't strive towards some brittle, barbie doll, pasted on smile version of the 'suffering Christian.' I desire a life full of compassion, humor, passion, pain--living the days that I have with as much joy as I can. And accepting that that may include kicking, screaming, pushing, whining, as well as fear and loneliness.
That is why I decided to write this blog--to explore the question of "Why do seemingly bad things occur," and "what is life like living with a rotten disease," and"How my faith in God doesn't guarantee some type of white picket fence, mini van driving, ranch house golden life. "
So, if anyone chooses to read along with me as I write this--don't expect perfect or pollyanna answers. Just one woman of faith who does her best from day to day to live with MS.