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.

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"