Her Name is Grace

Grace. Most of my life I have joked, in a sorta self-deprecating way, about being glad my parents didn't name me Grace. For a child with a neuromuscular disease who falls down more often than most people scratch their noses, that name would have been a horror.

Horrific like it must have been for some of the Old Testament characters, such as poor Reuben. Now, Reuben doesn't sound that disastrous to our 21st century ears. (I hear that name and start salivating.) Yet, back in the day, before corned beef, it was a tough moniker to carry. Reuben was the first- born son to unloved Leah whose husband, Jacob, pined away for her lovelier sister, Rachael. Reuben means "God has seen my distress. Maybe now my husband will love me."

(I have compassion for Leah, but seriously woman, what were you thinking! What kind of mother would shred her son's tender little newborn psyche with such callous disregard. I hope little "My daddy loves another woman and not my mommy" was an athletic child. Recess could have been hell.)

Not to be outdone by parents of ancient times, we have some modern-day sadists. A quick internet search of "worst baby names" yielded jewels such as: Richard Little, Meconium, I'am, Soosyn, Latrina.


And, then there are the hapless parents who give their sons perfectly good names like Earl or Ralph, which any high school or college student will tell you are NOT good names. (Do YOU want to go through life with a name that means "to vomit on somebody's shoes after a rowdy frat party?" No, I didn't think so. Fortunately, these names are diminishing in popularity.)

But, I digress. We were discussing my adoration of my parents and my "I don't care if you beat me in childhood, thank God you didn't name me Grace" gratitude. (No, they didn't really beat me. It's a literary device called hyperbole. Look it up.) Any name but that! Even Meconium (baby poop in the womb) would be preferable.

This past weekend, however, I had a dawning realization that disability CAN be graceful. I spent an afternoon watching videos on YouTube of amazing feats of athleticism as people demonstrated their determined strength and creativity in moving their disabled bodies. What once seemed to me as pitifully awkward now appeared as intelligent artistry.

It's no accident that later that weekend I went to the ballet for the first time in many years. As I sat there watching people dance on legs that were rippled with muscles and doing moves that surely defied the laws of physics, I was struck by the similarity between what I saw on that stage and what I had viewed on YouTube. In my mind's eye, those lithe ballerinas and those people crawling from the floor into their wheelchairs became one. One in spirit, in beauty, in determination, in dedication, in mastery, in courage. Oh, and most of all, one in Grace.

My parents may not have named me Grace, but I hope that's the "new name" that God has chosen for me.

A Jock in Born

When I was fifteen, and very mildly affected by my neuromuscular disorder, I began jogging every night. (Under the cover of darkness, nobody could see me!) I would propel myself with gritty determination to go a little bit further every night; I had dreams of working hard enough to grow strong enough and fast enough to join the track team at school. I loved the feeling of power when I would sprint the last 100 yards down my street and collapse in a heap on my lawn... sweating, gasping for air, tired, and exhilarated. Even though by "normal" standards for a teenager, I was really pretty slow and had an awkward gait, I felt strong and athletic, and believed if I just tried hard enough I could keep my disability at bay, or better still, beat it into submission.

Somewhere along the way, I lost that love for moving my body. Perhaps it was when the dream of being "normal" quietly slipped away as I realized all the exercise in the world could not stop the unrelenting assault of faulty biochemistry on nerves and muscles in my lower extremities. I would go to fitness gyms back in the 80's and it was apparent that fitness was for the hard body beauties... not the less than perfect bodies like mine. Fitness and Disability were two worlds apart.

And that mindset characterized most of my adult years. Why bother being physically active if it was not going to keep me from growing more disabled? If it wasn't going to keep me from having to use a wheelchair? Why pretend to be athletic when it was a farce?

I am reclaiming the dream of athleticism and fitness... only the dream is based this time on reality. I don't expect to exercise my way out of the wheelchair, BUT I do expect to strengthen underused muscles, particularly in my upper body. I expect to lose weight. I want to see just how fit I can become with time. I want to be able to do transfers with athletic grace. I want to be able to sit on the floor and get up without having to call the National Guard. I want people to see me and marvel that a woman in a wheelchair shows such obvious regard for her physical being.

I am doing so much more than dreaming. I am eating 1000-1200 calories a day. I am riding a cross-trainer, recumbent cycle for 1-2 hours a day with a cardiovascular workout. I am starting to use resistance bands to build my upper body. I am exercising on my mattress (where I am safe from falls), awakening muscles that had slumbered for years.

And I am having a blast realizing that Disabled doesn't have to mean overweight and weak. Fitness and Disability can coexist within the same body. Who knew?

*This is not me.

A Star is Born

Well, well, well. I did something I never thought I'd do: Willingly appear in a video! Of course, believing strongly in something... for love's sake... is a great motivator to overcome my self-consciousness. I liked that I was totally unselfconscious about the wheelchair... just didn't like seeing myself that overweight. This will serve as a good "before" snapshot.


http://www.newevangelicalpartnership.org/?q=node/31

"Diet/Exercise" Renamed: "Comfort/Hope"

It feels like I am at a significant crossroads in my life, full of changes, losses, and possibilities.

I resigned from my job last week and applied for Social Security Disability. I say "job", but it was so much more than an 8-5 job. I worked in a church to help our congregation build relationships with the broken and hurting in our community. It was my passion, joy, and honor to serve in that role. (Although, sometimes, I wanted to scream in frustration, anger, and despair. Joy doesn't come without sorrow, it seems.)

The increasing physical difficulties of my disability (difficulty walking, bladder incontinence, lymphodema) were slowing me down. Adding to that, my daughter decided to go live full-time with her father, leaving me bewildered, hurt, and angry. Then my son dropped out of college and moved home without a job and with college loans to repay. Already precariously balanced, the scales tipped towards resigning my job when several "friends" acted decidedly unfriendly in a staggering display of betrayal, lies, and viciousness. Enough was enough. It was either resign or have a breakdown.

I will find another place and way to serve. Despite my heartache and loss, I know there will be another church family, and other broken and lonely people who need the love I need to give. Right now, though, I am in the wilderness, severed from my faith community of 11 years, and no longer the esteemed "Director of Compassion Ministries", but a disabled woman who just applied for disability. Like never before, I am aware of and clinging to my identity in Christ.

I am also finding an unexpected source of solace and hope in this desert. Unbelievably, it is diet and exercise. HUH? The dreaded duo of deprivation and torture have morphed into lovely companions of comfort and hope.

As I exercise for 90-120 minutes a day on my Nustep, my mood elevates. Knowing I can burn 500-700 calories a day gives me a feeling of control over my future. In combination with eating about 1200-1400 nutrient-dense calories a day, I KNOW that weight loss and improved physical functioning is a certainty in the midst of all the uncertainty.

I may not have a job. Or a daughter living with me. Or a church family. BUT I have Jesus, White Lightning (Nustep), and a whole bunch of motivation to use this time to take care of me.

Could it be that this low point is the catalyst to propel me into a healthier future? Time will tell. Stay tuned...

Spring Thaw

Today was the first balmy, spring-like day we have experienced here in my part of the world. An azure blue sky and sweet-smelling breezes sang to me of renewed dreams and fresh beginnings.

It is fitting that I am resuming my blog posts today of all days. Winter has been hell. I am not talking about winter weather as much as I am talking about icy-cold, wintry people whose brittle touch caused frost-bite to my heart. People I had entrusted to hold my heart breathed into it silvery daggers of ice through treachery, betrayal, and worst of all... words. Angry words burn and consume like fire, but these words were a cold fire that left part of my heart white, numb, and dying.

I've retreated from the wintry people, and have cocooned myself in a warm blanket of solitude where perhaps that damaged tissue can recover. It shows signs of pinking up.

One strong indicator of life is that I have resumed my quest to take care of myself. Against all odds, I am dreaming, once again, of the strong, lithe woman I know who lives inside me. More than dreaming, I am working with disciplined determination to free her.

She is encased in about a hundred pounds of excess weight. She is entrapped by flabby muscles. And she sings to me of life, and hope, and the future. She is lovely as she glides in her wheelchair with grace, beauty, athleticism, and strength.

I want, more than anything, to free her, even knowing that to do so will be an epic battle. Yet, the vision of her compels me onto the battleground. I can see her power. I can see how she can change the world. I want to know her, to be her, to live as her.

Is it possible for a middle-aged, paralyzed woman, 100 pounds overweight, with a host of health issues, to honor herself with gutsy, determined discipline to exercise strenuously and eat moderately, to lose weight and to grow strong?

I believe it is possible.