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.

Meanwhile, I Dance

I get up. I walk. I fall down. And, meanwhile, I dance. Rabbi Hillel

One weekend in the life of a woman with a disability...

Thursday night: I was overwhelmed by all there is to do to get ready for Christmas and all that I cannot do. I can't bring the Christmas boxes from the basement. I can't put up a tree. I can't clean this pit without help. Smack dab in the middle of my pity party and crying jag, my phone rang. It was an elderly woman who suffers from depression due to an incapacitating illness. Somebody urged her to call me because I might offer her hope. I called her and said, "I'm not in a good place to talk tonight, but let's connect this weekend." Then I sat there feeling very blessed that I DO have a hope inside me to offer others. My whole attitude changed for the opportunity to help somebody else. It was good to feel needed.

Friday: I decided to believe that asking for help to clean my house and prepare for the holiday might bless somebody, I called a young woman who had previously offered. She was thrilled and told me what a blessing it would be to give back to me for all the help I had given her in working through her issues. She said I was like a mom to her. wow. Encouraged, I reached out to a relative I have neglected for years and from whom I feared a (much deserved) blaming/shaming response. He was a love and said he would love to hear from me! Such grace.

Friday night: Celebrate Recovery was awesome. The women from Magdalene, recovering from drug addictions and prostitution, graced us with their lives and stories. My daughter has described nights like this as "feeling like the room is full of soft feathers."

Saturday: The Alternative Gift Market at our church, which I helped lead, was a beautiful event. Buying Christmas gifts that bring hope and better lives to people in difficult circumstances throughout the world...so close to the heart of God. The spirit in the room was lovely. I connected with a beautiful friend who has been battling cancer. I hadn't seen her in months. She said, "I've been praying for you. I've been worried about you." Such selfless grace.

Sunday: M. came over and tore through my house with gusto. In short order she transformed the main living areas into sparkling loveliness. She offered to come back on Tuesday. My next door neighbor told me she wants to come and help this week. Her sister, grieving from the loss of her husband, wants to help, too. I'm beginning to see a pattern emerging... wholeness through serving others, and wholeness through receiving from others.

I have a serious plumbing issue with water spilling out onto the floor when the washing machine spins. Shower drain overflowing. ugh.

Sunday Night Late: Getting ready to go to bed. Late. Can't find my crutches which I need to get into bed. OH NO! They are outside on the carport where I left them when I returned from church! It's 2 am and COLD outside. It takes me about ten minutes to get them and not easy to juggle them and roll the wheelchair up the ramp. Meanwhile, the dog escapes from the house and I'm calling, "Rio, COME!" while trying not to disturb the neighbors. He finally comes home.

Finally, exhausted, I prepare to "slip" into bed. And slip I did, right onto the floor. At this point, I had a choice... to crawl into the bathroom, push up onto the toilet and then use my crutches to stand up... which is probably more difficult than an able bodied reader might realize...Or to pull a pillow and blanket from the bed and curl up on the wood floor. I was SO tired, I chose option 2. While laying there, I was so grateful for my life. It is not an easy life. And not one I would have chosen. But, it is a life that gives and receives blessings. It is a life that can alternate between desperation and delight within a short time span. My hips, aching against the hard floor and my head nestled on the blissfully soft pillow perfectly depict the tension of my life. I fell asleep and slept hard. And woke up and crawled to the bathroom to begin another day. (Note: $500 later my plumbing problem was solved. Drainage. Don't take it for granted!)

I fall down. And, meanwhile, I dance.

Does My Dream Still Wait?

Hello blog,
I've neglected you, haven't I. One observation I've made about wellness bloggers: the frequency of posts is directly proportional to discipline. The more discipline, the more success, the more desire to write.

Let's see now. Hmm. Three months... three stinkin' months without a post. Based on my hypothesis that discipline results in frequent posts, an astute reader could reasonably ascertain that a three month hiatus does not bode well. Indeed.

WHAT HAPPENED? I honestly ask that question. I was doing SO well. Better than anytime in my life. Emotionally, spiritually, physically... improvement on every level.

Using my previous metaphor about the mountain climber, at some point in September, I climbed semi-conscious from my sleeping bag, sleepwalked down the trail, drove zombie-like out of the forest to the nearest town where I proceeded to troll the four-lane highway (every town has one just outside the city limits, complete with a Wal-mart and two dozen or so fast food joints). Here I am three months later waking up from the stupor with an empty ketchup packet dried to my cheek and a car full of McTaco King boxes littering the floorboard. Worst of all, I'm craving a Chocolate dipped Dunkin-Blizzard.

Three months ago I was dreaming of increased health and wellness and was realizing that dream. Then, I became comatose and left the dream back at the campsite. I wonder if it still waits for my return. As the days have shortened and the leaves have fallen and the blue skies given way to winter's gray, does that dream huddle under a thread-bare blanket with her arms wrapped around her cold legs and wonder why I left her forlorn beside the gray ashes in the campfire ring?

How do I dare approach her and ask for a second chance? Second chance? Who am I fooling? She's heard it all a thousand times, and yet, she keeps taking me back. She listens to my apologies, my "I'll do betters", and with a painful and sweet smile always opens her arms to fresh beginnings. How do I have the audacity to ask once again, especially after we had so bonded, the dream and I, only to be amputated, both left with tatters where whole flesh once grew?

And, yet, what choice do I have. The dream was created for me and me for her.

So, I sit underneath a black sky and golden arches and prepare to prepare to prepare to drive back to the trail head and start the climb again, knowing it will be even harder with a body that's been fuel-injected with trans-fats and high fructose corn syrup.