Category Archives: Guillain-Barre

Guest post: Myself from 2007

I started blogging right after my brother-in-law was diagnosed with Guillain-Barre Syndrome. This is a post I wrote way back when, before anybody but my mom read Weebles Wobblog.

Since I’m kinda occupied this week, I’m offering it as a guest post. I’m feeling the same sentiments now that I did then.

Our Bodies: Do We Rent, or Do We Own?
My Dad once told me that we are all TABs: Temporarily Able-Bodied. Being young and invincible, I dismissed his statement as a middle-aged mope.

Years later, I finally see what he means.

Eleven weeks ago, my sister’s husband complained of numbness in the hands and feet. He got on to WebMD and self-diagnosed before he went to his doctor. The doctor said surely he didn’t have Guillain-Barre Syndrome — it was much too rare. Gino whipped out the WebMD printout and the doctor disappeared for a few moments. When he came back, he ordered Gino to get to the hospital — now.

Over the next two weeks, Gino lost function of everything south of his eyeballs. In went a trache tube. In went a feeding tube. In went a catheter. In went two central lines. Lost was the ability to move, to speak, to swallow, to breathe. His immune system had attacked his nerve system — quite effectively.

The advance of the syndrome finally stopped, and Gino was able to move from intensive care to a rehab facility. He has spent the last two months getting reacquainted with his body. As his nervous system reconnects, he is experiencing both great pain and small gains. It’s a cause for celebration when he can hold a cheese sandwich and almost reach his mouth.

Hospital staff love visiting Gino’s room to see his latest tricks. You see, Gino is in a rehab hospital dedicated to spinal and brain injuries. Most of the people we meet there are NOT getting better — they are merely learning how to live in their new normal.

People at this hospital are proof that we are all TABs. An ATV accident changes everything for the man with a 3 year old. A stroke from birth-control pills can turn a 32 year-old woman’s life — and that of her partner — 180 degrees. The trucker who didn’t wear his seat belt will not be able to hold his wife’s hand when she gives birth to their first child this summer.

Gino will be released next month, and is expected to regain most (or all) function over the coming years. He will be once again be Temporarily Able-Bodied.

I am so grateful that I can walk hand-in-hand with my husband. That I can scratch my nose. That I can take in a deep, delicious breath of Colorado air. That I can hold my children and swing them around.

I am not owed my body, I do not own my body. Taking good care of it doesn’t guarantee continued use of it. Made from the stuff of stars and inspiration of the Divine, my body is on loan from the Universe. I am thankful for the small and large things I can do.

I am temporarily able-bodied and I finally get that fact — as much as a TAB can.

Present Tense

You know things are dire when you are hoping for a root canal. If the antibiotics kick in by tomorrow afternoon (fingers crossed tightly), Tessa might be able to keep the tooth stub for a few more years. The goal is to hold on to it until she’s a dental adult. Please continue to think toothy thoughts for us (and thanks for the ones you’ve already sent).

After my middle sister, Sheri, guest posted for me, I also blackmailed asked politely asked my youngest sister to tell how she became a New Age Republican.
Well, that’s half-right. Her Republican part was the same as Sheri’s and mine. But her New Age pathwas not.
From Tami:
So my sisters both speak of life-altering moments when their chakras expanded, their minds enlightened and their 3rd eyes opened wide. So when was the moment I became “one of those” New Age people? What if there wasn’t one?

Being present
Several years ago my life and business coach Bill Brakemeier asked attendees what we wanted to get out of his Embracing Your Potential seminar. I thought the other attendees were more evolved than I was because they all said they wanted to “be more present.” Puzzled, I didn’t know that being present was something I should aim for. I thought that some day I would understand and that I, too, would want to learn to be more present.In the time that has passed I’ve learned that being the last-born — along with the lucky benefits of wearing hand-me-downs, living up to my athletic and intelligent older sisters’ reputations, getting to do my own activities only when there was an opening on the already full family calendar, and getting the last 27 seconds in the bathroom before the yellow Chrysler station wagon left the driveway — being the last-born delivered with it the ability to be present.
Being present allowed me to love the time I would spend with my son Dominic putting together puzzles. It allowed me to find gratitude in the middle-of-the-night wakings. When my grandparents each died, I didn’t mourn their passing with sadness. I celebrated their liveliness. When my husband Gino was so, so, sick, being present allowed me to make each life-saving decision with clarity and certainty. Yes, presence has been quite a gift.
Healing and modern medicine
A gifted massage therapist enabled me to continue my new age normalcy. We called the massage room in her house “God’s Room.” When I broke a finger and the doctor told me I might have to have surgery to reattach my tendon, Suzanne spent night after night after night breaking up scar tissue in my injured finger. When we got the slightest movement out of that finger, she assured me that surgery wasn’t necessary. The doc confirmed her prognosis. This was when I made the jump from “believing” modern medicine wasn’t always the cure-all to “knowing” modern medicine isn’t always the cure-all.Hypnotherapy has helped me manage and alleviate pain. Hypnobirthing helped me bring Dominic into the world, and hypnosis meant the end of chewing tobacco for my husband (an “A-Ticket to Heaven” Catholic). Gino‘s current use of hypnosis is to reconnect his memory to his legs, reintroducing him to the way he used to walk. To neither of us did hypnosis seem at all strange. Among other things, this fell into the category of “won’t hurt, might help.”
And indeed, it does.
The power within
When Gino and I became Body-for-LIFE Champions, I learned the most about my own power. My Grandma (who died 3 years ago today) had always told me I could do anything that I decided to do. It took 12 weeks to prove it to myself. After I lost 30 pounds, 7% body fat, and 7 dress sizes, I became one of those “before and after” stories that people view in disbelief. At the end of 12 weeks I realized that Grandma was right.
This revelation has gotten me through many, many tough situations.Last year when Gino got Guillain-Barre Syndromewas when I most needed to be aware of my inner strength. (It is also when I realized I am still grateful for modern medicine.)Everyday New Ager
I’ve been in the publishing industry for more than 10 years. Deciding what books we could and could not help market, there was always a stack of books on the night-stand. The ones that got read first, and most thoroughly, were on the spectrum of New Age / Self Help. Wine in hand, my business partner Kim and I would enjoy in-depth, after work discussions about the juiciest books. The book industry brought me face-to-face with many New Age notables. I’ve shared a platform with Jay Abraham, Mark Victor Hansen, and Jack Canfield; held the hands of Louise Hay, shared a prayer with Doreen Virtue, and gotten a reading from Monte Farber.
Unlike my sisters, I’m not sure I ever experienced that one eye-opening moment. And oddly enough I still find comfort in the same Lutheran church I attended when I was my son’s age. Does it deliver all of the answers to life and the after life? I’m not sure. But is a good place for my son to learn to believe in something bigger than himself, and how to treat others with love? You bet.
So here ends the story of how my inner beliefs were formed.
Naw. It was probably the time I drove Lori’s car before I had my license and prayed to each and every GOD ever exalted that I wouldn’t get caught. Yeah. That’s it.

OK, everyone. You can relax now. I’m out of sisters.

Wait a second…what was that about my car???

photo, l-r: Tami, Sheri, me. For a slightly older photo, click here.

Gino at 39 weeks gestation

It’s a lame-o pregnancy analogy because it doesn’t fit in so many ways, but I can’t help but think of Gino’s 9-month fight back from complete dependence to nearly being able to walk again as a rebirth.

Brief recap: last February, my sister’s husband had tingling in his hands and feet, which rapidly turned into full-body paralysis — a 1 in 100,000 case of Guillain-Barre Syndrome. Three weeks in ICU with machines breathing and digesting for him, cleansing his blood of the attacking antibodies (in the truest sense of the word) while the dis-ease ran its course; then three months in rehab to help him rebuild to the point of being able to breathe, sit, and operate his wheelchair.

Five months after returning home and having my sister as his caretaker, Gino is just about ready to walk unassisted. Climbing and descending stairs will be the last major hurdle. Then developing enough stability and reflex reliability to drive and write. We’re all planning for Gino to deep-fry the Christmas turkey, as he’s done in past years. And we’re hoping the police department will re-offer him his job within the next few months.

Gratitude. We’ve got it in record amounts.

Happy Thanksgiving, fellow bloggers and readers.
May you be aware of your blessings.

Other posts on Gino’s story:

Our bodies: do we rent or own?
Tami & Gino before Guillain-Barre (with their body-building photos)
Gino on TV
Setback (skull fracture)