By Meg Bernard, SGwP
IT’S OFFICIAL! As of this past Monday I have had 7 emergency J-tube exchanges in 10 weeks; 4 of these took place just a day apart. This realization has me skipping down supermarket isles, giving high-fives to all the shoppers I pass who are, of course, just as thrilled as I am; the supermarket, most definitely, being the first place you would expect find a girl, who can’t eat food, when she’s celebrating.
So, while singing along to Lesley Gore’s “Sunshine, Lollipops and Rainbows”; shaking pom-poms; and doing high kicks; I’ve let my mind wander to hospital visits gone by….whether the visit is planned, or I’m racing full speed to the emergency room, there is a vision that never fails to lazily swim to the forefront of my mind….
It begins with Dr. Joe (I couldn’t use Dr. Smith, as natural reflex would demand, because he exists in the form of my brother-in-law). Dr. Joe; straightening a sparkling white lab coat and pouring that first cup of coffee; greets colleagues with a Colgate smile and a casual ‘hey there’ as they walk by.
Having had a decent nights sleep; with The Carpenters ‘Top of the World’, number one hit from 1973, playing on that ‘continuous repeat’ cycle in the back of his mind; with a distinct ‘spring’ in each step and a decidedly ‘can do’ feeling in the air; Dr. Joe is certain that nothing could ruin this ‘feel good’ moment!
*Enter Nurse Jenny*
Biting her bottom lip, and with a quivering hand, she gives Dr. Joe a tentative tap on the shoulder, “Dr. Joe?” she says in a quiet voice, “I need to talk to you about a change in today’s schedule”. With smile intact, ready to wish nurse Jenny a cheerful “good morning!!” Dr. Joe spins around. Upon seeing the look of terror in nurse Jenny’s eyes, said smile is immediately replaced with a wild look; one which bears a remarkable resemblance to ‘deer caught in headlights’; Dr. Joe’s cheerful words are immediately replaced by,”please don’t tell me….” to which nurse Jenny replies “Yes, Dr. Joe, it’s Meg…”
The scene that follows this moment in my mind cannot be put into words, so for your enjoyment I will let pictures “do the talking”.
First there is…
Followed closely by…
And likely ending with…
Despite the image this ‘witty dramatization” may bring to your mind regarding my history as a patient, I would like to point out “IT’S NOT MY FAULT!” Nor is it the fault of any of my doctors who; if all else failed; would go so far as to hold my Jtube in with Duct Tape or super glue if possible. I’m certain I would have been given the world’s largest ‘gold star’ if these things were based solely on effort. But many, many, moons ago we all came to the realization, that if something CAN go wrong; when it comes MEG; it typically WILL go wrong (no ‘ish’ about it). Hey, a body doesn’t earn the title of anomaly, enigma, and beautifully misunderstood by being super easy to work with; this takes natural talent!
But with all this ‘talent’; the pain, nausea, frustration, tired eyes, sleepless nights, and very tear stained cheeks; comes the question “will this be my last time?” And whether it is or isn’t “how will I choose to live today?” After countless days of intense pain from both Parkinson’s and a feeding tube that refuses to stay put; after countless days of wretched, constant nausea and dry heaving; after countless days of forcing medication via J-tube, knowing that this particular tube could last me a day or (I can only pray) a few weeks; I ask myself again “how will I choose to live today?” The beauty of the answer? This is the one thing, the ONLY thing that I actually get to decide.
It’s on days like this that I often recall these famous words, written by Robert Frost…
“Two roads diverged in a wood, and I—
I took the one less traveled by,
And that has made all the difference.”
Remember my dear friends; live with no regrets; have courage and be kind; refuse to live each day like it could be your last, live like you are living and enjoy each breath!
Much love from The Small Girl ~ Meg
~ Sending eternal gratitude to those doctors who I owe every day of my life to; thank you for the gift of borrowed time ~
small girl with parkinson's 
Megan, once again you have touched my heart. I am a 67 yearold man ,just diagnosed in 2014 who has been suffering from PD symptoms for seversl years, along with three other chronic medical conditions. Josh Robinson, the PD weightlifter introduced me to your blog a week ago and I have already read all your entries. I am hungry for more. Here is what I said to Josh:
“Josh, thanks for sharing Megan’s blog. She shares a lot of our philosophies. I was just telling you about the Slaying the Dragon strategy I teach and how I use it an how I see you do it when you personalize the beast. Well she sees PD as a dragon too. I also was moved by her article about getting stronger after her daily bout with PD. I have been writing and talking about something like that too. I also see myself as being in a punching match with him from the moment I awaken. I am worn out at the end of the day, but surprisingly, I am stronger because of it. Maybe not physically all the time but most of time I am stronger mentally and spiritually. Mr.PD has forced me to become mentally tough and more resilient. This experience has also forced me to renew my focus on such intangibles as faith, hope, love, and service to others. The more focused I am in those basic virtues, the more I am at peace with the disease. Yes we are at war, but I am learning that war and peace can coexist. Megan thanks him. Should I be thanking Mr.PD?”
Warrior Princess, you have inspired me to come up with a Warrior name and to live a Kintsugi life. I am struggling with how to find peace and acceptance with my health especially with knowledge that PD is progressive. You , meg are lighting my path. I just need to keep focusing on faith, hope, charity/love and especially serving others as my purpose in life. I for the time being do that in my business of coaching and mentoring others.
Yes, I still am working,, coaching 40 business owners and I will be using th metaphor with my clients. I first will show a movie explaining Kintsugi then I will challenge each one to identify a problem that was stressful. We will then go back to look at the wound, not to be a victim or lay blame on others, we go back to retrieve the golden nuggets; the skills, the tools and the truth, lessons learned . We take the golden nuggets, and with them, we heal the wound. We find beauty where there was shame. In admitting the shame we become vulnerable, in vulnerability our hearts open. When our hearts begin to open we find peace, joy and love. We Can find treasure where we only saw brokenness.i will credit you for my inspiration.
Ray Brun – warrior name -Draymond Raymond
(Draymond Green plays for the true warriors, The 45-4 Golden State Warriors. He just will not accept loss. He went in
4 years from being a player no one in the NBA wanted to being an NBA MVP candidate. I just want a fraction of his spirit and people like Megan and Josh Robinson for my daily duel with the dragon.
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Dear Warrior Draymond Raymond
Thank you for sending your comments, thereby allowing my to learn from you, a family member and to meet another comrade in arms; our journey’s are different but out battles are the same.
I’m very grateful that the art of Kintsugi rang as true to you as if did to me. I recall so clearly those moments that I would look at my physical self in the mirror; my scars, my feeding tube, the tremors, the rigidity, the cane or the walker, my body slowly wasting away; then I would would look into my eyes and see my emotional scars; which can be summed up by saying “the loss of who I thought I was. Then I would look even deeper; THERE SHE WAS! The princess inside the warrior still lives!!
With much time and work I now delight in the woman I see for she is covered in streaks of gold for I AM more beautiful for having been broken; are each one of us is or can be. I hope that in sharing my experience; it will make a difference in the lives of those you work with. Such joy!!
I feel to leave you with my favorite poet (ok, I confess, favorite DEAD poet), once again Robert Frost…
STOPPING BY WOODS ON A SNOWY EVENING
Whose woods these are I think I know.
His house is in the village, though;
He will not see me stopping here
To watch his woods fill up with snow.
My little horse must think it queer
To stop without a farmhouse near
Between the woods and frozen lake
The darkest evening of the year.
He gives his harness bells a shake
To ask if there is some mistake.
The only other sound’s the sweep
Of easy wind and downy flake.
The woods are lovely, dark and deep,
But I have promises to keep,
And miles to go before I sleep,
And miles to go before I sleep.
(by Robert Frost)
Much love from The Small Girl ~ Meg Warrior Princess
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Yeeeesssssss!!! Just YES! That is all I need to say.
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Virtual high five!!!!
Thank you for your inspiration.
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Meg, Thanks for your thoughtful, kind, prompt reply.You are so right, we are at very different places on our journey, with yours much more physically challenging than mine while my journey tests me even more emotionally than physically, but our battles are still the same. For me, my look in the mirror is while I am doing exercise and I see an old man who can barely get up from the floor, can’t do one plank in good form without shaking or who just collapsed after a two hour hike that used to take an hour recently. Oh how I pine for that athletic senior from a couple years back!
But if I have this right, you would say, “the Warrior Draymond (the heart and soul of my historical NBA Golden State Warriors) still lives inside this worn body! Let me delight this Draymond Raymond whose scars are covered in golden streaks that make me more beautiful and stronger than before being broken. The name of my exercise support team is Shakers and Movers, but at least I am still Moving a lot more than Shaking! Those gold streaks stand for the newly-found mental toughness and resilience, faith inspired by my special small faith community, hope inspired by bloggers and other reading and Parkinsons research and support organizations, love pouring out from wife, family and friends, and leveraging on an abundant opportunity to be in service to others and still be making a difference. ” Truly a Treasure in Life ‘s scars. Thanks again Meg.
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Warrior Draymond;
Dear friend Ray;
You just made this small girl’s day.
Thanks to you, I found some gold shining through.
….this completely and totally unintentionally rhymed. No joke.
Muchness ~ Meg
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