~ by Meg Bernard ~ Small Girl with Parkinson’s
I have a station set up in my bathroom where I have all the tools I need in order to sit and crush up all of the various medications I take to help treat the symptoms of my Parkinson’s disease; or any other medications I may be needing to take at any given time. I mix these crushed medications with water, turning them into suspensions which can then, via syringe, be injected into my intestinal feeding tube. It has to be done carefully and properly and it has a tendency to be slightly time consuming, yet I am grateful for this life-saving gift.
I keep the area I work in tidy, clean and organized; it reduces the risk of a mistake and it makes my job a lot easier; BUT there is one thing that I always do that tends to make my space look slightly more chaotic than functional…
You see, I learned early on in my ‘tube feeding career’ that spills happen often, and I discovered that blue dry-back dental bibs work as a perfect cover for my workspace! Each day I pull out a new one and place my tools on top of it, tidy and ready for use. BUT, I also learned something else about the blue dry-back dental bibs; they are PERFECT for writing on!! It is on these dental bibs that my chaos is created; I can’t help but write down my thoughts, appointment reminders, items that need to be purchased, questions that come to mind or things I simply want to learn more about. As each bib becomes covered in words, it also becomes my version of a masterpiece.
A few days ago, as I was letting my mind wander, I scribbled down a thought; a combination of questions actually; on my dental bib, and as I stared at the words in front of me I realized that I wasn’t sure of the answer. Perhaps I could make up an answer or two; something generic and ‘all purpose’; but ultimately, seeing as I couldn’t genuinely answer the questions when I asked them of myself, how could I, in honesty, answer them if they were asked of me by a friend or acquaintance. These are questions that have plagued me for years and I have a feeling that many of you may feel the same way.
I took a picture of the words on this particular ‘dental bib’ and decided to share the photo with you. Perhaps if we work together we can come up with an answer; or perhaps there is no answer; in which case at least we have the comfort of remembering that we are not alone…we’re all in this together…
Much Love ~ Meg; SGwPD
small girl with parkinson's 
“How are you feeling?”, the standard from the friends and loved ones who care, but can’t begin to understand. While the thought is never unappreciated, I rarely answer honestly. It’s usually the quick smile and “good!” in as bright a voice as I can manage. It is however, probably the most important question we can ask ourselves, because the answer to the second question, “Are you well?” is unfortunately, much simpler. The answer is “No.” because we are not well. The way I look at it is this: Because we can’t really do much about the answer to the second question, we need to put all of our energy into the first. “How are you feeling?” refers to the present tense, which is really where we should be focusing our very limited energies. It’s so cliche to say “live for the now” or “carpe diem” but it really is true. For me personally, this has become more about taking care of others, my kids and my fellow Parkies in particular. It’s hard for us to keep going just for ourselves, but when we commit our actions for the benefit of those we care about or share a bond with, it almost becomes an obsession. The drive to thrive and be able to answer “I feel good!” with a healthy measure of truth becomes (almost) easy. That’s how I approach finding an answer to your dental bib question anyway. I’m pretty sure from reading some of your sentiments that you’ve taken up a similar philosophy. But the important thing is your final statement, we are in this together. There’s something that I’ve noticed since joining our facebook group, and I see it in almost every picture. There is a sadness behind the eyes regardless of the smile and that smile is usually held up by grim determination. (hmmm…I should blog about this, but feel free if you like 😉 ) It may be absent from the little 8 year old girl with dystonia’s eyes, but I see it in her mother’s. Surely we recognize it on the faces of the ever-jovial Keith and Ian, and even behind the impossibly bubbly smile on Erika’s adorable face, we see the tiniest touch of sadness in those baby blues. So when my friends roll their eyes when I say, “I truly worry about being alone for the rest of my life.”, you understand. When your friend told you what she saw in your scars, we all felt those tears and every one of us identifies with Brittany’s moment of diagnosis selfie the same way that we exult with the success of Jasmine Sturr’s DBS.
I realize with a chuckle that, looking back on my actions over the past few hours, that I have bombarded you with responses, comments and the friend request. My inclination is to apologize, but I really can’t. Instead, I’ll say I hope you understand. When I feel moved, I share it. As a PwP who has gone this extra mile of exposing my wounds and fears for the education and betterment of my brothers and sisters, it has at times felt pretty lonely. When I saw a fellow wordsmith behind a WordPress link in the group I was excited, but then, reading how often your philosophy tracked with mine, well I can’t really describe what that did for me (reassurance, comfort?) but the effect was profound. I’m not afraid to say I hope I get the chance to know you better, be that through this blog or any other way. People often compliment me on my strength, be it physical or spiritual, but I’m in awe of yours in light of all that you’ve endured already in your fight. I hope that when my courage is tested on the field, rather than in facing down my future, it bears up and shines like yours does. I hope on that day we are still friends, because you are a light. Keep shining.
(Oh boy! Reading all that back I almost don’t want to hit send. I can get pretty dramatic when moved but dayum! Oh well, it’s all true and besides, you more than anyone else knows how much work it was to type all that 🙂 and now that I have lightened the tone enough, I can comfortably hit )
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I had to give a quick thank you.
I still have a few for hours of sleep in me (at least I better have) or I would give a full on reply. But I couldn’t do it justice now. But thank you!
I believe you friended me on FB. I will likely reply through messenger. So make sure you keep your eye open on a message from me.
Meg
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