Behind the Mask

(Halloween/Fall wreath I made last year)

One week out from Halloween, a day when people put on another face or personality, I thought about how much we sometimes pretend to be something that we’re not-or when we push something to the side instead of facing it(okay, it’s really about how much I do this). It’s been my theme for the past 12 months after the spinal cord stim (SCS) surgery(October 2017). With each medical procedure (to bring you up to speed, there were 3), I expected to be a step toward feeling better. Yet, other physical issues cropped up and a few visits from my old friend DVT(a.k.a. blood clots), had pretty much zapped away any strength or writing focus I have been grasping in my cold arthritic hands.

Please don’t get me wrong, I did have some fantastic news (TLCB being nominated for N. Carolina and Tennessee book awards!) and opportunities (most recently-my 1st time as an Author Moderator at ReadUp festival, SC) in 2018 amidst the various health issues, of which I’m very grateful. But pain has drained my energy and for each fun opportunity, my recovery period lasted longer than the time before. This is one of the reasons, I haven’t written a blog post in so long. I didn’t feel very creative and I didn’t want to sound so negative or ungrateful. Usually I like to share how I’m dealing with the difficulty and quite frankly I am still searching for a way to get through all this.

Being able to honor my mom while discussing The Last Cherry Blossom (TLCB) with students and knowing that I may have played a small role in their understanding that nuclear weapons should never be used again brings joy and meaning into my life. I have no regrets devoting my energy to that. However, I’ve also come to realize that when I’m doing school or conference visits, I’m unable to devote quality time to research and writing. I must confess that I’m disappointed that I can’t do both, as I originally intended. If I’m really honest with myself, I’m extremely ticked off that Reflex Sympathetic Dystrophy (RSD) brought my career to a halt 17 years ago and now that I thought I found something I could do, the progression of RSD may take that away as well. (it seems that my RSD pain is spreading to the incision site of the stent implanted in June-heavy, heavy sigh).

There have also been other factors causing me to question how I will proceed with writing. As some may know, this past spring the parent company (Skyhorse Publishing) of the imprint that published TLCB (Sky Pony Press), reduced the number of books it will be publishing annually, and their reorganization laid off the editorial staff of Sky Pony Press. So, my hope of a sequel to TLCB, to which I was devoting my time and energy, when I had it, is now looking less certain.

Any self-confidence I had evaporated. Insecurity and the awful feeling that I’ve let people down quickly swooped in to replace it. I’ve been pushing these feelings aside for the past months and pretending everything is going well. I mean, if I say something long enough, it becomes true, doesn’t it?  Sort of like if I keep saying when you eat crispy rice treats straight from the pan, there are less calories-don’t judge. 😊

I do have other ideas for manuscripts and have even started researching/writing them. Yet the story my heart yearns to tell is the one of my main character, Yuriko. How she is trying to find meaning for her life and dealing with symptoms of PTSD, while living among the soldiers of the US Occupation forces and without her Papa.

I’ve been trying to figure out how to acknowledge the fact that my health may not get any better than it is right now-and may even be getting worse. I’ve been praying. I’m reminded that with God all things are possible and that He is made stronger in our weakness (I know I gave Him one huge energy booster shot over the past year). I don’t like change-but then again, who does? So, I decided to write this post while I’m still in the mess of it all. The feelings are no longer put aside and hidden with a smile.

(EEK! A mask on building in Izu from our visit in 2015)

I hope I can gain a little more of my pre-surgery physical and emotional strength back. And you can be sure that I will keep visiting with students (I just may have to do more Skype visits). But I need to work on accepting the fact that an instant solution to all this will not arrive gift wrapped and tied with a sparkling bow-oh, but wouldn’t it be cool if it did?! 😊 So, the mask is off, and hopefully I won’t scare anyone away while I’m waiting.

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IN RARE FORM

A unicorn in rare form-w/cherry blossoms-one of my writing mascots 🙂

The month of February had me feeling like I moved backwards-and I don’t mean just a couple steps backwards. No, I’d say it’s more like giant leaps in reverse where my health and my writing were concerned. I’ve tried to do what I thought would help me, expecting one outcome and then it didn’t go the way I really thought it would/should(perhaps I’m a smidge of a control freak,yes?). Sometimes I can pick myself up and move forward. At other times, well, let’s just say crispy rice treats, chocolate, and a few muffled screams in the linen closet are the only remedy. February was definitely a month of  “other times”.

So, it’s fitting that last Wednesday was #RareDiseaseDay on the last day of February. Rare Diseases Europe (EURORDIS) and the Council of National Alliances began this movement in 2008(a leap year, which is also rare-hence the play on the name) to raise awareness and represent 30 million people affected by over 4,000 rare diseases worldwide.

Rare Disease Day in Hiroshima 2018

The United States began participating in 2009. In the U.S., a rare disease is defined as affecting fewer than 200,000 people. I’ve mentioned before that if there is a less than 1 percent chance of a medication side effect, then you can bet I will experience it. So, the fact that I have a rare disease like Reflex Sympathetic Dystrophy is probably not a surprise to most people who know me.

RSD is also known as Complex Regional Pain Syndrome (CRPS-or as I sometimes call it- “the craps” 😊). But since I’m old school and have lived with it for 17 years, I still refer to it as RSD.

The theme for this year’s Rare Disease Day is right up my alley-RESEARCH! Hopefully, by raising awareness that these 4,000 diseases exist – more funding will be made available, patients would get diagnosed earlier, and more clinical trials could begin to ease the symptoms or better yet, cure the rare disease!

I’ve had many, many, many visits with various doctors over the past 17 years. Most have been very compassionate and helpful. However, there were a few that insisted it was either “all in my head” or that “I’m a malingerer”. It seemed that if that physician hadn’t heard of RSD, then it didn’t exist. I would leave there thinking well, if it didn’t exist, how does that define me? If they wouldn’t take the time to learn about my symptoms, or about RSD- how could they possibly understand what the pain had taken away from me? I had become a shadow of my former self, and now they wanted to make me completely invisible.

However, since I’m more shall we say… experienced, I’m not as afraid of speaking and standing up for myself. I can look back and see that after the diagnosis, God blessed me with a different path. A path that has many wonderful new possibilities, but also can be quite rocky at times.

I have been stumbling along on the rocky path since my spinal procedure in October, I haven’t quite yet gotten back to my “normal” pain level. There have been issues with medication side effects early on and two weeks ago some new ones cropped up (perfect example of my less than 1%). These debilitating symptoms prevented me from doing anything but hurt, so I had to switch back to an older medicine that I knew I could tolerate(Warfarin), even though it meant routine blood tests and other accommodations. As they(whoever “they” are) say, sometimes newer is not always better.

Because of the newer side effects, I withdrew from a conference in early February, which I was really looking forward to speaking at/attending. It bothered me a lot because I hate giving in to the pain. I’m slowly getting some energy back and look forward to presenting for the first time at the South Carolina Association of School Librarians next week(March 16th 8:30am at the Hyatt Regency in Greenville, SC-for any SC school librarians who might be reading this) 😊

Recently, a few things helped me navigate my rocky path: two friends each gave me beautiful, timely devotionals, and I received a letter sent to me by a student in New York. I love getting snail mail and it was handwritten-a twofer! It wasn’t just that he read the book and liked it a lot (although I do take some pride in that-not gonna lie), but that he took the time to write me, and had discussed scenes from the book with his teacher that he found impactful.

I’m so very grateful for the rare gems sprinkled in between the jagged rocks that encourage me to continue striving so that I may be in rare form (in a good way) despite my pain.

I have some people in my life and there are also way too many people lately in the news that are dealing with an overload of rocks in their path, so I’m going to do my best to find ways to be that rare gem and maybe give them some inspiration knowing that they are being heard and are loved.

“We know that reading-and reading widely-helps breed empathy. We know that children find comfort in books. That they seek refuge in fiction and poetry. And we know that literacy skills are essential to helping people make sense of the world.” From LITERACY DAILY blog, if you would like resources on how literacy can help stop the hurting: literacyworldwide.org/safeschools  or  Letters to Parkland and Beyond.

 

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