WHEN YOU CAN’T PHONE HOME

Copyright The Japan News Yomiuri

Copyright The Japan News Yomiuri

As I attempt navigating the grief journey once again with the recent loss of my Dad, I think about a recent BBC podcast, Heart and Soul. The episode discussed a small town in Northern Japan-Iwate prefecture. It wasn’t about the horrible damage sustained from the earthquake and tsunami that took 2,000 lives in 2011. Instead, the podcast focused on the love that their surviving residents have for the loved ones they’ve lost. Even though their loved ones are not here physically, residents have a unique way to connect with them.(There’s also a great NHK program about this topic).

In Iwate, a white telephone booth overlooks the sea in Itaru Sasaki’s yard. Yes, an actual phone booth with a rotary phone (not connected ). In Japanese it’s called “kaze no denwa” meaning phone of the wind. A sign greets you as you enter the phone booth with the words, “Welcome, I’ve been waiting for you.”

Sasaki-san actually began building the booth, when his cousin passed away in November 2010 and finished it shortly after the 2011 tsunami. Since then, over 20,000 people have visited to connect with their lost loved ones. I imagine that in such a digital age, the very act of using the rotary dial gives a calming mindfulness before sharing pieces of their heart.

Listening to the podcast, two memories came to mind. The first, took place when the woman I knew as my Grandmother passed away in Japan. My Mom and I would call my Grandmother’s number and just listen to the familiar ringing across the ocean.We pictured her picking up the phone and saying hello to us. It was our way to let her know we still were thinking of her. We needed a connection. I also remember the somber day when I called that number and heard the message that the phone was no longer in use.

My Grandmother & I, Tokyo. Copyright KathleenBurkinshaw

My second memory is that I saved one of my mom’s voicemails so that I can still hear her voice and ‘speak’ with her whenever I want/need to.

When my Dad passed away 11 days ago, my Reflex Sympathetic Dystrophy (RSD) pain flare prevented me from going up north to see him in the hospital. However, the wonderful nurses kept me updated by phone. More importantly, when hospice services commenced the day before he passed away, I had a God-Nudge(instead of a ‘God Wink’), for lack of a better word, to call him. When I did, the kind nurse held the phone to my father’s ear for a 15-minute conversation. Well, not exactly a conversation, I mostly babbled on about memories of my childhood with him and my Mom. He did respond and it was the last real conversation I had with him lucid. My daughter also had a chance to speak with him.

On the morning of the 31st, I called to check on him. I spoke only a minute or so with him. He was drowsy from medication yet, zealously enjoying an orange Popsicle. His favorite flavor. 😊

Later that day, I experienced another overwhelming God-Nudge to call and check on him. The nurse said all vital signs stable, he was resting comfortably, and nothing may happen until the evening or the weekend. Still, I asked if she would hold the phone to his ear so I could speak to him. She did and also held his hand, giving him the feeling that I was physically at his side. I had a chance to say who he’d be seeing in heaven and some things I didn’t get to say in the past few years we were estranged (his choosing not mine). I told him I forgave him (I meant it), loved him (I loved him, not his choices), and would always be his ‘little girl’. And to the shock of the nurse, he went to heaven right then and there.

copyright KBurkinshaw

As devastating as that moment was, I like to think that he waited for me to show how much I meant to him. To show me that he loved me despite some of his actions in the past. It’s a blessing for me and what I try to remind myself of when guilt for not being there rolls in. I am now dealing with anxiety attacks and the memories of the last few days with my mom have returned with a vengeance. It feels like I am losing her all over again along with my Dad.

However, the most difficult realization for me is that the two people who brought me into this world are no longer here. It can be like a punch in the gut without warning hitting me at any point during the day, or night. I know and cherish that I have my loving husband and daughter, a loving extended family and friends, but it’s not the same connection. There’s a hollowness in my heart right now, that I know, in time will fill with the loving memories instead of breaking from the trauma of losing them. I remind myself and find solace in knowing that Jesus knew me before I was born and is always with me.

 

So, I may not have a “kaze no denwa”, but that doesn’t stop me from talking to them during the day and/or night. I hope my messages of love and how much I miss them swirls upward to my family in heaven. I take comfort that someday in the distant future, I will hear my parents say, “Welcome, I’ve been waiting for you!” ❤

In memory of David Hilliker 12/29/1937 – 5/31/2019- Airman Second Class and Crew Chief of 90th bomb squadron, US Air Force, loving husband, Jet Mechanic/Quality Control,Park Caretaker, and loving Grandpa. But most importantly- my Daddy ❤ ❤

Copyright KathleenBurkinshaw

 

I’m also sharing this post at:  Welcome Heart.

 

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4 Must Have Items On My Vacation Packing List

  1. Ibuprofen (Check)
  2. Clothes for any possible temperature(Check)
  3. Audio book downloaded (Check)
  4. Night-light (??)

Yup night-light. I’m not afraid of monsters under my bed, more of what goes bump in the night- like me- right into a bathroom door in an unfamiliar place.

I don’t sleep well when away-extra pain from travel, bad mattress, etc.so when awake, I use the rest room. The bathroom wasn’t far and I didn’t want to turn the big light on and wake my husband (occasionally I’m considerate like that). I thought I’d walk in safely by doing -you know- the zombie walk- with arms (or for me one arm and a cane) out in front, and, BAM! Walked right into the door. Now, I needed ibuprofen that I unpacked in the kitchen earlier.

While doing my best Ninja impersonation sliding up against wall (to avoid anything that might be in my path) from the bathroom to the bedroom door leading to the kitchen, it dawned on me-my phone has a flashlight! Once again, I prove that owning a smart phone does not necessarily mean I’m a smart user. Anyway…

I knew I wouldn’t fall back asleep, so I decided to read in the living room. For Christians it’s the season of Lent and I brought the book, Whispers of Rest, by Bonnie Gray with me. I first discovered her blog posts on (in)courage and felt a connection through our Asian American heritage. Her words drew me in and keep me inspired. I enjoyed her short daily chapters that ended with reflection questions. I answered them in a notebook, and then extended it to writing scenes for my current manuscript drafts.

That morning’s journaling along with my recent door ‘incident’, had me realize that I was searching blindly for any remedy/solution for the extra pain from my newer medical issues. I desperately wanted to at least feel the age I am instead of 30+ years more and feared the progression of my RSD symptoms. On the writing front, I had been researching for my manuscript drafts, yet still not sure which direction I wanted to go with them. Instead of hitting the proverbial wall, I hit a door (you know I’ve got to be different) 😊 Not that morning’s actual wooden door kind, but the exhausted, anxious, conflicted, pain filled, and defeated door-which hurts a heck of a lot more. It’s harder for me to open and walk through, that’s for sure.

You see, before our vacation, I felt depressed and worried that I wouldn’t enjoy our daughter’s last Spring break with us (she’s graduating from college in May-Wait, WHAT?!) 😊 My pain level prior to it made it difficult to leave the house for doctor appointments, let alone going somewhere fun. Thankfully, Hilton Head’s temperatures were much warmer than NC’s and we spent more time just being together than going places. However, we did see Captain Marvel (AMAZING Movie!!) but more importantly all of the cinema’s seats were recliners, Y’all! Perfect to keep my leg from swelling!

This year our mom/daughter beach day tradition began with a light breeze, warm sunshine, and hardly a cloud in the sky. As I watched and listened to the swishing of the lightly foaming waves reaching the shore, my body relaxed, and I sighed. It was as if the refreshing ocean air pushed out all that fight or flight that’s been stuck churning inside me in that one exhale. That’s one of the reasons that the beach is my happy place.

I love that I can’t see what’s beyond the horizon-reminding me that possibilities are endless. Something I easily forget. Later we watched two dolphins jump in and out of the water, almost as if to remind us it’s okay to take time to play without any other porpoise (sorry, couldn’t resist) in mind. The quiet moments just sitting with my daughter on our beach towels cradled by the warm sand, are just as precious as our conversations. I marveled at the fact that she was no longer the little girl wanting to build sand castles, but a young woman about to graduate college and start building her own life (although she still relied on me to pack the sun screen, water and snacks for the beach) 😊

Lately, my paths shifted way too often from the direction I originally intended. I had no control over which doors would slam shut. But I’m starting to realize it’s not necessarily a bad thing. Even if it may feel that I’m blindly walking into doors when I could have used a flashlight to light the way. Hindsight is always 20/20. Some days it seems I’m failing at each opportunity I step toward, and I think maybe I should just stop trying, already. But if I keep stepping forward, (okay, more like stumbling forward), on a different course than what I’m comfortable traveling, somewhere along the wall I eventually find a door and choose to step through it.

Sometimes what’s on the other side of that door, may be a blessing/success others will notice, but the more important ones are usually felt in our heart. It might just refresh my soul-allowing me to create, not for perfection, but just to enjoy creating for myself in the moment.

This feeling of contentment may not announce itself with a parting of the clouds, or bright light “Alleluia!” moment. Instead, it’s in the quiet form of a hug from a loved one, lunch with supportive friends, an inspiring comment to a blog post I wrote, a student telling me the story I wrote about someone I loved touched them deeply, or the comfort of just sitting on the beach next to my family. I will have times when no matter how much I prepare or how frantic I may feel; I cannot control or foresee all possible outcomes to a situation-that’s where prayer(flashlight) comes in. Although, I still highly recommend packing a night-light.

What would be the top 4 items on your packing list?

 

I’m also sharing this post at:  Welcome Heart.

 

 

 

 

ESCAPE PLAN

I recently visited an escape room for the first time. If you haven’t been it’s a venue where you choose a theme location you would like to attempt your escape from. Being a fan of mystery novels, shows like Psych, Murder She Wrote, Columbo– basically anything on Hallmark Movies and Mystery Channel-I chose a murder mystery theme (I’m nothing, if not predictable). We arrived early and while we waited, I glanced around the reception area’s walls decorated with signs of the success rate of each room- ours was much lower than I anticipated.

In addition to that, we were only 3 people, so we joined a party of 5(all younger than us and some who had done an escape room before). But I wasn’t too worried, I mean, as I said I’ve watched every episode of Psych, Murder She Wrote, Columbo-more than well, let’s just say a lot, and as a child,I wanted to be Nancy Drew😊

I also knew that if we were stumped, we could request assistance. They (in this case employees) also watch you the entire time, can hear your discussions, and will jump in if they suspect you’re really stuck and too stubborn(embarrassed?) to ask for help. Oh! An important fact- you have only one hour to solve and get out of the room. Now, an hour may seem like a long time (like when waiting for brownies to bake), but when you are racing against a clock trying to win something it goes by as quickly as the flash of lightning that started off our murder mystery. And yes, the lights went out after our initial blast of thunder and lightning. Lights came back on, butler dead, and told that you must figure out who did it and how; or else you’ll be the ones arrested when the police arrive in one hour.

You start searching for clues, and some gave access to a couple of secret rooms-which was super cool! One thing I will tell you-if you need reading glasses-Y’all know who you are-remember to bring them-no I didn’t forget to bring mine with me. But I did forget them in my purse- in the locker outside our room (my husband, the Eagle Scout brought in his). And wouldn’t you know there were at least 5 places you needed to read combinations in teeny tiny letters/numbers. So that took my friend and I out of those clues entirely-not to mention making you feel older than you already do. But I digress….

Today they’re so many ways we can reach out to people all over the world, yet, we are mostly by ourselves and rarely engage face to face with others.  So now, you want to have fun, no phones allowed (which I liked), but also must work together with people you do not know. You must depend on hints they find and have confidence to state yours.

I found myself not always speaking up until I realized that it was me, they were going to arrest-yup, always be suspicious of the woman with the cane wearing cute shoes. Luckily, since they were watching/listening and the people we were with were very close to solving, we received an extra 2 minutes. We escaped and could say we (well, to be fair, the other 5) conquered that room!

I guess that’s kind of how I could sum up the months of January and February. I made it out. But only with the help of loved ones and with God watching over and guiding me through it all.

This past January marked 5 years since my Godfather (who was like an older brother to me) passed away, my husband’s grandfather passed away (a wonderful man who was 102 years old), and it all centered around my mother’s 4th anniversary. If that wasn’t enough, the cherry on this sundae of grief:  being ushered into a decade that I wasn’t really looking forward to entering. I spent a good part of the last few weeks in constant fight or flight mode. I felt uneasy, had panic attacks, and lost a lot of sleep (to dreams of my mom’s last moments in hospice).

This Valentine’s Day marked 18 years since a romantic restaurant dinner turned into peanut butter crackers and a can of soda in the ambiance of an emergency room. The Deep Vein Thrombosis(blood clot) with an easy 5-day hospital stay morphed into 31 nightmarish days and ended with a diagnosis of Reflex Sympathetic Dystrophy (RSD)*. The horrible dreams that kept me up this month were about my time in the physical rehab hospital. Because at that time I was one of their youngest patients, staff placed me with an elderly woman and asked to watch her for them. Being a people pleaser, I of course, said yes. Let’s just say that the day I caught her smoking in our bathroom-did I mention she was on oxygen?  I lost it. All I could think was I survived a DVT in two places that nearly killed me only to be blown to smithereens at rehab! True story.

I also know that 2019 is a big year for changes. Not just my age, but my daughter is graduating from college and most likely will move away for a job. I worry about my new pain issue that the stent didn’t alleviate, and I need to find a focus for my writing. However, I have hope that I will walk through (okay limp through) this season of change and escape to the next year successfully, because of the people in my life and the strength God will give me.

❤ Thank you to my family, my friends near and far for their love, birthday wishes and going out of their way to make it a special time for me. I love you all very much. ❤

*RSD (also known as Complex Regional Pain Syndrome) is a chronic, progressive nerve pain disorder. The sympathetic nervous system and immune system go haywire causing burning pain long after initial injury/damage has healed.

Also will be sharing at: Welcome Heart.

 

 

 

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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There’s No Place Like Home

I have lost most of June and July to surgical procedures and complications. The surgical procedure was planned yet the hospitalization afterward, not so much. Well, that’s not exactly true, the doctor said it might happen sooo… with my medical luck I should’ve known I’d probably be hospitalized (my less than 1% rule) 😊. However, I did not plan for the intense myriad of emotions I encountered in that 24 hour stay.

My anxiety level was off the charts. All the helplessness and fear from 17 years ago rushed back in like they never left. The difficult memories of the hours spent at my mom’s bedside three years ago (during the last few months of her life) stopped in to chatter as well.

Some of you may know that hospital beds are not comfortable AND if you want to sleep, a hospital is a place to get better; NOT the place to get rest 😊 I felt very alone(even with the various nurses coming in and my anxiety to keep me company). I worried something else would go wrong and I’d be stuck with a longer stay(just like 17 years ago).

Thankfully, the surgeon discharged me the next day. I was thrilled to be home, yet I was on edge. I couldn’t sleep. I was in a lot of pain. When they found another blood clot in the Ilial vein 4 days after surgery, I realized I had no control of my recovery. Luckily no hospital stay, I just had to give myself Lovenox injections. The day I gave myself my first shot, the panic attacks began. (Thankfully my therapist will do phone visits with me, when I can’t easily leave the house). I wish I could say, I spent the time working on my manuscript. Sadly, I could not focus. That frustrated me to no end.

But, the Lord answered prayers(thank you everyone) over the last couple weeks, because the acute, intense pain from the Ilial vein blockage has started to ease(thank you stent), I’m closer to just my RSD pain level(can’t believe I’d ever be happy about that)😊, and my left foot’s blue shade has faded to a lovely aqua hue. I’ve started writing/researching again. My stamina is not where I’d like it to be yet, but I have an incentive to work toward…

My daughter will finally be home on Tuesday 31st!! (Yay!) 🙂 She completed her 4-month semester at Tokyo International University in Japan. It will then be a 2 ½ week mad dash until we bring her to Wilmington to start her senior year at UNCW! But she will be in her own bed at home with us for those 2 ½ weeks.

Sara and host family at summer festival wearing yukata(light summer kimono)

I would love to say I handled her being so far away in stride and that even when earthquakes were reported near Tokyo (there were two) I was calm, cool, and collected…Ha! Nope, more like tense, scared, and terrified. I worried and missed her A LOT. It took(and still will until I can hug her) a lot of praying and faith that she would be safe, meet nice people, enjoy herself-oh and learn Japanese at the same time! Although, it helped knowing she’d have angels watching over her-especially my Mom.

Sara thankfully, escaped natural disasters in Japan. However, a place close to her, my mother’s, and my heart-Hiroshima- has not. On July 6th heavy rains caused horrible flooding and mudslides in Western Japan affecting Hiroshima, Ehime, and Okayama.210 people are dead and 14 still missing. Extreme heat hinders the clean-up and searches.Last week 1200 people were still in shelters in Hiroshima and many homes were still without running water. The flood and mudslides damaged some schools. They’ve lost textbooks and supplies.

Hiroshima flood copyright CNN

I’m waiting to hear back from the school in Hiroshima that recently did something wonderful for THE LAST CHERRY BLOSSOM (more about that in a future post) to see how I can help them. Please keep the people in these regions and the people trying to help them in your thoughts and prayers ❤ ❤ ❤

(People have asked me if there is a way to donate money to this area. The US-Japan Council and Japanese American Citizens League have organized the Japan Floods Friendship Fund. If anyone wishes to make a tax-deductible donation, please visit this link: http://www.usjapancouncil.org/japan_flood_friendship_fund.)

Thank you so very much. ❤

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On This Mother’s Day

Since my mom passed away, Mother’s Day seems to sneak up on me. I admit that I still turn the channel if a Mother’s Day commercial comes on-I just don’t have enough tissues in the house 😊.

This Mother’s Day is the first one (I’m sure of many) when I’m not with my daughter. We are still adjusting that she will be studying in Tokyo for another 3 months (although, the first month seemed to whizz by). But thankfully the ability to video chat and text her through the LINE app on our phone without any cost, helps a great deal!

I remember my very first Mother’s Day-my daughter was 6 months old and she sat up by herself for the first time-I of course convinced myself that she waited to do that just for me, on that day. I also remember my Mom thanking me that day for giving her a granddaughter to love.

I remember the Mother’s Day a few years later, after I had spent so much time very ill in the hospital with the debilitating blood clot, my then 4-year-old daughter gave me an adorable handmade card of a heart. Inside the heart she drew a picture of her and I holding hands-best stick people ever 😊 When she handed it to me, she hugged me and whispered in my ear, Thank you for not going to heaven. I can’t even……. ❤ I don’t think I could ever truly put into words how my heart felt at that moment.

On this Mother’s Day, the Japanese Wi-Fi refused to cooperate, and we could not video chat. Instead, we used our cell phones to have an actual conversation (seems like we use them for so many other things like texting or reading instead-I’m not alone in this, right?). Later that day, she emailed me pictures from her recent trip to Hiroshima with some classmates. One picture in particular- the Peace Bell in Hiroshima Peace Park stood out to me.

This bell designed by Masahiko Katori in 1964 displays a world without national borders embossed on the front.  The wooden beam strikes the atomic energy symbol carved on the bell, representing the end of nuclear weapons. Because each strike represents a message of peace to be heard in every heart around the world, there is also a mirror that reflects the person (their heart) ringing the bell. Inspiration for Yuriko’s words at the New Year celebration in THE LAST CHERRY BLOSSOM, “But with each bong I sat wishing, Peace, peace, peace…”

Looking at that picture of Sara striking the Peace Bell with love in her heart for my Mom, the family members we lost, and all the victims touched my heart and gave me such a feeling of connection-like a warm hug from my daughter and my Mom.

Perhaps another reason this Mother’s Day snuck up on me is that I’m recovering from a surgical procedure. Turns out, having your Ilial vein constricted by your Ilial artery in your pelvis, is actually a thing. It’s called May-Thurner Syndrome.  Unfortunately, the angioplasty done last week, isn’t working as the doctor had hoped. So now the next plan is to put a stent in that vein in June.  It’s not an urgent matter, just means more time with the extra pain,swelling, and my foot turning a lovely shade of sea green(but, maybe an excuse to buy more clothes that will match it, yeah? 🙂 )  I haven’t exactly gotten past the frustration and disappointment about needing the stent, yet. It will probably take one more round of crispy rice treats…

However, I have an upcoming event that I’m looking forward to speaking at- Animazement in Raleigh on May 25 and 26th (which, if my husband is reading this post-is our 27th wedding anniversary weekend-just sayin’). Attending the event has been in the planning stages for several months and I’m honored that they invited me. Plus, waiting a few weeks until June, will give my body time to heal at the incision spot. I always fear that the RSD burning pain will develop at an incision site. But, so far so good and I hope that with some time in between to heal, it will be the same after the stent procedure.

Because of these recent events, I did not get cards out. So, I would like to say that I’m so very grateful for all the women in my life who have been(but are no longer here) and are like another mother to me now. I’m forever grateful that I had so many wonderful years celebrating my Mom on Mother’s Day with her and that I’m blessed with a loving daughter to celebrate Mother’s Day with me-even if this year it’s from the other side of the world with the striking of a bell.

Wishing all Mom’s and people who are “like a mother” to someone they love, a belated, yet a very Happy Mother’s Day along with a warm hug! ❤

 

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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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