Be it like a BOSS!!

Okay... so..... I think that MANY would agree with me when I say that this year of 2020 has been proving kind of a rough deal. For me, personally, it started out harsh even before the whole COVID-19 takeover with a hard-hitting ear infection setting in on the 1st of January and directly followed that up by cracking a quarter off of a molar... and tooth loss is my greatest fear. So that was some extra and unexpected fun on top of everything else I’m still dealing with in healing...🙄

Anyhow, it was only a couple of days out from my last IVIG treatment days when I had another appointment to get to, the appointment had been made before I realized it was so close after treatment time but I figured I would be feeling better enough by then to get the brutally dreaded dentist appointment over with. I had already been angsting horribly for the prior three weeks just in knowing it was on the horizon and the thought of putting it off and angsting for even longer just didn’t have any appeal for me. When dentist appointment day way too quickly rolled around, I really didn’t feel up to going; it takes me a good seven or eight days to get back to feeling strong and clear-headed after my treatment days and I was only on day five. But I wasn’t going to let myself cancel. Like I said, tooth loss is NOT something I want for myself. When I had actually broken my tooth I was given an emergency temporary fix and I knew it would have to be properly fixed shortly thereafter but with having to work around my treatment schedule it wasn’t easy to get an appointment that worked with the dental office that is almost always booked overly solid. By the time my appointment had rolled around, the world had closed down due to COVID-19 and my tooth fix was put on hold indefinitely. But at last... there came appointment day. I knew I had to go to the dentist. I don’t like going to the dentist. I didn’t want to go to the dentist. But I was getting ready to go to the dentist. And I was spending that morning trying to unknot my tummy and hold back my fears even as I felt the tears beginning just simply from being tooooo tired from my body still fighting itself from my treatments.

Despite the teary exhaustion, the day really had started out fantastically... My boys (two Greyhounds) and I had had a quiet breakfast outside in the breezy screened room. And the summer heat/humid wave of horrendous had broken in the night which made for a morning juuuust cool enough that I could wear my ‘security-blankie’ jean jacket to the dentist without melting.

Then just when we were heading back inside the house after breakfast so I could get dressed to go, the telephone rang, it was the dental office Receptionist...

“Hi Gillian, I just wanted to call and let you know that the elevator is still not working... I know the stairs are really hard for you so if you want to, we can just reschedule your appointment for a few weeks from now and hope it’ll finally be fixed by then?”

Well, I can’t even begin to tell you the wave of relief that washed over me with that phone call! I had not only an ‘out’ of my dreaded appointment BUT a totally legitimate ‘out’ that I didn’t have to make happen on my own! I was saved. I was given sweet reprieve. I was seri’sly golden!!

All I had to do was say ‘yes, please, let’s just reschedule...’ and I could just go and crawl back into my comforting bed to sleep of the rest of my IVIG ill-effects. That’s what I opened my mouth to say....... but that’s not what came out.

“Nah, that’s alright, Imma TAKE those stairs like a BOSS!!”

And then, with the complete silence that followed my idiot statement, I realized what I had said and felt my heart beginning to race in the sudden and burning panic setting instantly in.

“I mean... I mean *gulp* I mean...” I stammered on even more idiotically, “I mean, I’m gonna have someone come with me to spot me on those stairs because those stairs are SCARY AS SHIT!!! But... yeah....... Imma do those stairs like a boss.”

Still utter silence.

And then there were giggles on her end of the line and there was even greater white hot panic on my end of the line... because what the fuck did I just say??!!!

‘Imma take those stairs like a boss?!!???’ Who says something so stupid like that?? It was clearly my “I carried a watermelon...” moment of ridiculousness. So embarrassing.

Anyhow, once I’d hung up the phone it was time for new anxiety to take over. I had to call Enz for help and we weren’t on the greatest of speaking terms just then thanks to my weakened unsteadiness that had caused me to accidentally fall and knock over the vacuum powerhead he’d left propped against the washer. He’d gotten angry that the vacuum pole might hit and scratch the cabinet or the wall and in his frustration of my always stumbling had pushed me over and out of his way to catch it before any damage could be done. It was an awful mess; he felt horrible for pushing me, I sobbed uncontrollably at having been pushed down when I still am unsteady all on my own without being pushed and we still hadn’t spoken two days after that terribleness. Knowing I had to call for his help was just NOT something I wanted to have to do. BUT when I said those stairs are scary as shit..... I’m seriously NOT joking. My dentists office is on the second floor of our local shopping mall and those old linoleum-covered concrete stairs are not an easy feat for anyone who struggles with stairs. The stairs are really high-stepped and have a little lip on each tread (one of which I caught the toe of my shoe on and started to tumble forward before Enz caught and pulled me back to steady me before continuing upward), there are linoleum bubbles in places that are not pliable and there must be cracks in the concrete beneath because the unevenness of footing is unnerving and there are two turn-landings in the dark stairwell which makes it feel creepy as well as unsafe to maneuver. 

I am generally pretty fortunate with my dentist visits because I am SO obsessively careful about taking care of my teeth and only have to go every nine months for a cleaning and checkup. Three times over the past five years, the elevator has been out of order. Once, when I was still on the walker, I’d had no choice but to turn around and just go home after Enz had called up to furiously cancel on my behalf. The second time, I had been still, using both of my Stix and slowly made my way up the stairs as I’d been working so hard on learning in NeuroPhysio... with the help of a very concerned woman who carefully followed me up every step before she raged in to tell of the office staff or not making sure there was safe accessibility in reaching their office. I wasn’t going to complain, I was just trying to deal but that lady was MAD and she let them know it before she left to wherever she’d been headed in the first place. I’d had to call Enz to come up after that appointment to help me down those scary as shit stairs and was thankful I had because I was still really shaky in learning the downsteps of stairs... there was honestly nothing more frightening in my learning to walk again than in starting down a flight of stairs knowing my legs weren’t dependable, and my anxiety was already at an all time high thanks to the first lady’s freakout and then Enz’s freakout over the elevator again not working when he came to pick me up when I was done and help me down.

Okay, so back to this appointment day... I didn’t want to call but I was, in the words of my beloved Stargate... “choiceless”, I needed help. Enz was beyond furious, not that I had called but that the elevator still hadn’t been fixed. And if you’re shaking your head at the lack of a big deal here, I get it, it doesn’t seem like a broken elevator should be a big deal... until you need one. He was thoroughly pissed off even as I said, “But at least they called to tell me this time...” “Yeah... minutes before your appointment?!! That’s ridiculous, Gillian, they can’t do that, I’m going to call them... what’s the number?”

I was, quite honestly, really pissed off about the practically always broken elevator myself but I somehow had calmed the storm that was Enz and he’d agreed to take me and help me both up and down those scary as shit stairs and he’d promised to do it without making a fuss in the office about the unworking elevator. But he was FUMING and he couldn’t help himself from (thankfully politely) inquiring as to when the elevator would finally be fixed before he left me there for my appointment. The good happening was that the scary as shit stairs hooplah had overturned the icy silence in joint upset over the new dilemma.

I was a nervous wreck as I sat in the waiting area desperately trying to calm myself from the stress of even just getting upstairs to the office and my almost fall on the first set of stairs as we’d climbed. I felt hot with embarrassment of having needed help when I’ve been getting so much stronger and I was working hard to both settle my still panicked breathing and to hold  threatening tears at bay.

And that’s when the office telephone rang.

The receptionist turned to catch my eye and looking directly at me, she said... “Imma answer dat phone... like a BOSS!!”

And we both dissolved into hysterical giggles before she had to pull herself together to pick up the telephone.

That’s when, in but a shared giggle over my earlier telephone idoitness, all was good again.

So, what’s the moral of this little big story of ridiculousness??

Even the simplest seeming tasks can feel like the most unachievable challenges no matter the situation. In not giving myself time to retreat, I pushed myself forward... even when I was still weak from treatments, ultimately that forward choice made me feel just a little bit stronger of will. And in not being too prideful to ask for help on the scary as shit stairs, well, it may seem like I sold out but there’s strength to be found in setting up for safety, too. It’s okay to take on scary challenges. And it’s okay to ask for help.

So whatever it is YOU have to do today, be it easy, be it challenging, just make sure...

to be it like a BOSS!!

Mama’s singin’ The Hugless Blues...

My mama misses hugs... she told me so a couple of evenings ago in her driveway when I stopped by to return a few containers to her. And as I sat there in my car with window rolled down talking with her from where she sat ‘safely distanced by Coronavirus Overseers (for lack of better titling) dictated standards’ on her front porch steps, I had what was perhaps a first of my lifetime moments where I wanted to be able to climb down from my vehicle to give her what she missed. At the same time, I was also grateful for having the excuse to NOT have to be hugged. But I hate seeing my mom feeling down in the dumps so I totally would have done it if I’d been allowed to.

Hugs are not something I’m comfortable with. I’ve made it a hard rule for my whole life to keep my feelings-shell intact, to keep my walls high, to keep my heart bound... yet open. It’s been a tough balance. I don’t offer hugs and I always keep myself somewhat coiled for immediate springback once given even a slight release if I find myself in a position of not having been able to shrug off being pulled into one.

It’s not that I don't want to be close and huggy and even just... comfortable ... with the people I care about, it’s just simply that I won’t allow myself to go there. Abandonment issues have grown along with me from as far back as my mind can see and for very good reason which those who know me well will understand; in one way I know that’s not a good way to live but in another way, it’s left me pretty well set for dealing in this horrible time of commanded isolation. Still, I do have feelings and worries that run painfully-deeply through my heart for others who are having down times. I’m having a really hard time witnessing all the longing for real human connection I see happening throughout my small circle while scrolling through our shared social media posts. I care, incredibly, I just have a reeaaally hard time in showing it and other than being too tall, too chubby, too annoying, too ugly with way too constantly messy hair, this having an open yet closed-off heart is really the only other thing I hate about myself. One thing I do actually like about myself is that I can always... always find an UPside to every life happening I find myself within and this Coronavirus situation is no different. The UPside throughout this ordeal, for me, has been that I can still reach out to all the people who matter so much to me. I can email, message, text and phone to check in and make sure my family and my friends are doing okay in managing through. We are sooooo fortunate to be in this time of connect-ability! When I was a teenager wayyyyy back in the ‘80s, my dad was a Lumberjack/Forestry Safety Consultant and worked in remote bush camps throughout every week which almost always meant we said goodnight to him before bedtime on Sundays and we didn’t see or talk with him again until we got home from school on Fridays... there were no cell phones, there was no internet to offer connection from afar in those days. I know it isn’t the same to stay connected through cell and internet means but I’m sure extra grateful that we have the technology we do nowadays to help us stick together while distancing..... even though virtual hugs just aren’t the same as the real ones the huggers, like my mom, are missing. Who knows? The first mama hug back to people peopling may be the only one of my lifetime I don’t try to wriggle my way out of... or it might not be, I guess time will tell.😉😂

Anyhow... I’ve been checking in with family and friends and I’ll continue to check in because I want to know that all of YOU, huggers and non-huggers, are doing okay, even in these not the funnest of times. Struggles happen for us all but an actual full-ON together struggle where we’re all in the same-ish situation, such as this one, is pretty unbelievable... even as it’s actually happening it’s a tough one to even try and understand. All I do understand is that we’re in it together and that’s a definite UPside because I couldn’t ask for a better posse to ride out this time of confusion with!

And just so YOU’ll know...

Five years.....

It wasn’t long ago, just over a month, actually... when I passed through the FIVE YEAR mark of this Guillain Barré Syndrome journey that has changed who I am, so completely. I’ve learned things about myself over these past years spent in the ‘slow lane’ and though some of those personal revelations have lifted my heart in gratefulness, others have dropped it in shame; still, between the two, I’ve managed to keep mostly grounded so that’s a good thing, I think. 

As anyone who has read even just one of my blog posts will know, I have an annoying tendency to ramble... I’m going to try not to ramble on too terribly in this five year GBS update. Sometimes it’s hard to be quick in sharing my climb back up to healthy; I write about it because it’s hard for me to talk about it and I need to be open about all that’s happening with the people who mean everything to me... my family and my small but MIGHTY friendship circle of absolute beautiful.

Through these long five years of working to regain all that I lost in those sudden moments of going from healthy and strong to stuck in that hospital bed with paralyzed legs, arms and hands... I’ve had no other choice than to find a different ‘strong’ that I didn’t even know I had within me. I've tried to never complain of how hard it’s  been in being forced to relearn all the basic life skills that used to come so easily because I’m SO incredibly beyond grateful just to be moving more confidently again, at all. But although I am careful to not complain, I’m also very honest with myself, as well as with others, in the undeniable fact that it has been a HARD five years, a scary five years, a devastating five years. There’s no pretending that any part of this healing journey has been easy for me but working my way through has given me so much more than it’s taken of me and for that, I just can’t complain.

I was reminded by someone a couple of weeks ago, while out for coffee, that I’m not who I used to be and that I shouldn’t still have my usual happies, “...How are you still always smiling and laughing at everything??!...” she asked me in disbelief while sending across the table to me (my Stix propped up by my side) ‘tsk-tsk-sorrow-filled’ looks at my continued struggles (even slight as they are now). And I get it, I’ve heard tell, all my life, about sad feelings and people who deal with feeling less-than and like life is just unfair, especially when illness hits... but I’ve just never personally known any of those kinds of feelings. I’ve been sad when there’s been a legitimate call for sad in my life and I’ve been mad when that’s called for, too, but the vast majority of my life is spent smiling and laughing, even at the dumbest things because I always just feel happy inside. And so, “What’s NOT to be smiling and laughing about??!” was my answer to her question. I mean, there I was... out at a coffee shop, in the middle of winter having walked in with using only one of my SideStix to help steady me. I wasn’t in a wheelchair anymore. I wasn’t on a walker anymore. I was depending only on a sole Stix. And I felt strong and capable and overjoyed in such a huge win. I know and I see that people look at me differently now. I see the sadness and disbelief in the eyes of friends who knew me before the GBS took me over and sure, it makes me feel like I’m a disappointment for a minute or two, like I’ve somehow let people down in having been taken down with sickness but who I really am is still strong even if my body isn’t quite there yet. My Faith and my trust in maneuvering this life path that I had no part in deciding to be on, is strong. 

I don’t want to let anybody down in seeing me still not quite up to snuff but it’s important for me to not hide the hard parts and only share the easy parts otherwise I’d be letting myself down. My happiness doesn’t always override my struggle. My spirit is strong... so is my fear. And it seems like the closer I get to being all better, to finally again getting to walk on my own... the more terrified I get that my legs are going to stop working again. The nightmares started a couple of years ago and have been getting worse, almost nightly I bolt awake from anywhere between two and four in the morning trying to catch my breath with tears streaming as I desperately poke at my legs to make sure I can still feel them. It takes hours of listening to my gentle musical inspirations to settle me after the nightscares but eventually, I do settle, I settle right back into ‘...it’ll work out or it won’t...’ mode but I never get back to sleep and being constantly tired with all the physical therapy work I still have to do is rough. The waking panic moments started last winter when I began getting actual feeling back in my legs... those same dental freezing type tingles were the last feelings I had in my legs before the paralysis deadened all feeling and then suddenly, those same feelings, along with extreme stabbing pain, were back again with my nerves finally beginning to reawaken. The fears of relapse threat are very real and I am emphatically reminded by my doctors at each visit that I have to be very careful not to get sick with my weakened immune system in avoiding another relapse. Even a hint of a cold, a flu, a virus of any sort could be catastrophic for me in relapse while I am still healing. The only way I have of combatting these fears is through my Faith and through just simply remaining true to my nature. So, I’m always going to giggle-fit at dumb stuff. I’m always going to be annoying in finding funnies when nobody else can see reason for them. And I’m always going to find the gifts that the struggles are teaching me.

All in all, for as hard as these five have been, the goodness is still outweighing the awfulness, even in the simplest ways. At Christmas time I could only carry a half-filled coffee mug from the kitchen to the living room and it took all of my concentration and stop breaks to steady myself from spilling or falling, and if I reeaaally wanted to just sit with a regular full coffee mug, I still had to ask for help in carrying. Trust me, I have learned though all of this that there is no shame in asking for help BUT today I carried a FULL mug of hot coffee from the kitchen in to the living room all by myself... I have to do a two-hands carry, I have to concentrate SO hard on each step while also concentrating SO hard on keeping the mug steady as I work to keep my body steady in balance. It’s a slow carry, it’s an awkward carry but it’s a carry and it’s just another little confidence win. That such a small thing, something as simple as carrying my own full cup of coffee across a room can fill my heart with proud, well yes, I know it sounds ridiculous. Believe it, or not, though... this is not the end of my coffee-carry goals; I still have my sights set on coffee-carries in my cozy morning slippers, I’m so afraid of spilling coffee on my beloved Uggs that I slip them off for coffee time but hopefully, soon I will be confidently capable enough to handle all the coffee coziness of morning time awesomeness without fear of ruining my favourite comfies.

The littlest things matter.

Looking back, I felt really small at the coffee shop that evening... for a minute..... but then I realized that it wasn’t my small to feel.

Yes, I did lose an awful lot when I got sick BUT... I’m still working hard to get it all back, and I’m always going to find my happies.

The IVIG treatments are hard BUT... being gifted with them is a blessing from so many helpful hearts.

I may still toddle and trip a little BUT... I’m walking again.

My cursive handwriting is still unsteady and barely legible BUT... my printing is clean and steady.

My hands still don’t want to work properly in trying to hold guitar notes BUT... I can play my fiddle.

I still can’t ski or skate BUT... I can go sliding.

I can’t safely carry a boiling pot of pasta to the sink for draining or a hot casserole dish from oven to counter or hot dishes from kitchen to dining room when my family is over for dinner BUT... I can ask for help.

I have way too many BIG small happenings to be grateful for. And pretty soon, I’ll be carrying my full mug of coffee without painfully  chilly tootsies, too!

It’s been a really tough five years but healing is happening, confidence and capability right along with it. It’s sometimes hard for me to see how far I’ve come on the healing road but when I really let myself look back, I can see it and I’m proud to have stuck it out, even in times when I wasn’t sure I could.

From the days when I had to be on a walker to play outside with my boys.....

...to the days when I was so proud to be off the walker
and had graduated to my SideStix.....

...but was still too embarrassed to venture out in the neighbourhood
and would only walk to the end of the driveway and back..... 

...to double Stix walking along the camp shore with my boys.

...to single Stix walkingdown the camp road with my boys!

Always finding the joy, even in the simplest of ways, just works best for me.