Green Apple Clog Blog: March 2020

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.