I’ve tried to move on through without complaint, without self-pity because I know there has be meaning I’m supposed to find through this journey of awfulness I’ve been on. God must be trying to teach me something big, I know it... I just don’t understand it. The fact that I’ve worked so hard on keeping a cool lid on things throughout this whole Guillain-Barré Syndrome ordeal doesn’t mean that I don’t hurt or that I haven’t struggled. I struggle. I struggle greatly. It’s so hard to live with the constant fear of all that’s happened and not knowing, for absolute certain that it really might just all be okay again someday.
But there was one afternoon.
One deliciously yet shamefully inviting afternoon that found me.
It was five months after the GBS had hit me with the paralysis. I still couldn’t walk fully on my own and was still too proud to be seen outside with the walker... but, it was before I had developed the pneumonia that relapsed me back to wheelchair need but walker acceptance and so I had been healing well at that point and could handle flat ground on my own. I was still crawling on my hands and knees to get up and down stairs and Enz had to physically be my ‘walker’ whenever we met with even the slightest incline to maneuver; like a baby being led for first steps... for a baby it’s pretty exciting, for me it was beyond devastating which is why, at that point, I would only be outside at camp where no one could see me. Anyhow, this was the day.
When all the struggle could have eased...
The water moved furiously. White capped waves of swirling power crashing at me from either side of my small kayak in its clear-fighted effort to go to its own currents calling despite my being in its path. The wildly churning Lake Superior water held no cognizant cause to harm me but was merely fulfilling its own pure purpose in moving according to its nature. I knew this even as the first slight pang of panic had hit me, that instant in which I had realized I was on the cusp of survival. The moment of choice had finally and demandingly found me. What had begun as a seemingly simple test of whether or not my body was able to reclaim a life of being once again physically strong had, in a snap, turned into which of the wills of my heart would prove stronger; to live or to let go.
The sun was brilliantly shining and warm on my face even as the heavy winds and splashing cold water chilled my arms. I had been pulled farther out into the open water from shore than I had planned to go, pulled hard by arguing currents and cresting waves. My kayak was being pushed sideways one way and pulled back the other as I fought to keep balance each time my tiny craft was violently forced upward before threatening to capsize... but ultimately choosing not to. The melding point of the two currents had pulled me out in a line SO strong, a line I couldn’t paddle away from.
I was suddenly overcome with the horror of knowing I was actually in a life or death danger. But directly following and just as suddenly as the horror had pitted my stomach in fear, I was overtaken with a relief so beautifully welcomed, so comforting that I just simply stopped. I stopped, I lifted my oar from the water and held it firmly across the cockpit edge atop my half sundress-covered thighs. Yep, I was wearing a sundress, I wasn’t even dressed properly for getting out on the water in a kayak. I sat still and I debated my options. I could call out for help, I had my safety whistle but that would be embarrassing and likely involve a lecture or two from whoever might answer my call. I could try to paddle my way to the opposite point where the water seemed most intent on pulling me and wait until the water calmed to attempt my way back across. Or, I could just stay stopped and wait for the saving wave that would finally force me beneath the surface where I knew everything would be better, everything would be over. And as I debated my options I had gently reached one hand up to release my life vest buckles in anticipation of what I already leaned more toward in my choosing.
And then I glanced back toward camp. And there stood Enz. I couldn’t see his face, I was so far out, but I could see the concern in his stance. So, I took a few sweep strokes, for his sake, to make it look like I was actually attempting to turn back. I didn’t want for him to know how glad I was for this opportunity to make both of our lives better, mine by washing it away in the water and his by unburdening it. Now, knowing Enz was worriedly watching, I had even more to debate. Sure, I might get away with not having to face another tomorrow with a broken body... but Enz doesn’t know how to swim, at all. And if Enz thought I was in real true trouble he would, without hesitation, rush into the water to try to come after me. I still couldn’t make myself decide. I still questioned, even in my sudden calmness through torrentially dangerous circumstance, my worth of existence as damaged.
It was then when I felt the hands.
I felt, I tangibly felt, hands that I couldn’t see wrapping securely over my own, I felt the incredible pressure enclosing around my hands to tightly lock my grip onto the oar as the blade suddenly dug down and HARD into a carving eddy style turn, slicing into the oncoming current which forced my kayak to instantly spin back toward the shoreline. The bow lifted to skip over the attacking wave as my body, within the forced turn, dipped dangerously close to falling out as the kayak turned on-edge though the fury. My legs were not capable of bracing to keep me seated in that rush but something did keep me seated and dry. I don’t know who guided my hands or even why I allowed my body to be so forcefully led in my trust of the help that had been offered me, but I did and I felt the beginnings of regret almost instantly. I regretted paddling back to shore. I regretted still being alive. I regretted the struggle that would continue. Still, I paddled toward home and it wasn’t until I reached Enz that I felt the hands upon mine loosen their grip and let go their lead. Once I had arrived back safely to shore where Enz had waded in to grab hold of the bow, pulling me further in before helping me awkwardly out.
“Whew! That was scary!!” I blurted out breathlessly.
But I was lying. It hadn’t been scary, at all. In fact, it had been maybe THE most hopeful of moments I had ever before known. My hope of letting go had been pure in its want... but the selfishness of that hope had not been strong enough to ignore the invisible hands that had guided mine through those fierce currents of roiling swells lifting and threatening to take me to the sweet, cold darkness below.
Whose hands had held and led mine in absolute surety? Were they God’s hands? An Angel’s hands? My dad’s hands? I don’t know. I may never know whose hands so capably, so comfortingly led me home but in heeding those hands as they guided me, I learned what it means to truly and wholeheartedly trust. And maybe, just maybe, having found trust in what I couldn’t see... maybe I could finally start looking for some trust in what I could see.
In retrospect, I should probably have listened to the fact that my body was still not capable of walking without help when it came to making my decision to take my kayak out that afternoon. And I certainly should never have gone solo in a boat I couldn’t physically launch or even sit into without help. And I most certainly should never have chanced the crashing waves I knew were too rough to even dare attempt had my body been at full capability. I hadn’t left shore with a death wish; I had never even entertained the slightest thought of suicide. But when there had come to me an easy opportunity of dying that I didn’t have to plan, that I didn’t have to put into physical action, that I wouldn’t have to explain if I failed in attempt of... well, that made for a pretty inviting introduction to what I suddenly understood as the gift of death.
I’ve never talked about what happened on the lake that day with a single other soul. Those were moments of shame in weakness that I never wanted to, and still don’t want to have to admit to anyone, not even my own self, but those moments are also part of who I am and denying them isn’t doing me any favour. It might just actually help me move forward through sharing honestly and even better than selfishly helping myself, it might just help somebody else who might be at a ‘should I just let go or should I keep going’ decision moment of their own.
So, why have I now just shared my most shame-filled moment of weakness?
Well... because sometimes, as I’m learning now, it’s only weakness that can offer strength. See, I had an appointment yesterday afternoon with my Neurologist and I had been dreading it for weeks. I didn’t want to go. I had been angsting over even just knowing appointment time was approaching. I couldn’t focus on anything during the days leading up and I couldn’t sleep during the long, worriesome nights. I just knew it was going to be another appointment of wasted time. I just knew that all I was going to hear from the doctor would be the usual, “...you’ve improved so much over the past months... ...this is something that just takes a looooong time to come back from... ...you’re still moving forward and that still points hopeful toward a full recovery... ...patience, it can easily take seven to ten years for the nerves to fully redevelop...” I had resigned myself to going and had prepared my heart for yet another patience pep talk.
I had gone into that appointment yesterday already dreading an outcome that didn’t happen. I went into the Neurologists office with every intention of focusing my six month update on all the positives... all the strength and ability that’s been slowly finding it’s way back into my body. And I started out just exactly as I had prepared myself the instant she asked how things had been going over the past months. I started out strong in excitedly sharing all the basic physio exercises I can do quite confidently again, things like standing leg squats without holding onto the bed for dear life, leg lifts, breaststroke leg kicks when swimming, all things that I couldn’t do just a little while ago. And other things like getting feeling back and how excited I had been a few weeks ago when I had burned myself because I had felt and known instantly that I had burned myself when at my last check-up I still could only feel severe pain from temperature sensation but I couldn’t tell whether it had been hot or cold that had caused me pain. All really great things to share with my doctor. But then things changed. And my fear let loose, even thpugh I tried to hold it back. Something inside of me just screamed out and I couldn’t stop the complaints that I usually work so hard at keeping back...
“I’m so much stronger again,” I said, “I feel like I’m sooooo close to walking on my own again... (this is the point where I lost all control and the tears started streaming as I somehow continued to choke out the words I couldn’t believe I was even admitting to) ...but I’m hitting a point of panicked that it’s just never gonna get any better than this. It’s so hard... I just want to be able to carry a mug of coffee into the living room without having to use a sippy cup or ask for help... I just want to not be so tired because I have to concentrate so hard on making every step work in fighting the wobbliness that still takes me over. I’m just really getting to a panic and I don’t know what else to do because I work so hard every day on all my physio work, I’m so careful about my diet and eating healthy to help my body get strong again but everything just still feels disconnected..... and it’s....... just really... scary. And I’m just so scared that every time I ever leave the safe zone of home, I’m gonna be stuck with this dumb Stix for the rest of my whole dumb life.....”
Both my Neurologist and the Resident working alongside her listened with caring as I poured out the struggles and fears of this forever-feeling healing journey. And then after I had collected myself again, my doctor told me that I will get better and that the fact that I have improved so much over even just this past year alone points to the healing end being in sight. Even as she assured me of the finish line in very distant sights, all I could feel was my heart sinking and even there in her office I chastised myself for not sinking into the lake four years ago when I had found myself with the perfect chance. And then she told me something that I could never have guessed was coming. “We were going over your case before we brought you in and I’m wondering if a full course of IVIG treatments won’t help boost you through this last bit to healthy again... let’s talk about it.” I was so shocked at her words that I just about fell off the chair I was sitting in! “You should have had IVIG treatments straight away when the paralysis hit, we know that... but it’s not too late, we can still do it. And with the steady progress you’re now making, this may just help your body to connect again. There are certain windows we can begin treatment at, the first was missed but we have another now, winter’s coming and if we can get you moving safer before it hits hard, that’s going to be a really big deal. I feel it’s worth a try to see if it’ll help at this point.”
And suddenly, it all came together... Just like when I was in my kayak and I’d had to let go in order to be led home through those dangerous waves, I’d also had to let go all my walls built ‘round my struggles in order to be led to the help that has again opened for me.sometimes it’s all just about simply letting go and allowing ourselves to be led, as terrifying as it is to open our hearts in asking for help.
I’ll admit it, I now scared for new reasons. IVIG is not an easy treatment, from what I’ve heard. I’m praying it will be a breeze but even if it proves to be yet another struggle, I’m going to do my best to get through it all with nothing but a grateful heart. Thankfully, my treatment starts on Monday so I don’t have a whole lot of time to stew over not knowing what to expect and all I know for now is that it’s quite intense and the first two rounds of the course are given daily for five days... Enz has promised to get me to each appointment no matter of his busy work schedule (without being snarky about having to take time away from his office) so hopefully, I won’t have to angst over getting to the hospital each day, either. I’m hopeful it will all prove an easy go but like I always say... it’ll work out or it won’t.
