I can honestly tell you I've been waiting for this day since April 7, 2006. But I can't really tell you why. And now that it's here, it feels a little anticlimactic. I don't know what I thought would happen today, honestly. I don't know whether I thought everything was going to be better, or if something big would happen or what. I think what I was hoping would happen, was that I would forget about the way life was before I had the stroke and how effortless doing certain things seemed. Because after all, today, I've had my weakness, and brain fog longer than I haven't. I was 17 when it happened; now it's been 18 years. But do I really want that to happen? I don't think so. I say I do, but I think if we were actually gifted the power of having things happen or not happen, I think I would regret it. I appreciate it now because I remember how effortless and easy it was. I remember going to bed every night crying, wishing this would all be a dream. But I don't do that anymore. I would hate to see how much of a different person I would have turned into had this not happened.
But at the same time, there is a profound ache in slipping back into the kingdom of chronic illness after you've been away from it for as long as I have, even if you're praying and hoping every time during that heightened headache that it's temporary. It almost feels like every time I get sick, it's as if it's sitting there, tempting me, like this could turn out going this way, or it could just be a normal cold that everyone gets, but I'm not going to tell you. And however scary, there is something about your sick world, that makes you hold onto it like a metaphorical security blanket. It's as if there is a baby cold pool and a huge warm one. And the metaphorical illness is just watching you in the big pool, waiting until you least expect it to grab you and throw you into that familiar but still jarring, painful, but ever so world you hold so close, metaphorical cold pool. Maybe it's because you've had to make that world go from cold and unfamiliar to warm and inviting. Because that's the only way you will survive. But getting sick again is a possibility I live with every day. It's such a strange paradox that I could be paralyzingly sick one second from now. Just one second. I don't think about it often. But it's something that has been creeping into my mind more as I continue my life, almost flirting with that invisible line between healthy and sick.
But now, I've been living with hemiparesis longer than I haven't. So, the huge question that has been on my mind really since it happened is, do I not notice my deficits now since I've had them longer than I haven't had them. Not gonna lie, I was hoping my answer today would be no. But that's not always true. Everyone always thinks that entering back into the healthy world however temporary it could be would always be a joyous occasion. And it is, but what if I told you I guarded that happiness just a little. Because it feels like if I relish in it too much, it will be snatched away from me. Thinking back on the past 18 years, so many transformative things have happened to me. Like normal transformative things. Family members have died, and family members have been born. Friends have come, friends have gone. Friends who were my friends then have proven that they are there to stay, and that means so much to me. My favorite chronic twin ever has left this life and gone on to the next. The one we are all down here working towards.
Honestly, I've been saying this a lot as I've gotten older, and almost incessantly since I turned 30. It feels as though the last 18 years have gone by so quickly, but in other ways, it has moved at a snail's pace. I don't think anyone who hasn't gone through the trauma of so many surgeries and/or a life-changing health event can ever truly understand that. And ironically, I don't mean that as a negative. I remember right after it happened, it felt like everything I did, just reminded me of what happened, and it was like a punch in the gut the entire time. That is the one thing that time has softened the blow of.
But maybe this is telling me that it's ok to go forward? Maybe it's giving me permission to keep going. Move on but never forget. When health does grace us, each day is like a blank canvas. Ripe with potential for a joyous occasion, but also not that joyous. On this day, our body feels like it's an ally, capable and resilient, the receptacle for your soul, carrying you throughout this world, so effortlessly. But it feels as though you're constantly looking over your shoulder almost trying to expect the unexpected. Trying to outsmart your own illness. To stay one step ahead. Because you know, to lose this, whether suddenly, or gradually, however temporary, is akin to having a door close in your face, but at a snail's pace. This transition to or back to sickness often comes with second thoughts of what ifs; almost as a sense of betrayal. The body, once a trusted vessel, becomes a source of frustration, and mystery.
You find yourself constantly asking why. Your mind stays the same, even though your body is changing sometimes at lightning speed. There is a loneliness that pervades this life, a disconnect not just from health, but from those who still reside within your life. Conversations change; the horizon of your world shifts, sometimes narrowing to the confines of your room, your bed, and your own fluctuating sensations. The shared language of the well feels foreign, a reminder of the divide sickness carves between experiences. Yet, even within this realm, there are moments of grace—small victories, deeper connections with those who understand, & an acute appreciation for the nuances of life & health that were previously overlooked. Slipping back into sickness is a journey of resilience & reflection, a painful reminder of fragility, but also a testament to the strength & adaptability of the human spirit. You wonder is this all worth it? This type of mental anguish, letting yourself obsess about every little thing that happens to you.
But then you realize: It's supposed to be hard. You're supposed to have moments of doubt. You're supposed to have days you just don't want to do it. You're supposed to make sacrifices. You're supposed to challenge yourself and push your limits. That's the price that has to be paid, to separate yourself from the pack. Stop being average and do anything worth doing. Stop trying to avoid it. Learn to fall in love with the challenge, the sacrifices, and the discomfort, and use it to your advantage. Just go out and live. Because you don't know when your metaphorical bubble will break, and you're thrust into that life again. No matter how much you try to distance yourself from that life, it has become part of who you are. It has etched its way upon your personality and no matter how hard you fight it, no matter how many nights you cry yourself to sleep, begging it to stop "ruining your life". Maybe this is how it's supposed to be, because one day maybe 18 years from now, you will look into the mirror and see someone you do recognize. Someone you've fought to become, and you will remember those tear-stained eyes that looked back at you for, you only know how long. Sometimes change is good. Sometimes change is what you need to grow. So at this very moment, I'm not saying I'm happy it happened, but I'm saying, I don't know who I would be if it didn't, and I don't think that's such a bad thing anymore.
So, what has life handed me? I've had my share of hospital visits, but every year, it's becoming less and less. So win! I've experienced the heartbreaking loss of my doctor, something I always knew in the back of my head would happen someday, but I never thought in a million years, it would happen this soon, and this quickly. I've had disappointments, triumphs, everything a young adult is supposed to have. I've just celebrated them a little differently. I've loved and lost, celebrated and mourned. I can ask the next 18 years to be kinder, but I think we all know by now, that life is unpredictable, but I am ready for it.
