Fresh off the heels of a post about letting down our guard, I feel a bit more comfortable about releasing the tales of my recent weeks into the rather effervescent and welcoming streams of cyberspace. Throughout the last few months, I’ve been bouncing in and out of the hospital pretty regularly. Of the months March, April and May, I spent exactly one half in the hospital intermittently. The first stay was as uneventful as it could be, while the second came about as a bit of a live one. All is as expected, in the end. No matter what happens at this point, there are no surprises; which is a sigh of relief.
At any rate, the most recent stay came to pass in the wake of a particularly difficult weekend; physically, I mean. The previous Saturday was exceptionally difficult, as I found myself feeling just about as sick as I had ever felt outside of an emergency. The week itself was that kind of beautiful week that is so rare in May, marked by winter temperatures and autumnal cloud covers; as if time itself is indulging its artistic nature with the painting of one last nostalgic snowscape before the reality of Summer’s heat insists upon itself. On a day like that – the smells and sights with the cool air on your skin – the totality of sensory magnificence is remarkable in its beauty. Sunday was ushered in with the reliable sunrise, and I felt a little better; though muddling through the day. The shock itself came rather abruptly in the middle of the night.
About 4:00AM Monday morning I woke coughing, which is not normal for me. I tend to sleep uninterrupted by coughing, unless I’m exceptionally sick. At any rate, I continued to cough for roughly an hour – though my perception of time at this point is my best measure, due to the absence of a clock in the room. I had already been in pain from the night before, and this continued to grow as a factor; though not through to culmination. The point of breaking came after about an hour, and no one ever said with certainty what caused it; or which factor played a role. Most likely, what followed was simply an anomaly of time and place; the sort of unprecedented oddity which bears no resemblance to precedent, while setting the pace of your health and its new baseline thereby. Nevertheless, it seemed that at this point my lungs simply quit responding to me. I was breathing in, but even with five running litres of oxygen, I was losing ground. My saturation, measured by a monitor I have handy at home, dropped from 80% when I put it on (already too low) to under 60% within seconds. I called out to my dad – who was fortunately still within hearing distance of that which transpires behind my closed door – and asked him to call the ambulance.
It seemed to me that the ambulance got there in a few seconds, but that is the nature of things when we’re in that kind of situation; time passes without our necessarily being conscious of it. I only remember that I was working incredibly hard to stay conscious, and that was my personal project for the duration of the morning. The only time I wasn’t sure if I was going to be able to keep myself conscious was on the initial wait for the ambulance, but I managed. It was hard work, but it was worth it. Staying conscious throughout an ordeal like this also gives you the chance to retain some perspective – knowing that you’re in an emergency situation, but that as long as you keep a level head it is not the kind of emergency situation that needs to be life threatening. This kind of approach is important, and it was the kind of approach that was impossible the first time I had to take a ride in the ambulance in 2009. It was a lot of work, though, and I had a few of the folks at the hospital and in the ambulance ask if maybe I wouldn’t prefer being unconscious and intubated. It’s difficult for me to imagine how anyone could prefer that option, no matter the cost of the alternative consciousness. I’ll pass, thanks!
At any rate, the ambulance arrived in due time and put me on about 15 litres of oxygen and gave me a ride to the local facility. At the local hospital, the nurses tried 11 times and failed to place an IV, and we went through one physician who was replaced almost immediately. The gross unpreparedness of the local facility with regards to any pulmonary patient is always immediately apparent when I am forced to go through there, so the first thing I ask to do is get transferred to the Columbus facility. In order to transport two hours in an ambulance, I required a bi-pap, which I wear nightly anyway. Of course, the local facility’s bi-pap mask covered my entire face rather than complimenting just my nose like a normal mask. Alas, I reluctantly adapted and we moved on. By the time I arrived in Columbus I was sleeping comfortably, and perfectly stable. A few hours later I was off of all the added bonuses and sitting at 5 litres of oxygen and a sat of 93%. Not too shabby considering…but holy cow was I exhausted.
The stay itself was as uneventful as it could ever be. It always feels like you’re completely enveloped in positive energy at the hospital, and the environment mixed with the charm of the people make getting healthy the easiest possible outcome imaginable. Say what you will, but pack a few books and a laptop and being in the hospital is no problem at all – not something to be sought after, but not a punishment by any means. Nevertheless, I was home in no time, sure enough. The winds of wicked weather had blown toward Findlay, and this time they came in the form of heat and humidity. Summer’s cruel gaze had turned upon me at last! The only place to take my tired out lungs was into my lovely orange room, kick my feet up, and bask in the trusty box fan’s friendly touch.
I’ve come to get back into the rhythm of the waiting game after a brief period of struggling with the idea. There is, still, however, much time for my brain to run circles around my body. All of this time I spend here provides me so many opportunities to reflect, though I try to use them as wisely as possible. Instead of reflection or meditation, lately, I find that the time I have devoted to introspection being more and more often consumed by overwhelming senses of nostalgia and friendship. The years have seen many of my friends displaced by time, to various parts of the world: to Cincinnati, other states, to Iceland, or to the other side of the planet altogether. It’s amazing when you think of it, and though I did get to see each of them last summer at least once, when we all thought my situation was much more dire; I have not been able to see much of them since. I love you all– and I look forward to seeing you whenever it should be.
I find myself often missing all of my scattered friends, regretting the great span of time and distance that has limited our ability to access each other regularly. It would seem, sometimes, that such conditions would strain a friendship out of existence; but that is impossible here. There are moments in our lives when we share an interaction with someone that brings two different minds into exactly the same place at the same time, something so deeply meaningful that the bond forms itself within you rather than between you. Though distance between you, alone, is a vulnerable point – it is impossible to cut something sheltered by your heart. Be it a conversation on something personal, a tender moment, or even the strength of duration in a long friendship over the years; for any of these reasons, some bonds are impossible to shatter. I wish there was some reminder that I could send out, a beacon that could guide them home. I wish… I love… It feels so clear that I could’ve made much better use of my time had I known in advance I would have had it. Made more visits, extended more invitations…
There is, of course, an incredible army of people right here by my side; friends with proximity! The other day I was able to join a group of friends for the first time in much too long. JH, JH, SS, MS, BS, KS and their lovely children – one of which was brand new in this wonderful world – were all there that night. It was magnificent for me to come out of the shadows again while I felt like I could, and I made it nearly three hours before I was too fatigued to stay out any longer. Nights like that are the seeds of the peach, and if nurtured properly can blossom into a beautiful new peach tree; while the company is fresh as its fruit. The prior afternoon found me out at the bookstore with AR. Alas, while I sail so far out in these uncharted waters, it still seems quite like I am playing on the shores!
My waters are my wait, and it is nearly one year old now. There was much talk last year at this time of my mortality, though. I remember the first time the doctors told me I would need to be evaluated for transplant last June, there were people implying I would only be around for a short time and should aim to have a complete evaluation within three months. Others implied that three months was a good time frame for my mortality itself; some implied about one year. Either way, the outlook was grim. The urgency seemed so great that my evaluation was set in motion right there in Columbus, all the data transferred to Cleveland with an appointment already made; the evaluation being completed only a few weeks later. Time has continued to march on, and here we are in uncharted waters.
In a way it makes you feel like a liar, and in a way it makes you feel like a warrior. You can’t shelter yourself completely from that nagging voice which reminds you there is a chance your continued existence will dampen the sincerity of everything you could ever say again; a stark reminder that your words were once interpreted as the most disingenuous hyperbole of all. The jagged edge of that dagger could pierce any heart which allows it to be so. I know my honesty has always been intact, and at the end of it all, I still managed to maintain some stability in the long run. Generally, I think my health is still worse than it was last year at this time. My average low is lower and more frequent. But, as a juxtaposition, my highs feel slightly higher as a result. What is most important to me, however, is that the urgency feels as if it has relented. Now that we have all settled into the frame of mind that comes with a longer wait, it feels natural.
My transplant score doesn’t actually sound as pressing when I hear it said aloud. Some people ask me why I wouldn’t do anything to sort of manipulate that score, or do bad intentionally to get lungs faster. I have been pretty persistent all along on the point that I must not forge my necessity here, and limit the ability of the party who may or may not need the lungs more than I do. I think the doctors have thought of this in advance, of course. But, it is something I could not do regardless. The world itself works organically, an elegant system of functioning cells in a social unity; our contributions must bear unto it reciprocal elegance. Were some situation to arise, and I was able to manipulate my score or position and acquire lungs faster at someone else’s expense, that is on my conscience; regardless of the outcome. We must love even those we know not. With this in mind, and the absence of urgency, it feels perfectly natural to be me these days. Everything is as it should be, and though I may not make it still, I can confidently say that I think it quite likely I will. There is a rhythm in the process that feels much like a heartbeat.
The transplant journey, at least for the foreseeable future, will continue to be one of grappling with issues and working to understand and straighten out my spiritual existence. I have taken you all with me, through the sunset seen from my hospital window last August, through the snows of the winter, the journey of my past, and on into the blossoming new year. It seems natural and exciting that I should take you with me into the future, as I grow and change, as I bear witness to what will make and break me, and as the world will make me smile again and again. There is enough beauty in the world to guide in this process, which will extend well beyond the transplant and through the rest of my life. I could talk forever about the perfect sunset, the flawless oceans and their breeze, or the universe and its marvels. Perfection and beauty can come in any form, and only requires that we permit ourselves to recognize them. However long I may live, I will always know I’ve lived completely, so long as I can fall in love with these things over and over and over again. I will continue to grow. I am full of hope. Life is hope!
Breathing Easy 