"We much prefer stories about falling and rising to be inspirational and sanitized. Our culture is rife with these tales. In a thirty-minute speech, there's normally thirty seconds dedicated to 'And I fought my way back,' or 'And then I met someone new,' ...We like recovery stories to move quickly through the dark so we can get to the sweeping redemptive ending." From Brene Brown's Rising Strong
In the second go round in my recovery, which is actually just an intractable furtherance of my recovery, I have had a bit of a love-hate relationship with writing this blog. I am still writing, in private, but I have had trouble posting it in this public forum, for all to see. To display my wounds so readily, to tell my story whilst the story is still happening. When I started doing this at the beginning of 2016, I was raring to go: ready to tell my story of redemption, of falling down, of nearly dying, of the pain, of the grit needed to get through it, of the grace, of the humour I held on to so steadfast and then, rising strong, of how resilient I was and am and continue to be. Look at me all shiny and new and ready to take on the world yet again not 6 months later! And oh the laughs, oh the laughs you'll get from my falling down and getting back up and slipping on a banana peel and on so it will go. And oh the tears, the tears we'll all have! I am intuitively vulnerable but I am also fiercely guarded in so many ways. I know that I was sometimes only willing to tell one side of the story. I wanted it to be entertaining (which it has been until probably this post, nail in coffin time guys!), I wanted it to help people (which it has), and I wanted somewhere to put all the stories (haven't even scratched the tip of the iceberg, bud).
But there have been points in the past eight months where I have seen no humour in healing. There are only so many slo-mo videos you can take of blood being drawn. And if I have to see one more stool sample kit, I'm going to have to burn it. And burning plastic is never a good move. There are only so many sleepless nights, so much indigestion, so many small kicks from god-knows-where to your gut, so many mouth ulcers, and strange new symptoms that one can endure. And it takes a toll to have to be alarmist about every little thing. I have only seen darkness (yellow-tinged), I could not unpack my emotions, I wasn't willing to look at the pain any longer, to reflect on it. I couldn't face another day of nausea, or fatigue, or the idea that, I must be better by now. I've had to come to a place of acceptance that it may take longer than a year to fully come back from this. I have good days where I feel ready to take it all on (and so I take on too much) and I do have bad days where I am too tired to do much of anything at all (and so I don't do anything). I think both scenarios are ok, and needed. How will one know what they're capable of if they don't try? I haven't been interested in telling a story full of trials, tribulations coupled with humour and a dose of shock-factor because I didn't feel strong and I often don't feel like I have enough of a wide spectrum of tools to cope with the breadth of my own suffering. I didn't feel like the person I had set out to be, or even the one I already know, even whilst projecting some image of what I thought people might enjoy. The salacious details of a tale of hospital woes no longer interested me. This summer, I felt my friends dropping away, whether that was something I made up in my mind or not (circumstance and modern life being a reality of this particular paranoia). I became extremely paranoid that I was no longer likable, I was too difficult to deal with and people could no longer accept me because I was still struggling with all of it. A lot of that is tied up in my own identity being attached to what other people think of me. That is difficult to admit, but it's true. I still have trouble entering a social situation and feeling at ease in the practiced way I once did, because I have a relatively mundane existence--which is shocking to me, and speaks to an arrogance I once had. Even though I wasn't particularly kind to myself pre-transplant, I still thought I was an addition to any social situation. Now I know I'm an addition to any situation whatsoever, because we all have something to offer, but I'm more aware of how it makes me feel, and where I'm at on that particular day, and whether it is at odds with situations I put myself into. And if you asked me how I was, up until quite recently, I couldn't help but tell you I didn't feel good, that things were still pretty bad and my world was tiny and I didn't know when it would get better and ugh it hurts make it stop. I couldn't lie to make someone else feel better, which is what I thought maybe people wanted to hear, that I'm better. But the organ recital gets tiring for all involved. I felt my family tired of the uncertainty, I felt completely and utterly alone. I still feel alone. That does not mean I am alone by any means, it means sometimes I feel alone. Feelings are not facts. There are a fair amount of incongruities listed here, which is something so pertinent in illness.
But the FACT is that all of it is all still true! It's just how I frame it in my mind that is changing. I don't have to prove to anyone that I don't feel well. I've had a goddamn liver transplant fraught with complications. I think it's pretty obvious that I wouldn't feel well. I didn't catch a cold. I went into acute liver rejection. I have not been on a holiday, I have been convalescing. Why I think it's necessary to prove to anyone that I feel one way or another is really not the issue. The issue is me having the inclination to do such a thing. But our society often demands it. As Brene Brown says, yet again, so aptly: 'Perfection is about the furthest thing in the world from badassery' . Badassery is what we strive for. Perfection is unattainable. Finding the balance is the mystery. I am not stronger than you. My troubles, just because they may seem insurmountable at times and are extreme, are not therefore more important. That is where the power lies, in the knowing. In the knowing that suffering is not for the few chosen unlucky ones. In the knowing that we all suffer and that it all takes on different faces and forms. It's the facing up to it, and not shying away from it, of the burying it under the carpet when it's too much to bear because, as Brene Brown puts it 'Please--that's a first world problem; there are people dying of starvation every minute.' In our current global climate of insanity and unthinkable pain and violence and a world turned upside down with seemingly never-ending devastation, we have a responsibility to own our problems and our sorrows and let them define you inasmuch as we see fit, and to then look to where you we be of service if we are in a position to do so.
Last week, my aunt called me to tell me that a certain part of my disability came through. The idea of me, in my mind's eye, as disabled is truly laughable. But disability takes on different faces and forms. I still think there are days where I can operate as though I do not have a (relatively) new liver integrating into my body. I go for it full throttle and I am genuinely surprised when, at the end of that day, I need three to recover. But the trick is to flip it and acknowledge that I do get a day. Really, as recently as September of this year, I wouldn't have had a day. Everything would be a slog. I would count the hours until I could sleep so as not to have to be awake and face whatever unfortunate indignities the day had in store for me. So now, when faced with the question of 'How are you doing?', I've been practicing saying something simple (and I am not always so adept at this, I fall into my own trap of illness and victimhood, more often than not), 'I'm good, I'm doing well', and only when prompted further do I list any sort of symptoms or side effects I may have on any given day. This is not to make the other person feel more at ease, more comfortable knowing that I'm fine and it's no longer something to worry about or concern themselves with. It's really for me. If I commit to feeling good in the day, I find that the day is a bit better. If I am inclined to say how unwell I feel, or how hard it is or how unbelievably boring it all is, the day, the hour, even the minute won't be as good. That's not to say I'm so obtuse as to ignore it if I don't feel well, it's to have the wherewithal to recognize how far I've come. I also take the time to write down things I am grateful for, like taking a hot shower or having the option to go for a walk and need to work up an appetite or the fact that I can afford to buy some organic oats because that shit really gives me a reason to get up in the morning. I'm passionate about porridge, what can I say.
As a patient it is sometimes too easy to get caught up in your own illness. But listing all the reasons why your life fucking sucks has a time and a place, and it's not when the guy making your $4 coffee asks you how you are and you're inclined to tell him all the things you think he needs to know and doesn't at all because you haven't had a real interaction with anyone for 3 days and you just NEED TO TELL SOMEONE. He wasn't asking that. He was asking how you are and that's it, Nora: just say 'I'm very well today, how are you?'. The very illness that has rendered you incapable of certain things morphs into a comfortable crutch to hide behind. It is difficult to have the courage to start to feel better because day-in, day-out there has been an underlying issue--whatever that may have been--that has been your complete existence for X amount of time. In order to truly try to live with this, and recover, and live a full life (because we are still living), I have found that you have to at least attempt to break out of the glass prism of illness or not allow it to colour your world view, or your very identity. And to begin to allow to weave it into your pre-existing identity and allow them both to co-exist peacefully. It will often be difficult for people to look at your illness head-on or to accept that perhaps it's how you exist in the world. It's hard for us all to face our own mortality and that our bodies, or our minds, are not fail-safe. But being a victim, and projecting that onto others and looking at your illness in a vortex you'll never get out of is limiting. The fear of being free from it is scarier than that of continuing to be sick. This does not mean that I will not take full advantage of getting someone to carry my bags because, let's be real, I don't want a hernia and I really doubt that anyone I would come into contact with would want to see that shit either. And just because the world is falling down around us, we should not think that we are not allowed to experience joy, it is not a selfish act to allow yourself to try to experience some type of joy in the day. It's literally all anyone can do to get by. Take the option, from someone who didn't for a minute.