It seems every time I come back here I need to apologize for my long absence. I often mean to write something, but am then overcome with self-doubt. Is there any value in putting my voice out there? There is already so much noise, so many competing issues and perspectives that my own life seems to shrink in comparison. Then there is the fact that I have long ago given up on writing about the original theme of this blog because frankly, I’m often too tired to cook.
So this blog has become a sort of chronicle of the chronic (illness). I have mixed feelings about this. When I’m in an active flare I tend to scour the Internet for illness narratives that are similar to my own. I then have the pleasure of yelling, “me too! me too!” to a disembodied voice. I’m not really sure how helpful this is. It can be comforting to know that there are other people out there dealing with the same thing, but it does take me out of the business of living my own life. Then of course there are a myriad of blogs and wellness sites offering really time-consuming and/or expensive health advice. Don’t get me wrong, I’m a believer in alternative medicine and have integrated much into managing my illness, but I’ve given up on boundless energy and living to 120.
Not everyone has good health and for most of us life is punctuated by illness be it brief or chronic. I think as a society we used to understand this better. Technology, heroic medicine, and rabid capitalism are perhaps to blame for this forgotten wisdom. I am so incredibly grateful and privileged to have the support system I have for the simple fact that I can rest when I’m sick. Right now I’m feeling a very special sort of awful, but I will rest and it will pass. Many people don’t have that privilege and my sense is that those of us who do feel a lot of guilt and shame about not being as productive. We must produce and consume lest we be a burden to society at large. That is pretty shitty. It isn’t the kind of society I want to live in. It isn’t even necessary. I can hear my more conservative friends groaning about people abusing welfare and disability and siphoning up all of their oxygen. Perhaps I’m naïve, but my sense is that when you allow people to truly heal or accommodate for their illness then they tend to be more productive. I know that when I feel well the last thing I want to do is sit around motionless sucking everyone dry like a Lyme infested tic. Pardon my sarcasm, but the rhetoric surrounding government support is often cruel and dehumanizing and I find it very troubling.
I am rambling a bit. I suppose what I am trying to say is that illness narratives can be helpful, self-care is important, but I also think there is value in moving beyond an individual management of illness. At some point perhaps for reasons beyond your control or for reasons that are really in our collective control, you will get sick. Your body will bear the weight of illness and feel weary. Don’t forget that. Advertising will try to tell you otherwise, but you really can’t run away from your humanness.
If I had a nickel for every time someone said that to me I’d probably be able to at least buy a couple of sodas from a vending machine. The first months after a diagnosis of a chronic illness is just time punctuated between waiting rooms. I’ve gotten so used to them that I find them strangely comforting; the rooms whose walls always seem to be painted in hues of taupe or light green, the strange array of magazines, some sort of ficus, the anxious impatient look on everyone’s face. I usually pick up a Time Magazine and absentmindedly flip through it as I pretend not to be eavesdropping on the other patients. When my name is called (and it is usually pronounced wrong) I can feel my heart rate pick up. In those first few months the news is generally not good. Continue reading
It has been almost a year since I’ve written here. For almost half of that year I have found reading or writing anything at all difficult. I’ll sit down to do it and find that the words escape me or jumble around the page. Where have I been? I’m not quite sure.
In October I tested positive for autoimmune disease and it took several months to determine that it was Rheumatoid Arthritis. I’m often in quite a bit of pain, but the pain is much more tolerable than the bouts of debilitating fatigue. It sometimes feels like I am walking through life in a sort of prickly mist. Watching the world continue around me can be overwhelming.
Time has taken on a whole new meaning. It was once something I could take for granted but now it is everything. In a flare-up it moves so unbelievably slow. I am stuck and can’t move. I prop myself up in bed or on the couch and turn on something mind numbing. I’m not a productive invalid — words don’t come. I listen to the noises around me; the television, the humming of air conditioning, my intestines churning, the sound of my own beating heart. I want to turn towards something, but it seems impossible. In an attempt to find flow I often choose numbness and I must admit it is a poor substitute. Time speeds up when I’m not in an active flare. I try to cram everything in hoping that hyper productivity will make up for periods of complete inactivity, but that has also proven to be a largely ineffective strategy. So, here I am trying to figure out a new pace.
I spent a few months in a pretty deep depression, perhaps one of the worst in my life. I’ve always been prone to melancholy, but this was different. I’m starting to come out of it, but it has certainly left its mark on my body. It is sort of like being hit in the head. The initial blow isn’t painful, but the stinging and buzzing last for quite awhile and it is extremely disorienting. I think it is still too soon to go into detail about that experience. I do hope to share it one day, it seems important. At least I’ve come to a point in my life where frankness no longer scares me.
I’m more hopeful now though that I can come to a place of healing even if my RA never goes into remission. Some of that healing work has been dropping a lot of baggage and disappointing people I care about. It means being honest, vulnerable and self-serving at times. It means seeking pleasure over duty sometimes. It also means I have to accept a body that often feels broken and uncooperative. That part is really hard. I think I’m ready to start talking about it more. Stay tuned (if you wish).
It has been too long since I have written in here. I want to eventually give some sort of update on life as lots of new things have developed, but I will save it for another time. Continue reading
I’ve been watching the grackles watch the sky. They look up with beady eyed intelligence as I look down at my feet, both of us planning our next move. One of the first tragedies of my life was the moment I realized I could not fly. I ran as fast as I could with my eyes closed trying to imagine what a bird feels and ran straight into a wall. After the blood was cleaned off the grownups laughed, but I was devastated. Being bound to the ground seemed like a betrayal of anatomy. It’s funny how long you carry those feelings with you without even knowing where they came from.
“Oh! just, subtle, and mighty opium! that to the hearts of poor and rich alike, for the wounds that will never heal, and for ‘the pangs that tempt the spirit to rebel,’ bringest an assuaging balm; eloquent opium! that with thy potent rhetoric stealest away the purposes of wrath; and to the guilty man, for one night givest back the hopes of his youth, and hands washed pure of blood….”
– Thomas De Quincy Confessions of an English Opium-Eater Continue reading
The irony of this blog post is not lost on me. I will write these words and then sync this post with my facebook in the hopes of it being read. In the hopes that my thoughts and experiences are not as meaningless as I often fear they are and that I can be heard and am not alone. I think I understand why humanity is becoming simultaneously more voyeuristic and exhibitionistic…we’re terribly lonely. These are terribly lonely times. And while I appreciate social media and the internet for allowing me to share my thoughts and feelings and read the thoughts and feelings of people I would otherwise not have the privilege of meeting…I often wonder if it is good for us. Some studies suggest it is not and I tend to agree. Though I stay on these sites and have gotten quite a lot out of them I worry that I am harming myself or that the constant stream of information is overwhelming my easily overwhelmed self. But I’ve always loved to write and my ego wishes that it be read…so here I am. I am a contradiction. I be you are too. Continue reading