On the Other Side of It

On and off through my life, there've been periods where my pain levels were so high they coloured everything, lent a patina to everything I said, everything I did, sometimes a smudgy grey film, at other times, a blinding scream and when you're inside of that, there is no stepping to the side to get perspective. There is just somehow getting through it and it can be the loneliest feeling in the world. The people who love you will try to support you, will try to listen as you talk about the pain - because it's hard to talk about anything else - but it is one of those moments I spoke of in my last post where you are completely alone, as alone as we are in death. Your loved ones can stand by, can hold your hand, but ultimately, it’s not an experience that can be shared. There is only you and the pain and whether you get through it with your sanity intact and sometimes, that's doubtful.


A long time after my big flare - sometimes, I think I should capitalize that, it's become such a reference point for so much of what I have learned and lord knows, I link to it often enough - I posted about the experience and about getting my life back and Steph left a comment saying that it was hard to watch.


And this is how self-absorbed you become in that place. It had never occurred to me that this hard time of mine had been hard on others, too. Well, that's not entirely true - of course I knew that the people who cared about me wanted more than anything to take the pain away, because they said so. They told me they wished they could take the pain and carry it for me, even for a day - to which I usually replied that so did I - but the pain was so loud that I couldn't see their experience.


They gave me love, they helped me with practical things, they listened to me talk about the pain a lot, because when you're in that place, talking about it helps, somehow reduces the misery and mystery of it as little. Sharing makes it easier, give you the illusion that for those minutes where someone listens to you or holds you, you are not alone, that they do indeed carry it a little and it is only after that you realize again that no one can. That the only people who truly understand are people who have been in this much pain, that these are the people with whom you can be truly honest, truly show the darkness, because people who are not in pain can get scared by how black it gets and because you love them, you want to shield them from the full experience. But people who’ve been there? Who are there? They know and it doesn't frighten them.


I'm thinking of this for two reasons. One was a post on HealthCentral from someone in such deep despair that death seemed a viable option. She's better now, in large part because she went off the medication that seem to cause this depression, but also because she could be completely honest on the site in a way she couldn't with her loved ones, because they couldn't truly understand. But most of all, I am thinking of this because of a post Beth wrote on Monday about her pain, her experience with the pain and how deep into primal it can go. And it doesn't frighten me to read about her pain РI can hack hearing about pain and besides, if she can live through it, I can certainly hear it - but it frightens me for her and I find myself on the other side of it, knowing how the people in my life felt. Knowing the helplessness, the deep desire to take her pain, if even for a day, because sometimes, a breather can get you a little ahead in the coping. And it feels like such a little thing, such a trite clich̩ to tell my friend that I wish I could take the pain for her and carry it for a while, because I can't. I would, in a heartbeat, but I can't and seeing a person I love forced to be alone in a place of torture when I am (metaphorically) standing right next to her, willing to help, wanting more than anything to help, wanting to wrap myself around her, somehow absorbing the pain through physical contact, but unable to bridge the gap and be of use, unable to give her room to breathe. Being able to do nothing but bear witness, to tell her that I am here and what the hell good is that?


Steph was right.

Comments

Post a Comment

Popular posts from this blog

Weight Gain and Biologics: The Battle of the Pudge

Image
The Seated View has moved .  I am still bringing you the information and support you need to live a better life with RA and chronic illness, just on another site. I'd love for you to visit my new website ! - Lene If you want to leave a comment or question about weight gain, RA, and Biologics and are looking for answers or feedback, please jump to this post on my new site . It has the capability for direct replies, this site does not. You can also reach me at leneATyourlifewithraDOTcom. - Thanks, Lene I’ve known from the beginning that Biologics can affect your weight. When I was on Enbrel, I couldn’t keep weight on, and looked anorexic despite eating like a horse. When I switched to Humira, I started gaining weight. I, who had never before spent much time past a size 6, became a 10. After years of being   literally skin and bones, it suited me just fine.  And then the gaining continued, until finally settling around a weight that requires a 16 pant. Never having been thi
Read more

Real RA: It's Not Just About the Jar

    The drug commercials like to show couples walking on the beach with a dog (it's always a beach with a dog), but real RA is not like that. The image of remission is a return to sparkling health with no lasting effects, but real RA is not like that. This is the first in new series of posts about the ways RA affects your life, the unvarnished version.   Last week, Kelly over at RA Warrior tweeted a link to a post about the silly things people with RA say . It’s a brilliant list of the overly optimistic things that come out of our mouths, such as committing to being somewhere early in the day (impossible because it takes a while to get going when you have RA) or the "me do it" ridiculousness that inevitably brings about a flare in symptoms. Opening jars - or rather, the inability to do so - is often mentioned as the ultimate example in frustration, smacking into your limits and plain humiliation. For Kelly, it's not a jar, it's a set of heavy blinds.
Read more

Farber’s Disease: Could Your Child’s Juvenile Idiopathic Arthritis Be Misdiagnosed?

Image
Joint inflammation or contractures. Nodules (small lumps under the skin or in other tissues). A weakened or hoarse voice. Children with these symptoms may have been diagnosed with juvenile idiopathic arthritis (JIA) or other types of juvenile arthritis . But do they actually have JIA or do they have Farber’s disease? An equine digression When you hear hoofbeats, think horses, not zebras. This is an adage in the medical world that encourages doctors to not wander off exploring rare and esoteric reasons for a patient’s symptoms. Because most of the time, that hoof beat of a rash likely isn’t the plague, the joint pain more likely a type of arthritis than the bends (especially if the person has never scuba dived) and you get the picture. But once in a while, it actually is a zebra. And even if it’s first identified as a horse, eventually, the stripes come through. It took five years of my parents running around to different doctors before one finally recognized that I had
Read more