one year out

Tomorrow will mark one year since I went to the Chronic Pain and Recovery Center at Silver Hill Hospital. It’s unusually unsettling to compare where I was then to where I am now, feeling so far from that moment in my life but also not quite ready to celebrate yet. There’s still so much to understand, and so much to shake out.

When I identified as a sick person there was an entire community with whom I could comiserate. This past year, however, I set aside any diagnosis that was deemed incurable by standard Western medicine. If a doctor can’t offer me more than tools to manage symtoms, I’ve done away with their diagnosis entirely and am seeking alternative treatments. Unbeknownst to me, however, in making this decision I weakened the connection I once shared with the resillient group of chronic illness fighters I’ve grown to know and respect.

In efforts to fill this little void, I decided to look to people who seemed to live the lifestyle I wanted. I found yogis, plant-based foodies, athletes, you name it, but also couldn’t quite relate to their message. I’d try to incorporate something they were doing into my life and I’d hit a roadblock. I wasn’t physically able to do one thing, or it wasn’t medically advisable to do another…whatever the reason, I inadvertantly identified another group of people with whom I didn’t fit.

For a while there was something frustrating about this limbo. Eventually, however, I realized how unproductive this feeling is, and finally stopped worrying about all the little surpurflous things so that I could focus inward; there was, after all, a lot which demanded my attention. That’s when things finally started to click.

Something incredibly fun about starting over, and not having too many people to influence your process, is that the possibilities of where I can let this take me are, truly, endless. There are no rules or expectations for people like me, so I’m free to handle this however I’d like without the fear of not measuring up. Sure, there’s the crippling fear that comes with having absolutely no direction, but that’s mostly fallen by the wayside as I, for reasons I don’t understand, am convinced that I’m on the right track.

So, I guess that’s it for today; one small snippet of the countless things that have changed in one short year.

how are you doing???

I was recently catching up with a friend, and the topic of how I’m feeling came up. This question and I have a long, complicated history. For several reasons over the years, I’ve dreaded it, and even now it continues to baffle me. How do you tell someone that everything is still pretty much the same, medically-speaking, but that life is overall better? How do you express that you’re working towards accepting your health as it is yet you’re in pursuit of 1-3 treatment options at any given moment? If I don’t lose them with my contradictory responses, I most likely will when they ask what I’m doing to manage my symptoms and I answer with a strict diet, acupuncture, and meditation. Their eyes glaze over and/or they think I’m crazy…and that’s where the conversation usually ends.

So, this friend and I are going through things and I’m trying to excitedly explain what’s going on and what’s ahead, and she meets my eyes and earnestly expresses how sorry she is. It was a kind expression of sympathy, but I was a bit confused. I quickly answered, “Oh please, don’t be; I’m happier than I’ve been in years!” She agreed that I seemed that way, but it’s left me wondering how successful, or unsuccessful, I am in conveying how I’m doing at any given moment.

The New Year, a birthday, and the nearly one-year mark since I was admitted to Silver Hill Hospital’s Chronic Pain and Recovery Center have reminded me to examine now and compare it to how things used to be. When I do this, I realize that practically everything is different. I no longer dread making plans with people, I feel a sense of control over my body and chronic illness, and I can clearly see wonderful days ahead. When I get up in the morning I don’t drag myself out of bed wondering how I can still feel so tired. I wake up well-rested even before my alarm goes off, and I’m ready to greet the day.

Things are not different because I got a new job, am in a relationship, or won the lottery. I didn’t get some miracle surgery that cured me and allowed me to fully participate in life. I didn’t even realize that my pain was something I fabricated and have finally moved past it after years of wallowing. Nothing in my life changed, except for absolutely everything. And by everything, I’m pretty sure I just mean me.

So to all who know me (or don’t) and wonder how I am, the answer is short and simple. I am happy.

How are you???

putting down the gloves

I’ve been in a defensive stance for a long time. I used to fight to get to the end of each day, letting my symptoms dictate how I went about everything. Now, I fight to get better – to finally reach some sort of existence in which I’m not constantly uncomfortable.

Lately, however, I’ve been receiving messages that this is not the way I should go about managing my health and pain.

At first, I was incredulous. I may speak of acceptance and how that is my ultimate goal, but to actually achieve this has felt like a pipedream. Yes, it’s a beautiful idea, but my true mental state has been stuck in This life hurts, why would I stop fighting? To stop fighting means that I would wave a flag in surrender. Well, that would be crazy. I can do better than this. Additionally, after over a decade of living in this state, fighting became a part of my self-identity. The idea of stopping didn’t align with my worldview on so many levels.

The last time I found myself on the acupuncture table I was in the middle of a pain flare and a bit of a mess. After reading my pulse, my acupuncturist shared a thought with me. I feel like you’re trying really hard to get betterMy first reaction was, Yes, great! I am! But she continued, gently offering that perhaps acceptance was an approach worth considering.

Not long after this session, I picked up Anita Moorjani’s book Dying to be Me which is an account of her near-death experience while suffering from end-stage lymphoma, and how she quickly healed upon waking. Moorjani offers the reader many lessons she learned following this experience, but a couple stood out. First, she talks about learning to look inward for answers rather than outward, as the changes we make influence our entire universe. “If I’m at peace, all of creation is peaceful,” she writes. Okay, this is interesting and completely aligns with my pursuit of successfully managing my pain without outside intervention. Second, Moorjani writes that our bodies are a reflection of our inner state and that her realization of this during her near-death experience is what allowed her to heal.

It was hard to not actually nod along in agreement as I read this book, that’s how strongly it resonated. So many things she wrote are things I’ve thought before but never strung together or related to my health. Yet it all made perfect sense.

As my meditation practice progresses, I’m finding that occasionally I get the feeling I have truly left my physical body behind. It doesn’t happen each time I meditate and I can’t hold onto the feeling for too long, but when it happens I’m at ease mentally and physically. I don’t feel pain. As soon as I am pulled back down, however, I am greeted by this body that is uncomfortable and I am reminded of my reality.

I’ve wanted to tap into this feeling, to find a way to access a similar state as I go about life. I’ve had no idea how to do this, however, so I just kept practicing. In an oddly ironic way, I viewed the pursuit of this goal similarly to how I trained to run a marathon or master any other skill. I set smaller benchmark goals, I took it very seriously, and I had high expectations for how my hard work would one day pay off. Somehow I found a way to even turn meditation into a battle.

If everything I’m hearing, seeing, reading, learning, and even occasionally experiencing is correct, then I have the power to create my world and all that is in it, whether that is beauty and peace or sadness and pain. At one time this idea would have angered me or would have made me feel that my illness was somehow less real if I had the power to change it, but today I’m excited by this notion because I realize that this answer would mean that there is a way out.

I can work with this.

I apologize for today’s post lacking a certain light, holiday theme. I guess that’s just not where I am right now! Nevertheless, I hope you are all enjoying the Season and getting what you need.