I’m currently sitting in a stunning cottage garden, on a cliff, overlooking the sea, in County Cork, Ireland. It’s gorgeous, peaceful, and amazing. It’s a Tibetan Buddhist Meditation Retreat center, so it’s full of a certain energy. It manifests in the way people talk to each other, the respect they show for the planet, for all life forms. That’s how I want to live my life. I am also in a significant amount of pain. That’s not how I want to live my life, but it is how my life works.
I don’t talk much about the pain. My close friends know and often modify our combined activities to suit my disability. But it’s not how I want to live my life. Today I hiked over two miles with Masie.It was a path following green grasses, over the tops of high cliffs, and through the gorse scrub brush. Up and down hills and back again. The sunshine caressed my face, the wind blew my hair, my knees screamed in pain, my thighs twitched to keep up, my lower back grew weaker and more painful by the minute. Yet, I’d rather take that walk than not. I don’t want to live my life any other way.
If I was a better blogger, I’d look up the statistics about chronic pain and silent diseases. I would tell you the exact numbers of people living with daily debilitating pain and what they suffer from. But I’m not that good. What I can tell you is this: I was diagnosed with severe osteoarthritis in both knees when I was 40. I was in the best shape of my life, training for a half-marathon, running five to seven miles four or five times a week, doing yoga twice a week, riding my bicycle 25 miles twice a week, and I was in pain. A lot of pain. After years of work with a physical therapist and trying to manage it holistically with my chiropractor, they both finally agreed, it was time to see an orthopedic doctor.
His diagnosis was grim. “You have the knees of a 68-year-old woman. It is not a matter of if, rather only when, you will need a total knee replacement in both knees.” SHIT! He went on to tell me, that my knees were actually bad enough to do it then, but because I was so young, they didn’t want to do it. Knee replacements generally last only 10-15 years. If I had them replaced at 40, I would likely be facing an additional two surgeries in my lifetime to replace the replacements!
Now, six years on, I have had at least four additional doctors confirm this diagnosis and add on that I am already totally bone on bone with large spurs under the knee caps. One doctor visibly shuddered when he saw my x-rays! Now wasn’t that a boost of confidence?! They say it’s bad enough that I could have the surgery done now, but I will still face multiple future surgeries. Honestly, the idea of what they have to do to replace your knees; the scarring, the extremely painful recovery, and the whole process, scares me more than the pain I endure. For now, anyway. (Plus imagine how much this all costs!!)
So, these days, I walk up Carlton Hill in Edinburgh with my friend Alistair and stop half-way up, crying both in frustration for what I have become and lost, as well as the pain I am feeling! My friend Masie plans our day trips based on the amount of walking I can endure, even though she is an avid hiker herself. My best friend asks, “Can you manage that?” when we plan tours to the Amazon jungle. I am a liability. I hold them back. I hate that!
I still dream of running.
I wake up depressed and in actual tears when I realize I am back in this broken body. There was a time when running was creating, breathing, and my way of being! If I needed anything; I ran and it all became clear. I craved my body moving. I could bend and twist and not even think about how I was doing it. It was one of the biggest benefits of losing over 150 pounds. I could move! I delighted in that new agile, lean, muscular body. Now, she is gone again. The frustration of not being able to move caused inertia I am not proud of, but can’t deny. For a long time, I was just pissed off! “Fine! If I can’t run, I won’t do anything! Take that universe!” But who was I hurting except for myself?
I do try to stay as active as possible. I’ve traveled around the world and walked and walked and walked. I could only make it half-way up Dune 45 in Namibia. While my companions reveled in the glory of the sunrise from the very top, I was proud of my achievement, getting as far as I did. I cried a bit though, because I wanted to get to the top too. I pulled myself up to the top of the safari truck, awkward AF, but I wanted to sleep under the stars on top. I want to live my life on my terms, not my knees’ terms when I can. For as long as I can.
The more I move the better I feel, but as I told a friend today, “It’s a rough start because it hurts so much in the beginning.” However, in these past few weeks that I’ve been traveling again, I’ve been moving more again too. (One week I logged 22 miles!) My walk today was challenging but it felt good. I felt like I was being purposefully active, my muscles burning, my body doing what it is supposed to do. Yes, there is pain. (Two Aleve are working on that now!) But there is also a sense of accomplishment and a feeling of gaining strength.
Berlin winters are cold and damp. I would be in excruciating pain just walking to the market and back, so I didn’t stay as active as I needed to over the winter months. Now that it’s spring, and I am in the UK and Ireland and even better- soon to be in the “City of Eternal Spring,” I will be able to move more, get stronger again, and just keep moving.
Sooner rather than later I’ll have to have the surgery. It IS beginning to impact the quality of my life. But in the meantime, I am going to keep doing me the best I can. Like your yoga teacher always says, “You can modify this stretch to suit your needs.” I can modify my life to suit my needs, if and when I need to.
For now, I commit to you, my readers, to be more honest about it. If I can write erotica and talk about my orgasms and squirting and other extremely personal things, then I can certainly show my vulnerability and confess to the daily pain I experience. I’ve been nervous and a bit embarrassed to tell you about these things. I’m not sure why. I guess the stigma of disability and pain is a real thing, but I would like to make it ok to talk about. Make it ok for us to discuss openly.
I also promise to talk about it realistically in my writing and erotica. Recently, I wrote a story about a real-life sex experience and included this:
My partner says, “Flip over and get comfortable. Make sure your knees will be ok for a while. Do you need another pillow?”
I get comfortable with my knees spread wide and my center of gravity low, using multiple pillows under my stomach to help support me. This should give me some time before my knees hurt too much to continue, and then I will slide down and let the pillows alone hold my ass up.
I also confessed last week in my “Week in Review” on www.lustitude.com about how much walking I did and how much it hurt. I hope it comes across as realistic rather than whiney. It’s not wrong for us to discuss pain and try to understand the limitations that pain causes in both our active public lives as well as our personal and sexual lives. But there is real stigma and real fear to talk about it and make others feel uncomfortable.
It’s not wrong, but it feels vulnerable and scary. Too many people say things like, “Can’t you just take some aspirin?” Sure, but the pain never goes away completely, and because my knees don’t work right I kind of roll up and down stairs. But yeah- let me just take some Tylenol and join you on a five-mile mountain hike. NOT!
I live in everyday pain. It’s ok. It’s my thing. I suspect many of your friends and loved ones do too, but they don’t talk about it. How about you?
This is added to the Wicked Wednesday Meme- where thankfully they allow me to post these regular stories in the midst of the wonderful sexy amazing erotica posted there too! Go check out the links and you might find your new favorite writer and/or sexy story!