Journey of a Thousand Miles

Journey of a Thousand Miles

Lao Tzu said A journey of a thousand miles begins with a single step.

May you never in your life have to analyze as intensely, and in such detail as I have had to, what the mechanics are of a single step. We take walking for granted, if it has come easy to us most of our lives, and forget that it is a complex and integrated process in which our entire body participates. If you have been through an injury or illness that takes the ability, or at the very least the ease of it, away… then you know what I am talking about here.  From the ground up I have had to retrain myself so many times that it really can get monotonous.  It is however a means to an end, and I need it.  So… I continue to work hard at it.

To give you a clear picture….  I have a hammer toe that didn’t heal right from a break at age 7 (2nd toe last, left foot).  I have a torn ligament in the same foot (age 22)  that makes the 2nd toe hypermobile, and causes metatarsalgia.  That toe will also dislocate if I stretch just right.. or wrong, I suppose.  As a result, I’ve lost the proper arch in the first toe as well.  I was born with lovely high arches/insteps, and a low ankle bone on the outside, making shoes a big problem my entire life.  My ankles are also weak, requiring constant PT maintenance on my own part since childhood.  I don’t know why, they just are.  I have sprained both ankles twice each, and strained them innumerable other times.  I tore “something” in my left knee at age 16, which a chiropractor indicated was cartilage but I have no imaging to verify it.  I had my first low back injury at about age 15, several other injuries to pretty much the rest of my spine over the years including my neck, and then a fall that really did it all in about 11 or 12 years ago – on top of having degenerative disc disease, thank you genetics.  I sprained the left SI joint in that fall, and afterwards injured the sciatic nerve on the same side.  Can you tell my left side has some issues?  That’s also the side on which I had a concussion at age 18, and the more damaged of both of my shoulders, but I won’t go into that right now.  I don’t think that I am accident prone.  It’s just life.  I adapt and keep going.

More so now than when I was younger, I tend to look at the trail at my feet.  It is not solely because I am watching where I step more than I did before.  It is also because a goal becomes a burden when it seems too far to be attainable, and there is much more to a journey than to simply reach that end point.  When we stop looking around at the path, and everything to experience along it, we become automatons and lose our joy.  I have found that when I look at the few feet around my feet, I can walk much farther, and do so with better ease, than if I keep visually checking the distance to the point that I am trying to reach.  I prefer to mentally see myself already there and let go of the concern about how I will get there.  It also helps to stop and look back when I do need to take a break, because I can see progress.  As a Lupus patient, you learn to be your own advocate.  This applies to life in general, not just Dr visits.  You have to be the one to stop and look back and say, “Look at what I just did.”  Slow progress is still progress.

Work in the corporate world was for me being a part of the walking dead, and it was eating me up day by day.  In a literal sense, my body could not endure it, thanks to the fluorescent lights, enclosed environments, exposure to various toxic and allergenic substances, and then the easily spread pathogens from being crammed together with other people so constantly.  That is not even mentioning the emotional strain for me – for anyone that does not know it, I have social anxiety disorder with panic attacks.  I can hold it together for a while, but eventually a gasket will blow when I am under too much pressure.  It isn’t that I don’t like people.  I just do not have the ability to process a lot of people, strangers, and the pressure of that interaction and deadlines.  The expectations on me when I worked in Los Angeles were incredible, and it tore me down.  Losing that job especially was one of the best things that ever happened to me.  I had enough of that to last me the rest of my life.  My friends that know me from places like Renaissance Faire, and from the online support groups, may never see that side.  At Faire I am with a specific group, and they are very protective.  It is people that I know well, and know that I can trust with my very life if need be.  Anxiety disorders tend to be as misunderstood as invisible physical illnesses.  It is just one more thing that I learn to manage as best as I can and live in spite of it.

Living well is the best revenge. ~ George Herbert

I have been knocked down by a lot.  Bad relationships, injuries, losses, more injuries, illness, emotional illness, you name it.  Those things are not as important as the fact that I get back up again.  I can come up with a lot of reasons not to, and it would be really easy to just slow down now at age 46.  The problem with that is that I slowed down at an age where I shouldn’t have, and I put my life on hold for other people and various stupid reasons – including buying the lie that I SHOULD because of medical conditions.  I could now use that age number as another reason, but I would rather live well.  I would rather be visualizing myself at my goal, and experiencing what is around my feet right now, and drinking it all in than look for even one more reason to quit.  The dirty little secret that no one likes to talk about in the Lupus community is that most of us have been to the point of considering ending it all.  At least once.  Intractable pain that is not being addressed by our medical “professionals” is the real cause of depression and loss of quality of life for Lupus patients.  Until we each find our way to break that cycle, waking up each day is a drudgery.  I am happy to say that I have found my solutions, and regained a center… a balance… but where that takes place is different for each of us.  I can set up guideposts from my experience.  Then you have to figure out which ones are right for you, wherever you are at.

An awareness of death encourages us to live more intensely. ~ Paulo Coelho

It should be motivating to realize that we are in finite bodies.  If there is something to experience that will enrich your life, stop putting it on hold.  Take the first single step.  Waiting until you can do more than you can right now will keep you suspended forever in an inability to progress.  Decide on a direction.  Take a step.



2 thoughts on “Journey of a Thousand Miles

  1. I completely agree. While your looking at the ground by your feet-I’m just walkin…sometimes I don’t look around-I just GO. I know loss of mobility though-with severe PF (plantar fasciitis) it absolutely stripped me of the ability to walk. In denial I’d leave the house for work anyway-knowing I had a quarter mile to the bus stop and a half mile from my last stop to my work office. There were times I’d have to just STOP-close my eyes and imagine myself scuffling the rest of the way on my knees (anything to not have to try and walk-it hurt too much). I’d wear my orthopedic boot at night which would give me a little bit of walking ability in the morning. And your right-you don’t realize what WALKING is until you can’t. When I told my pain mgmt doc about my PF he said, “Oh, I can fix that!”. And I thought, yeah sure you can. (rolling eyes) But he did! He gave me cortisone shots right into the bottom of my feet-and the results were IMMEDIATE. I get them now regularly.

    Also have had small fiber neuropathy over twenty years now and now have nerve/muscle issues- tarsal tunnel and pereanal neuropathy- so I know pain very well and what having foot problems can be like. So when I hear people with neuropathy saying they’ll end up in a wheelchair-all I can think is WHY WOULD YOU SAY THAT? WTH?

    What gets into people? Why would you proclaim defeat without so much as a fight? I’m no different than anyone else because that’s how I see myself. I like compassion and empathy and special understandings of my needs. I don’t like thinking of myself as someone who is different. I’m just like you-cept when I go out I might use a titanium umbrella to protect me from uv rays that cause me rashes. I’m just like you cept I don’t eat sugar. I’m just like you cept I take alot of medicine every day. These aren’t WHO I am-they are just my “clothing”, my “armor”. Underneath it all we are all the exact same with the same body parts, potential and abilities to nurture.

    I’m glad your my friend and I’m honored to be with you on your journey. I hope you inspire others like you do me-they would do well to listen to your patient wisdom-not everyone has your talent for being non-assuming and good with words. Much respect, JJ

    • You are so right about giving up (proclaiming defeat) without a fight. We have both seen it repeatedly, and I do not understand it any better now than I ever did. I have been to a defeated place, but it was not without much screaming and kicking first. I only hit that point ONCE and then I felt the need to leave that place. What matters is whether you decide to set up camp and live there or not. I realize I may seem harsh to people at times, but it is born out of having experienced agonizing despair and knowing that the way out requires a decision. It’s that I know it usually takes some tough love to get a person moving again when they’ve stalled out. If I pat someone on the head and tell them it’s okay to wallow, they’re going to be looking at me later and wondering why I didn’t say get up and move. I’ll take the risk of some people thinking I am not sympathetic enough if it means boosting even one person out of that pit. We all have different levels of capability, but we all have capabilities.

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