Wednesday, July 23, 2014

Hiking the JMT

     ...from bed on a quiet summer night.

BWCA 2008
Last week Dave and I watched an outstanding independent documentary called Mile...Mile & A Half, The Muir Project . In a nutshell, it's about a small group of artists that "take a month off from life" to hike California's John Muir Trail, the 219-mile stretch from Yosemite to Mount Whitney. Usually these types of documentaries star the more typical adventurists. You know the kind, the "Mt. Everest-in-an-afternoon" kind with ripped calf muscles and million dollar gear. Not so in this film. It's a small group of friends, just like you and I (minus illness...or maybe not), who came up with a crazy idea one night after a good dinner and a bottle or two of wine.  But what I liked about it was that they were "normal folk" on a path to find out what the wilderness had to teach them and to ultimately share that lesson with others. This wasn't about climbing the highest mountain or enduring extreme weather conditions, it was about returning to nature for a duration where time and road were long enough that the weight of what separates man from Spirit was simply to heavy to bring along.

The Canoe BWCA 2008
As I watched the film, I found myself struggling between getting completely lost in the journey and grieving the fact that I am no longer able make that sort of a trip. In fact, what felt most painful was the realization that the ability to dream about making that kind of a trip was gone. I wanted so desperately to turn off the TV, grab a notebook and make my "pie in the sky" plans with the man that I love. Just like we did when we made our plans to travel from the Boundary Waters to the Gulf of Mexico in the canoe he built. When we had those discussions it was very much a reality. Did it ever happen? No...but it could have. Well, right now, at least in the foreseeable future, hiking 219 miles is realistically not going to happen. And that made me grumpy. Very, very grumpy.

What I went through after watching the video is no different than what any one of us goes through on any given day in our lives. It feels desperately specific to my situation as a chronically ill person, but in reality it is not. Oh, how often (if not always) our suffering comes out of our frustration with what is. For me, this transpires quite often into fear. Fear that I am somehow not where I should be in this life. Which usually comes directly after I have judged myself against this platonic ideal of "me" that I quite often compare myself to. There's even a "sick me" that I to compare myself to. But we all do it. We form this picture of what should be, usually a combination of traits from all the perfect people in the world that have mastered said quality, and then we hold that picture up to ourselves in the mirror and say, "What's wrong with me?" When in fact, we should be saying, "What's wrong with this picture?"!  

The only way I know to stop this insanity is to surrender. Yield to what is - don't resist it. Our fear would like to convince us that the only way to solve our problem is to create these negative thoughts. It's the same misguided parenting style that tells us the only way to get a child to change is to shame them. Make them feel bad. Oh, you may get a very obedient child out of the deal, but definitely not a healthy happy child. You and I are no different. After a few days of fear, which was directly transferred as anger toward everyone in my life that was not sick, I decided to just yield to what is. Stop resisting and drop the emotional negativity. Once we drop the negative emotion of a particular situation, once we surrender (stop labeling what IS), we are left with the ability to take action. Positive action. Like I stated in my recent post Eight Months...but then again, whose counting, "Good solutions come out of clear, unemotional thinking." I promise you, if you continue to surrender, give up the negative self talk, you will achieve positive results. How can they not be - they're based on reality!

So, there are no plans in the near future (you don't have to give up hope all together) to hike the JMT (I can at least abbreviate like a pro), but something did come out of watching that great little independent documentary (that I HIGHLY suggest watching). And that is this, that I went to my shelf and dusted off my copy of John Muir The Eight Wilderness-Discovery Books and started to read. And I kid you not, as I lay in bed last night reading, I felt like I was there. I could feel the breeze and smell the grass and hear the birds that he so eloquently describes singing high above me. His joy and wonder became my joy and wonder. There was a stillness that filled me.

Over 114 years ago John Muir opened his book Our National Parks with these words,
The tendency nowadays to wonder in wilderness is delightful to see. Thousands of tired, never-shaken, over-civilized people are beginning to find out that going to the mountains is going home; that wilderness is a necessity; and that mountain parks and reservations are useful not only as fountains of timber and irrigating rivers, but as fountains of life.    
When I return to Nature I return to myself, without all the weight of worldly trappings or that miserable picture of who I should be in my backpack. I would do good to remember this. For just as those six hikers began their journey by saying they left "life" behind and went to the JMT, I would say quite the opposite. They went to the JMT and found life. Just like I did, from the comfort of my bed on a quiet summer night.

He continues,
Awaking from the stupefying effects of the vice of over-industry and the deadly apathy of luxury, they are trying as best they can to mix and enrich their own little ongoings with those of Nature, and to get rid of rust and disease. Briskly venturing and roaming, some are washing off sins and cobweb cares of the devil's spinning in all day storms on mountains; sauntering in rosiny pinewoods or in gentian meadows, brushing through chaparral, bending down and parting sweet, flowery sprays; tracing rivers to their sources, getting in touch with the nerves of Mother Earth; jumping from rock to rock, feeling the life of them, learning the songs of them, panting in whole-souled exercise, and rejoicing in deep, long-drawn breaths of pure wildness. This is fine and natural and full of promise.



My father, me, my daughter Amanda and Dave. Such great memories!
Superior Trail, BWCA 2008


Friday, July 18, 2014

I Think I Have Something To Say

I think I have something to say.

My life, at 48, has been very full.  In my quiet times, I think about the steps I have taken and the moments that have filled the spaces in between.  Some of those moments have made walking easy, graceful. Some moments have created space so large I’ve not been able to take the next step on my own. Sometimes, I’ve simply had to jump.

Jumping was not easy to learn. I was in my thirties the first time I found myself standing on that edge.  Unable to hold onto anything because everything I knew had crumbled below me. Little did I know. So little. Yet, I knew enough to know that walking on rubble was painful and assured uncertainty and weakness.

So I jumped.

Jumping is the frightening thing you do when you finally give up control. It takes a tremendous amount of faith. And if your world has crumbled completely enough, if you truly are standing on that edge alone, then even faith finds itself hallow. Truth ambiguous and elusive leaves the ground soft and unpredictable. Hardly a place to jump from.  More a falling.

I think it’s the falling I have something to say about. That moment when your hand slips the rail, when your feet leave the ground and your eyes loose focus. That moment when things move too fast. That moment you will look back on for the rest of your life and reflect upon what it is that caused you to fall, what flashed before your eyes, and when finally stopping, what it was that caught you and where it was you landed.  

This is the stuff that makes us. It’s the very sinew that holds us together, keeps us on our feet, sustains and restores us, readies us for that next step. These are the stories I have to tell. They are my stories, they are your stories, they are the ancient stories passed down with a unique sort of repetitiveness. As if there is a finite number of moments, yet completely immeasurable in consequence.

Yes, I have something to say. Yes, yes, yes.



Thursday, July 10, 2014

When Chronic Illness Makes You World Weary

This is probably the worst possible time for me to try and write a post. I'm not feeling well, worse than the usual, I'm tired and I am completely overwhelmed by everything "disability". Where do I even begin is an understatement. First, let me be honest. This is not going to be one of my more typical, more positive posts. At least not at the beginning. Knowing my nature, I'll find something good in all of this by the end, if you can make it that far. You may just want to bail out now.

A lot has happened - a lot continues to happen - in my world. The majority of what goes on is all good. I have so much to be thankful for - an incredibly loving husband who does more for me every day than I could write about in a week. A slew of daughters that bring me so much joy and continually make me proud. A beautiful home, good health care... a bounty of blessings indeed.

But then there is this illness. This chronic, relentless, imposing, hungry disease that makes Kubler-Ross's Five Stages of Grief a condiment to my daily issue du jour. It's never ending. Part of why I have not been writing more often is because it's become so difficult for me to actually write. Cognitive function is on the decline. Coming up with words, making sense, tying things together...all those things that for a lifetime have come so easily, now take so much work. Not only does it take work, it takes time. It takes time to read something over and over and over again before it makes sense. Even if they are my own words. And then there is the physical side of actually sitting at the computer. My eyes are failing and doing so in such an odd fashion that the minute I get glasses they don't work. I spent over a thousand dollars on glasses back in May only to send them back. No more of that business. It's easier to just muster through. Another unsolvable mystery.

Then there is pain. Some of it constant, some of it coming and going on a whim. I never know when, where, why. Believe me, I have spent so much time trying to figure out what causes pain - joint pain, nerve pain, GI pain, head pain... I'm giving up. Which I think, at this stage of the game is good. Not giving up giving up. Just giving up trying to figure everything out giving up. Eventually doctors are happy to hear this. I know, it sounds bad, but it isn't. When I first got sick, finding out the WHY was very important. But five years and numerous diagnoses later, it's more "take it as you get it". You learn to look out for the more serious signs and get used to putting up with the fleeting, even if it knocks you down for a few days. So, that's that. That's why writing has been "slim pickins'" as my mother would say.

Toni Bernhard, of How To Be Sick and How To Wake Up, has had some really spot on posts lately on her blog Turning Straw Into Gold in Psychology today. In fact, I think that's what got my creative/frustrated juices flowing. Her last post, What It's Like to Take a Vacation While Chronically Ill, especially hit home. She gives four really good examples of why going on a simple (extremely simple) vacation can cause a tremendous amount of stress both physically and mentally. All good. But her number one point really resonated with me in an area I feel particularly tender towards right now. She stated, "Except for my immediate family and my two closest friends, I didn't tell people I was going." She then goes on to ask, "Why would I deliberately hide a trip from people?" and answers her own question with responses that both comfort me and infuriate me. Comforted because I cannot tell you how good it feels to know that what I am going through is experienced by other people. Infuriated because of the continual isolation that being chronically ill creates. Isolation due to not being able to function at a level that keeps me involved with others, as well as isolation that is created by being judged. The later is what's got my dander up.

Let me be clear. Either I am oblivious to it or I truly don't experience it, but I have been extremely fortunate to have family and friends that have not judged me in this regard. My immediate family knows....knows how sick I am. They have been with me every step of the way and know the serious and unpredictable nature of this disease. They have seen it first hand. Thankfully, due to a lot of very good medication and a superb medical team, I have not had a hospital stay in over two years. But there have been some doozies in the past and we will never forget.

What weighs on me is this. As thankful as I am for the disability checks that pay the bills in our home, I cannot tell you how heavy the burden is to be labeled as "disabled" nor can I put into words the judgment that comes along with that label. In particular, the judgment that comes with trying to prove that disability. There is an odd contradiction that goes on within me when it comes to justifying my illness with entities such as social security or long-term disability insurance. Both of which impart their own level of scrutiny. I would wish for nothing more than to be well. I would do almost anything to return to the job that I loved and the people that made it so. To have to work so hard to prove the very thing that torments me, is at times almost unbearable. And if it were not for our financial situation, I would gladly give it up - every penny, in a heartbeat.

This illness is, by and large, the most horrible thing that has ever happened to me. It has changed my life forever. Every single moment of my life is infused with it. Not one second is spared. What I eat, when I eat, what I wear, what I read, how I sit, how I lay, where I go, when I go, when I wake, when I sleep, how I sleep, what plans are made, who I talk to, what I think...nothing goes without consideration of my illness. To stand in judgment of it as if it were not so - well, on days like this it's more than I can bear. So when Toni Bernhard talks about not wanting to tell people that she is going on vacation, well...I get it. I get it because I have been there myself. There is something terribly wrong when when people with well documented medical illnesses are in fear of being seen out in public when they are having a good day. Or when they're not having a good day, but are just managing to look well for the sake of those they love. And maybe what's wrong is with me. Like Toni said in her article, "Perhaps I let the scales tip in the wrong direction on this one." But to be honest, some days I just don't have what it takes to do the work. To let it go. To be "okay" with it all. Some days, like this day, I'm just weary of it.

Where is the good?

What could possibly be good out of all of this? Believe me, on days like today, weeks like this week, it does not come naturally to answer that question. It takes work. It takes work to not spiral downward. My world is very small sometimes. These four walls get tighter and tighter and problems can look really enormous at times. And they are...

But the amount of space I allow them to take is up to me. There are things that I have learned while carrying on with this ridiculous illness that have become part of my toolkit that do nothing short of saving my life. And maybe they will help you. So here goes. Here's the good...and then some.

1. Be patient...I mean with me, right now, as I'm making these up as I go. Well, not making them up, just remembering them on the fly. Why would I do that you ask? Because this is a really tough day and I am actually using my blog as a journal and working through things. Yes, I am giving and receiving advice at the very same time. And look, I just came up with number one and it wasn't that hard. Nor that informing. So, on to number two.

2. Be patient...with yourself. Don't panic. These things come and go, come and go, come and go. If you look back over the course of your life, just LOOK at how many times you have been in what feels like "life or death" situations. I could come up with a million, yet honestly, I have only ever been in one. And it truly was life or death. And you know what, NONE OF THIS MATTERED. So let yourself be angry, happy, sad, miserable. Feel it, experience it...and then let it go. Good solutions come out of clear, unemotional thinking. Give yourself time for both.

3. Be patient...with your world. The enormous energy behind this whole post is with my frustration of being judged. Yet, as I sit here and spin my tales of "evil and wrong doing" I am, in essence, judging. And maybe justifiably so...but maybe not. There is a lot of unknown out there and my over emotional, fried, chronically suffering mind is probably the last to know the true story. So, try giving your world the benefit of the doubt whenever possible. Our fear is being taken advantage of. Our reality is often quite different. Might as well wait for the facts. Then you really have someone to yell at. Just kidding. Kind of.

4. Grow. Whatever it is that brings you to this point. Whatever it is that has made you weary. In the end - or maybe even in the middle of it all - learn something. I don't know what it is for you, but for me, it always comes down to compassion. Compassion for myself and compassion for my world. In all the shit that happens out there - to us, to those we love, to those we don't know yet find ourselves heartbroken over their suffering - if we take from it the capacity to hold compassion in our hearts, then we understand the way to end suffering. Both for ourselves and for those around us. If I understand what it means to have compassion for myself and for those who hurt me, then I can no longer hold both love and hate in my heart. And if I have love, then I have peace. And if I have peace...

Then I have good.

Thanks for making it to the end. I needed you here.



  When Chronic Illness Makes You World Weary