Endurance

Having a disease like Fibromyalgia is not easy. I would say it is one of the hardest experiences I have ever had to endure. It is frightening, painful, isolating, demeaning - in every way a nightmare. It's made even harder when the ones you love don't understand it.
I want everyone to know that, before I got sick, I was an extremely active person. I used to hike, camp, ride bicycle, walk, do crafts, quilt, sew, scrapbook, cook. As a teenager, I play softball, tried basketball, enjoyed  volleyball, mowed the lawn, was in the marching band, and participated in all number of other school activities. I even lifted weights and ran. I would have been on the track team if we'd had one at my school.  I was literally hyperactive (although I didn't know I had ADD at the time). As I got sicker and sicker, I sought a cure that would return me to my active self. After awhile, I figured I was just getting old or lazy. Many years and multiple diagnoses later, I finally found out what was going on.
But in the meantime, I isolated myself from friends because I felt bad every time I had to cancel at the last minute. I despised them thinking of me as rude and uninterested in our friendships. I felt like I was the worst best friend in the world. I loved these people, but couldn't seem to make time for them. And I didn't know why.
More than once I thought I was losing my mind and falling apart. Even now that I know what is going on, I feel that way.
My husband was able to stick through me when I was sick with something that could be fixed - a gall bladder removal left me out of it for a few weeks. I was vulnerable and obviously too sick to do much besides sleep and stare at a TV screen.
And then I got my diagnosis. I started medication and it seemed to finally be helpng.  And then a few weeks later, I lost my job. And relief became nightmare again.
No insurance means no medication for the woman with the chronic, debilitating disorder. No medicine, no treatment, no doctor's visits, no medical support, no solutions. A sick economy means no jobs for the woman with a chronic illness but a dual college degree and work experience.
And then my husband decided to leave me.  And, because I know the set of problems he faces in life, I convinced him to physically stay because I knew he needed to know he had a place whee he was still loved. And I hoped to work things out.
Have I mentioned that high levels of stress negatively effect Fibromyalgia?
And that we had to accept help from a relative to survive?
And, in the middle of that, I decided to do something I'd wanted to do for years. I went back to school.
I accept some work. And then my husband got sick and had to be hospitalized for a week. My hell week.  I started a new temp job, my husband was admitted to the hospital, I'd just adopted 2 kittens, and my first week of classes started. To this day, I am not sure how I managed to survive that week.
Somehow, several years later, I am surviving. Someday I hope to be thriving again. If I can.
In the meantime, I endure...
day by day.

Standing still in the center of the storm...

"Imagine your life going by and not having the energy to keep up."

Oh, wow, does this say it wonderfully. And this is totally what I am immersed in today. Fibromyalgia has stolen my life and some days it is obvious to me. Other days, I survive on the hope that it will be better, that I will be stronger, that the pain will be less and my energy level will be more. And it's a very lonely place to be, because I think most people don't understand this. I feel left behind. I feel time passing and I am standing still. for the first 25 years of my life, roughly, I epitomized the John Mayer lyric "She's always moving, just like neon." Now I only move because I'm trying to minimize the pain. 

If I had the energy to do what I want in my heart to do, I would be scary to behold. I am not lazy and fat with some made up disease. I want to move mountains and I'm willing to do the work to do that. But there are days it takes all my energy to move myself up and down stairs and to the kitchen to cook anything. This says it beautifully. I can't keep up. And suddenly it's 10 years later and the person who used to camp and hike and canoe and sing and quilt and write and run and work is gone. And I don't even recognize the person in the mirror. 

I can't help but think of all the things that I probably will never do now. All the things that maybe I'll never do again. Standing on top of mountain I have hiked up. Waking up to the smell of a wood smoke fire and the sound of birds chirping above me in the trees. I always slept better camping than any other way. Now it feels like torture to wake up on the ground, assuming I could sleep that way at all. To sit calmly, quietly and still, listening to the natural world around me. Now I have to move every few minutes as the muscle pain catches up to me again. Feeling the strength in your limbs as you walk - the exhilarating feeling of your body move as designed. I can't clearly remember what it feels like to be comfortable anymore. 

How does a person not get depressed? How does anyone find a way back to thriving? All I know is to take it day by day and try to hold on to hope and to concentrate on the blessings I have and what I can do. I try to stay positive and find things to laugh at and smile at and take my mind off the multiple layers of pain that inhabit my life. My passion, my love, my hopes - they still reside somewhere inside me. I try to hold on to those. And if somehow, in all of that, I can make someone else smile or lighten someone else's load - well, then, that gives me a reason to still be here.  

The Times They Are a Changin'

I have been finding myself having a lot of conversations lately where I'm uttering the phrase "The rules have all changed in the last few years." These conversations range from socializing and shopping to job hunting and world politics. I am certain I am not that old. Yet from the time of my "youth" until today, the world is a completely different place.

When I was a kid, we didn't have cell phones. Think of it - not being available 24-7! What an amazing idea! What did we do in an emergency? Answer - we fended for ourselves and we did things like walk to the nearest gas station. We walked to someone's house and asked to use the land line. We didn't worry as much about not being able to handle a situation when it came up. We relied on each other more than we do now. 

I know every generation says this, but I think it's true. People were friendlier and less rude than they are now. Not everyone, mind you. But if someone wasn't a nice person, they were considered to be "that cranky old hermit-guy" or "that crotchety old lady." More and more these days I see people doing crap like strolling out in front of traffic expecting everyone to stop for them. There is less consideration these days for other people. We seem to have this new awareness of the length and breadth of the world and less and less awareness that this world does not revolve around us. Maybe it's because so much as been "personalized" that so much is less personal in terms of relationships. There is so much pop psychology out there that everyone is psychoanalyzing everyone else and no one is actually building relationships and getting to know people. 

We have a new world of people who are at once savvy and entirely naive about the way the world really works. They believe that you should judge someone by what's inside, but at the same time think it's okay to call someone "fat" or "whore" as an insult. They call their best friends "bitches" and use the "f-word" as emphasis in every other sentence. They think seeing a "current" picture on a social media site protects them from old people "masquerading" as young people and that means they are safe.  They think texting while driving is safe and see nothing wrong with posting "fml (f my life)" when the tiniest thing goes wrong. They believe in disposable relationships. 

Notice, I am not labeling any particular generation in this? That's because I have seen this behavior across generations now. Baby Boomers, Gen Xers, Millennials. It's all of us. We have created a world that is freer, more open-minded, more aware that we live on the same planet with millions of others, more aware that people do things differently. And that's great. But we are also less connected, more blind, less self-aware, less communal, less accepting and less willing to work together to accomplish big goals. We are less aware of history and less willing to learn the truth about things. And that is a very, very scary combination. When we are too tired or too stressed or too lazy to learn, we are susceptible to forces that aren't. 

"All it takes for evil to prevail is for good men to stand by and do nothing." paraphrase of Edmund Burke by way of John F. Kennedy.

"Those who will not learn from history are doomed to repeat it." paraphrase of George Santayana

This is the kind of culture that spawned the rise of the greatest dictators in the world. The greatest deceitful and charismatic propaganda. It leads to people being herded, sheep-like into pens they didn't even know where there until suddenly the gate is shut. And even then, some people don't see it. 

I'm not saying that politeness is any better. In the United States, the 1950s saw some of the greatest social repression and that was because everything was lacquered with a thin veneer of politeness and propriety. The 1960s and 1970s saw so much upheaval because people were tired of being repressed. But I sometimes think we went too far in the name of freedom. We pushed so hard for personal freedom that I think we forgot about responsibility. 

It is said that history is cyclical. If that is so, we will probably see a push back and lines drawn all over again. I'd like to think that someday we're going to see the balance that is needed, but that probably will not happen in my lifetime. The scary thing to me is that I am not sure just where we are heading - somewhere new or back into what we've already been through because there is no one looking backward or paying any attention to the "elders" because no one thinks they have anything valuable to say any more. In a time of rapid change (what Toeffler calls "The Third Wave"), everyone wants to judge progress on the next new invention. We are not valuing our historians and our elders. After all, in a youth culture, who wants to see anything of value in the old?

This is not to say that age alone brings wisdom. The truth is that neither being old or young makes you more qualified to judge anything. It is simply that knowledge is important, and ignoring knowledge of the past is a dumb thing to do. The arrogance of youth is to believe that "everything is different today than it used to be" and the truth is that this isn't so. People are people, no matter what age you are in. We look back at history, after all, and think that we can judge people from that time. Very often, we can, in basics, but we do have to take into consideration the time period. Motivations often remain the same- all people have passions, dreams, desires, fears, things they are proud of, things they despise. Human relationships have not changed over time. 

"The greatest thing about getting older is that you don't lose all the other ages you've been." - Madeleine L'Engle

I find myself wondering what people will think of this time period if we survive to look back at it. I don't think it will be looked upon favorably, despite the rapid technological advancements. I keep thinking that this must have been what people felt like in the 1890s and 1910s, during that explosion of technological advancement. But I think this is different. Like many things, however, I believe only time will tell. History is going to have to be the judge of whether or not these changes are for the better or for the worse. God help us all.