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

Eight Months...but then again, who's counting

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.




Friday, November 8, 2013

Seven Months

Seven months. That's how long it has been since I last posted on this blog. As I sit here and type, I wonder where I went. I wonder where you have been. I wonder if you wonder. Life is so funny. No, actually, Life is Life. We are the funny ones. Life just is. It is, in this second, like it was 5000 years ago in a second back then. The sun rising and setting and all that happens in between. We stick things in there like "time" and "good" and "bad". We organize and label that which either works in our favor or doesn't. And then we tell ourselves the appropriate story for the situation at hand. This was good, this was bad, this made me happy, this made me sad, this should have happened, this should not have happened... and so it goes. Winding ourselves up and calming ourselves down. It's so easy to get carried away in our idea of Life. I have had more than one doctor tell me I spend too much time up in my head. It just happens so fast. Electrons firing off in our brains like busy little ants preparing for... I don't know, everything!'s just Life. So natural and so easy. It sits there looking at us like a kind Grandmother, smiling. Patiently waiting for us to figure it out, all the while, smiling. We cover the earth with a sort of frosting, trying to make it just so. But it already is just so. Just perfectly so.

Seven months. Where to even begin. I've got seven months worth of things to write about in my head, but I feel like I need to catch up. Put a few things out there and let you know how I am. I think that if I was following someone with a fairly significant health problem and they disappeared for seven months, I would want to know a little bit about what's been going on. The nuts and bolts. So here it is, seven months of nuts and bolts for you to make of it what you wish.

There was love and there was lots of it. 

There were also difficult days. Last winter was a tough one on me in regards to being or feeling home bound. We had months and months of snow.

In fact, this one came in April and we had another one in May. 

I did manage to get some painting done. This one arrived out of a space of great pain and ended up in a space of great love. This was also the last painting I did. With Spring on the horizon, I didn't want to be cooped up in the basement. I longed for the outdoors. 

Dave and Maddie spent the winter caning the seats for their canoe. April saw the finished product.

I learned to not store popcorn in the oven, even if it does keep it from getting soggy. One has to actually remember it's there before doing something like....oh, say, preheating the oven. 

May saw the last of the BAC dates. (Big Ass Canoe) Here Maddie and Casey are helping Dave and Grandpa put on the gunnels. It takes many strong, quick hands to accomplish this task!

Gunnels complete! Ready to finish her up for the scheduled Father's Day Launch.

Ta-dah! Father's Day weekend the long awaited canoe saw it's first voyage. The canoe was seven years in the making. This was a glorious day.

Dave and Maddie, father and daughter, sharing one of life's best moments. 

June brought lovely, lovely weather. By the end of the summer these baskets touched the deck floor. I spent as many moments as I could out here, listening to the birds, smelling the fresh air, watching the clouds float by. Being still. 

July brought a new bike. For the first time in four years I felt well enough to venture out into nature on my own. I'm not sure if it was the fact that I began a much more rigid diet or if it was just a wonderful gift, but July and August were the best two months I have had since becoming sick in 2009. We went on a mission to find the most ergonomically correct bike for me and after one miserable attempt (and return) we found this one at a bike shop just blocks from our home. 
It's like riding the wind. 

And off I went, almost every day, in a different direction, for two months. 
Some trips only minutes long, and some hours.
It was glorious.

The wonderful thing about where we live is that depending on where you go, there is always a wide variety of landscapes to see. Just turning down a road can lead from farmland to woods or from woods to rivers or from rivers to lakes. And every road is paved. There were days when I ventured out that I never saw a single car except for when I was close to home.
The quiet is nothing short of holy.

These are my feet, outside, near water...and not in bed at home. They were very, very happy feet indeed!

Less than a mile down the road from our home lives the Apple River. I would stop on this bridge and just listen. Alone, hearing her voice, knowing the words being spoken had never been heard and will never be heard again. Listening, letting go, listening, letting go, listening... As her voice slipped though my fingers and landed in my heart. 
Listen....let go. 

In July the crops looked healthy and strong. It seemed as if the season would be perfect. But summer would have a different idea. The rain stopped and the drought moved in. It was difficult watching the luscious green leaves turn gold before their time. Harvest would come early, if you were lucky, but for most, not at all. 

These guys live right down the road from me. I'm pretty sure they think I'm crazy. 

This is the road that leads past the cows. One of my favorite as there are very few hills to speak of. It also leads to miles and miles of nature preserve wetlands. 

One of the many ponds/lakes along the way.

The land beyond this sign is covered in grasses and wildflowers native to this area. It also surrounds a beautiful lake that is almost impossible to get to. I would park my bike behind this sign, go stand out on a hill and just wait. All kinds of wild life would surround me. Mice, gofers, deer, eagles, hawks and more birds than I could even begin to name. All busy moving about. Like life does.
It was this day, just moments after I took this picture that Dave called me to say that we needed to leave right away for Florida. His sister Linda was nearing the end of her battle with cancer.
I'm glad I was here when he called. I didn't rush off. There were things that I needed to hear. Holy things. Peace-filled things. 
I will never forget this moment.  

These guys played a little game with me. As long as I was moving, they were moving. If I stopped, they stopped. It was actually quite hilarious. It felt like an odd combination of Red Light Green Light and Duck, Duck Goose!

Horses are big around here. I would have loved to spend more time visiting with them like I did with the cows, but where there are horses, there are horse flies! Not something I am even well enough to peddle FAST enough to outrun. They are NASTY. Period. 

I so wanted to open this gate and walk in. Maybe next year. 

Another wonderful tidbit about this area, unless you are where there are horses (and horse flies) there really are no bugs to speak of. Not sure why, but it is so nice to find a spot like this and just sit on the grass and soak it all up, un-devoured by the common mosquito. 

In August we took this picture. We (Sara, me, Dave, Emma) were going somewhere, I can't remember where. That's not the significant part. The significant part is that I felt really good here, and we were going somewhere

One place we could not seem to get to was our trailer. So we brought her home and made the decision to let her go. I think what we realized most was that having seven daughters and being chronically ill does not bode well with being a weekend warrior. As much as we long to "get away", what we truly long for is to be with our family. SO... she now resides in a morton building somewhere in Wisconsin and a lovely couple from DeMoines, IA will pull her somewhere in the Spring. 
And so life moves on...

And these kids are here to prove it! This summer found all sorts of fun with these couples. From left to right - Aaron and Anna, Tucker and Emma, Drake and Sara. Three sisters, three really wonderful young men. Endless fun and laughter. I just can't get enough of them. 

This just makes me happy. 

August also saw the wedding of two of my dearest, most treasured friends, Jeana and Susan. It was a monumental event in many regards, but most of all
it was an event of the heart. This was a long awaited
day and it is one that will be etched in my
memory for all of eternity. 

I'm glad I listened to the river. And the wind. And the mice. And the birds. Because September brought a change of seasons for me as well, and I had to let go.  I tried, for most of September, to weather the storm on my own. But this one was relentless. Most of September and most of October looked just like this, and I am still struggling. There were some occasions where I managed to get out (thanks to major pain medication), but for the most part, this was my space. 

One of those occasions was to watch my oldest daughter Aleela run in the Twin Cities Medtronic Ten mile. This race is part of the TC Marathon weekend and very difficult to get in. She and I used to run marathons together, but since I have been sick, she has promised me to not stress her body to that extent any more. This is me, in the brown coat, waiting for her to run past. 
I tried numerous times to cheer the runners, but the emotion was so stuck in my throat that every time I opened my mouth I started to cry. 
I stood silent and waited for her 
to come. 

And here she is. In all of her fullness and beauty. She is a wonder and a miracle to me. Her journey on this earth has not been easy, yet she has walked it with the grace of a women much wiser than myself. 
Every time I am with her I learn something new about life. 
I am in complete awe of the women
she is becoming. 

October brought Amanda and Daniel home from California to celebrate their engagement! They don't get to come home often, and many times it's only Amanda. This time it was both and it was for almost an entire week! 
Other than the celebration dinner, most of our time together was spent in the kitchen over a cup of coffee. One morning we started talking and the next thing we knew, the day was almost over. Minutes fly by like seconds with Amanda. I always tell her that I wish I could have had her as a friend in my youth. 
But even better yet
she is my friend now. And that's as good as it gets!

My five daughters at the engagement party. This maybe happens once a year!

And here we are! Me and Mr. Johnson!
The love of my life.

The Three Amigos. 
The Three Musketeers.
The Three Mousketeers.
The Three Stooges. 
The Three Little Pigs. 
These three absolutely CRACK ME UP. They spend a lot of time at the house simply bringing joy to everyone around. I cannot imagine a day without these three in it. 

Aleela, Adella and Keith. 
Wow,  no one could have ever prepared me for being a Grandmother. 
Just when you think your heart can't get any bigger, 
grandchildren come. It's a love like none other and I just can't
get enough of it!

And then there is engagement number two! I guess I should be prepared for things such as this. I imagine that with seven daughters events might begin to overlap and pile up a bit. But what a wonderful and welcome surprise this was! 
Aaron and Anna. 

So the days are getting darker here again. Lions are laying down with lambs and the chaos begins to still. We had our first real snowfall yesterday and there seems to be some sort of quiet announcement in the air. No use not listening. 

As I type this I am rushing the last letters in order that I should hop in the shower and get ready for yet another doctor appointment. This one with my neurologist, the good Dr. Walk. He's been with me from from the very beginning, one of the best.

Doctor's appointments have a way of creating a bit of anxiety in me. There is a certain amount of "emotional investment" that never seems to do any good. Remembering to keep my expectations in check is key. I told Dave the other day that there is always this small part of me that thinks things will be better. Like really better. Like "this is the answer" better. But most times its just finding out that nothing has gotten any worse and coming up with a temporary solution to the issue at hand. I walk out of the PWB building where Dave is always waiting for me. I climb in the car, he asks me how it went, and I cry my tears. By the time we hit Highway 280 he has worked his magic, gently held my hand and brought a smile to my face like only he can do. 
No need to frost this life of mine.
It couldn't possibly be
any sweeter. 

Just perfectly so. 


Friday, April 5, 2013

Dork Alert!

So, this is how life is...

There's something to be said about lupus fog...and the effects of multiple mind "affecting" medications. One of those somethings is that you can't remember anything. Or at least, anything you want to remember. So, here's a little story about my life.

About a year ago, during the height of my blogging, I was finding myself becoming involved with a number of what I would call, "professionals". People who have successfully written books and are now professional writers/bloggers. This is pretty much ego candy. Especially when you are housebound and no longer in the career world you loved so dearly. It feels good to be socializing with the bigwigs. I had found a new purpose in life.

During this ego frenzy I was having issue with one particular writer/blogger women. For whatever reason, I got the feeling like we were competing. And then the ultimate happened. She had written something that I felt very passionate and knowledgeable about. I spent a significant amount of time composing and re-composing a comment to this particular blog post. As I hit the "post" button I felt really "psyched" about what I had written. So much so that for the next couple of days I obsessively and compulsively checked her blog to see if she had reviewed my comment and written her response to it. In my head it went something like this,

"Dearest Theresa (of course, she would call me by name, unlike all the other anonymous, canned responses to other less educated responders).
Your comments have "resonated deeply within me" (this is a big one in the blog world) and I find myself changed forever by your words...." 

You get the picture.

Day one passed, no response. Day two, day three, and so on. And then I started to notice that people that had written days after me had been reviewed and made public for all the world to see. Yes, she had decided, for whatever obviously mistaken reason, to not "allow" my comment to be viewed.

Of course, I did not save a copy of my response to her (why, that would be extremely vain), so I went over and over in my mind what could have possibly disagreed with her. Had I been too cynical? Was I over emotional? Had I rambled on and appeared too self-edifying? I had I written too late at night and said something totally incomprehensible? Was my response so brilliant that she somehow felt threatened by me? Or was I so beneath her that it would have been too embarrassing for her to allow it to be seen? And on, and on, and on my brain went. Until my stories became so painful that I Unliked her professional page on facebook, Unfriended her personal page and took her blog off my Google Reader. So there!

I decided, out of sight, out of mind. And I moved on.

Until today. Months and months  and months later.

For some reason one of her posts showed up on my facebook feed. And it was really good. Before I read it (it was a link that directed me to her blog) I had an ever so brief quiver of "hey, I don't like this lady" but clicked anyway. And it was excellent. Just like before the separation (yes, I'm pretty sure that out of her 68K fan base she missed me terribly) I was completely moved by what she had to say. Poignant and beautiful. Straight to my heart....yes, it resonated deeply. I fell in love with her all over again.

And now for the kicker. I have no idea, no recollection, no memory whatsoever of any details other than I know I got my feelings hurt. None at all. Nada. Zip. Zero. I'm a blank slate.

So, I find this interesting (actually a little hilarious) on two levels. One, this is indeed one of the perks to having a severe case of lupus fog. I feel no pain. Two, what a great lesson to be learned here. Oh, how we create our own suffering! For all I know, she simply forgot to review mine. Or I somehow missed it. Or her computer crashed and she lost a few responses to the great black Internet void. Who knows?!?! Definitely NOT ME! Yet, look at all that I put myself through. Let me tell you, I went through ego hell for days on end. I practically felt like I had lost everything and was doomed to become a mush-mind, thrown into the depths of the forever unimportant and unproductive. It was harsh. And yet, here I am, back in love with this amazing writer, this beautiful women with whom I find I have a deep connection with on so many levels. Poof! Just like that.

The moral of the story is this: Don't let it take 365 days. We have the choice right in this very moment to wipe it from our slate. Poof! It's gone. Just like that. Because almost always, we don't know. And even if we do know, 100%, beyond the shadow of a doubt KNOW... we still have the choice to let it go and continue on loving.

It's our choice. Period.

Today, I choose love. How about you?

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