Friday, August 26, 2011

Who Do You See?

Who do I see?
I seem to be thinking about reflections a lot these days. It was only two weeks ago I posted about the reflection of my oldest daughter Aleela  And then more recently, in my post entitled Out Of Bed And Into The Yard, I spoke of how Life truly is a reflection of ourselves - our inner most self.

Over the past week or so I have had to spend a lot of time at the University of Minnesota Medical Center. I try to plan all of my appointments on one day since the facility is located in Minnesota, and we live in Wisconsin. Plus, my husband is my official chauffeur as well as personal care attendant. By combining appointments we minimize the amount of time he has to be away from work.

Since I am still quite weak and pain is a constant issue, he unloads me straight from the car to the wheel chair. Me, my purse, my water bottle and up until this past Wednesday, my lovely Foley catheter...or "pee-bag" as my endearing children call it.

Sometimes, if I am not too worn out, we have stopped at the grocery store to pick up a few things on the way home. On occasion, I have wanted to go in with him. There, he unloads me straight from the car to the motorized shopping cart. Me, my purse, my water bottle and my pee-bag. This was instantly noted on facebook by one of my daughter's friends - "Hey, saw your mom today at Walmart. She was driving the electric cart!"

This might all seem quite innocuous. In fact, if I were about sixteen and being the goofball that I was, it might actually be kind of fun. Kind of like wanting to drive a golf cart around on our town streets...or the lawnmower. Or it might even feel a little bit good, like when I got crutches for the first time. I couldn't get to school quick enough! Oh, the drama!

One of the most common issues among many people with chronic illness is the "invisibility" of it all. There are a host of sites out there that address the issue, like Invisible Illness Awareness, But You Don't Look Sick and Not All Disabilities Are Visible. To struggle daily with debilitating illness, which can at times be life threatening, and to hear "You LOOK GREAT", is most definitely a mixed bag. I remember reading a story on the issue about a year ago. The women writing had been suffering from Lupus for over fifteen years and had found little in regards to support from friends and family. And this women suffered from a very serious form of Lupus, Lupus Nephritis, in which the kidneys are damaged and eventually can lead to kidney failure. She had almost lost her battle twice before undergoing a kidney transplant. She wrote her story after experiencing a broken leg which required her to be in a wheelchair for four weeks prior to using crutches. The sad part of her story was the fact that she felt she had received more support over her broken leg than she had received in the accumulation of all fifteen years that she had suffered from Lupus. I won't get into all the details of her story, but I must note that she was a remarkably amazing women and used this knowledge to improve not only her own life situation, but the lives of many others.

I consider myself extremely blessed in regards to the support I get from my family and friends, as well as the vast network of friends I have made through One Moment One Life. Not once, in all the seconds of this relentless illness, have I ever felt lonely or longed for support that was not there. My heart aches for those that travel this road alone. I can not imagine it. But I have understood the complex balance of feeling so terribly sick, yet striving to remain positive and not become a burden for those that surround me. Don't get me wrong - I am in no way stating that I think we should ever "be" something that we are not. But those that struggle with this issue know the importance of taking care of our loved ones as well. I think of all the mothers, wives, sisters and daughters out there that force themselves to get up and showered each morning, struggling to stand up from the weakness that pulls them down, pressing make-up onto places that refuse to be covered - just so that we don't "look too sick" and cause another day of worry to those that love us. All the while, longing for just one day free from the pain.

So, I was surprised and a little bit confused by the emotional process that I went through when traveling the halls in a wheelchair the past few weeks. Having not "lacked" in need of support or understanding, I was not surprised at my sense of neutrality in that regard. In other words, it didn't "feel good" to "look sick". There was no vindication. But this is what did strike me - and has been with me ever since  -

The eyes of those looking back at me.

I couldn't figure it out at first - what I was seeing or how it was affecting me. And maybe I'm still off base or a little impaired by my own situation. But this is how it felt

We are afraid of what we don't know. We are afraid it could be us.

I don't like riding in the wheel chair. I especially did not like the pee-bag and tube that I tried to hide in my beautiful home made bag that my daughter Amanda made for me. I know that the embarrassment that I held for myself affected my demeanor. I could feel it in my posture and the tone of my voice as I spoke to people. Once I realized what I was seeing, there was a change in me. I felt compassion for those that I was passing glances with. Like I no longer wanted to match hasty glance for hasty glance. I wanted to reflect the beauty that I was seeing. The human being I was seeing deserved a human being in return. And in those moments, I felt completely connected, on a level that is difficult for me to even explain.

I want to say that I don't know what changed. How I looked at the world or how the world looked at me? But I do. Because I believe that the world IS a reflection of ourselves. That Nature, and life in general, DOES wear the color of the Spirit. And in finding ourselves in others, we find compassion. And in finding compassion, we find ourselves.

What does your world look like to you? Who do you see reflected in the eyes of those you meet...
or in the mirror in front of which you stand?

I see you, and you are beautiful.    


Friday, August 19, 2011

Out of Bed and Into the Yard!

Today is a new day.
Just so you know...
This is NOT where I am at right now!

I decided that today was the day to venture outside...
Along with Jenni the cat.
I believe she's got the right idea.

The first thing I notice is that the Gerber Daisy that Roxi gave me has come back from the dead...we're talking serious dead. Prior to me going into the hospital, this plant looked like badly cooked spinach.
I guess she's not the only thing coming back to life...

As I rounded the bend - which, by the way, is the part of the deck Dave built around my favorite pine tree - I begin to see some of my sunflowers. The ones growing out of the pot...our little thirteen striped gofer planted.
I guess he thought the arrangement was lacking.

The sunflower garden is in all stages - some have already bent their heads towards Fall, while others still bloom.

These are the tops to of the 12ft stalks...still reaching out towards the summer sun.

This is one of the pines that I have been watching from my bedroom window. The summer has been so perfect for new growth. Usually by this time of the year the pines are a much deeper and darker shade of green.
I make my way down the stairs... get a closer look.
How beautiful, how soft, how fragrant! I am completely amazed at the beauty, the intricacy, the miracle before my very eyes.

Thanks to my daughter Sara, all of my flowers, both potted and wild, have survived my absence.

A few wild sunflowers growing in among my tomatoes!

With all the rain, the yard still looks like Spring!

I make my way up the walk and back into the house. 
A long journey from bed, indeed!

Some of my favorite pieces of Ralph Waldo Emerson are his writings on Nature...
"The greatest delight which the fields and woods minister is the suggestion of an occult relation between man and the vegetable. I am not alone and unacknowledged. They nod to me, and I to them. The waving of the boughs in the storm is new to me, and old. It takes me by surprise, and yet it is not unknown. Its effect is like that of a higher thought or a better emotion coming over me, when I deemed I was thinking justly or doing right. Yet it is certain that the power to produce this delight does not reside in Nature, but in man, or in harmony of both....Nature always wears the color of the spirit."
In the stillness of this morning my spirit is full, peaceful and alive. Life truly is only a reflection of ourselves, and this day my world could not be more vibrant.

How blessed we are to have such a choice - every second, of every day, of every year.
Back to bed I go, but what a wonderful journey it was!!

Thank you for sharing it with me ~


Thursday, August 18, 2011

The Wild Side of Bedridden!

The other day, when I was still in the hospital, a visitor from Occupational Therapy asked me a question. The question was this, "So, what do you do for hobbies? And how have your hobbies changed since diagnosed with lupus?" This is always a loaded question for me. I have the long, 72 hour version that my mind quickly runs through, and then I have the short, 3 second one - "I write, I read, I do some painting..." The three second one usually satisfies people, but it always leaves me a tad bit empty.

I think, when I take a serious and honest look at myself, I can truthfully say I have come to peace with the changes in my life. But when the question gets asked, I always have this desire to share who I used to be. Which leads me to believe that there is some small part of me that still identifies with the "healthy" me. Maybe a little stuck in wanting to finish the "I am a..." sentence instead of just leaving it at "I am".

This is a round about way to get at what I really wanted to write about this afternoon - but here goes. The therapist persisted, and was curious as to how my painting had changed since becoming ill. I told her that prior to getting sick, I did mostly watercolor, fine detail, mostly botanical. With the onset of peripheral neuropathy, I no longer have the control to do this kind of work. I then told her that it was actually a good change, because I had always wanted to delve into the world of acrylic and become a little "more free" in my work. Which I have - and I enjoy immensely. What surprised me was my next line. It went something like this, "Now I am free to paint outside the lines...which pretty much sums up my life these days."

I've thought a lot about that response laying here in my bed this week. Awfully bold statement coming from someone whose bedridden! I have this funny little voice in my head that says, "You show 'em girl! Live it up, be wild...break a few rules!" And that funny little voice sounds a bit sarcastic. Some may think that when stricken with tragedy or devastating illness, it give us permission to no longer abide by "the rules". I've met some of these people in my life. Some are angry, some are rude, some use their illness as a means to be hurtful or get what they desire or think is "rightfully theirs". This is not at all what I mean by being free to go outside the lines.

What this means for me is that there is no right or wrong anymore. There is no should have or should be - there is no supposed to. There just is. I can take what is happening to me in this very moment and I can do one of two things. I can either fight it, or I can accept it. I think we have a hard time with the accepting because we refuse to let go of what we "think" the situation should be. I've said this many times before - accepting it does not mean waving the white flag of defeat. It means letting go and making the most of this moment - which moves us to the next moment in a much more graceful manner. Taking good care of this moment - holding it in our hands as we would a crying baby - is THE BEST way to care for the future. It makes so much sense to me - if my soul is crying for hope, or friendship, or peace, or the end of suffering - why would I ever ignore it for the regret of the past or the fear of the future. Take hold of your own "being" and love it as you would that crying baby. Nurture it. Calm it. Coddle it. Do what ever it takes to be present in that moment to be with your pain.

Today has been a test for me in this regard. Having gone backwards some from a couple of days ago, coupled with having my family gone for the evening, I have had a lot of time to just "be". I remember Pema Chodron talking about these times as being times of "training to be a warrior". I struggle with the warrior part - because I don't really like to think of my life as being a battle or a fight (thanks to my therapist!). But I do like the part about being in training. These difficult days are kind of like tacking an extra two miles on the end of a ten mile run - they make the next time just a little bit easier. I also believe, with all that I am, that suffering - any kind of suffering - makes us more compassionate people. And that is a very important goal in my life.

I've also been "hung up" with wanting to write in my blog, yet being affected by pain, medication, fatigue, fogginess... so I have chosen not to. I think this is contrary to my theory on painting outside the lines. What the hell? Spell a few words wrong, jump around a bit, forget the conclusion or maybe even just write for "me". At least I'm being real - at least you see me in the moment...

Whatever that is!

- Posted using BlogPress from my iPad

Tuesday, August 16, 2011


This is a picture of our oldest daughter Aleela, taken back in June. The reflection in the mirror is of me. I was standing behind her, rubbing her shoulders and neck after a long day at work. Instead of driving home, she drove to New Richmond to help me with company that had come for Anna's graduation.

Last week, when I was in the hospital, I had a few days when I was barely coherent. Weakness and pain overwhelming. Drifting in and out, relief came only when sleep arrived. Those first few days were the worst I have ever experienced.

Aleela is a very strong, outgoing, intelligent women. I don't always see this - my eyes tending to see the girl of days gone by, but there have been a couple of occasions where in order to care for me, she has worked from our home. I hear her dealing with doctors and surgeons from all over the United States. That little girl, twirling atop a tree stump in her pretty pink princess dress and red "clappin" shoes - now strong, authentic and beautiful.

As I drifted in and out from my hospital bed, there she was. Sitting perfectly still, in the darkness, keeping vigil. Sometimes when I looked at her she looked like an angel to me. My voice almost nonexistent from weakness, all I need do was to whisper her name and there she was - inches from my face. "I'm here Momma." When the doctors would come in and ask their questions, I could not speak loud enough for them to hear. So she translated. There were moments where I felt as if my life depended on her - locked inside this body of pain, unable to communicate - she knew exactly what to say.

I've looked at my daughter for 25 years now. Put in pony tails, curled hair, helped with make up, advised on the combinations of pants and shirts, shoes and belts and gave my share of bad boyfriend advice. And I have cherished every minute.

It's a holy thing, beautiful and magical, watching your daughter become a women. Seeing yourself reflected in her image, yet amazed by the the jewels she has adorned herself with - collected from broken hearts, tears, hopes and achievements. Unmatched by any other - unique and unparalleled, one of one.

How blessed I am. How truly and wonderfully blessed I am.

Friday, August 12, 2011

Hospital Update

For those of you who have not been following on my facebook page...
The heart surgery went well - as good as was hoped for! THAT is the good news. The difficult news is that during surgery I began to bleed internally and it turned into a very serious situation. Having earned the title of "largest abdominal hematoma ever seen" by my doctor, the recovery has been very slow and very painful.

My first day home has been with some complications, so at this point we are discussing having to go back into the hospital...not something that sets well with me!

As I type this from my bed, the windows are open and the breeze is blowing through the pines - birds chirping, clouds drifting by. Nature is such a healer - in so many ways.

Thank you for your constant vigil over me. Hopefully I'll be back to normal posting in no time! Until then, know that life IS good, people ARE amazing, and LOVE is the greatest gift. These things no pain can take away.


Thursday, August 4, 2011


Walking to the shoreline, BWCA 2008

Is the language God speaks
And everything else is a bad translation.”
                                            ~ Anonymous

I have always needed still moments in my life, although I don't think I have really understood the "what and why" of it all until recent years. The past two months, stillness has been an extremely rare commodity. Kids home for the summer (our two twin teenagers Emma and Sara, as well as our college kids, Anna and Evan), two dogs, one cat and a number of family emergencies has left little time for quite space within our days. I have always enjoyed a healthy dose of chaos in our home - it's what makes it the "hub" for friends and family alike. People coming and going, live music, various forms of art in progress and meals adorned with laughter and generous conversation. It's a good place to "be". But this summer has definitely had it's challenges, making the balance difficult and leaving my spirit longing for solitude. 

Tomorrow morning, at 7am, I check into the hospital for yet another procedure. This go-around it's my heart. Hopefully, when all is said and done, they will have corrected an arrhythmia that creates both discomfort and risk for me. It's been an issue I have struggled with for many years that has progressed to the point of needing a fix. Antiarrhythmic medications are not a viable solution for me, so this is my only option. It is what it is, and tomorrow's the day.

As is typical fashion when under stress, this is how my morning started out. Actually, I should have realized what my unconscious self was up to when I quickly clicked out of my Stillness Buddy application when booting up the computer this morning. Stillness Buddy is a wonderful program that alerts me at different times during the day to take quick meditative moments, concentrate on my breathing and be mindful of the beauty that surrounds me. Today, I felt as though I had just too much to do to be bothered by the constant interruption. No breakfast, heart racing, stomach churning...I continued on with my list. Buy dog food, finish laundry, change sheets, order prescriptions, pay bills, check accounts, fill pill containers, check on parents (my mother recently had a stroke) respond to emails, blog, water plants - indoors and outdoors, empty garbage, fill bird feeders, pack for hospital, call kids, plan meals, make reminder list for family while I am gone, figure out supper for tonight...

If this blog is beginning to sound familiar, it might be because you see yourself in my "ways". Or, it possibly could be because you've read this before...see To-Do Lists. The mind, left unattended, can sure Run Amok. Yes, that's another one. 

Yesterday morning, I woke up, got my coffee and sat down to blog. The first line I scribbled down in my journal was "But that's not how it's suppose to be." I was soon interrupted with another family emergency that occupied my day until I crashed under the covers at about 8pm. This morning I looked back at that line and tried to recall the thoughts that led up to it. Once again - this was a great indicator of where I was going. 

Whether it's making ridiculous lists or finding yourself frustrated with how things are NOT what they should be - it all points to one thing - and it is definitely NOT living in the present moment. Oh, how easy it is to "live right" when things are manageable. Throw in a little chaos...okay, a lot of chaos...and next thing you know, your clicking right through life. Making lists, building expectations, controlling outcomes and fostering a shit load of frustration. 

As is quite often the case, necessity is the mother of all invention - and I need nothing right now as much as I need stillness in my life. And I guarantee you, it's not going to be found in the making of a list. I told a friend just yesterday in an email correspondence that it's crazy to think we can control this life. It's like swimming up stream - fighting and fighting for what? Exhaustion! It's much easier to "go with the flow" even if it gets rocky, even if the water gets deep, even if you get snagged up on the branches of life! And going with the flow means accepting what IS. I'm not talking about giving up, or somehow giving in to things in the hopeless sense of the idea. I'm talking about accepting what IS and living from that place. Once we accept things - then and only then can any good come out of the situation. Instead of becoming weak, we are strengthened by our cooperation with all of creation. Illness, tragedy and even death are all part of the same river - the minute we accept that, we become Free. Freedom equals peace. And nothing can take that away. 

I'm rearranging my day today. I've already sectioned off the list - divvying up tasks to various family members.   
I'm also allowing myself to be honest - right here, right now. I'm really nervous about tomorrow. I know that statistically this is a very safe and common surgery. But my life over the past few years has been far from common and I continue to find myself on the wrong statistics list. I have no intention on dwelling on these things - but for me, they're real. I believe one of the worst things I could do would be to go into tomorrow morning in the wrong frame of mind. So I'm letting go...just to let you know. 

The picture at the beginning of this post was taken the morning we left the BWCA about three years ago. It's how things looked as I walked down to the water to find my husband, who had gotten up early to get some morning shots of the fog and water. 

When I arrived to the shoreline, this is what I saw ~

Morning Eagle

Stillness Bay

Thanks to my husband, the moments are captured forever. Literally seconds prior to taking the first picture above, an Eagle swooped down directly in front of us and rounded the bend to the left of the island ahead. It was a gift I will carry with me forever, captured only in our minds eye. 

Stillness. I can still feel the stillness of that morning. The water like glass, the smell of pine and wet dirt, the occasional loon calling in the background...the dew hanging on each blade. When the anesthesiologist asks me to count backwards in my head from 10 - these are the things I'll be thinking about. About the beauty of this planet, about the children that have blessed me beyond any form of measurement, about the family and friends that love and guide me, and about the husband that shares this dream called Life with me. 

I am at peace.