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.    

 

The love of my life.

My bookcase...third shelf down from top.

Photo by David Ralph Johnson

This is what I have been doing lately. I didn't actually know that I was doing this until today. Twisting and turning and pulling, trying desperately to "arrive". Thoughts flood my brain. Frustrated by my minds inability to hold on to or organize any ideas. Discouraged by the barren screen in front of me. Exhausted by disease. So much to say.

So much to say.

I've begun this writing at least five times. Wonderful, glorious thoughts have come to me in my moments of reading and mediation. I want desperately to share. A Mother's Day, full and beautiful. Reflections of daughters' and relationships and the unconditional love that surrounds them. Hope, and the excitement that comes with experiencing 6000 people gathered together under the dream of One Heart One Mind One Universe. Sadness, by the suffering that our judgments bring.

These things keep me awake. So many things.

My ego and I, we work devotedly to each other, under the best of intentions, to bring our message. Twisting and turning and pulling in every direction. Not listening, not listening, not listening...

Photo and art by me....hands by Anna.

Leave it to adult children to always "tell you like it is"! And having seven daughter's....well, let's say that our household is never short on opinions or advice! And believe me, I would have it no other way.

My oldest daughter and her husband recently returned from a weeks vacation in the Dominican Republic. It was a much needed reprieve from work and winter weather. When she got home, she decided to check my blog to see how I have been doing. Always my biggest fan, and always supportive, she had some advice for me. It went something like this.."You know Mom, your articles are always so inspiring and there is always such a good message. But sometimes I just like to know how you are doing."  She makes a good point.

I think that when I made the transition from Friends of Theresa to writing a blog (which has been very healing and quite a good mental exercise for my cognitive issues) I somehow latched on to the assumption that people needed to hear a little more of the positive and not so much of the painful day to day illness. I actually think this has more to do with me than you. But in reality, Friends of Theresa was developed originally for one reason, and that was so that friends and family could keep in touch with my health without having to make a phone call or a visit - or to put the onus on my husband to keep everyone informed. So, that in mind, I hope to strike up some sort of balance. Thank you, lovely daughter, for more good advice!

I struggle with a lot of different issues these days. I'm actually working with my rheumatologist over the phone this week to try and get a flare under control. A flare, for me, is basically any increase in disease "activity". Sometimes it lands me in the hospital, like last month. And sometimes it just incapacitates me. Which does not take much since I'm generally "incapacitated" in some form or another. On a normal day, fatigue and pain are tolerable. Joints are sore, but I am able to use them.  Neuropathy, although very annoying, is not painful. I am able to eat without extreme pain or nausea, but my diet is limited. I may or may not be running a fever and glands are not swollen. Thinking comes easier and my eyesight allows me to read. Headache is lingering in the background of everything. Night time is better, yet still broken. I am usually awakened by extreme dry mouth and throat or joint and muscle pain. A drink and change of position and I am back to sleep.

When flaring, like this week, everything is exacerbated. Joints and muscles make movement very difficult. Fatigue is so extreme that being up longer than 15 minutes is very difficult. I spend most of my day up and down. Throw a load of clothes in the washer - lay down. Fix myself something to eat - lay down. Work on the computer for a few minutes - lay down. Let the dogs out - lay down. You get the picture. Headaches are intractable, neuropathy is painful  - and frightening - and nothing seems logical. Thinking is a real chore and remembering is even worse. Consistent sleep is next to impossible. Everything gets canceled when I have these weeks - which are more often than not. Just eating and going to the bathroom become all consuming and painful activities. I become completely housebound.  And if I can not get things under control, then I end up in the hospital.

I'm not quite sure what my issue is this week. It seems the past few months I have been taking a gradual turn in the downward direction and it scares me a bit. Three months ago I felt like maintaining was tolerable. I don't like the new baseline I seem to be establishing these days. Living one notch up from going into the ER is not "doable" for me. We have increased the chemotherapy to a maximum level, so the only other alternative is to start going back up on the prednisone. Not the plan for tapering we had hoped for, but I'm willing to do just about anything right now to feel a little better.

I also worry about the toll it takes on my family. It's not just the physical toll either. In fact, I now have a women coming in weekly to help me. But I am more worried about the emotional toll. It's tough watching your wife or your mom suffer. As much as I try to "look" well, they know the difference. And they worry. Walking on eggshells, looking for the littlest signs that mean Mom is heading to the ER. I hear it in their voices and see it in their eyes. I wonder about all the things they are not telling me in order to not add to my burden and it saddens me to think there may be times when they don't have "Mom" to turn to. And of course, all these things seem much larger the sicker I am!

In all honesty, the only thing that gets me through to the next day is making the most out of this one. Finding the good in even the worst situations. I read a quote the other day in Tolle's book,  A New Earth - "The primary cause of unhappiness is never the situation you are in, but your thoughts about it." When you think about it, that's really true. When I am stuck in bed and can't do anything else, if I lay there and tell myself how miserable I am, or think about how I am never going to get better, or obsess about how many times I have been in this situation, or worry about never getting out of this situation...well, I can send myself right down into a tailspin so fast that even one of Dave's BEST jokes can't get me out. But... if I look out my window and think about the beauty I see out there, or look into the eyes of one of my dogs, or think about how fortunate I am to have such a beautiful home to "be" in....well, I can find the blessing in the moment. Having the choice - I choose the blessing.

These weeks are tough, no doubt about it. And this past week has been a struggle. But like I always say, it makes a world of difference knowing my friends and family are out there keeping track of me. In the meantime, I'll do better at sharing the good AND the not so good times. I guess it's just part of the deal!


Peace.

Aleela and I running in Marshall, Minnesota

The second day of Spring! A welcome season, indeed. Especially this year. I have always prided myself in being a true Midwestern girl, loving the change of seasons and all they have to offer. Winter in general has been a time of rest for me. Less hours in the day has always meant less to do and more time hunkering down with the family watching good movies and getting to bed early. Since becoming ill, my reaction to the change of seasons has evolved significantly. For example, much of my time is spent indoors regardless of the season. Sunshine and heat can be my worst enemy and if not taken with precaution can lead very quickly to a flare. So the reprieve that winter once offered now feels even more restricting. This year in particular, I had to work very hard at keeping things in perspective and staying in the "Now".  But I'm not always successful, and sometimes that's not only OK, but maybe a little bit necessary. 

This will be my third Spring "post-diagnosis". I'm hoping to be be better prepared this year. The past two years things really crept up on me and it was not until I did a considerable amount of suffering that I finally figured things out. Much like holidays and birthdays bring suffering to those that have lost loved ones, so too, I feel loss associated with particular times of the year. The embodiment of my loss of health is epitomized by one thing - my inability to run. I started running when I was eleven years old. I knew at a very young age there was something in running that gave me space. It opened me up, cleared out the mess of life and made me feel good about myself. Until this illness, running had seen me through every struggle. Whether it was the birth of babies, back surgeries, the death of loved ones or the end of a marriage - running helped me to heal.  And springtime was my favorite time to run.

One of the best things about running for me, was the opportunity it presented to run with my family. Dave and I talk frequently about all the cities and states we have run in. It's fun to go back to certain locations and think about all the roads and paths we have traveled. Hundreds and hundreds and hundreds of miles on foot, each step carrying with it a story. Even around our own home, there is about a twenty five mile radius of endless country roads that bear the footprints of our travels. We can drive those very same roads and never experience the sights, smells and sounds that we do when on foot. It's unexplainable.

Marshall,MN

My oldest daughter Aleela is also a runner. The years immediately preceding my illness were some of our best together. There is a lot of conversation that goes on when you are on a twenty mile run together. We traversed some pretty intense terrain in order to get miles logged during marathon training. I remember one summer when Dave was unable to train with us. We had traveled to Marshall, Minnesota where she lived so that she would not have to do her "long run" alone.(we did this a lot for each other, alternating who had to travel) Dave drove us out into the country so that we could run our seventeen miles back into town with the wind at our backs. He drove slowly behind us the entire way carrying our water and food, and offering transportation if either of us couldn't make it back home. Going only about five miles per hour the heat off the engine made the thermometer rise a bit more than normal, but even at that, it registered 118 degrees Fahrenheit!

A record run!

Zumbrota, MN

Winter or summer, we never seemed to let the elements keep us from our time together. On one occasion we could not physically be together for our long run. The weather was horrible. About thirty-eight degrees, twenty-five mile per hour winds and torrential rain was the mix for the day and we both needed to log about fifteen miles. Half way through the run my cell phone rang and it was Aleela. I could barely understand her because of the howling wind and rain! That was one of the few times we agreed to give up the fight and go home. Thank goodness for husbands and cell phones!

Sometimes I long so desperately for those days that I can barely swallow the lump that fills my throat. I suppose, on the outside looking in, most would think us absolutely crazy. I wish I could describe better how much more those experiences were other than just "exercise". I think what I am realizing is that it was during those times that I began to experience what it is like to be present in the moment. And to have been in that space with the people I love most in life was a gift beyond measure.


 This past weekend I was with my daughter Emma in Kohl's. She was in need of some new summer clothes and we thought we would take advantage of one of their big sales. She's easy to shop with. It usually takes her about fifteen minutes to grab up a few items, try them on, take what fits and head to the check out. I usually wait outside the dressing room with all the other moms for the "approval viewing". This time I stood there alone. And there it hit me. Reflecting back at me in the mirror ahead, was the image of a women I am still coming to grips with today. Two and a half years of illness, hospitalizations, medications and inactivity have definitely taken their toll. Hair loss, skin changes, teeth coloring, dark eyes and prednisone weight make looking and feeling healthy a struggle to say the least. A year ago, even though I was unable to run, I would have looked at this issue as a challenge. Much like I would have done during my running days. "Well then, set some goals! Write things down, stick with plan and change my situation." If I were to have been writing this article a year ago I probably would have ended it with some sort of analogy about running. "Even though I am no longer hitting the pavement with my husband and daughter, I am still running marathons of a different sort....blah, blah, blah..." But I'm not.

The women in the mirror is indeed a different women. She's a better women. I may still struggle with the image I see (and even that is getting much better), but the women looking back at me is no longer running - TO anything or FROM anything. My life is much less about "becoming" and much more about "being". I guess you could say I'm experiencing my own change of seasons. Like we all must do at some point or another as the days of our lives pass so quickly by. And it's OK to sit and think for a bit about the paths our feet have trod along the way. But it's the very ending of those stories that make way for the new. It's the cold, barren dirt of winter that provides the life giving energies to the beauty of spring.

For in everything, there is a season. 

I love you, Aleela.