Reflections on Windows & Souls

Windows and souls, how fascinating. We seem to believe that our eyes are the windows to our souls and it seems like windows are also the eyes of the home. Windows fascinate me because I often wonder what goes on behind those windows and doors that I see on my travels around town and in distant places. These windows are from Switzerland, Austria and Northern Italy.

Our souls refer to the very essential and fundamental aspect of who we are – our thinking, emotions and actions. Both humans and buildings have a physical structure – but is it only humans who have souls? Many cultures believe that inanimate objects have souls and I know places that have such special meaning, such a special feel, that I believe God resides there. Now this is my own doing that says that God resides in one place more than others because I also believe that our Creator is everywhere. Maybe this is one of those things that can’t be proven because it is us humans that seem to give soul to inanimate objects – like homes.


Back to windows. Windows, like eyes, are how we view the world from within our homes. In my 68 years I have looked out many windows – observing children, neighbors, traffic, mountains, dirty streets, storms, sunrises, sunsets, people passing, city lights, farm fields, those approaching. For some people, the only view of the world is from their windows.

I have also been very spooked when I thought people were looking in – but I also like to look in windows, from the street of course and not up close. We don’t seem to like people looking in our windows – it feels intrusive, like a violation. We want to invite people in through doors and we want control of who we let in. When someone invites me in their door I consider it an honor.

Somewhere in Europe – possibly Switzerland.

I feel the same way about my soul, my being. I only want people I trust to see into me through my eyes. I only let certain people in. Different cultures have different “rules” for eye contact but each one of us has our own preferences. I usually hide my tears by turning away. I have worked with young people who keep people out by hiding behind hair (remember the movie Breakfast Club) and dark or reflective glasses. Is it the same with windows? With windows we can keep the curtains closed.

We seem to be afraid of people seeing too much of who we are, we seem to be ashamed of so much of ourselves – and maybe without justification.  In those first few years of having a chronic illness, when I felt like all that was left of me was pain and fatigue, I didn’t want to let people see this me. I felt damaged, less than perfect, unlovable. I felt shame over who I had become and when we feel shame we hide – like the story of the Garden of Eden in the Bible. Does the Koran have a story of hiding in shame? To hide my shame, I put on a facade, a happy face; and when I couldn’t keep that up any longer I went home and hid behind closed doors and blinded windows.

We should feel shame and hang our head when we hurt others, when we make bad choices, are dishonest, when we steal, lie, kill, are unfaithful. But not because we are different and fall outside what is generally considered normal or desired – like being healthy and pain free and thin (or curvy) and beautiful and muscular and tall (or short) and dark (or fair skinned). Sometimes shame is put upon us by others and sometimes we do it to ourselves. I did it to myself. I have a friend, Julie, and her story is a slight diversion but is a good example of having shame heaped on because of not being like the norm, being different.

I first knew Julie when she was John – I worked with him and he was an interesting and supportive friend. He always invited me to sit a spell and solve a problem or chat about the last book we read or help me with plans to take students to Ireland. But you guessed it, John transitioned into Julie. When he decided that he wasn’t living with integrity, when he was hurting so much from not being who she really felt herself to be, he came very close – holding-the-loaded-gun-in-his-hand-close to killing himself. Instead he talked it over with his wife (can you imagine that conversation?) and decided to become the woman she knew in her soul that she was, the soul that listened to God. She didn’t choose to be a woman – the only choice was to be true to herself. No one would choose to say they are a woman inside when they look like a man, not when the consequences are so dire. It takes a lot of courage and/or desperation to acknowledge this truth and then to make the choice to transition. This choice resulted, for Julie, in the shame and hardship of losing her job; loosing friends who wouldn’t dine and play with sinners; parents and children who no longer wanted them in their lives; a church (where John had preached, sang, served on the church governing board) that said they were no longer welcome to worship there. This choice to transition can also cause harassment, beatings and death. And feminists would ask who would give up the privilege of being male for being female.

Photo of church window in Switzerland taken by Julie Nemecek.

Sometimes our windows of opportunity are barred and doors are shut in our faces, but we can still choose to allow ourselves to be open to what life brings. Julie chose not to believe those who said she didn’t have a right to be present and seen, that her soul was defective.  Although she knows how to be cautious, she hasn’t barred herself off from others. In spite of the risks and rejections, Julie and her wife continue to keep their windows to the world open wide and to welcome those that come to their door.

I hold the notion that homes have a soul – have a personality – have life, reflective of the people who live there. But I don’t believe that we can tell what goes on behind the windows and doors based on their looks. When I was of the mother-of-young-children age I went through a period of personal turmoil and depression and therapy. When I told people they were always surprised and said that I always seemed to “have it all together.” I didn’t let them see through the window to my soul – but I did part the curtain a bit to give them a glimpse – a little, sometimes.

I have also been fortunate that people have allowed me glimpses of the lives that go on beyond their windows. I have heard their cries from emotional and physical abuse, substance abuse, infidelity, loneliness, neglect, death and poverty. I have heard the despair of  broken families, incurable disease, mental illness, lost jobs, and lost hope. And there are so many in the world who are living with the fear and disruption of war. These aren’t special people, these aren’t those other kinds of people. They are us. We all experience hardships and all have burdens that we carry. What amazes me is that most of time we still get up in the morning, care for children, do work, take care of business and each other. And we work to fix what is broken in our lives and hang on to our shredded hope. There is always the desire for a better life, for happiness, and peace. This hope may be guarded but we want something better.

We are, most of us, resilient people. We have special strengths that can be used, sometimes with a helping hand from others, to bounce back. So often I have found that if I pull open the curtains on my windows and open my doors to others, if I allow myself to be vulnerable, they find what they need within me to find their own way.

What we need to heal are human relationships that are honest and respectful. We need people who are open to sharing themselves and even more open to listening and respecting the stories of the other. I have observed and firmly believe that what heals is understanding and acceptance, not advice. When people feel understood and accepted, they find the courage to turn the corner and open their windows and doors without shame.

I had lunch with Julie yesterday and told her my plans for this post. She gave permission to share anything I wanted about her story. I am honored that she trusts me and admire her for her courage and openness. I am so happy that she didn’t shoot herself because she continues to enrich my life.


I have been feeling the urge to do a post on thankfulness seeing that here in the US we are celebrating Thanksgiving – a day of giving thanks. But so much of what I thought of saying sounded so trite and overused.

Then I had lunch today with my friend, Julie, who I think you will meet in my next post. I am thankful for Julie, and for all the other people who have stood by me. All my family and friends and administrators, and colleagues and students and doctors who stayed with me and understood that life was sometimes hard and that I was doing my best. I am thankful that they ask how I am doing, but then move with me to more fun and interesting topics – after all I am much, much more than an illness.

This year I am thankful for my new blogging community that has affirmed me through “likes” and especially your comments and having my life enriched by your blogs.

I am thankful for music that brings us together and cuts through prejudice. I am thankful for music that touches my soul and reminds me of all the things that are important in life – big and small.

My wish for you is that you may find many things in the days to come to be thankful for, wherever you are and whatever your circumstances. And I hope that I will be able to stand by you!

I Don’t Miss Me Anymore

It was a long time coming and I’m not sure when it happened. I don’t miss me anymore. This is a strange thing to say but I know the frightening feeling that comes from loosing my sense of who I am. I know the sadness that comes from not believing there is enough left of me because of the changes in my life due to contracting a chronic condition. I really did miss me – but not any more.

Those of you who have been following my blog for a while know it was originally named “I Miss Me, Too” because that was what I wanted the title of my book – the one that I’m not writing any more – to be called. Here is what I wrote on my ‘About This Blog’ page when I started blogging. It explains how I came up with the title.

One day during that first year after being diagnosed, I was in the kitchen with my husband of 40 years. He stopped working, looked at me, and said that he knew I couldn’t help it but he missed me. He had tears in his eyes. My eyes welled up and I said, “I miss me, too.” We embraced and cried together.

I feel like I turned a corner, when I stopped missing me. How many times have I said that? Whenever I started a new computer file for my journals, the first entry begins “I feel like I have turned a corner.” There are 10 files of journals that cover 8 years – so ten times I had turned a corner. I guess you could say I’ve been around the block a few times. This seems to be my way of explaining that I made a leap of progress towards my emotional and physical healing each of those ten times – now eleven.

Those leaps of emotional healing didn’t happen suddenly. It was more like a long slow, continuous process and what happened was that suddenly I realized that I felt different. Change takes a lot of work. We have to have a vision of what we want, and maybe observe others and think about what we would like to be, and we need to practice actually being like our new vision. Sometimes we need to look at our pasts, confront old ghosts, heal old wounds, let go. Sometimes we need to acknowledge our sadness and anger. It takes conscious effort and courage and perseverance. I have been working on it for nine years so far – taking many small steps and spending lots of time on plateaus where I prepare for my next step.

I began to feel the shift to feeling more whole when I started my blog and became a part of the blogging community. Focusing on how to use a new camera and learning how to take interesting photographs allowed me to connect with a long neglected part of myself. Blogging gave me a platform for sharing the emotional turmoil of having fibromyalgia by posting rewrites of portions of my not-to-be-published book.

Writing for the blogging community was much more rewarding than writing for publishing and thus brought a dynamic, evolving meaning back into my life. My focus began to shift from sharing my illness to wanting to share the life I was living – through photography and story. I discovered that I could touch people’s lives and my life was enriched through the life stories of others. It feels like I am on a shared journey of life that is being recorded through our blogging.

The second event that seemed to give me a new sense of self was the long camping trip to Newfoundland. This trip shifted life for both me and my husband. A while after I was diagnosed, we were talking and he went into that funny mood that says he is thinking about something that needs to be said but he doesn’t want to say it. He finally confessed that he was feeling guilty because he believed I got sick because he “dragging me” on a three-week camping trip to the Canadian Rockies. It is true that I started having symptoms about 6 weeks later – but proximity doesn’t prove causation. He let go of the guilt but still had to live with the fact that our life was changed.

Lake Louise

Lake Louise (Photo credit: Wikipedia)

Our trip to the Canadian Rockies was the last traveling camping trip that we had taken and the trip to Newfoundland was similar in length and work. I had some anxiety about doing the trip but I really wanted to go and knew how to prepare. He had a lot of anxiety because he feared I would get really sick a long way from home or wouldn’t be able to participate in our travel activities. After we returned, he told me that he was really surprised that I had done as well as I had. Our eyes connected and he said that it felt really good to have me back.

I guess I am back. I’m not the same because we both know that we had to do things to take care of me – but I was alive and vibrant and involved on the trip. I worked along side of him and carried my half of the work load – almost and most of the time. It was similar to our Canadian Rockies trip, but I was different. We have adjusted to the changes in me so I can be like I used to be; even though I’m not. Maybe we don’t remember what I used to be like, but he isn’t either. In any case, we have found a way to live life fully, together, that is rewarding for both of us.

This triggers silent tears because it was hard and it wasn’t always clear that it would happen. I spent a day or two feeling sorry for myself. Not in a bad way as I would if I felt like a victim. No, I felt sorry for myself as I would feel towards someone who had gone through a really rough time. I felt sympathy and compassion towards myself. I feel compassion and love for my husband who had to endure all that I have been through but didn’t always know how to handle it. But then neither did I. It was scary and hard.

I have read a lot about grief but I have never seen anything written about the grief we feel after going through a time of healing. When I was a therapist I frequently would sit and listen to people express their joy after making changes in how they thought and felt and the big difference it was making in their life. Then they would grow quiet and their eyes would get glassy. I knew at that moment they needed to lick their wounds – they were remembering how hard it had been, how hard they had worked, how much pain they had felt as they went through the healing process. I am feeling that way.

At the same time, in a strange way, a hard to define way, I am afraid of stepping into the future. I had learned how to live with my emotional pain and sadness. I had gotten used to not knowing who I was. I had adjusted to not being able to do a lot and my husband didn’t expect me to be able to do most things. What if he forgets that I have limitations? What if he expects more from me than I can deliver? What if this living life fully, together, doesn’t last?

Can I maintain whatever it is that I’ve found – forever? I need to remember that this is a new day – singular. All I have to do is live today. I planned for my tomorrows, but none of my futures were improved by feeling anxious about them. I can plan for tomorrow, but I need to live today.

On this new day I may experience pain and fatigue and not be able to do much of anything. On this new day I may have lots of energy and be excited about the work and play I have planned. I am still overdoing on good days, and still paying for it with a day or two of not feeling well. I know how to take care of myself and I’m usually satisfied with moderation but also willing to pay the price for pushing the boundaries.

I have found ways to exercise my brain and body. I have found multiple communities in which I can nurture and be nurtured. My husband and I have settled into a fun and comfortable relationship. I can face my God and see her smiling at me. I don’t miss me any more because I have found a way to live that has integrity.

If you have written a post that expresses similar themes, please leave us a link in a comment. I would love to have us connect in this way.

A New Day

Yesterday morning I woke up knowing I needed to change the name of my blog. It isn’t the first time I’ve thought about it but this morning was different: this morning it was a given. I woke up early and I really would have liked to fall back to sleep but I couldn’t get this idea out of my mind. My mind was racing. I was trying to come up with names that reflected who I used to be, who I am now, and who I am becoming. I came up with several that I don’t remember now – probably because none of them were right. I even told God about it.

I got up because I knew I wasn’t going to sleep any more. The first thing I did – even before I made coffee (actually my husband usually does this but he didn’t look like he was getting up right away) – was to log onto my blog. And there was a comment from Christna, from the other side of the world, suggesting I change the name of my blog and giving me a suggestion. This stunned me because Christna doesn’t follow my blog. She had visited this post once before and left a message, and is here again. I just sat here stunned, rereading her message. And then I smiled. I know that chance happens but most of the time things that happen seem to be a part of a big plan. There is a lot of rhyme and reason to my life – most of the time.

This morning I woke up and knew the name. A New Day. Yesterday, after I read Christna’s e-mail and drank a cup of coffee (my coffee isn’t as good as Jim’s), I picked up my camera and stepped outdoors to take some fall colors in the morning light. What I saw was a new sunrise coming through the clouds, signifying a new day, new challenges, new joys. Yes, A New Day works very well for me and I think Christna will like it, too.

A New Day

I don’t miss me any more, but I’ll tell you more about that on another new day. And I’ll have to update the page about my blog. What a glorious new day. Thanks for sharing it with me.

Time Heals

Astronomical Clock

Astronomical Clock (Photo credit: simpologist)

Time heals. We tell that to young people who have had their hearts broken. Sometimes we say it to people who have had tragic losses, when we know how much they are hurting but don’t know what to say to help them hurt less. If we are the one hurting we probably need to hear it, we need to know that the emotional pain will lessen – will get easier to bear. But when we are in the middle of our pain we also want to scream “How do you know? How can you possibly know that this all-consuming pain deep in my gut will ever end?”

The experts on grief say that the only way to find resolution is to face our loss and feel our pain. This is hard work and no one can tell us the best way to grieve because there are so many different factors, such as the type of loss and the personality of the person. The grief following developing a chronic illness (fibromyalgia with chronic pain and fatigue) was a different kind of hard than other times of grief. Developing a chronic condition, especially one that involves pain, seems to changes so much about our lives and our sense of self.

"falling apart"

“falling apart” (Photo credit: Quasimime)

I have heard many people say, on blogs and discussion boards, that chronic illness and pain makes them feel like their life has fallen apart and they have lost their sense of self. I felt like I had lost my internal bearings, my security, something at my very core, something very important, but it was difficult for me to identify exactly what it was. I kept wanting to say that I had lost my self, but obviously that wasn’t true; my self was still waking up in the morning, fixing supper, brushing my teeth, going to the store for a gallon of milk, going to work, having lunch with friends. But I also wrote in my journal that I didn’t think it was an exaggeration to say I didn’t know who I was any more – and this brought tears to my eyes.

What caused me to cry most often was my fear of not being able to work; I wrote about that here. But it wasn’t just “work” work, it was being able to do the work of living my life fully, to be who I had known me to be as a wife and mother and friend and grandmother and church member and aunt and neighbor and… In some inexplicable way I had lost “me” and I didn’t know if I would ever get “her” back.

What does it mean to lose our self? In part it involves losing our ability to fulfill important roles. If we define our self as a parent, we lose our ability to parent, if we pride ourselves on being a caregiver we lose our ability to give care, a clear thinker can no long think, a provider can no longer provide, a hard worker can no longer work hard, a gardener can no longer garden. Sometimes it felt lost – totally gone. Sometimes only altered. Most of the time I didn’t know what was happening to me and this was scary. So much of my life activity was changing – I’ve written about that here.

My fear of so many losses led to a lot of emotional pain. I cried, sometimes so hard I doubled over. I sobbed. And I was angry – really angry. I went through a few months of being numb to the world – of being depressed and feeling the sadness at the back of my eyes. And then I cried some more. This didn’t happen in public, although some of it showed up in the form of more swear words leaking out inappropriately and less time on the outside of my door. I spent a lot of time staring into space trying to figure it all out.

This work of identifying what I was losing, according to the experts, is a necessary task if I was to heal. There was another aspect, however. People who develop chronic illnesses frequently feel defective. The loss of physical ability made me feel diminished, like less of a person. I worried about whether other people, my husband, family and friends, would still like me. After taking care of myself, I didn’t feel like I had anything left to give so why would they want me in their lives. From my journal:

UP 050

I looked at the cows at the farm today and was struck by how boring their life must be. All they do is eat and poop and sleep and eat and poop. I wonder if I am struggling with whether my life has any worth if I can’t be productive, if I can’t do for and give to others. Radical thought: Could it be possible that the sole purpose of my life is just to enjoy being alive? Lord, what do you want from me at this point in my life? Your second greatest commandment is to love one another. What does love look like when I have fibromyalgia? Does how I love change because I am sick? There is a flip side of this. Does being sick change how I let others love me? Does being sick make me less loveable? This question has some emotional kick.

Becoming aware of my fears, bringing them out into the light of day and rational thought, made it possible for me to begin to manage them. But getting control of my fears and feelings of loss wasn’t enough – I also longed to find a part of me that still existed. I began looking for evidence that I still had worth and had the same core self even though I felt vulnerable and my life felt uncertain.

Our beliefs about ourselves, our sense of self, are formed and transformed within relationships with others – what others mirror back to us (for a review of the extensive literature on this see Mikulincer & Shaver). I knew it was important to balance the negative thoughts and feelings I was experiencing so I looked for validation of my worth from within my relationships. I needed to reassure myself that the people in my life could see worth in me even when I felt defective. Here is a list I wrote in my journal:

  • My husband still loves me and desires me.
  • A valued friend is always eager to have lunch with me and understands the impact fibromyalgia is having on my self-esteem because of having Graves’s disease last fall. She treasures me for all else that I am. She wants my help in picking out quilt fabric.
  • Another friend was excited to see me and wants to have lunch with me on Monday. She also told me my suggestions for teaching her pharmacology course were very helpful.
  • Our long-time friends still want to get together for dinner and cards every month.
  • An esteemed administrator said she has missed having me on campus. She also said she really enjoys my insights into the books we read for book club.
  • A colleague who works under me said I am missed and my sabbatical has just started.
  • A friend sought me out at the picnic last weekend and really seems to enjoy how we kibitz with each other.
  • Another very capable colleague/friend said she enjoyed having supper with us and believes I can accomplish the program expansion we are going to propose. She loves the colors I chose for my living room.
  • A newer church friend seeks me out and has invited us to two different events.
  • A long-time friend asked me to run over to their house to give my opinion on their living room decorating.
  • Three different people went out of their way to say hi to me when I was on campus last week.
  • A colleague said she appreciated my encouragement and insight into starting her Ph.D. program.

I made these lists in my journal several times over the next few years as I was struggling to find emotional healing. They were an important way for me to find meaning and re-define myself. I was looking for a new way of living that didn’t include the sick role but instead had integrity. I was struggling to continue my life history, my story line, to include living with a chronic illness but also to re-member who I was; to put myself back together. Parker Palmer wrote these powerful words that resonated with what I was experiencing.

Re-membering involves putting ourselves back together, recovering identity and integrity, reclaiming the wholeness of our lives. When we forget who we are we do not merely drop some data. We dis-member ourselves, with unhappy consequences for our politics, our work, our hearts.

A large part of being able to continue my life story was figuring out how to connect who I once was with the person who now has limitation due to FM. Although the wonderful people who are a part of my life help to define me, I also knew there was a core me that I didn’t want to lose but no longer knew (or remembered). I was searching for some continuity of me. Here is a journal post from the third year after developing FM:

 I found a picture of me when I was about 2 years old that delights me. When I look at the picture, I see myself now. That little girl striking a pose is so “me.” There I stand, looking up at the giants, with my feet firmly planted, my hands on my hips, training panties on, one sleeve pulled up, a smile on my face, and a goofy but cute hat on my head. (Personal Journal, 2007)

I hadn’t lost me after all; I just had to look way back to remember who I am. And knowing who I am on the inside gives me the courage to continue the work of emotional healing and maintaining wellness while living with a chronic illness. Yes, time heals.

Here are some bloggers who have impacted on my life and my healing in ways that relate to this post, at least somewhat closely. They are expressing their reality, and in many ways also reflecting mine. Maybe they will bring some emotional healing to you. Together we will make sense of physical and emotional pain.

If you have posted on a related topic or we have inspired a future post, please feel free to leave a link to your blog in a comment with a sentence or two describing your topic.