Sister Hole

botanical garden 037-2

My sister died yesterday of a brain aneurysm. My editing of the photo from my last post is crude but death isn’t pretty and leaves us survivors feeling a bit beat up. There is a gaping hole filled only with jumbled memories of a lifetime. I like closure but the hours and days after a death leave me adrift. I’m exhausted but feel a need to do something.

Have you experienced the subtle changes that take place in families with each death. We three sisters lost our father, but mom was there to keep everyone up to date on family happenings. When she died I felt that burden shift to my shoulders – holding the family together. I didn’t do a very good job because – well, staying connected is hard work, we don’t live in the same town, and I hate making phone calls. They didn’t call me either. When I did connect with each of them our first laughter was always about how much we hate talking on the phone and then we talk for a couple of hours. There is a lot of catching up to do when we haven’t connected for a year or two.

We loved each other, gone sister and me. We knew we were there for each other even though some people would say we weren’t very close. But those people are basing their conclusion on external demonstrations of love. We didn’t have to share our every problem to know that the other cared. We just do and we know that we do. That’s enough.

I finally found and connected with sister three to tell her. She had been in South Dakota and was driving across Minnesota. They are figuring how to make it to the memorial. We saw them on our drive home from out west but I really need to see her and hug her now. I remember my Grandma saying to me, after a death of someone important to her, that everyone was gone. I wanted to say, “But you have me.” Now I am understanding that lonely feeling – sister three and I are the only ones left of our childhood family.

It is the same with all the cousins. I’ve contacted most of them and made sure they contacted some others. I don’t see them often but look forward to seeing them at the memorial. Another indication that life changes – we used to see each other at graduations and weddings but now it is deaths. All the aunts and uncles have died so we are the older generation. I remember great aunts and uncles and how old they were as they sat together at family celebrations. Funny, but the cousins I look forward to sitting with aren’t nearly as old but we are the next generation to die. Sister is cousin number two. We will talk about how that shakes us up. And we will be glad we are together.

Nostalgia for Great Britain

I just checked out the blog “breathofgreenair” where Seonaid takes us on a tour of her neighborhood – Edinburgh. She did such a great job and it made me all nostalgic. One of the things that I lost when I developed symptoms of Fibromyalgia was taking students on three-week culture trips to England, Scotland, and Ireland. I think my memories and nostalgia were also triggered by a post by Megan Sayer on traveling. She is excited about traveling with her family to the US later in the year but also talks about not being able to fulfill this strong desire to travel earlier in her life. Isobel, along with her cat MasterB, lives in London and gives me a regular fix by posting photos and telling us about life in that wonderful city and her trips around UK.

My trips with students were so much work and were so strenuous. I guided students in learning about culture and specifically about the uniqueness of British culture through the study of the major cultural institutions of religion, family, government, economy and history. We rode trains and walked. We stayed in youth hostiles and B&B’s. We lived on the cheap because most students don’t have a lot of money and I wanted to teach them that it is possible to travel light. I also wanted them to learn the joy of becoming engaged in the cultures they visit.

I think I went 6 times. I was engaged. I met so many wonderful people and I walked so many wonderful streets. I miss these experiences so very much. Here is what I wrote in my journal as I was grieving all my many losses.

I love introducing students to travel and expanding their world views, and it is just plain fun to go places as a part of my work. I know I’ll never be able to do England/Scotland again and I grieve this decision. So many things trigger memories. I went enough times that the places we visited and the people I interacted with became “old” friends.

I don’t feel like I had an opportunity to say goodbye so I can relish the memories instead of feeling pain. I miss Bath and can feel myself walking down the hill past the post office toward Bath Abby. I want to sit in the sun in the plaza between the Abby and the Baths to watch the pigeons and the tourists. I want to take the students for tea and scones with clotted cream.

I’ll never go to Avebury to walk around the stone monuments, walk the streets of Lacock, or buy greeting cards in the gift shop in Castle Combe. I miss Edinburgh, even the youth hostel. I can see the buildings of old town as I walk down the Royal Mile past St. Giles Kirk (without stepping on the stone heart that people spit on).

My years of memories blend together so that sights and sounds blend into one wonderful experience. I long for a meal in the Indian restaurant on the Royal Mile where I never know what I’m ordering but always get a wonderful meal. I want to walk down the steep winding streets to the park for a “Mark & Spencers’” take away lunch while I sit on a bench listing to Princess Street traffic while gazing at the “Old Town” skyline. I want to go to the museum one more time and feel my legs burn as I climb all the stairs back up to the castle.

I miss York, too. I won’t ever listen to Rev. Greg Hoyland explain the Church of England ever again and I won’t ever stay at a B&B on the Ouse River. I won’t walk through the park past the ruins to that special place where York Minster looms bigger than life over the busy city street – almost like a time warp. I miss Evensong. I won’t shop the narrow, twisting market streets that I have learned well enough that I almost never get lost. I won’t go for “special coffee” in my favorite pub or have their wonder meals.

And I’ll never stay on the Isle of Skye again. I’ll never experience the absolute quiet of Kyleakin or experience rush hour in Porttree, the main city that doesn’t have enough traffic to warrant stop signs. I’ll never have supper by the harbor with the fishing boats anchored on the still water. I’ll never see the mountains and the sheep, and the cliffs, and the wooly coos, learn Gaelic words, and hear the Gaelic legends. I won’t hear passionate tales about the Scottish clans and climb on castle ruins.

I won’t ride the trains and see the stone wall fences. I won’t walk uphill from the train to our lodging pulling my luggage over cobblestones. 

And I miss London. I miss candle-light concerts and bread pudding at St. Martins in the Field, I miss Leicester Square, Parliament and Big Ben, Sunday worship in St. Pauls, Buckingham Palace, Covent Garden in the evening, hearing “Mind the Gap”. I miss the English breakfast and the warm hello I received from the Valodes every morning. 

I miss going to Oxford and Cambridge and Windsor. What wonderful experiences, what wonderful memories. I cry because I will never go back. I didn’t say goodbye when I was last there. 

I still feel the pain in this journal entry deep in my heart. Maybe there is some pain that never heals. I can live with the loss because I am so glad I had these experiences.

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.