living

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 (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.

I did it! My daughter was living in Biskek, Kyrgyzstan (see map link at bottom) working at the University of Central Asia in 2009 and I wanted to visit her while she was there. Kyrgyzstan is pretty much off the typical tourist map and I didn’t think it was somewhere I would ever be able to go again. My husband didn’t want to go because he doesn’t have much tolerance for not having a bathroom off his bedroom. Sharon was eager to have me come and I knew we would have fun together because we had traveled to St. Petersburg Russia in 2004.

My first posts on Kyrgyzstan will be about our most amazing trek to the mountain pasture around Son Kul. This mountain pasture is high up (9,895 ft. above sea level) and surrounded by mountains. It is almost as if the pasture was too big to fit down into the bottom so it is wedged high up. The Kyrgyz word for lake is kul, and you can see Son Kul as the light strip in the upper left corner of the above picture. It is the second largest lake in Kyrgyzstan and it is big – the plateau is big, the mountains are big, and I felt very small.

It was June and our driver wasn’t sure the mountain pass to Son Kul would be open but locals told him it was. Sharon & I are in the back seat of this 4-wheel-drive van with a Russian driver (who should have more fear) and a Kyrgyz guide (who should know more English). It had been a long time since this road was graded and I kept thinking, “Oh my Lord, my body is going to hurt so much after this ride.” Then I would yell, “You can’t get through there – jez, Valodi, you got through there!” And he would laugh.

Son Kul is a working pasture: every spring people from surrounding regions drive their herds through the passes so their livestock(horses, cows, sheep, goats) have greener pastures. Horses have historically been very important in the Kyrgyz culture. The lower areas, where these people live in villages, have very dry summers because Kyrgyzstan is an arid country. Historically the Kyrgyz, one of the world’s oldest distinct nationalities, have been nomadic people moving from pastureland to pastureland. Many people still live this lifestyle, staying in the villages during the cold winters but moving into the higher elavations in the summer

We had reservations to sleep in a yurt, the dwelling place of the families when they move to the pastures. However, there are no road signs, in fact the roads are only one-lane paths, and our driver couldn’t find the family that was providing our B & B. They tried calling the office but couldn’t get a cell-phone signal – even when standing on the roof of the van. This was early in the season and there weren’t many families but our guide found us lodging with the family that owned this set of yuts. The van with the side view was transporting a group of bird-watchers from the Netherlands.

I titled this picture “Moving Day” because this is the vehicle that families rent to bring their summer belongings to the mountain pastures. We passed a trucks on the way up with people hanging off every runningboard and a baby goat riding in the far back. I think you can tell from the pictures that this is living a step down from primitive camping. There is no electricity or running water. They carry their water in containers from the lake & the streams carrying mountain run-off. We didn’t drink it.

We reached our B&B mid- to late afternoon so Sharon & I decided to take a little walk to see the sights and people watch. The sights were the wild flowers growing abundantly but subtly beneath our feet (buttercups? and edelweiss). The people included a father & a son (of 12 or 13) talking and laughing together as they carried water back to our B&B for preparing the supper meal.

The altitude is high (close to 10,000 feet) and we became winded very quickly. Our pace became slow but that was okay because there wasn’t anywhere for us to go – except the present. What a magnificent present to be in.

Note on living with fibromyalgia: By this time I had stablized my symptoms and didn’t feel like FM was controlling my life. I was living life and just happened to also have FM. That didn’t mean that I could ignore the FM. I made sure I took medications on time, I had back-ups if I had a flare, and I said no to doing some things along the way because I knew it would put too much stress on my body. I also worked with my doctor to prepare for the trip. The trip from Detroit to Bishkek was close to 24 hours long, going through Paris and Istanbul, arriving in Bishkek at 4:00 a.m. He asked my to bring him a schedule of my flights and layovers, using Eastern Standard time so he could help me figure out when was the best time to take medications and when I could use a short-acting sleep aid. He told me how to take care of myself once I was there and when I returned. I also had a lot of adrenaline to help me and determination up the wazoo.

My next blog will cover “A B&B Yurt”, followed by “How to Milk a Mare.”

Some of the above information was obtained from “Kyrgyzstan: Travel Guide” published by Discovery, http://www.centralasia.travel

Excerpts and links may be used, but please give credit to me, Patricia A. Bailey and provide a link to http://imissmetoo.me All pictures were taken by the author and I would appreciate credit if you use them.