Still Facing Change

DSC_0161

Sculpture at Hidden Lake Garden, Michigan

I must be going through another period of change brought about by growing older and the challenges that entails. I’ve been going back and rereading some of my early post, back in 2012, when I was a new blogger and using my posts to share my struggles in learning to live with fibromyalgia. Writing was an exercise in healing and sharing my struggle with an invisible audience seemed to help. Or maybe I was hoping to connect with others and my journey of healing, that was then 8 years along an “unto death do we heal” path, would give hope to others.

Most of my blogging has involved sharing photography and travels, and sharing my two neighborhoods, one in Michigan and one in Florida (USA). I have met some wonderful people through my blogging, and many of them have had to face unwanted changes in their lives and it has been a pleasure to hear their stories and to share our mutual understanding. It seems that sharing personal stories that are honest and without pretense brings us closer together. Sharing our struggles without self-pity draws others in because most people have an innate desire to help, if only to carry the yoke of emotional burden with us for a while.

It feels right to re-post this that I wrote in June, 2012:

FACING CHANGE – MAINTAINING INTEGRITY

My doctor introduced me to the term “new normal” and it intrigued me – probably because I was well on my journey to finding one. And it was a hard journey, as bumpy and wild as the five-day tour of Kyrgyzstan in a 4-wheel drive van driven by a guide who had fantasies of being a bronco rider – more about that in different posts. The journey to a new normal was full of doubt, fear, pain, sadness, and anger and it required a major change (not just a shift) in how I thought about myself and my life. It took courage and perseverance; sometimes I wanted to give up but I didn’t know how. Even though I became discouraged at times, I always had a strong drive to find a way of living that had integrity. But what does a new normal consist of?

I wrote this in my journal in October 2004, ten months after being diagnosed.

For many years I have found strength and direction in the following words by James Baldwin (1961, Nobody Knows my Name, p.100):

 Any real change implies the breakup of the world as one has always known it, the loss of all that gave one an identity, the end of safety. And at such a moment, unable to see and not daring to imagine what the future will now bring forth, one clings to what one knew, or thought one knew; to what one possessed or dreamed that one possessed. Yet it is only when a [person] is able, without bitterness or self-pity, to surrender a dream he has long cherished or a privilege he has long possessed that he is set free – he has set himself free – for higher dreams, for greater privileges.

I need to reflect on what this means for the changes I am experiencing. There are days when I feel like my world is breaking up, I sometimes don’t know who I am anymore and whether there is enough of me left; I’ve lost the safety of knowing who I am and what my body can do. And I am really afraid of what my future will be like.

Thinking about what it means to give up my dreams and privileges will have to wait for another day, when I can muster enough courage. It has been many years since I’ve felt this much emotional pain. I had forgotten the feeling of crying from so deep that it feels like a fist in my stomach.

 Seven months later I reflected on what I had written above in the following journal:

During the past 7 months, as I had to face a very uncertain future, I tried to cling to what I had been and especially what I thought I wanted to be. I fought to hang onto my dreams and hard earned privileges. James Baldwin wrote to the privileged whites who he is asking to give up their personal dreams and social privileges for a more just world. I would have to rewrite the last sentence in order to communicate the journey I am taking:

 Yet it is only when I am able, without bitterness or self-pity, to surrender my old life – and be willing to live the life I have been given – that I am able to have a fuller life.

 I think I am mostly there, sometimes more gracefully than other times. Most days I feel a peace that comes from knowing God will use me in ways I can’t even imagine. I feel a peace that comes from knowing God will give me what I need when I need it. I’m not quite as graceful when, after I have done things that I didn’t think I was capable of, when I have pushed myself to my physical limit, I experience days of pain and fatigue. I guess I didn’t think that was a part of my covenant with God, but then he never promised life would be easy. He just promised to love me and be with me.

When I wrote the previous paragraph I believed that I was “mostly there.” I had done a lot of grieving, had felt a lot of sadness, fear, emotional pain, frustration, and anger. But I still had a long way to go because developing a chronic illness like fibromyalgia impacted on all aspects of my life and adjusting was a process that took years. At times I felt like I was taking too long but adjusting to a chronic illness is neither easy nor quick.

I was in my late 50’s when I was got sick so I also had to deal with the physical and life changes that took place as I was aging along with the changes imposed by fibromyalgia. I have been thinking about people who develop chronic illnesses in other stages of the life cycle and know that each life stage has its challenges and tasks and adjusting to a chronic illness makes accomplishing the task even more challenging. The bottom line is that no matter how old we are, being diagnosed with a chronic illness is devastating and disrupts our goals and dreams.

Here is what I wrote seven and a half years after being diagnosed explaining how I knew I had found my new normal:

I have made two interesting discoveries that have confirmed for me that I have settled into a “new normal.” One is a quote from an article that I discovered while doing a literature search for my writing. The literature review includes the work of Nola Pender[i] who proposed that levels of health exist along a continuum and interact with the experience of illness. And here is the interesting part for me: “Whatever the illness experience, the individual continues on a quest for health – a developmental process… Through this developmental process, it is possible for a subjective state of good health to emerge in the presence of overt illness or disability.”

Boy this makes a lot of sense to me when learning to live with a chronic illness. The authors have put into words what I have experienced. Even though I am very aware (when I think about it) that I have fibromyalgia because symptoms don’t ever seem to totally go away, I still am experiencing a subjective state of good health. How cool is that!

The second discovery is that my life no longer centers on fibromyalgia. Instead, I am living my life fully with some limitations due to fibromyalgia. Most of the time when I am active and doing things I love, I don’t even think about having fibro. It has become one small piece of my identity and how I live my life.

My doctor helped me understand that a new normal is not a destination that we arrive at but a new way of being right now. It is being who we are right now as we move through our life-cycle phases. It is a way of thriving as we are continually adjusting to the demands placed upon us by having a chronic illness. This means that I will face future challenges as my life circumstances change and I will have to continue to work on what it means to thrive, to live my life and be who I have been called to be.

What is encouraging to me is that I once again feel like I am in tune with my normal life cycle. I can once again take an active role in making decisions about who I am as I age and how I want to live my life, as some options are lost and new opportunities become available. Fibromyalgia will always be a factor in the decisions I make but I don’t feel like my chronic illness is in control of my life. My life has integrity.


[i] Pender, N. J., Murdaugh, C. L., & Parsons, M. A. (2002). Health Promotion in Nursing Practice. Upper Saddle River, NJ: Prentice Hall.

 

Copyright © Patricia A. Bailey and I Miss Me, Too/imissmetoo.me 2012-2013.

Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. I encourage you to use excerpts but please be sure to give full and clear credit to Patricia A. Bailey and I Miss Me, Too. Please also give specific direction to the original content by provided this Blogs url at: http://imissmetoo.me

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.

Facing Change – Maintaining Integrity

My doctor introduced me to the term “new normal” and it intrigued me – probably because I was well on my journey to finding one. And it was a hard journey, as bumpy and wild as the five-day tour of Kyrgyzstan in a 4-wheel drive van driven by a guide who had fantasies of being a bronco rider – more about that in future posts. The journey to a new normal was full of doubt, fear, pain, sadness, and anger and it required a major change (not just a shift) in how I thought about myself and my life. It took courage and perseverance; sometimes I wanted to give up but I didn’t know how. Even though I became discouraged at times, I always had a strong drive to find a way of living that had integrity. But what does a new normal consist of?

I wrote this in my journal in October 2004, ten months after being diagnosed.

For many years I have found strength and direction in the following words by James Baldwin (1961, Nobody Knows my Name, p.100):

 Any real change implies the breakup of the world as one has always known it, the loss of all that gave one an identity, the end of safety. And at such a moment, unable to see and not daring to imagine what the future will now bring forth, one clings to what one knew, or thought one knew; to what one possessed or dreamed that one possessed. Yet it is only when a [person] is able, without bitterness or self-pity, to surrender a dream he has long cherished or a privilege he has long possessed that he is set free – he has set himself free – for higher dreams, for greater privileges.

I need to reflect on what this means for the changes I am experiencing. There are days when I feel like my world is breaking up, I sometimes don’t know who I am anymore and whether there is enough of me left; I’ve lost the safety of knowing who I am and what my body can do. And I am really afraid of what my future will be like.

Thinking about what it means to give up my dreams and privileges will have to wait for another day, when I can muster enough courage. It has been many years since I’ve felt this much emotional pain. I had forgotten the feeling of crying from so deep that it feels like a fist in my stomach.

 Seven months later I reflected on what I had written above in the following journal:

During the past 7 months, as I had to face a very uncertain future, I tried to cling to what I had been and especially what I thought I wanted to be. I fought to hang onto my dreams and hard earned privileges. James Baldwin wrote to the privileged whites who he is asking to give up their personal dreams and social privileges for a more just world. I would have to rewrite the last sentence in order to communicate the journey I am taking:

 Yet it is only when I am able, without bitterness or self-pity, to surrender my old life – and be willing to live the life I have been given – that I am able to have a fuller life.

 I think I am mostly there, sometimes more gracefully than other times. Most days I feel a peace that comes from knowing God will use me in ways I can’t even imagine. I feel a peace that comes from knowing God will give me what I need when I need it. I’m not quite as graceful when, after I have done things that I didn’t think I was capable of, when I have pushed myself to my physical limit, I experience days of pain and fatigue. I guess I didn’t think that was a part of my covenant with God, but then he never promised life would be easy. He just promised to love me and be with me.

When I wrote the previous paragraph I believed that I was “mostly there.” I had done a lot of grieving, had felt a lot of sadness, fear, emotional pain, frustration, and anger. But I still had a long way to go because developing a chronic illness like fibromyalgia impacted on all aspects of my life and adjusting was a process that took years. At times I felt like I was taking too long but adjusting to a chronic illness is neither easy nor quick.

I was in my late 50’s when I was got sick so I also had to deal with the physical and life changes that took place as I was aging along with the changes imposed by fibromyalgia. I have been thinking about people who develop chronic illnesses in other stages of the life cycle and know that each life stage has its challenges and tasks and adjusting to a chronic illness makes accomplishing the task even more challenging. The bottom line is that no matter how old we are, being diagnosed with a chronic illness is devastating and disrupts our goals and dreams.

Here is what I wrote seven and a half years after being diagnosed explaining how I knew I had found my new normal:

I have made two interesting discoveries that have confirmed for me that I have settled into a “new normal.” One is a quote from an article that I discovered while doing a literature search for my writing. The literature review includes the work of Nola Pender[i] who proposed that levels of health exist along a continuum and interact with the experience of illness. And here is the interesting part for me: “Whatever the illness experience, the individual continues on a quest for health – a developmental process… Through this developmental process, it is possible for a subjective state of good health to emerge in the presence of overt illness or disability.”

Boy this makes a lot of sense to me when learning to live with a chronic illness. The authors have put into words what I have experienced. Even though I am very aware (when I think about it) that I have fibromyalgia because symptoms don’t ever seem to totally go away, I still am experiencing a subjective state of good health. How cool is that!

The second discovery is that my life no longer centers on fibromyalgia. Instead, I am living my life fully with some limitations due to fibromyalgia. Most of the time when I am active and doing things I love, I don’t even think about having fibro. It has become one small piece of my identity and how I live my life.

My doctor helped me understand that a new normal is not a destination that we arrive at but a new way of being right now. It is being who we are right now as we move through our life-cycle phases. It is a way of thriving as we are continually adjusting to the demands placed upon us by having a chronic illness. This means that I will face future challenges as my life circumstances change and I will have to continue to work on what it means to thrive, to live my life and be who I have been called to be.

What is encouraging to me is that I once again feel like I am in tune with my normal life cycle. I can once again take an active role in making decisions about who I am as I age and how I want to live my life, as some options are lost and new opportunities become available. Fibromyalgia will always be a factor in the decisions I make but I don’t feel like my chronic illness is in control of my life. My life has integrity.


[i] Pender, N. J., Murdaugh, C. L., & Parsons, M. A. (2002). Health Promotion in Nursing Practice. Upper Saddle River, NJ: Prentice Hall.

 

Copyright © Patricia A. Bailey and I Miss Me, Too/imissmetoo.me 2012-2013.

Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. I encourage you to use excerpts but please be sure to give full and clear credit to Patricia A. Bailey and I Miss Me, Too. Please also give specific direction to the original content by provided this Blogs url at: http://imissmetoo.me