meaning

Still Facing Change

/ Pat / 6 Comments
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

Starting Over

/ Pat / 15 Comments
Cat in Sun

Wake up Lazy Cat

I think I have to admit that I’m a lazy person. I haven’t always been like this – I worked really hard in my younger days. I accomplished a lot when I was working, building an academic program into a large, respected and accredited educational major. I, along with my wonderful husband, raised three children adults and I earned several university degrees while doing this. But now I feel lazy and this is tearing me apart and tearing me up.

I retired three years ago and life has changed a lot. As I wrote elsewhere, I didn’t want to retire but had to because of low energy and chronic pain, and I’ve come to terms with that. I am very happy being retired and don’t have any desire to work except for doing a little contract work here and there – and my desire for this is diminishing. I’m very selective. But I can’t shake the feeling that my life lacks meaning.

All we have to decide is what to do with the time that is given us. (J.R.R. Tolkien)

This was a recent Goodreads’ quote of the day and it speaks to my discontent. The one that says, “What is the purpose of my life… now?” My faith in God has been central in my life for a long, long time and while I was working I looked to God for guidance – I still do. I believed that God’s purpose for my life was to give students a quality education, especially students who wouldn’t otherwise have been able to get one and who want to make the world a better place. I looked to God to give me what I needed to make it through each day and to do right – I still look to God but I don’t know what to do that is good and useful and right. I still want to make the world a better place, but…

I had a conversation with friend Kerry, back when I was unhappy about having to retire and he was oh-so-ready. I explained that for me, doing so many of the things people like to do when they retire, like day trips and volunteering, were very difficult. If I had the energy to do those things, I would still be working. I have active days that are happy days but I have to plan on the following day being very quiet and, well, lazy.

Trying to define yourself is like trying to bite your own teeth. (Alan Wilson Watts)

I’ve been trying to redefine myself. I have thought about the lack of meaning in my life for close to a year now. I even thought about giving up and just accepting that life is just about living, nothing more. I had one of my eyeball-to-eyeball conversations with God and I think I heard that I am to enjoy life. Maybe I didn’t hear right – maybe it was just my own voice echoing this nonsense. I still believe I have a lot to give but I haven’t found a way to use those talents in a way that is compatible with how I have learned to live with my body and helps me feel useful. I know that I enjoy thinking, teaching, writing, photography, blogging – all things I have been doing. My interaction with all of you has brought me great joy – but can I find meaning? Is it enough to bring pleasure to people as I share my neighborhoods and travel experiences with you?

water and waves 004

I really have a lot of fun posting photography because it is popular and gets a lot of traffic, especially through the challenges that I participate in. I admit that it is rewarding to see the “likes” add up and to read your comments. I think, however, I need to balance this form of “instant gratification” with some posts that involve writing. I know a lot about the human experience. I have written a few posts on my experience with chronic pain and finding a new way of living – like this post. These posts receive fewer “likes” but also seem to touch those few of you more deeply.

I think I can find meaning in sharing my perspective on life’s joys and challenges as I am starting anew each day. I can draw on my professional wisdom to write about my todays that build on the best and worst of my past. I wrote previously that I remember my past but live each day as a new day. You know, that is what we do every day of our life. We start over, we start anew. And maybe, just maybe, what I have to say about my “new-day-built-upon-yesterdays” will resonate with what you have to say and we will build a dialogue. There, that feels good!

What about the lazy part? Well, this post has been bouncing around in my brain for a couple of weeks but I had been too lazy to put forth the effort to write it. Writing in a way that is clear and concise and engaging is really, really hard. But I am feeling really fulfilled now that I am putting the finishing touches on this post. God never told me life would be easy but maybe she was right – that I am just supposed to enjoy life at this phase of my life-cycle. This means that maybe I can make a difference through my blogging if I am willing to do the hard work that brings joy to my life. I can start over – while building on my yesterdays.

The “Daily Post Challenge – Starting Over” was what got me off my rear end to write this post. You can find out more about it and join the fun by clicking here.

Thoughts on Pictures, Blogging & Experience

/ Pat / 14 Comments

I really enjoyed reading the blog of Matthew J. Flood titled On Pictures, Blogging, and Experience because I have been wrestling with whether photographing our experience is a barrier to experiencing it. I used to believe this was true although I have to admit to albums and boxes of photos taken while on vacations for the past 50 years in order to save the memories.

Since I purchased my new camera I have been looking at these old photographs of trips and family events and realize that the vast majority lack significance. They are simply a recorded image without meaning, and 99% aren’t very good images. I save them because…

I am new to blogging (a little over a month) and my experience of sharing some of my travel stories and reading other bloggers has changed my perspective, however. I am finding that thinking about how to capture an image, the essence of a place or an event or nature, forces me to think about what I am looking at; to appreciate it more deeply. It is forcing me to think about what I want to record and why, what I find beautiful or worthy, and what is important.

Matthew states in his post that, “After seeing or eating or doing something new, writing about it (and this is true of journaling too) forces me to pause and consider; having an audience (however small—Hi Mom!) forces me to dig deeper and find the interesting parts of what I’ve seen.” I have been journaling for the past 8 years and it forced me to clarify my thinking and to clearly write what was going on in my world. Writing helps us to create meaning, can actually help us to define ourselves. It helped me to heal.

New World Order

New World Order (Photo credit: CowGummy)

I also wonder if blogging is just a new form of a very old tradition – oral story telling to relay history, tradition, culture, find meaning…  I enjoy writing more than speaking so blogging is giving me a fun way to tell my stories. Blogging is allowing me to share a piece of my world in words and images. It is also allowing me to share my experiences, my perceptions, of other people’s worlds. What is exciting about this is that our huge network of potential readers allows us to share perceptions and experiences of each other’s worlds. It gives us the potential to better understand our similarities and differences.

English: Monkeys Blogging Español: Simios blog...

English: Monkeys Blogging Español: Simios bloggeando (Photo credit: Wikipedia)

I have to admit to feeling a little bit whelmed by the fact that my blog is visited by people from a multitude of countries. It has forced me to think very carefully about the images I post and what I say. I think about whether an image and description of something I have seen or experienced in another country, especially a country that is poorer, will seem offensive to those from that country who may visit my blog. It is so easy to be ethnocentric – believing what we have, what we value, what we do is the normal or natural way.  This is especially problematic for people from countries that are super-powers or with very high standards of living. What we observe elsewhere can be seen as strange and weird or maybe just quaint or funny, but in a way that is subtly inferior. My previous work led to increased cultural sensitivity but this is challenging me to even greater awareness.

In any case, it is exciting for me to be challenged in the way I think about the world and to have found a new way to express who I am through my pictures and words. Thank you for allowing a piece of me to enter your world.

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

Unauthorized use and/or duplication of written material or images for commercial purposes without express and written permission from this blog’s author is strictly prohibited. I encourage you to use excerpts for noncommercial purposes but please give full and clear credit to Patricia A. Bailey and I Miss Me, Too. by providing specific direction to the original content by provided the URL for this blog: http://imissmetoo.me

Related articles

Facing Change – Maintaining Integrity

/ Pat / 1 Comment

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

Meaning in a Quilt

/ Pat / 13 Comments

During the first year after being diagnosed with fibromyalgia, I was desperately trying to hold on to the life that I had lost. I spent hours sitting, looking out the window, trying to figure out how to make sense of what was happening to me and how to cope with my fear.

I needed a diversion so I started piecing together a new quilt top for our bed. Over the years I had made several quilts, choosing both easy and very difficult patterns – some I finished and some are in a drawer. I looked through my quilting books and picked a new pattern that appealed to me. Here is my journal entry about how this process both helped me cope and seemed to reflect how I felt about my life during this time:

Sewing on my “Contrary Wife” quilt continues to bring pleasure. This has been such a good project because of the symbolism. The name of the pattern fits how I feel I am perceived because of my need to maintain control in my life when I don’t seem to be able to control what my brain does. I know I come across as contrary and always putting up a fight. On the other hand, the pattern is bright and colorful.

It was fun to use all my favorite fabric while buying lots of new pieces. This is bringing joy to days that could otherwise be quite devoid of joy. Each block is unique and different while having a constant pattern. As I look at the different blocks I have designed, they seem to reflect how I experience life on different days.

Some of the blocks are muted and relatively dull – although I love the fabrics and find the combination of fabrics pleasing. Some of the blocks are very bright and intense. Some are high contrast, maybe even sharp, like the pain I feel in my legs and arms. Some blocks are not so pleasing by themselves – the colors are not my favorites and I would leave them out if they weren’t necessary for holding the rest of the quilt together. Sometimes the unpleasant colors of our life-quilts are necessary for the overall beauty. I also like the strong lines of the pattern when the blocks are laid out. The strong diagonal lines seem to hold the quilt together, just like I need strong lines of faith and love to hold my life together.

The most important characteristic of this quilt pattern is the fact that, with careful work, I can make the points and seams line up. With a little effort in measuring accurately, sewing correct seam widths, and multiple re-stitching, I can make it work out. I need this as I am struggling against what seem like the insurmountable odds of finding what will work to help me feel good with a condition that will not go away even if I do everything right.

I am so glad I have my faith to guide me through this. I have to believe that God has provided me with everything I need to make the most of this situation. Of all the hundreds of quilt patterns that I know are just waiting for me to do, the one that I felt compelled to do is the one that is perfectly meeting my needs. 

I finished the quilt top but it was several years before I took it to be quilted and I finished binding the edges so I could use it on my bed. This was my “fibromyalgia quilt” and fibromyalgia was causing me so much emotional and physical pain that I couldn’t get my mind around how my “fibromyalgia quilt” could comfort me as I lay under it.

People deal with traumatic experiences by finding something good within it or turning it into something positive – we want to find meaning in our pain. I wanted to find some good in having fibromyalgia but I couldn’t, no matter how hard I tried. Maybe not wanting to get comfort from my fibro quilt was symbolic of my not wanting to see any positive in having fibromyalgia. Maybe it was a symbolic act to express my anger over having my life and my very self taken away from me. Wrapping my “fibromyalgia quilt” around me and getting comfort from it was something I refused to do.

I finally did enough emotional healing to finish it in the sixth year after diagnosis and it has become a beautiful expression of my determination and courage. I’m still not sure, however, that I can find any positive meaning from having fibromyalgia. My life is good, but not because I have fibromyalgia.

Copyright © Patricia A. Bailey, 2012-2013.