Cooling it in the Garden

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Since October we have been unnerved by noise at our Florida condo. The teeth jarring noise of jack hammers taking up tile and reciprocating saws going through steel beams. Wood saws vibrating onto our cement ceiling, going down the walls, across the floor, and up our bodies. Wooden mallets hitting the edges of wooden floor planks at just the right velocity to reach our temples. Owners around us are just finishing up renovating their condos and now the association has contracted to have railings fixed. Railings that are medal and embedded in cement. More nerve jangling jackhammers.

My Tuesday morning photography walks at the Naples Botanical Garden have been my sanctuary from the assault on my senses. Fibromyalgia, in part, involves a malfunctioning of the nerves that carry pain signals to the brain. Too many get through the spinal column and then the brain amplifies the signals. My nerves are fried so I seemed to focus on the simple as I walked around. I tried to limit the amount of stimulation I studied through my lens.

I focused on simple pleasures…

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and strolled down paths that are familiar.

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I was drawn to nature’s groupings that emitted a sense of peace…

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and lingered near the plants that touched my whimsy.

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Prairie Dogs Searching

And as I strolled I found some surprises to distract my focus on my frustrations.

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Sometimes life is just plain hard and I’m so fortunate to have a beautiful place to escape to, a place where nature has been nurtured to be its most beautiful. During this season of assault by noise, I found healing by sitting on benches while my senses took in the beauty of my surroundings. Yes, nature does have the capacity to heal.

 

This post was submitted to Lens-Artist Photo Challenge #33: Nature.

Still Facing Change

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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.

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Take a Deep Breath

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Lake Michigan from Sleeping Bear Dunes, Michigan

‘Take a deep breath, Pat, and go to a special place in your mind where you are happy and at peace.’ I tell that to myself often to control the stress in my life, to lessen the amount of fibromyalgia pain and fatigue. Lucky for me that I have thousands and thousands of photographs on my computer (and a few on my walls) of those special places, the ones that elicit memories of smiles and joy.

I had a doctor’s appointment this morning – of the 6-month geriatric kind. Having fibromyalgia taught me how to use doctors so I went prepared. I had identified the problem that I think is most important to work on within the poor sleep, pain, and fatigue cycle. I always ask myself if I really want help with a certain problem or is it something I need to work out myself. I don’t present a problem if I know I don’t want another prescription or an appointment for testing and another doctor. I don’t ask for help if I know I will say no to the help that is offered. I had that all figured out and I had my notes so I could be quick and concise with problem, symptoms, and questions.

I never got to my notes. The doctor came in notably frustrated and knowing what he needed to get done instead of wanting to know what I needed from him. He needed to do a drug work-up with me to document the when, what, where, and why of the controlled substances he has prescribed for me. He needs to comply with new legislation that tightens access to controlled substances at the risk of loosing his license. That is all we talked about except checking my vital signs.

I understood what was happening and why he needed to do what he was doing. But I left frustrated and very angry – not at him or the legislators who created this new law that adds another layer of regulation. I understand the narcotic crisis and am willing to live with some inconvenience, but I’m still angry.

I am angry at all the people who believe they have a right to do what they want to do to feel good or get rich or be comfortable even if it hurts other people. The Republican platform is less regulation and less government in our lives. No one has explained to them that legislators don’t have late night sessions thinking about new laws and regulations they can create. They create regulations when people do bad or stupid things, like banks giving out junk loans to people who want a bigger house then they can afford and people who do really stupid things with products so laws have to be made making manufacturing more expensive and white people believing they have a right not to feel uncomfortable because someone of color is too close to them, not breaking any law so they call gun-toting police to take them away or kill them and people believing they have the right to not do what they need to do to help themselves feel good instead of taking narcotics. I am angry because so many people seem to believe they have the right to take something they want that doesn’t belong to them (steal) that leads to all the rest of us paying more for the things we need. I hear my high school civics teacher telling us to write this down: “My rights end where your rights begin.” Maybe I’ll have a tee shirt made with that on the front and “Your rights end where my rights begin” on the back.

Two doctors and I have agreed that stopping the drugs I use for FM would be irresponsible so I guess I’ll just take another look at Lake Michigan and chill out. Two of the controlled substances are specifically for fibromyalgia, Lyrica and Sonata (short acting sleep med). I know I won’t abuse them because I have been on a low and stable dose of Lyrica since it came on the market. I only use Sonata about once a month so a 30-day prescription lasts two years. I also have a prescription for Norco that I use 1/2 dose about once a year. At that rate my current supply should last me about 59 years – and that makes me grin. But it bothers me that doctors and pharmacists will have a lot more work to do because others have abused something that was created to make life better for those who use these drugs responsibly. And we will all have to pay for it.

I Miss Me, Too – Revised

 

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I received a notice from WordPress yesterday that this is my 5-year anniversary of maintaining this blog. Funny how things come together to shape my thinking and what I feel compelled to write about. A few weeks ago Michael Watson wrote a post about Those in-between Places that spoke to me. I started a post but it didn’t move much – or maybe it moved in too many directions. Then a post I wrote six months after I started blogging came to my attention and I thought about re-posting it. And last night our friends suggested we take a camping trip to South Dakota to see the herding of the buffalo. Jim suggested that we could change our plans to travel to Nova Scotia and combine the buffalo trip with going to the Canadian Rockies. This really surprised me – and I decided this morning to re-blog the earlier post but with some rewrites to make it relevant to all that is happening now.

In 2012 I wrote: 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 of me left because of the changes in my life due to contracting a chronic condition. I really did miss me – but not any more.

My blog 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.

corners-059.jpgI feel like I turned a corner, from missing me to not missing me. How many times have I said that, about turning a corner? 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 – then eleven in 2012, now twelve in 2017.

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 how 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 can 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, my artistic self. Blogging gave me a platform for sharing the emotional turmoil of having fibromyalgia by posting rewrites of portions of my never-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 with my blogs and my life was enriched through the life stories of other bloggers. It feels like I am on a shared journey of life that is being recorded through our blogging.

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Gros Morn World Heritage Site, Newfoundland, Canada

The second event that seemed to give me a new sense of self was the long camping trip to Newfoundland in August of 2012. This trip shifted life for both me and my husband. A while after I was diagnosed (2004), 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 “dragged 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 was able to let go of the guilt but still had to live with the fact that our life was changed.

Our trip to the Canadian Rockies 9 years earlier was the last traveling camping trip that we had taken and the planned 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 in many ways he isn’t like he used to be 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 was feeling that way when I first wrote this post.

At the same time, in a strange way, a hard to define way, I was and have been afraid of stepping into the future. I wrote in 2012 that 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?

At this time, in 2017, I am also feeling fear about stepping into the future but for a different reason. At 73 I have realized that I have a limited number of days left and no matter how long I live, my health will never be better than it is right now. I have turned another corner and the path ahead just doesn’t seem very hopeful or bright. No one warned me that this would happen, or if they did I wasn’t able to absorb and understand it. Maybe it is something that people prefer not to talk about because I’m feeling a little guilty for writing about it. It makes me sound like I am in a sour, black, depressing mood.

In 2012 I wondered if I could maintain the new me I’d found – forever? What I have now done is look at forever and decided that I can’t see it through rose-colored glasses. I don’t want to. I’m putting my chips on facing this truth head on and by doing so I will be better prepared to face this time of getting old…   onto death. As a result a funny thing is happening – another surprise that I wasn’t expecting. I am feeling a new energy, a new sense of power. By facing this nasty little fact of getting old, I have lessened my dread of that which I have little control over.

Another surprise is that in 2012 I came to a useful conclusion. I realized that 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.

I am listening to what I wrote five years ago because it still works. 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.

Being Unfocused: How Sweet it is.

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A hot summer day seems to call me to lessen my focus, to dull my response, to slow down my breathing as I sit on my purple porch swing. Ben called for this week’s The Daily Post photography entries to focus on focus. I like to have my photographic subjects focused so most photos where I “messed up the focus” are deleted. I don’t have a keyword label for out-of-focus.

This one I saved, however, and it reflects my emotional view of life as we are working our way through the current early-summer hot spell. Although maybe it doesn’t have as much to do with a hot summer day as it does with my joy of growing older.

I am rejoicing in a newly-found state of mind where things that used to matter a lot, used to get me all worked up, aren’t as important any more. I can get concerned about our political mess but its okay for me to let it be a little blurred around the edges. Although I will act if I need to, my decreased energy requires that I be discerning about what I get worked up about. I have found that stress increases the pain and fatigue of fibromyalgia more than just about anything else.

I have found my sweet-spot of emotional and intellectual contentment if I focus in on what is happening in my state and national capitals – and then take a few steps back until it is all slightly out of focus. Photography has taught me a lot about life.