Coping

Living in the Age of Covid-19: Control

/ Pat / 14 Comments
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View from my sewing corner.

My social calendar is blank, although we have found some low-risk ways of occasionally being with one or two other people. The surest way that I have found to be with people at a distance is to work in my front flower garden. A good number of people walk in our neighborhood and most people say hi and the people we know best stop to chat – but they don’t get too close because they really don’t want to work with me. Even when I tell them there are enough weeds for everyone.

My garden seems really happy right now, probably because I have showered it with attention this year. Because of stay-at-home and social distancing I can’t be somewhere else or can’t have friends over for cards or dinner. As with every spring, the first order of business in my garden was going after the weeds, thinking it would also count as exercise because I can’t go to the gym. As I weeded I remembered that some daylilies needed dividing because they haven’t bloomed much in the past couple of years. Then I realized that the veronica should be moved because the dwarf lilac is starting to encroach on it. And the 12-year-old gold falsecypress was getting too big for the garden even though I did some major pruning in the past two years. Jim took that out along with the flowering almond that no longer had many redeeming qualities, and two ground cover evergreens that were looking their age. That last sentence fragment doesn’t sound very gracious – given that I am also looking my age. Out back by the poppies, Jim took out a beautiful “Limelight” hydrangea that I planted in the wrong place but too long ago to make it possible to transplant it – at least without a backhoe. This year we are really enjoying the poppies and new bird bath that aren’t hidden by the hydrangea.

These are the physical things we have been doing in the garden, along with planting some new perennials. Twelve years ago I started with a blank slate, planting some evergreens and small flowering shrubs to give some structure (the ones we are now removing). Then I started filling in with some perennials from the house we left and from several trips to the garden center. My goal was to get some things growing and fill in the distance between with mulch. It was a long, slow process and I don’t do well with waiting a year or five to see results.

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A new canvas – April 2008

 

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My 2018 garden in early July

But my garden did grow and mature. It survived a few years without much care as I struggled to get control of fibromyalgia that overtook my life. Jim kept the weeds under control, mostly, and one year for Mother’s Day my daughter and three granddaughters came to weed because neither Jim nor I had enough energy to tend to it. In the last few years I have been fighting some very invasive weeds, mostly doing garden crisis control, although I visited some garden centers and would pick up a plant or two of interest to put someplace that was a little bare. Ya, I liked the buying more than the planting and tending.

This year has been different. I actually have enjoyed the process of gardening as much as the excitement of waiting to see how it will look. I bought and planted several new perennials where I think they will accent existing plants. I am contemplating how to best fill in the spots where shrubs were removed and how new planting will improve the overall structure. The fun part is that I feel my 12-year-old garden moving into a new phase in its lifecycle and maybe this change is reflecting a new change in me. Maybe.

I have been quilting and gardening in an attempt to exert some control, to make things work, to create beauty in a world that feels dangerous and on the edge of being out of control. I have been getting pleasure from fixing the plantings in my garden and putting small pieces of fabric together so they make something better than each individual plant/fabric piece, so they work together better.

What I really want is to have an impact on our social problems. What I really want is to be able to control the spread of misinformation, of lies, of wrong-headed beliefs. I want to control what other people are doing (or not doing) that is increasing the deadly spread of the virus that our national leader is denying. I want to get inside the brains of racists and white supremacists and wipe out all the garbage they have in there – and re-order the firing of neurons so they don’t create and spew out hate and injustice.

And on my darkest days I stoop to thinking of really evil things to do to people who refuse to listen and learn from science, who won’t read widely and critically so they can make informed decisions instead of acting on blind instinct. I want bad things to happen to people who put their self-interests ahead of the common good of society. Dear God, am I asking too much of humanity?

This week I am in a dark mood; I feel depressed and have to force myself to do things that normally give me pleasure. It has taken me so long to finish this post that the poppies are in their last day of blooming. Last week I felt that life was about as wonderful as it could get. My world (my bubble inside an insane world) was full of beauty and kindness and graciousness. I have been experiencing these mood swings for some time now and suspect there is a correlation with the amount of political news I listen to or what crisis is being reported. Given that I feel a responsibility to knowing what is happening in the US and around the world, this will be the price I have to pay.

But I have been feeling a difference in how I garden and quilt and maybe even how I respond to the news I listen to and the people I interact with. I am observing a slight shift in how I do my work of living in an imperfect world. In my garden I am feeling more tolerant of the time it takes for plants to mature and taking more interest in creating happy combinations of flowers and foliage. My flowers may be allowed to grow as their DNA instructs them to grow without having to bend to my rules and control (no worry about my giving up complete control, though).

Maybe I’m giving up my wrong-headed belief that I have a responsibility to make the world right. Maybe I’ll try doing what I can to improve our society, but when I can’t do anything I will focus on making beauty in my little corner of the world.

My Foul Mood is in Lock-Down – Don’t Want it to Spread

/ Pat / 16 Comments

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My mood is foul this morning so I went to the files of photos taken at the Naples Botanical Garden through the middle of March when the garden closed to visitors. I thought I would post something cheery. Maybe I’m assuming everyone else is as grumpy as I am, or maybe I am hoping I can cheer myself up in the process.

The first photo in the file of my last visit is the one above. I remember taking it as the early morning sun was reflecting off the ripples on the water’s surface, making stripes on the foliage of some water iris. The solitude of the early morning garden, the poetry of a quiet breeze punctuated by bird calls, the cool air with a promise of warm sun are captured in this somewhat messy still-life, a reflection of a somewhat messy real-life. This photo was a strong contender – it reflected calm and peace.

I thought of using a photo of the water iris, but went right by them – they just seemed too cheery for this morning. Besides the front leaves were out of focus and this grated on my nerves – so I looked in an earlier file for some photos that I knew were technically better. They were nicely done but still too cheery, so none made the cut.

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I quickly scrolled through the other photos, but none emitted the emotions I wanted to share with you… until I reached the last one. I lingered on this image, the same way I did when I first downloaded it. It exudes a sense of grace and beauty. There is a natural beauty to this orchid that I couldn’t improve with post-processing. As my eye travels around the composition it brings me a sense of peace and well-being, almost making my grumpiness fade into the background (if you look closely you can see it in the upper, left-hand corner).

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Deciding which one to use is really difficult. I guess I’ll get a glass of water, take my morning pills, and finish up the masks I’m sewing.

Please stay safe and stay well.

Still Facing Change

/ Pat / 6 Comments
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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.

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

Coping with Change

/ Pat / 11 Comments
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Delphinium planted in the Naples Botanical Garden reminds me to buy some for my Northern garden.

It’s that time of year when things are a-changing for me. It’s that time of year when I move from my winter home in sub-tropical Florida to very early Spring in Michigan. This isn’t the first time I’ve made this change and probably not the last time I’ll write about it. I’m at the point in the process where I have to stop to think where I keep the sharp knives, the spoons for my morning cereal, my favorite spatula, and my whisk. It is the time when I turn on the bathroom faucet to a harder flow instead of turning it off because the faucets work in different directions at each place. It’s a time of achy body and exhaustion – for a little while until I adjust or the weather gets warmer.

And it is the time of shifting friendships. Most of the migratory condo residents had left before we did so I had to give good-bye hugs and feel the sadness of loosing them for a few months. We have lived there long enough to become close and really care about each other. We left a few behind who won’t be leaving until May and I worry about them becoming lonely – like I was becoming without everyone being there. I really appreciate that we have made close friends who will be excited when they see us next October or January. There is a bond that has formed and with that bond is also the price of having to say good-bye – but I wouldn’t have it any other way.

It is also the time of making connections with friends and family in Michigan. I want to see them all right away and that feels overwhelming but it must be worth it because I am starting to contact people and set up dates. Because people are so much more important than a clean house, my housekeeping will be done in little spurts. We are still getting things put away from the car – maybe next year we won’t take as much back and forth.

This year was complicated by my computer motherboard crapping out the end of March. What a pain! It seems like everything I need is on my computer and I had to wait until I came north to get a new one because the disks for my most used programs are in Michigan. I think that almost everything is loaded and working well, and I am once again feeling calm. I am also finally able to see and process the photos from my last two visits to the Botanical Garden.

The hardest part of not having a computer for three weeks was the loss of connection with people – some blogging buddies and some friends/relatives who are best connected with through social media. I wasn’t able to write any posts and missed reading what the people I follow are writing about. I have some catching up to do.

My take-away is that, even though I get stressed about the state of our government, the amount of violence in the US, conflict and migration around the world, and global warming, what is going on in my personal worlds seem to demand my full attention when there is unsettling change. Family/Friends and security seem to be getting more important, maybe even critical to my well-being. Something for me to contemplate.

Sharing the Big “F’s”: Frustration & Feelings

/ Pat / 1 Comment

 I started keeping a journal when I was diagnosed with FM 8 years ago. I am now using those journals to identify the issues that I faced, some of the lessons I learned, and to share my journey of coping and healing.

During that first year I felt very lonely because I didn’t know how to talk about my frustrations and feelings with family, friends, and the people I worked with. Maybe I was afraid to talk about them. Almost everyone I knew was aware that I was diagnosed with fibromyalgia because they had been very worried when I got so sick so quickly. Our local newspaper also ran a feature article on someone with FM right after I returned from Mayo with a diagnosis. Because the people around me cared and were informed, they would ask me how I was doing and usually I would say fine and changed the subject. It just didn’t seem appropriate to say things like: I’m angry because I don’t have the energy to get my work done; I’m scared that I won’t get my life back; or, I’m so frigging tired of being tired (or hurting, or crying).

Sometimes I would talk to people about how I felt when it seemed appropriate and I thought I could trust them. Sometimes these people had their own health problems and frustrations. Sometimes my experience became a shared experience that brought us closer together and we ended up having a really good laugh about our situations. But sometimes I was afraid to talk about it and I wanted to avoid people – I just went home and hid. I was looking for a way to let people know how hard life was so I didn’t feel so lonely but I didn’t always know how to do it. If I said too much, I was afraid that I would be seen as a whiner and complainer and it would make people want to avoid me. Deep down I felt weak and defective and didn’t want people to see that part of me. What I learned: If I don’t share my frustrations and feelings, I will be lonely. I will become even lonelier if I talk about my frustrations and feelings with the wrong people, at the wrong time, and too much.

I discovered through the grapevine at work that there were other employees who were diagnosed with FM. At first I thought that we could support each other but I soon discovered that they didn’t seem to want to talk about it either. Maybe they felt like me; living with chronic pain and fatigue while trying to get my work done took more endurance than I had. The few times we did talk about it, it felt like they also needed to pretend that everything was “normal” so they could make it through the day. I suppose we could have shared ideas for what helped with symptoms, but this made for a very short conversation because there didn’t seem to be many options and what worked for one didn’t seem to help the other. I wanted to know what others were experiencing but talking about how miserable we were got boring really fast. Besides, I preferred to do my crying in private.

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. Excerpts and links may be used, provided that full and clear credit is given to Patricia A. Bailey and I Miss Me, Too with appropriate and specific direction to the original content at: http://imissmetoo.me 

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