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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Thankful after Thanksgiving

mt ranier 061It is easy to sit down on Thanksgiving Day and make a list of what I am thankful for – but I felt almost repulsed by that exercise this year. Besides, after 50 years of adulthood lists they begin to look very similar – except for the occasion year when all I could be thankful for was that the prior year was over. My one daughter is there right now after a difficult year for her and her family.

This year I feel a need to do something different than think about what I am thankful for. This year I feel a shift in my being – a shift from a pause to be thankful to a different way of being in each day. I think it has to do with the aging process. I no longer need to “make it” in the sense that I did when I was in my younger years, when I was thankful for events and accomplishments that made me more “adult.” I now live with a sense of peace that I accomplished what I needed to accomplish and can forgive myself for what I wasn’t able to do. I also know that I lived a good life, attributed in part to good decisions but also because that unpredictable, uncontrollable fickle finger of fate worked in my favor bringing opportunity and wonderful family and friends into my life along the way. Occasionally I have brief moments of sadness over paths that I could have taken “if only…,” until I remember the joys of the paths I chose. Sometimes I’m hit with grief over family and friends who have died, but also feel the joy of having had them in my circle of love.

That seems to be where my mind goes when I pause to be thankful – I think about the past. Then I start thinking about the future and how I want to live my life in my remaining years. Those thoughts seem to spring from some notion that I need to give back for all that I have received. I think about how I could use my mind and ability to write – to make a difference in our national politics. Maybe I could even write so powerfully as to convince a few people that wanting to ban semi-automatic weapons has absolutely nothing to do with wanting to take guns away from law abiding citizens who use them for hunting or the sport of target practice or who collect antique guns. (Oops, how did that editorial slip in??)

When I start thinking about all the things I could do I begin to feel dragged down. If I am honest with myself I know I am limited in the things I can do, and what I choose to do I need to plan well and be vigilant about energy and pain levels. I don’t feel like I have the energy to give as I would like – and that makes me sad. Really sad.

How can I be thankful when my life is limited and, because of my age and fibromyalgia, I know it is only down hill from here? Do we reach an age when we are no longer expected to give; when we can just take? When I taught about adulthood and aging, I discussed with students the theory of role reversal, the reversal of children taking care of aging parents. It was clear then – now that I feel it beginning to happen, not so much. Back then the emotional part was more theory than real. Now it is in-my-face real.

I still want to age gracefully, with joy and peace and love and laughter and stimulating activities. I thought I was doing a pretty good job. I had decided to take each day as it came – finding joy in doing chores and fun activities (like making quilts). Being thankful each day for what I could do without thinking about what I used to be able to do or want to do in the future. Today. Joy. Thankfulness. Wow.

Then we brought the Christmas tree upstairs, the pre-lit one that we cut all the lights off last year because half weren’t working. I had a plan. I would sting the lights securely so I could leave them on. I started stringing the bottom third with colored lights in the center (JB wanted colored) and white on the ends of the branches (my choice). I did a little and then would do something else that allowed me to sit and rest. Then I did a little more. I was able to make the strings of lights end so I could start new ones on the middle section. I worked on the tree Monday and Tuesday. Took lights off on Wednesday because they weren’t ending at the top of the middle section.. Decided on Thursday (with tears of frustration) that we wouldn’t have a tree this year, but instead I started putting lights back on. Friday I bought two more strings and put them on. Friday I took those off because I had bought LED and they didn’t look right with rest of tree. They also weren’t long enough so JB went out to buy two longer strings. The lights still weren’t going on right so Friday night I took most of the lights off. Saturday I put lights back on, with a new plan of taking them off after Christmas. JB’s worked with me on the top third that gave me the energy to finish with the light stringing.

It is beautiful. JB and I agree that it is the most beautiful tree we have had in many years. But it took me a week to put lights on the tree and it wasn’t a graceful process. I cried and cussed and was surly. I gave up several times, lost sleep over it, and felt very little joy during the process. Not the way I want to live – but it isn’t my normal way of living.

During this same week I designed and bought fabric for a darling quilt for my new two-year-old great-grandson. I am so excited about it, and thankful that Kaden is a part of my life and that I can bring joy to my grandson and his new wife. And what about the tree? Yes, I wasn’t at all graceful but I kept going back, I kept doing as much as I could, I persevered and changed my plan as needed, and I “got er done.”

Maybe I don’t need to always be graceful. Maybe I need to take on challenges and fight my way through even if it isn’t good for my body and spirit. If most of my life is lived with joy and thankfulness, I think I can forgive myself for those moments (or weeks) when I’m not feeling it so much.

Morning at the Beach

20150122-beach 001The Gulf of Mexico beach is just a 5 min. drive from my door but I haven’t gone this winter on one of those early morning photo excursions. I enjoy them so much so decided it was time to go on Thursday morning. I was motivated by my wonderful memories of joy and peace, remembering how all my senses are delighted when on the morning beach. I wanted to experience this again.

Thursday morning, however, something was wrong. I struggled to become engaged and didn’t feel my normal joy and peace. It wasn’t a problem with the beach as the water was a beautiful color, with the low tide exposing interesting patterns in the sand. The morning air was cool and the sun was gently warming my back. I walked to the water’s edge and was intrigued with a couple of starfish that had been dropped by the outgoing tide and were now being retrieved by the rising tide.

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I have been carefully choosing when to walk because of foot pain, so I did what I have done so many times in the past – I sat my fanny down on the sand and waited for the beach to come to me. Not much came to me except lots of walkers and a couple of gulls.

20150122-beach 004The problem was within me. I took some deep breaths to center myself and focused on the beach around me to catch the mood – but it didn’t happen. I felt a dullness of mind that interfered with my ability to engage and focus. My intention was to practice photographing the movement of water, and even though I took some shots, my heart wasn’t in it.

Today I am ready to admit that I am feeling this same dullness of mind in all that I do. It has taken me 10 times longer to write this blog than it normally takes me. I maintain my health through a very fine balance of self-care and medications. This time I think the balance of medications is off – and I need to cut back on a new medication for nerve pain I’m taking.

I am so thankful for my past doctor who taught me how to manage my self-care and for my current doctor who trusts me and is willing to work with me so I can make modifications as needed. I’ve looked at the weather predictions for the coming week and I think there will be some days that will be perfect for returning to the beach.

Nice & Easy Does It

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What a hoot watching ducks walk on ice. It seems like certain conditions call for adaptations from all of us. Even funnier was watching birds fly in for a landing on ice. All things considered, a graceful slide while remaining on his feet (although the tail does seem to be dragging).

MSU Bird Sanctuary 078-2 I am so thankful for the two times I have been able to get out with camera in hand and the companionship of friend Julie. When in Florida, I forget how hard the cold weather is on my body and the grey sky is on my morale. I know what I need to do to keep pain and fatigue at manageable levels but there are still times when I do everything right and still have a bad body day.

Yesterday was one of those days when my firm footing became precarious. I don’t know why – maybe just a change in atmospheric pressure. Every cell of my body hurt at some point and my attitude was shameful. I was irritable with a friend who called to invite us to supper later in the week: speak of biting the hand that feeds me. JB could see I was having trouble, even before I started crying. He tried to hold me but I wouldn’t let him because it hurt, both physically and emotionally. Usually bad body days aren’t accompanied by a bad attitude – I just use those days as rest days finding quiet things to do while sitting in my favorite chair.

This morning I woke up refreshed, body feeling relatively good, and my mind sharp and happy. I was active today, being sure to allow time for periodic rests. And I’ve decided to give myself an early Christmas present (besides the new CD player I ordered). I have decided that every day doesn’t have to be an isn’t-life-great day where I am joyful and thankful. In my heart I am full of joy and gratitude, but there are days when the ice is just too slippery and I fall on my tush. I refuse to be grateful for my really bad body days. I’m going to grumble a lot and do what I need to do to make the next day better.

That decision feels really good – and everyone else is just going to have to deal with it. That is what I do best – just dealing with it. And on this good day I’m sending all of you peace, love, joy, and lots of hugs. And maybe there is a special gift you need to give yourself.

When One Door Closes…

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Doors fascinate me. I love photographing doors and have been thinking of the saying, “When one door closes, another opens.” I wonder if this is really true about life because it feels like so many doors I would like to think are open, are not. We traveled to the Northwest part of the US last summer and I read about lots of trails to supposedly beautiful water falls and mountain vistas. I wanted to walk these trails, like I used to, but I know I am overcome with fatigue and pain way to quickly to make it there and back on foot. We are looking at Alaskan cruises and the more interesting ones have hikes and kayaking. I’m afraid those doors are closed to me. Is it so simple that all I need to do is go up and open the new door I want to enter? What if I don’t like the new door – or maybe I can’t even find the new door.orchard 041

There was a time, when I was younger, when I had dreams of doors I believed I could enter, like being a research assistant at the Institute of Social Research at the University of Michigan. I had doctoral faculty who worked there and published books there. Wow, how exciting. I also dreamed of studying and living abroad; I knew where those doors were and knew I could enter if only…  I knew I could enter if I didn’t mind leaving children and husband – I knew a woman who left children with her ex to live in India for a year. The problem was that I didn’t want to burden my children with the pain of missing me, I didn’t want to miss a year of their growth, and I didn’t want my husband to become my ex. But I knew these doors could be open to me – and that was enough. The doors didn’t feel closed, I just didn’t want to pay the price of entry.

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As I’ve gotten older, I have found that there are doors that are shut – closed – bricked up forever. I am coming to terms with the paths not taken, the doors left closed, the doors that never were an option. Most often now I have to come to terms with the doors that have closed permanently with other doors not evident.

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Currently my closed doors are because of physical changes that come with getting older and with having a chronic illness. Too often I have observed doors being held shut for those who wanted to enter, because of hatred, prejudice, limiting of resources. This makes me angry. I want to live in a world where everyone has a chance. I used to think that I could open doors of opportunity for the poor and downtrodden. I really wanted to, but I learned that this type of systemic change is very difficult. I feel good about what I was able to do – making it possible for people who have daytime responsibilities or live in remote parts of Michigan to get a social work degree. They really appreciated having this door opened for them. I feel confident that these people, with their increased knowledge and skills, will work on my dream of making the world more just and opening doors for others.

A normal part of the aging process is a decrease in energy. I knew this from my study of human development. What surprises me is how much the combination of aging and chronic fatigue has shrunk my world. Even when doors are open, when people give me wonderful opportunities to be involved, I usually have to say no. When I am in my home community in Michigan I feel guilty that I’m not doing things. I can give up that guilt because I think I hear God telling me to live with joy. When I am in other places I feel frustrated that I can’t do more – but maybe I can enjoy what is possible. I think I will switch on some joy and fix some supper for my love and me.

My personal faith has been an important part of my life meaning for a very long time. From this faith perspective, the doors that were opened to me along the way felt like being called by God to do his work. I don’t think I’ve ever heard of anyone speak of God terminating a calling. My chronic pain and fatigue closed oh so many doors that allowed me to do God’s work and I still feel lost. Am I not hearing God’s new calling, am I dense, am I too stubborn and bull headed to accept what is open to me? I enjoyed having the big doors open for doing big things; can I be happy with the small doors?

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