“Watch your thoughts; they become words. Watch your words; they become actions. Watch your actions; they become habit. Watch your habits; they become character. Watch your character; it becomes your destiny.”― Lao Tzu
I’ve begun writing another chapter in my life. Perhaps this chapter ought to be called “Sticktoitiveness”. Why? Well, I like the sound of the word, it makes me smile, and…
It’s one of those many things that you may have had to cast aside, in one way or another, as you learned how to live with a chronic illness, such as fibromyalgia. It’s also something that, in my opinion, you should never cast aside when you are living with a chronic illness, such as fibromyalgia.
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The 3 Ds
Living with a chronic illness, means living with constant internal and external changes. The changes you undergo will create havoc in self-perception/self-image, in relationships, in goal-setting, in employment, in pacing achievements, and in even cooking pasta (I threw that in just to make sure that you were still paying attention). 😉
In other words, having a chronic illness can mean taking life moment by moment and doing your best to prepare for whatever shifts occur–it’s not an easy task.
I’ve done my share of explaining and lamenting the challenges of having fibromyalgia, so that’s not what this post is about. If you’re interested in learning the depths of the difficulties, however, you can look in my archives.
This post is about why you, both people who are living with a chronic illness and those who are a part of their lives, must accept and live by the 3 Ds.
What are the 3 Ds? No, this isn’t about multiple third dimension. This is about accepting: disappointments, decisions, and determination.
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Disappointments, Decisions & Determination
The reality is that, when you are living with a chronic illness, you will face setbacks more often than not. They are a part of the package. They are also the first D, i.e., disappointments.
You will experience disappointments like never before… Seriously.
Especially, if you attained the status of ‘responsible adult’, then disappointments (particularly in yourself) will begin to take on a whole new meaning, because others may be dependent upon your well-being for their survival.
Decisions are an everyday part of life, and are the second D.
Decisions, when you have a chronic illness, can no longer be a straightforward and static process. Why? Because decisions can never really be wholly independent from your (unknowable) physical status.
This leaves the third D, and the most important, determination,
If nothing else, I have come to understand that you must remain determined in seeing your goals through to the end, whatever they are and regardless of your chronic illness.
Yes, having a chronic illness can drag you down, cause you to despair, and generally make living feel less than worthwhile I am not denying that. Certainly, too, there are goals that may need to be altered or even utterly discarded.
Still, I am stating that if you focus on your goals with “dogged perseverance” or “resolute tenacity”, in other words sticktoitiveness, then your goals can serve as a way out of the darker aspects of having a chronic illness.
No matter what, stick to accomplishing whatever goals make your life have meaning, make you happy, and make you feel sane when everything else about you feels less than so.
“One of the biggest challenges facing many people with fibromyalgia is — wait — what was I going to say?
Short-term memory problems can be embarrassing, frightening, and even dangerous for people with fibromyalgia. One community member asks for help as she’s noticed her memory deteriorating. “I have had two experiences in the last week where I couldn’t remember what the inside of my house looks like!” she laments.
A chorus of replies quickly tells her that she’s not alone…”
“The Buddha said that we are never separated from enlightenment. Even at the times we feel most stuck, we are never alienated from the awakened state. This is a revolutionary assertion. Even ordinary people like us with hang-ups and confusion have this mind of enlightenment called bodhichitta. The openness and warmth of bodhichitta is in fact our true nature and condition. Even when our neurosis feels far more basic than our wisdom, even when we’re feeling most confused and hopeless, bodhichitta—like the open sky—is always here, undiminished by the clouds that temporarily cover it.” – Pema Chödrön, from The Pocket Pema Chödrön
This quote by Pema Chödrön resonated with me today and I hope it will do the same for you.
Also, I wanted to share with you links to the two books that are most dear to me and they are both by Pema Chödrön: When Things Fall Apart and The Places That Scare You. Both of these books remind me of my place in the universe and how to take each step forward even when my path is seemingly covered by impenetrable darkness.
There are, have been, and will be moments in our lives when it seems that nothing is going as we had hoped, when we feel our hands are bound by some unknown and unseen force, when we despair of our existence and our present feels profoundly heavier than both our past and imagined future. Even in these moments, we must maintain our faith in the concept of limitless possibilities and probabilities, in our ability to shift our thinking and thereby shift our emotional space.
In essence, we can change our reality…one step at a time. After all, no matter the duration of our winter, there will always be a spring.
So, let’s keep our chins up and eyes forward while trusting in our abilities to make it through every single day until we arrive to the places, in which we aspire to be.
Perhaps, like me, with the start of a new year, you begin going through a list of stuff that you “should” or “shouldn’t” do. For example, I should clear out the clutter of random and unnecessary papers that have been occupying my bookshelf for the most part of the last year; or I shouldn’t spend so much time online looking at the random and unnecessary aspects of online life.
Well, I think you get my meaning. Either way, the start of a new year, oftentimes, means a break with the old and an incorporation of the new.
So, what have I decided to keep or to let go this year?
First, I decided to keep my spirits up. 🙂 How? By continuing the new part of self-care journey that I started towards the end of 2013. That is, I am going to continue to work on achieving holistic self-balance.
Why? Because I realize that I have a tendency to abandon my self-care when something or someone “more important” comes along. As therapist, I know that this is a big no-no. Still, in my personal life, it has not always been easy to practice what I preach. Thus, it leads to my second decision.
I have decided to let go of the bait(s). Nope, really, I won’t take them, no matter the form. Not interested. Zero percent, nada, niente, zip, zilch. None of it!
Now, you might be wondering what I mean by bait. It’s very simple: it’s anything that depletes you emotionally, physically (in a negative way), mentally, or spiritually. So, how can you spot it? Well, here are four examples:
Always being a “yes” or people-pleasing person. Think about it. Are you the type of person, who when asked to do x, y, and/or z, you immediately say “yes”?
“Under Pressure” photography by Dolores Juhas, 2008. Copyright (c) Dolores Juhas. All Rights Reserved.
If so, STOP…or, at the very least, decrease that action. Why?
Well, I like putting it this way: if you are saying “yes” to someone, then you are, oftentimes, saying “no” to yourself. And just why would you do that? So, the next time someone calls you up and asks you to sit through a 10 hour back-to-back special of a watching grass grow nature show just say “no”…unless you are into that sort of thing.
Always being a “fixer”. Yes, really. Do people (friends/family/acquaintances/random strangers) like to come to you with their problems? And if they do, does your mind transform into a Mr. or Ms. Fix-It mentality.
“Zed” photography by Dolores Juhas, 2008. Copyright (c) Dolores Juhas. All Rights Reserved.
If so, STOP…or, at the very least, decrease that action. Why?
Because the reality is listening might just be what that person is seeking, rather than your intervention. Or better still, ask yourself this question: Do you have the emotional space to manage listening/dealing with someone else’s issues?
If the answer is “no”, politely back up and say, “You know, I am really sorry to hear about that, but I am not in the best (emotional/mental/physical) space to listen/discuss that with you.”
It may seem callous. It isn’t. The reality is that there are times when things are beyond our capabilities to manage them, and it is better that we acknowledge or limitations rather than jumping blindly into fixing someone else’s life (before they ask), especially when we have our own lives to manage.
Always being “right” or coming out on top.You know what I mean. 😉 Were you ever in the debate club in high school or really enjoy being contrary just for the heck of it…or rather for the thrill of being “right” in the end?
“The Revenge of Pride,” photography by Dolores Juhas (2010). Copyright (c) Dolores Juhas. All Rights Reserved.
If so, STOP…or, at the very least, decrease that action. Why?
Do you have any idea of how much mental and emotional energy (read: capital) goes into making an argument? Seriously, picture it!
Now, imagine using all of that energy to plan your future rather than arguing over whether something is black or white. Find the grey already and move on with your life already!
Always being the “victim” or “martyr”.It happens to all of us at some point in our lives. You look around you and your life feels empty and desolate. Or perhaps you are in a relationship or job that is sucking the very life out of you. Do you find yourself looking at your life and asking yourself or anyone available questions like “why me?” or “why does my life have to go this way?” Seriously?
If so, STOP…or, at the very least, decrease that action. Why?
Because it is time for a reality check. Yes, your life may not be what you want it to be in the moment. But you know what? Asking those types of questions won’t get you out of the place you are in!
Instead, challenge yourself to pick up the phone and call for professional help if necessary (therapist and/or life coach). If you believe that you don’t need that, then grab a planner and start writing down the ways in which you are in control of your life…and then what steps you would like to take next.
So, that’s my start for the New Year: taking care of myself and not taking the bait. After all, it is when you are most true to yourself that you can be most authentically available to everyone else.
Also, please, remember that you are never alone. Someone out there is walking a similar path or has walked it. Someone out there is willing and available to help you. You simply have to want it and reach out to accept it.
Until Next Time,
D.
Self-portrait by Dolores Juhas. Copyright (c) Dolores Juhas. All Rights Reserved.
Photographs are by Croatian photographer, Dolores Juhas, whose work has been featured in such magazines as Italian Vogue.
Work-in-progress, started November 3,2011, acrylic
These words by Nina Ellis-Hervey were important for me to hear today, especially as I have been dealing with managing my body and my illness. Sometimes I do feel like giving up and feel like I am alone in my struggle to reclaim my life from the grips of my illness.
Although Nina’s words are geared towards those struggling with weight issues, I believe that they are powerful word useful for all people who may be struggling with any illness, physically or mentally, that may cause daily struggle with your body.
—-
“…I am living life day by day and trying to do everything that way…I am trying to keep in touch with family, with my friends… I have a million and one stressors in my life. And in the past, those stressors made me eat, made me gain weight.
And so now you can see how all that stress could cause me want to want to relapse, to go back to not working out, to go back to not taking care of myself. But that’s not an option. It’s not an option anymore…
It doesn’t matter what excuse you have. You only have one life. You only have one body. And nobody can take care of it, but you. Nobody is going to be responsible for it, but you. And so for me, everyday is a struggle… The battle never ends. This is for the rest of my life.
For the rest of my life, I am going to have to think about where I came from and where I don’t want to go back to. For the rest of my life, I am going to have to think about the foods I put in my body…
I have to always think ahead…I have always prepare myself…and unfortunately, it is a repercussion of my past…and not wanting to go back there…not wanting to even ever let myself go like in the past. I will never do that again.
I owe this to me…You owe it to yourself… It gets to a point that you cannot even listen to outside people. What they have to say is irrelevant…
Your journey is your own…It is not just happy-go-lucky every day for me. I am not just kicking the breeze and skipping through the flowers and the grass.
Some days are hard for me. But when I get back in it, I remember what I am in it for. Adjusting to the new you, it is rough. Everybody is going to grieve the old you…
Anything you do carries. It carries some kind of baggage behind it. I can choose to look as my baggage as negative, or I can choose to let it motivate me to try and to at least do my best…”
—–
Below is the video of Nina. Again, it is dealing with her own struggles regarding weight. So, watch it if you feel it is relevant to you. In any case, the over all message is a possitive one.
The other day my sister, Michelle, posted the following to my Facebook page:
“Why are you skinny people doing this to yourselves??? I thought insanity was designed for overweight individuals???”
As you might imagine, the “insanity” to which she referred is the Insanity Workoutexercise program by Beachbody and led by Shaun T. Nine days ago, I decided to take the 8 week challenge and have been reporting my progress to friends and family via Facebook. I am happy to say that I have completed each day thus far and intend to continue so doing.
Now, back to my sister’s comment.
You see, she is right. I am not overweight and thus it would seem that I would have no just cause to take on such a workout program. Right?
FIBROMYALGIA (Photo credit: *SHESHELL*)
Wrong.
I decided to take on the Insanity Challenge, because I wanted to prove two points to myself:
1. I can achieve a high level of fitness as a person with fibromyalgia; and
2. I can take care of my body as I choose to without fearing input from others.
——
A world of secrets…
Back in 2008 when I was first diagnosed with fibromyalgia, my body had been changing rapidly. As I wrote in my recent posts, I had gain a significant amount of weight in only a couple of years. You see, before I started graduate school, I worked as a personal trainer and fitness instructor from 2002 to 2004. That period of my life was one in which I experienced a high boost to my body image. I was strong and healthy.
My weight then was higher than what it is now, but it was never a concern to me. My major concerns: strength and endurance. And if there is one thing that I have lamented greatly since having fibromyalgia was the loss of my physical strength and endurance.
With my weight gain came real health concerns, such as being warned about my blood pressure and having some other health issues being labeled as “due to excess weight.”
“If you had 5 minutes…,” collage with magazine and cardstock by Diedré M. Blake, (2010)
It was frustrating to find myself in that state and feeling that I couldn’t do anything physically about it…like exercise in the way that I had in the past. I was too tired. I felt too much pain. There was a bigger issue though…
Work.
As many of you know, I am an art therapist and counselor. I specialize in the treatment of eating disorders. This area of specialization developed from my second year internship and subsequent job. So, why would working within this area create a problem for me? Simply this…
How does a therapist embark upon a health improvement that would mean significant weight loss while reinforcing to her clients that their desire to lose weight was unhealthy?
For a long time, I did not have an answer. I worked in a place where there were strict rules on how food could be discussed and what foods could be eaten. Discussion of weight loss, weight loss programs, and diets was forbidden. This is not to say that these rules were always followed.
Also, there seems to be a very strange expectation, i.e. that all Black women are happy with being overweight. I write this because of various experiences I had while trying to manage my weight issues. The most memorable of these was an experience I had with an older White female nutritionist who worked at a local hospital.
I was given a referral to visit this nutritionist because both myself and my doctor believed that it would be good for me to have professional advice on how to safely and slowly lose my excess weight through diet, since exercise was proving difficult for me. At that time I was about 50 pounds overweight.
I sat with the lady and stated my reasons for coming to see her. From her lips came the following response:
“But you’re Black! Why would you want to lose weight? Aren’t all Black women a bit fatter that everyone else? Aren’t you people use to being like that?”
Now, some may believe that I am exaggerating…but I kid you not. Those were her exact words that are engraved upon my heart and mind. I was in disbelief.
There I was seeking help to lose the weight that was causing me severe health problems…and there was that lady telling me that I didn’t need to lose the weight because of my skin colour. Huh?
——
So, I realized that I had to do it on my own. I decided to take matters into my own hands as I wrote in my previous post. The thing was that at work, although I had explained to some that I was planning to lose weight, there was apparently discomfort that I had made such a choice.
Moreover, I did not discuss just how much weight I intended to lose, because that was no one else’s business except for me and my doctor. Looking back, perhaps it would have been better if I had simply stated a number, even though I did not have a number in mind.
The world in which I worked during that time became closed. I watched as people stared at me with curious and suspicious eyes. I listened as people made side comments about me. I answered as people kept asking me, “haven’t you lost enough now?” or “why are you still losing weight?”
And then there were the painful rumours regarding eating disorders and even my sexuality. It was a truly discouraging time. I often felt alone; and between having fibromyalgia and being the only Black clinician on staff as well as the only art therapist, I often felt misunderstood.
My studio space became a place of refuge during the last year of my weight loss. I watched as people, who were once willing to speak with me or were friendly with me, stop interacting with me. And, in all honesty, the decision to move to Italy came at the right time as who I had been no longer was. The new person did not fit in with my old world.
So, why have I written about this or about anything else?
Because it was time. Especially as a counselor specializing in eating disorders. You see, even counselors are human. 😉 Even we struggle with our bodies, including food concerns, weight and body image.
It is a strange paradox about the world of psychology. As a counselor you are expected to help others in overcoming their problems. At the same time, however, it is seemingly frowned upon by peers if you have problems of your own.
This Cold Hard Floor: II, watercolour and ink painting by Diedré M. Blake, 2006
some of us feel that there is a need to be invincible. That there is a need to hide what hurts us, to hide our struggles, to hide our true selves. We walk about attempting to be the tabula rasa (blank slate) for everyone, including our peers…and it just doesn’t work.
There is a reason why…
many of us, who were once bright and shining candles, finally burnout.
There is always a reason why…
I write about this, as well as the previous blog post, to write the truth about a topic for which I held tremendous fear: my weight loss.
I write because I believe that it is the job a therapist to be human and to show his or her client that there is always a path to be found out of the difficulties of life, not just via book lessons but through setting the example by how we live our own lives and how we take care of ourselves.
Every now and again, I pick up Pema Chodron‘s book, The Places that Scare You, and read a chapter or two. Today, I turned to chapter twenty-two “The In-Between State,” which seems to aptly describe my present state of being. She writes that “[a]nxiety, heartbreak, and tenderness mark the in-between state. It’s the kind of place we usually want to avoid.”
Found via Google Images
She also explains that, in this state, one has already begun to reject those things, in which one once found pleasure. That is, in this in-between state, one begins to understand that the suffering that is being experienced is far greater than any pleasurable acts that one might have relied upon in the past to quell one’s fears.
Thus, what can one do in confronting such a state of being? Chrodon states that the answer lies in being able to stay in the middle. Specifically, she writes, “By not knowing, not hoping to know, and not acting like we know what’s happening, we begin to access our inner strength.”
The task, then, is to hold oneself in abeyance, even if the world seems to be demanding that a decision be made, or a step be taken. It is in standing still that allows one the opportunity to hear, with clarity, the inherent wisdom within. It is a wisdom that understands that there need not be judgements of good or bad, right or wrong, etc.
So, how am I handling my in-between state? Well, I am silently facing my many internal selves, and that are asking me to choose a direction–I am learning to sit with their uncertainties, their fears…my uncertainties, my fears… Until next time,D.
The invitations have already been sent. The preparations have already been made. Nevermind why you have been chosen. Nevermind why you cannot refuse. Fibromyalgia welcomes you…and asks you
“How shall you live this life?”
The house into which you have been welcomed provides an entrance but no exit. The walls upon which you now stare are absent of windows. There are stairs placed here and there, but that lead nowhere.
And still the question lingers,
“How shall you live this life?”
The daytime brings some light but never enough to provide sight. The nighttime brings the descent into the darkest parts of your being. There is limited sight. And what cannot be seen must be felt.
Now the words come to your mind once again,
“How shall you live this life?”
Through the cold and the warmth of passing seasons, you use what provisions you have brought with you. Through the cold and warmth of passing reason, you understand that these provisions are increasingly dwindling.
Seasons (Photo credit: *~Dawn~*)
Yet still, the demand persists,
“How shall you live this life?”
There are times when you hear knocking at doors that you can neither see, much less open. There are times when a ray of sunlight shines through the cracks of the wall, reminding you that there is something more than this experience.
27/365: fractured reality/grace under pain
(Photo credit: Samie Harding)
There are times when you cannot sleep. There are times when you cannot eat. There are times when you cannot move. There are times when you cannot remember. There are times when you simply cannot… anything.
Then suddenly everything changes one morning. You open your eyes to see that you have never left all that you once thought lost. You open your mind to feelings of hope and joy. You open your arms to embrace family and friends. You open yourself to experiencing life at its fullest.
Black (Photo credit: Wikipedia)
Then suddenly everything changes one morning. You open your eyes to see nothing but the all-consuming darkness. You close your mind to feelings of hope and joy. You open your arms, only to close them around disconnection and doubt. You are closed to experiencing your life as you have known it. Thus…
By understanding that even in the darkness and emptiness of fibromyalgia, you can still find the tools to help you in reconstructing the house in which you now find yourself.
The reality is that no one can save you from fibromyalgia. No one can fix this house for you. No one else can live your life for you. There is no running away. There is no mental escape. There is only the fact that…
only you can make a home for yourself out of this house of fibromyaglia. And even the act of simply choosing to do so is the first step to finding the door.
Make this house of fibromyalgia your next Do-It-Yourself project, and have fun with it! Imagine what would make this house a home for you.
“Tu sei debole,” my Italian professor says pointedly to me. “Io sono forte. Quindi io vinco e tu perdi.”
It is a discussion on verismo and positivismo–the idea that we are what we are until we die and that there is nothing we can do to change it.
Debole…
Fibromyalgia is the body that will not rise, even when the mind commands it; the mind that will not rest, even when the body requires it; the emotions that rage; the emotions that calm–the pendulum of the self that swings wildly with the change of the weather…the change of the seasons.
Forte…
Fibromyalgia is the body that overcomes pain, even when the mind surrenders to it; the mind that overcomes suffering, even when the body submits to it; the thoughts that beseech; the thoughts that concede–the pendulum of the self that settles slowly with the transformation of self-perception…the formation of self-acceptance.
Write…
“I am a person who has a chronic illness,” I say to myself and others. “Fibromyalgia and I are not one and the same.”
My professor is staring at me. He can see that my movements are slow. I am in pain. It takes me a long time to rise from my seat, to pick up my books, to pick up my coat, to put my bag on my shoulders. It is not a good day. There have not been many good days since late autumn.
“Is it always like this?”
Shamefacedly, I raise my eyes to meet his. “Often enough these days.”
I have no excuses. I have learnt well enough by now that people will judge you as they will–but he isn’t judging me–and if the judgement is harsh, then you can only apologise for having disappointed–but he isn’t disappointed in me–and move on.
“Have you ever written about it?”
Found via Google Images
“I have tried in the past.” The question is not unfamiliar. Indeed, it was only a little over a year ago that another professor from the Creative Writing Program made the same inquiry. “I decided to take some space from it.”
It is momentary, the dance of excitement that control his features before coming to an abrupt halt. Here is an opportunity. I know it is an opportunity.
My mind already understands the words that have yet to be spoken to me. My mind has already resolved itself to the task that is to be required of me. My body feels heavier than before, the skin and flesh of my chest press too much against the bones that encase my lungs. My body feels more alive than before, my shoulders and my head are relieved of some invisible burden.
“Whenever you cannot be here,” he says before continuing to gather his things. “I want you to write about it. Write about your fibromyalgia.”
In this moment, he is teaching me something I had once learnt, seemingly long ago. He is teaching me that self-acceptance is a dynamic process that evolves from self-confrontation.
It is time once again to look in the mirror.
——
Thank you again to those of you who continued to visit my blog even though I have not posted in some time. More recently, I have been struggling with my FMS symptoms and have had to prioritize the tasks I needed to accomplish during each day. As such my writing fell temporarily to the wayside. I have decided to dedicate my blog writing to dealing with topics related to FMS until the end of May (which is the FMS Awareness month), including reviewing books as well as activities/tools that have helped and are helping me in my process.
Toward the within... 