Use of “Graceful Agony” Title

In 2009, I embarked on a journey of sharing my health struggles through the creation of my blog, “Graceful Agony.” This title, and all that it represents were coined by me, and encapsulated the essence of my life’s journey as well as the profound love and passion I have for helping others while living as gracefully as possible. I learned very quickly I wasn’t alone! My blog VERY quickly grew into something much MUCH bigger than myself, and Graceful Agony took on a life of its own. It became a Facebook support group, community, network, am outlet for volunteer advocacy, and way of life.
Over the years, this community has grown into a family, forming bonds that extend FAR beyond the digital realm. That has been the truest gift in this journey.
Recently, I discovered that a member of the Chronic Illness community has not only appropriated the name “Graceful Agony” but has also self-published a book under this title, with plans for a series. Unfortunately, this is not a mere coincidence. This individual knows my whereabouts, and intentionally used my blog ( and OUR) cherished community name. I am utterly and completely heartbroken, and angered by this act, as it entirely goes ENTIRELY against the spirit of love and support that the chronic illness and chronic pain community embodies. This person is advertising herself as THE author of Graceful Agony, which is not only heartbreaking, it is not exactly the whole truth.
I need to take a stand. This is EXCEPTIONALLY wrong.
Since it’s inception, I have owned the written works of Graceful Agony, the blog, email address, Instagram Page, Twitter (X) handle, The Pinterest handle, the Facebook Group, and the Facebook Community page .. I also own the Youtube handle, Vimeo, Snapchat, Spotify podcast handle, among others. Please fact check this, I beg you. Do your own homework.
I kindly ask for your support in spreading the word that I am not affiliated or associated with her self-published works. Her words and beliefs do not reflect my own, and I disapprove of her using this name. I hope we can stand united against such actions and uphold the true meaning of “Graceful Agony”, as this truely isn’t it.
Please reach out to me. I would like the opportunity to prove everything I have mentioned.

As always, much gratitude and love.

The creator of Graceful Agony,

Jolene xoxoxo

#gracefulagony

P.S.  I am only responsible for my own opinions, and not those of others.  I have purposely not mentioned the author’s name, or her full book title, and I will continue not to do so. 

The Beginning of Graceful Agony

I remember the day like it was yesterday. It was the very end of 2009. The Christmas decorations were up all over the house. The lights on the tree were sparkling on that cold winter day. My son was building his new lego set on the floor in the living room, thanks to Santa. My husband was in a post-Christmas coma in the recliner. I think I probably had a cup of coffee in front of me. I always do.
I would like to think it was a happy and festive time, However, after years of struggling with my health, I was at the absolute pinnacle of frustration.

And I was feeling very very alone.

Now, to backtrack a little, I have always been a writer. I remember getting a Smith Corona typewriter for Christmas when I was 14 years old. And for the sake of sounding entirely too dramatic, that typewriter forever altered my path. Writing very quickly became a passion, an outlet, a form of expression,.and an integral part of who I was then, and who I am now.. I spent a lifetime, locked in my room, clicking and clacking, and escaping, and creating. Anyways, I digress…

So here I am, in my living room, it is 2009. Christmas has always been my most favorite time of the year. But I was at a total loss… I was feeling invisible, frustrated, nisunderstood, alone, let down by the medical system, and really angry. And I didn’t know what to do about it. I called my mom and dad and was venting my hit-the-wall sort of frustration. And my mom simply said, in her infinite wisdom ‘Joey, you need to start writing again’.
And the seed was planted…..

And it changed everything, for me. Literally, everything.

I know what I am going to do, and where I am going to pour all of these things out, once I take the cork out of the bottle (my bottle was ready to explode). I’m going to start a blog! Who knows if anyone will read it, but that doesn’t really matter, does it?

That night, I shared my idea with my husband and son, and immediately they were on board. My son, who was 8 years old at the time asked me if I knew what I would name my blog. I hadn’t really thought that far…. Oh god, yes, I guess I need a name!

It felt as important to me as naming my child. It was personal, and permanent, and the decision wasn’t to be taken lightly. I thought long and hard about what kind of name would encapsulate this journey for me, who I was as a person, and what I wanted to share with the world (or the 3 people who I thought would likely read my posts LOL). It took days of constant soul searching, but when it hit, it HIT, and I connected with these two words in the deepest part of my soul.

Graceful. Agony.

Maybe people wouldn’t understand? Maybe it would be lost on those around me. But it made PERFECT sense to me. It was serendipitous when it finally came to me. IT was who I am, and who I will be. It was a name that represented all things BEFORE that day, and will represent all things AFTER that day. It was a name that would inspire me to evolve and grow.

Graceful Agony.

So I walked into 2010, knowing that I had a new project to work on, and a new found sense of passion amd commitment to myself. This was something that truely belonged to ME. This is something I WILL create, and develop. MY brain child. Graceful Agony… so, here we go!! Let’s see where this journey will lead!

I quickly had to figure out HOW to blog, and teach myself all the ins and out. I found a host. I quickly became both real and raw. And that was scary! But, I jumped in head-first, and posted for the first time in January of 2010.

I held my breath, leaping first and looking second in many ways, guided by the faith that I was exactly where I needed to be…

Stay tuned for Part 2.

#gracefulagony

HOPE hides everywhere

So, it has been a tough week…. it has been a tough few weeks. WHO am I kidding?!? It has been a really hard few years, if I am completely honest. That isn’t easy for me to say. I tend to be the ‘glass half full’ sort of gal. You generally won’t see me without a smile on my face, even when I am in agony. I work hard to make other people comfortable with my pain, even if that means I am more uncomfortable, myself. I try hard to push through everything the world throws in my direction. But this past year or so? Ya, no…. I have been REALLY struggling. I am not always wearing my happy pants. I have hit some really low lows. When, in my quietest moments, when I am brutally honest with myself, I am often scared of how bleak life looks for me right now.

It has been a TOUGH and exhausting few years.

I won’t go into the dreadfully boring details. But suffice to say, my family has gone through every type of stress possible. Death. Unemployment. Taxes. Sickness of loved ones. Finances. Health issues. Losing our home. Crisis. More health issues…. combined with wrapping my head around things that most people will only ever see in made-for-tv movies (I will get into that later, I promise). Without a break, the waves have kept rolling in, and it is all I can do to take a quick gasp for air before I am underwater, again and again,and again. It sounds awfully dramatic, but that is exactly the way it has felt. This has been my life for the past 2 years.

And it just doesn’t end. Or it hasn’t, quite yet…

I try hard not to be jaded. I promised myself many years go that I wouldn’t let the struggle harden me. But I’m human, and it is impossible somedays to NOT feel like I am giving up hope. It often feels like life will never be any better than it is right this second. There are moments lately, where I have just wanted to throw my hands in the air and through angry tears – just SURRENDER.

I GIVE UP! OKAY?! YOU’VE GOT ME! I SURRENDER! I concede to this unhappy, unhealthy, anxiety and pain-filled life! IS THAT WHAT YOU WANT TO HEAR?!? I. GIVE. UP.

Can anyone relate?

But wait….

As soon as I have felt myself give in lately , I have been met with small expressions of grace and hope. At first, I thought it was just a coincidence. But I am starting to realize that I am seeing these reminders of hope because my heart is still open to receiving them. No matter how cynical and angry I feel somedays, no matter how cheated I feel, no matter how alone I am with my pain, I see hope hidden everywhere. And THAT is not lost on me.

These small offerings the Universe keeps throwing at me have kept me going on days I felt like I couldn’t face the world. They have kept me going through some brutally hard and serious medication changes, And these signs often appear when I am in so much pain, I can barely breathe. It occurred to me last night that these moments have allowed me to create a safety net, so I don’t plummet when I fall. In my mind, I have woven a protective mesh made out of kindness of others, graceful interactions, and moments in time where I have felt unconditionally loved.

HOPE HIDES EVERYWHERE.

– To those who have left me messages on my Facebook wall – you make such a difference in my world.

– To those who have offered me a gentle hug – you make me feel worthy.

– When you smiled at me when I got up from my chair, your eyes told me you were proud of me for not giving up. You could see me wince, even though I thought I was hiding it well. But you let me save face in that moment. Our eyes met and I saw compassion, not pity.

– The thoughtful gifts that were left for me at work – they reminded me of how much I am loved and valued, as I am.

– The stickers that you thoughtfully picked out for me? Well, that small gesture wasn’t small at all. The phrases on those stickers reminded me that I am so much stronger than I realize, no matter how I feel in this moment.

– You, who called me Sweetie as I walked out of your office… You said SO much in that one word. I knew what you meant, and I felt it. That one endearing word really meant ‘I have your back, and I am rooting for you’.

– When you called me your best friend, it was your way of telling me that no matter how tough life gets, you are not going anywhere. I shouldn’t worry. You are my constant.

– You, who texts me almost every day to check in on me, just to ask me how I am feeling… It is because in that very moment when I am in your thoughts, I am the most important to you. And that means more than you will ever know.

– When you told me the podcast you are listening to, I smiled, because I know you are investing that time everyday, because you think it will help me somehow.

– And when you said you still thought I was a ‘cool mom’, what you actually meant was the last few months of pain haven’t changed how you see me, and my struggle with pain will never change that.

When I am filled with despair, and think I am right back to where I began, many years ago. I need to remind myself that this is not the case. I would have never stopped to take in all these moments of grace, and find HOPE in all of them. And THAT means something. Really, that means everything.

Just for today, with an open heart, look for signs of hope in your own life, and in your own journey.

HOPE hides in the tiniest of spaces. We just need to take the time to stop and look.

Hope truly does hide everywhere….

– Jolene xoxoxo

If you are looking for a community of others who are dealing with pain and illness, come follow my new Facebook page! Graceful Agony On Facebook

What you don’t let others see

I don’t know when I adopted this coping mechanism. I don’t know why. I am not sure whether it is because I am trying to protect those around me, or if it is something I do for myself. But lately, I am constantly reminded of it.

I don’t let a lot of people see all that is ME when I am in a lot of pain.

I wear a mask. I put myself together. I make sure my hair and makeup is done. I wear a smile. I try not to complain. I use my manners. And if I just cannot find the strength to do these things, I simply hide. I don’t answer my phone. I stay in bed. I want to be all alone with my pain.

I try not to outwardly show what is manifesting inside.

I do not let people see…

I have spent many years watching the impact my journey has had on those around me. The emotional component of that takes a toll. I have often said that it makes me feel like the perpetrator in all of this. Even though I have no control, it is hard for me to see what this does to others around me. Being in severe pain is an all-encompassing and helpless feeling. However, there is nothing more helpless than watching my husband BEG me through tears, to tell him what he can do to help, when there is nothing that ANYONE can do to help me in those moments.

It is hard to know that my parents worry, lose sleep, and cry tears over the pain I feel. Especially, when I am parent myself. I can only imagine what it would be like to watch my own child suffer the way I do. The thought is too much for me to bear.

I have watched people walk out of my life, because they just couldn’t handle the way my illness impacted my relationship with them. Yes, this happens far more than what most people realize. I cannot count the number of people who have walked out of my life in the last 15 years. People get tired of hearing about it. People don’t understand the phone calls that cannot be returned, the texts that go unanswered, the social gatherings that you cannot attend. They simply walk away. And it has left me questioning myself.

So I haven’t always let others see the hardest, ugliest, most raw, and vulnerable moments.

The logical part of me realizes that WE ALL build up our own walls to hide hard, ugly, raw, and vulnerable moments. But WHY? WHY do we spend so much time, energy and effort HIDING our humanness from everyone else, when they are just as human as we are? Do we live in such an Instagram, air brushed, filtered and unrealistic world that we are terrified of imperfection and we just cannot be REAL with one another?

So here I am, surrendering myself to vulnerability and judgment, by living out loud, no matter how ugly that feels sometimes , when I am struggling through illness and pain. I don’t have the answers, but I do know this – I don’t have the energy to keep hiding all the things that make up ME. I am not perfect. I struggle. I am not just my good days. I am not always happy. I am not always smiling. And I am not the only one who cries in the shower to protect the people I love from my tears.

Maybe, if we let people in, and have the courage to be ourselves in every moment, no matter what that looks like, we are giving others permission to do the same.

– Jolene xoxo

Alone

LONELY.

DEJECTED.

ISOLATED.

SECLUDED.

WITHDRAWN.

If you are in emotional or physical pain, you can relate to these feelings all too well. I know you can, because I can too. It seems to go with the territory. But does feeling lonely, in fact, mean you are alone?

Pain can be the greatest and most powerful isolator. In a room full of people, I can feel all by myself. There is something entirely disconnecting about being stuck inside your own pain bubble, when the people around you are going about living their lives. It can be paralyzingly. God, I have been there more times than I care to admit. It is like a time-lapse scene in a movie, where the main character is frozen still, standing on a sidewalk. Everyone is moving around them at rapid pace. The cars are all zipping by, people are hurried and dart around them, completely unaffected. The sun rises, arcs in the sky, and then sets – while they just –

Stand.

Invisibly.

Still.

But really that character is you, and this isn’t a movie. This is real life. And THAT is how it feels.

It doesn’t seem to matter if the pain is physical in nature, or emotional – it feels the same. I can be having a really bad pain flare or a high-octane bout of anxiety, but the result is the same. I feel alone. I feel like life goes on without me. I feel invisible.

But this is something I know for sure, after many years of this struggle.

I AM NOT ALONE. No matter how lonely I can feel.

THIS FEELING PASSES, even if I feel like time stands still.

I AM NOT MY PAIN, even when every cell in my entire being feels it. I am so much more than what I am feeling, in that moment. WHAT I feel is NOT who I am. And I often need to remind myself of that.

ALONE AND LONELY MEAN TWO DIFFERENT THINGS.

While pain can be lonely, I am far from alone. If you are reading this, that means you aren’t alone either. We have each other. And one by one, we can build a community of understanding and compassion, if we just have the courage to open ourselves up to those around us, and let them in. We are so much more alike than we realize. We are so much MORE human than we think. And we have SO more that connects us than divides us, if we just find the strength to be vulnerable with others.

If time stands still for you today, please know, there is ALWAYS, always someone who is willing to slow down and wait…

I tried. I really did…

I tried. Oh god, I really tried. I went into work yesterday.

I work as a Legal Assistant, and my health has greatly affected my ability to work the past few months. It’s been really very embarrassing to me. I went from working 4 or 5 afternoons a week for the last couple of years, to taking 5 straight weeks off of work, to now – I am only able to work one afternoon a week.

I give 100%. And I will be the first to admit that my 100% can look very different from day to day, depending on how I’m feeling. I know I am not perfect. I make mistakes. I have limitations. Regardless of all of that, I take a lot of pride in what I do. And I will tell you why.

I couldn’t work for 17 years of my life. Most of that time I was either Completely bed bound or house bound. I said goodbye to the possibility of post-secondary schooling and ever having a career. My pain didn’t allow me to think too far from my own 4 walls. And I can tell you, being at home for 17 years, by circumstance and not by choice, wasn’t easy. In fact, it was one of the hardest parts of all of this, for me. I wanted so much more for my life, but could never see how that would ever happen. I had plans of getting my degree in Psychology. I wanted a career in serving and helping others. Especially those who don’t have the tools to necessarily help themselves. But after one semester of post-secondary schooling at Athabasca University, I dropped out, and buried the dreams I had for myself.

Fast forward to 3 or so years ago, quite by chance, I met a gal who, at the very moment we said hello, I KNEW she was someone I was connected with. I can’t say for sure WHY or HOW I felt that way. But it was undeniably kismet. Or serendipity. Or something inexplicably purposeful. Anyways, we became friends, and I often thought that my meeting her wasn’t just a coincidence. She was someone I shared my health struggles with, right away. And her response was the biggest and most loving hug I’ve just about ever had.

I was in a position where I needed to work. My family had run into some tough times, financially. The THOUGHT of trying to look for a job with a 17 year GAP on my resume was TERRIFYING. I had no idea where to start, so I reached out to this friend and asked if she would consider writing me a letter of reference. She was someone I admired greatly, and my hopes was that a letter from her might help me find a job, any job! Fast food, retail, grocery store, maybe a clerical position – I would have taken anything in that moment. I just really needed to be working.

Her response?

‘ You know my husband is a lawyer, right? I was just thinking about you. We need some help in the office. Would you consider coming in for an interview?’

EXCUSE ME?!? ARE YOU SERIOUS? You are looking for a Legal Assistant?! And you thought of ME? You want ME to come in for an interview?!?

In that moment, my pain spoke, and spoke LOUDLY. It told me that this was way too good to be true. It told me that there’s no way I could handle working in a law office. Pain told me that I was not good enough, or smart enough, and I should really just politely decline. However, my heart told me YES, JOEY DO IT!! Do. It. You will never know until you try!!!

The interview was brief. And I started immediately. In that moment, my friend and her husband took a chance on this sick and complicated girl, and entirely changed my life. It has been 2 years, and I have never looked back.

My ‘boss’ and his wife have become family to me. We lovingly call them Papa and Mama ‘T’ at the office. They very much understand that my health comes first, and without them, there is no way I would be still be working. They have been extremely patient, loving, and incredibly supportive. And I’d be lost without them! I really do know how lucky I am, believe me. I thank the Universe daily. And I try to remind them often of how grateful I am for their patience, understanding, and unconditional love. Although, I don’t know if they will ever truly know just how much they mean to me. It’s hard to find a card at Hallmark that says, ‘Hey thanks for taking a chance on me and putting up with my pain and illness, and for always letting me take care of my health first, while teaching me to become someone I always ALWAYS wanted to be, and allowing me to be a part of helping and serving others so I can feel like I am making a difference in this world, and at the same time, loving me fiercely, standing by me, and adopting me as your own’. Whew! Ya. I looked for that card. It doesn’t exist.

Well, as I said, I went into work yesterday. And quickly, I was in tears. It’s been a really rough few months. My pain has been out of control. I haven’t been able to sleep. But I tried. And it didn’t work. So I went home and spent the rest of the day in bed. I had to force myself to listen to what my body needs. Some days, I just cannot push through, no matter how hard I try. And even though I hate it. That’s the way it is.

But do you know what?

Today is a new day. And I am determined to try again. So I am headed back in to the office. I need a do-over of yesterday to prove to MYSELF that it is possible to keep going. It is okay to falter. But it isn’t okay to quit. So off to work I go! I’ll try my best. And that ‘best’ might look different than it did yesterday, or last week, or last month. But it’s all I have to give.

And I will.

Are YOU on Facebook?!

If you are in Facebook, I have started a new Facebook page for this community!!! And I have some cool things in store!!

Articles, live videos, Q&A sessions, check ins, fun ways to cope when you’re feeling those pain flares, and so much more more!!!

Head over to www.facebook.com/gracefulagony and follow my page! Share with anyone you know who suffers from chronic illness or chronic pain! Or if you are someone who cares for someone who is dealing with these issues, you are invited too!

I can’t wait to see there! Please feel free to introduce yourself! I would love to meet you!!

Xoxo – Jolene

New Beginnings

I have been looking over old blog posts the past few days, and found this from 2011…

’It hit me like a tonne of bricks, and it wasn’t triggered or brought on by anything specific… it just came out of nowhere…I struggled to choke back my tears in an attempt to hide my overwhelming feelings from my honey. But, as always, it didn’t work, and quite shortly after he had kleenex in hand as I let out some tears on his shoulder…. He asked me what was wrong, and I couldn’t really give him a straight answer, other than I get really tired of all of this some days.. Gone are the days that I have any memory of what it is like to live a life without pain… and for the most part I have accepted that. It took me a LONG time and a lot of work to get to this point – but I do know the chances of me living without pain are slim. I have moved on from searching for a cure, and now try to focus on MANAGING the best I can with what I have been given… but some days it feels like what I have been given is a sentence of a life behind bars… only it isn’t iron and steel that keep me imprisoned, it is pain and medication.’

It made me think of how far I have come in the last 8 years, yet how I am still in the same place. I HAVE evolved and grown so much during this journey through illness and pain. And yet, like grief, the process is never actually complete. And in moments, I am back to exactly where I was so many years ago – on the couch, tears in my eyes.

I AM still really tired of all this, some days. And I am still beyond the point where I expect to live the rest of my life without this pain. Unfortunately, hope dies. Or rather, realism becomes a more solid foundation to continue building your life around. It becomes too painful to HOPE that this will be any different than it’s always been. Because it never really is any different. I just have periods of time where I cope better.

Some days this feels more like a sentence, and less like a life. And that just isn’t good enough for me. It feels like time wasted, life not lived, memories not made, and potential wasted – I am 45 now, and this is the only life I have to live. I keep saying it, but it is so true, I don’t want to live my life on pause.

So I am BACK. Graceful Agony is back. My desire to build a community of compassion, understanding, and growth has returned. I KNOW I am not alone. I know I can contribute to this world. I think my story may resonate with others. I, at least, want to try to give back what has been given to me. I believe, at our lowest moments, we are so much more than we realize.

So….. Keep your eye out for some new and exciting things from me! I may be several years in to this journey, but really this is only the beginning. I have barely scratched the surface.

Xoxoxoxo – Jolene

I Don’t Know

How are you?

Are you okay?

I honestly don’t know how to answer those questions anymore. They seem like such benign questions. Any self-respecting gal would answer “I’m good!”, “I’m great!”, “Busy, but I am doing okay”, or at the very least, the dreaded “I’M FINE”. You know people are generally NOT fine when they say they ARE fine, however it is the socially acceptable and less awkward way to end the conversation. Regardless, most people come up with a response pretty quickly… Don’t they?

Yet, I am entirely at a loss when I am asked how I am doing these days. AT A COMPLETE LOSS. The best I seem to come up with, is the truth. After awkwardly looking at the floor, and nervously biting my lip my answer lately has been…

I don’t really know how to answer that question?

It makes some people uncomfortable. And that makes me feel even worse. But the thing is, I am not a very good liar. And I respect people far too much to lie to their faces. So what is a gal to do?

Do I tell the truth, and tell them that in some moments, I am barely hanging on?

Do I tell them that it is all I can do to smile in that moment, when the nerve pain in my body is so horrific, it is almost bringing me to my knees?

Do I let them in on the shameful secret I have? The secret that my brain sometimes doesn’t work, and I go into neurological meltdown. Putting sentences together can sometimes feel as exhausting as running a marathon. How do I phrase that, exactly?!

Do I explain that it may look like I am really anxious, but in reality, my resting heart rate is up to 130 beats per minute, because that is what pain does. It triggers every system, and it sets off a fight or flight thunderstorm in my body. I have ABSOLUTELY no control over it. I am not trying to look socially awkward, but it is all I can do to just concentrate on my breath, and hope I make it through today.

Because it sometimes feels like I won’t make it through today. Today sometimes feels too big, too loud, too scary, too painful to conquer.

HOW do I answer when someone asks me if I am okay?

I don’t know….. THAT is the answer.

I

Don’t

Know.

Here I Go Again – 7 Years Later

Well Hello there…

Here I am. 7 years and almost 36,000 views later. Who Knew I would be back here, again?

I didn’t think I would be back in this place. Graceful Agony is all but a memory to most. Life changed. We all moved on, in one way or another. My son has grown up. I am 11 years into my relationship with Tim. We have moved. I started working, after 17 years of being at home. I tried to build a career for myself. And I was living. REALLY living. Really, really living…..

I was living fully, with, or despite, or because, or with my pain. I can never be too sure which. Maybe it was all of those things, depending on the day. But regardless, my life was really full of all things ‘normal’, for the first time in almost 20 years.

It was too good to be true.

Like a house of cards, I came crashing down, as pieces drifted slowly to the ground.

Here I am. Back where I was.

Life-stealing pain, Hello again.

Hello doctor’s appointments, and waiting lists, and specialists, and medical tests. Hello again to the question’s that remain unanswered, the tears that are held back, the anxiety that is stifled, and the anger that hides deep inside.

Hello to the girl that I thought I had said goodbye to. The girl who was forced to live life on pause, for so many years. I didn’t think I would see you again. And yet, here you are.

Here I am.

Feeling like I am back at square one.