It’s true what they say – pain changes you…irreparably and in ways you cannot even imagine.
There are now two sides of myself. The side that can no longer take a single moment more of the agony pain brings, the kind of pain that demands to be felt, that leaves you screaming inside… And then there is the side of me that knows this cannot be how my story ends!
You look at me and see the smile on my face, the smile that so easily hides the girl that’s inside – the girl who is hopeless, lost and completely broken down. On occasion, there are still moments where the old me surfaces…the overly determined and ambitious type-A personality I remember. The one with the deep need to prove myself, to push myself past my limits and achieve what people don’t believe me capable of. But I see her less and less.
Days fade and bleed into one another. Minutes begin to feel like hours, hours like days, days seem like weeks, and weeks feel like years…with only one remaining constant: pain.
They say a drop of water on a stone doesn’t do much, but a constant drip eventually erodes and changes the shape of the stone forever. And that is what pain has done to me. That’s part of what people don’t understand about chronic pain, is that it eats away at you day after day, month after month, year after never-ending year…until you begin to wonder if there will even be any piece of you left. Pain has stolen my life from me; it has ripped apart my dreams and ravaged my future. It has left a void that may never be filled. There has been so much loss! In my darker moments I am so ashamed. I feel useless, and I feel like a burden on those whom I love. These feelings will probably always remain for as long as pain is my constant companion.
But, do not forget – that is just one side of myself.
Pain, the constant drip that eroded the stone, also wore away parts of myself I am all too eager to leave behind: the parts of myself that put work before my family, that missed family vacations and get-togethers. Before chronic pain, I took so much for granted. I was too busy to enjoy the simple things in life, to see the incredible beauty of the world around me. Pain brought with it the realization of my stubbornness and selfishness. It also brought a kind of maturity (let’s say a good maturity as well as a good kind of immaturity also). It gave me immense patience, which was something I was severely lacking. It revealed an entire world I was blind to before, and gave me an observation of things I never before would have seen or noticed. It also made me more empathetic. It brought profound compassion and the ability to understand more of the struggles some people must face. It also increased the development of a pretty dark sense of humor, a ridiculous amount of sarcasm and made me a huge smart-ass, but I feel like those are probably stories for another time.
I think, as you get older, you must face certain realizations. You get to a point in your life where everything’s just different. Life changes dramatically and everything you once knew is over. I’m beginning to see it in the difficulties my grandparents are now facing. I never imagined being in my early 30s and comprehending many of the struggles they face: the pain, mobility issues, the isolation and boredom, the doctors and all the prescriptions, the similarities in watching TV most of the day… Hell, the only difference in my grandma’s social life and mine is she gets out once a week to see a movie, and I make it out each weekend to work instead.
My grandparents and I also face many different struggles. Some of theirs I don’t face and cannot come close to understanding, and some of mine they will never comprehend. They have started voicing how little time they may have left, and I see the sadness and even the fear in their eyes over this fact; yet I also see almost a kind of solemn acceptance in this fact as well – a way for their pain and struggles to finally end, which is definitely a feeling I know all too well. Yet the fear they have in death is the same one I have in life. They have known their extreme struggles only a short time, yet if I live to the age they are now, I will have spent 62 years in chronic pain! 62 years of ceaseless pain, 24/7, without even a single moment of reprieve! My chronic pain will be accumulative to nearly their entire adult life.
Life is a gamble. We all know this fact. Anything can happen at any given moment that alters your life forever. And unfortunately that’s just a part of this life. Now, don’t misinterpret what I am saying – I am blessed for this life that I’ve been given. I have a family that is far better than I have ever deserved. I have known so much love and have been so spoiled. But it doesn’t change the fact that I was also cursed with chronic pain. We all must face the light and the darkness in our lives, for we cannot truly appreciate one without the other. You will never hear me say that everything ahead of me will be bad, because it won’t. I will have beautiful, life-altering moments, moments of pure elation and serenity, moments spent completely and utterly awestruck by beauty and experiences of living life in the moment. But all of those beautifully breathtaking moments will now be shadowed by pain as well, for I can no longer experience one without the other.
In the beginning of this story I told you about how there are now two sides of myself. Yet, there are so many ways in which chronic pain has changed me and I feel the constant pulls from every direction. From the person I used to be, from the reality of what my life now holds, from the wish I have for my future, as well as so many more. Even though it feels like decades have spanned the mere six years I have struggled, I can still remember the girl I once was. It’s a struggle to be trapped – trapped between the accomplishments of my past and a future I wish for and envision so desperately for myself, but may never have come to pass. Pain has trapped me here, and it constantly reminds me of the realities I now face. And yes, I can push that reality, and I can fight the pain, but you see…I don’t win those battles. When the boundaries are pushed, I must face the harsh reality of pain, and ultimately I pay the price of this battle, which equates to an exhaustion and level of fatigue I didn’t even know possible, and yes, you guessed it, even more pain!
If I endure one simple day of pushing my body’s boundaries I can become almost completely bedridden. If I am lucky it only lasts days…but sometimes I am put into a flare that lasts weeks or even months. I know I am already mostly bed- and couch-ridden, but the extra push makes it so at times I am unable to even get up to shower, eat or nearly anything. You know, all those simple things healthy people take for granted. I push myself a lot, more than I know I should, and I can tell you that sometimes it is so worth it just to know I accomplished something. Other times the weight of this added exhaustion and pain is enough to completely smother me and leave me not only bedridden but struggling to simply keep breathing.
I would be lying if I said I didn’t sometimes spend days daydreaming and wondering what my life would have been like, envisioning what it could have held had I not been diagnosed with fibromyalgia, chronic fatigue syndrome and all the overlapping conditions that come with them. I envision that tomorrow, just maybe, I will wake up having the past six years merely being the worst, most vividly hellish nightmare of my life. And, if this were just a nightmare, what would I be waking up to? What would I have done from 25-31 if I had lived a normal, healthier life? Would I wake up to the sounds of my baby crying? Would I walk down the hall, and instead of seeing the guest bedroom and my husband’s “man cave” instead find my baby’s and toddler’s bedrooms? Would my boring and empty hallway instead be filled with framed photos of my own little family, of the life we have shared? Would we have spent tens of thousands of dollars traveling the world instead of paying all my medical bills? Would I have pursued my hobbies? Which career would I have chosen? Knowing me though, I probably couldn’t have picked just one. Would I have a salon built into my home like I’ve always wanted? Would I have gone back to school like I’m doing, but instead of finding a realistic work-from-home job, would I have followed my passions instead? Would I have pursued psychology, or would I have become a world traveler or nature photographer or marine biologist? Would my younger and slightly wilder side have prevailed? Would I still be doing things like four-wheeling, racing snowmobiles, being a little too crazy on jet-skis and snowboarding? Would I have finally made it skydiving? Would I be out in the desert racing cars like I always dreamed of, fast and furious style? In my younger years I was quite selfish, but I also wanted to help others. So I have to wonder, would I be making a difference of any kind? Would I be volunteering? It’s hard to imagine what living a full life might have looked like… To be a good wife, mother, daughter, sister and friend while also reaching my own dreams and living my life to the fullest. It’s hard to imagine actually living a life instead of simply surviving. There is a lot in my life I took for granted. I now take solace in the small things in life, the things I wouldn’t have even taken the time to notice or have appreciated before, and most importantly I greatly appreciate my family, and I can say with 100 percent certainty I would not be here today if not for them!
Slowly I am beginning to feel this fog lift over me. Especially this last year I have been in a very dark place. Simply going through the motions… You know what they say: fake it until you make it. My mom always said I should have been an actress, and she has no idea just how good I am. You know you have become a master when you can fool your own mother so easily, and you haven’t met my mother – with her intuitive skills I have debated if she is even human! But I only keep things to myself to protect my family, protect them from my pain and struggling, because that is one of the worst parts of it all. It’s hard to look into the eyes of the people you love and see how all of my pain and struggling affects them, the added stress and the sadness they experience seeing someone they care about hurt so deeply. So I hide a lot – all that I can.
I try and hide the depression, the anxiety and the panic attacks; I push it all down, deep inside myself. I try and hide all the physical symptoms that show on the outside as well as I can. I just try and hide it all because it’s all just too much! I think that with all of my diseases I have faced something I feel the human condition isn’t even fully capable of handling, not physically and certainly not emotionally. The public enormously misunderstands fibromyalgia and chronic fatigue syndrome. They are hugely debilitating diseases, and the public is so misinformed by what these invisible illnesses actually entail. We are thrown into a medical community of which the majority never even learned about these conditions in school, so the medical community is continuously failing us. We are the trapped, the hidden and the forgotten.
Disabilities can create these life-changing realizations, and I am proof of that, because they did for me. They are eye-opening. They make us re-evaluate our lives and they show us things we may have never realized. But sometimes these life-altering realizations can be harmful because they can also be unreachable. We finally see what we have missed and have taken for granted. We now know the things we should begin to do, but then it comes with the realization that we can’t! Mentally we are invigorated in our recognition, but physically we cannot reach them.
Experiencing this kind of loss is devastating and no one can tell you how long it is OK or normal to grieve. The five stages of grief are hard to get past for a reason. Loss is hard! Under any circumstance! And for those of us in chronic pain it isn’t a single loss – it’s a loss of ourselves, of nearly everything we have known and loved, and it’s a loss that continues without end. And time isn’t helping; time is cruel. It’s relentless and at times unending. I believe I will always have moments where I am dealing with grief and anger, but I also have my brighter and more positive moments. One day I hope to simply have more hope, more hope that my time may come, the time where I am finally cured, or where there is actually a decent medication on the market to help my pain. Until that day, my family has hope for me, and the sliver of hope I even have left is spent in hoping to spend my life finding the strength to continue on. I have the hope that the love I have for my family will always remain enough and continues to outweigh the pain and agony in which I suffer. And sometimes that is the most you can hope for. And you know what? That’s totally OK. People don’t understand the depth to which pain takes you. The only breaks I may have from my pain, unless a cure comes along, are in sleep or in death, and sleep comes so rarely these days.
I’m sorry this isn’t the story of a girl who beat the odds, who went through ridiculous obstacles and came out on the other side.
I’ve always liked Stephen King’s “The Stand,” and in it, he writes:
“No one can tell what goes on between the person you were and the person you become. No one charts that blue and lonely section of Hell. There are no maps of the change. You just come out on the other side…or – you don’t.”
So many things in life are not black or white like people want them and believe them to be. Life’s much more complicated and it’s much uglier than that. And sometimes you’re trapped in the middle. I’m in hell. Every day the pain of fibromyalgia is so overwhelming, and saying it sounds so underwhelming. There are no words to describe the agony. Even chronic fatigue syndrome is a horrible name to describe a fatigue that is so devastating to your life it has mostly trapped you in your home, in your bed – but there are no words in our dictionaries to describe the devastation these invisible illnesses cause. And that’s part of the pain of it all… There is no way for those around you to understand, and that’s kind of a hell in itself.
So, if you can take anything from my story, I hope you take this out of it… Please believe us! I am so lucky to have the family that I do. They have supported me more than I could have ever asked for, and they try so hard to research and understand what I am facing in my life now. I also wanted to mention one other thing I may not have made clear: I don’t want to die. But I also don’t want to live – not like this, because this isn’t living. I have struggled with depression nearly my entire life – according to my doctors, severe depression – but none of that prepared me for a life in chronic pain.
In this short documentary I watched a couple of years ago there was this teenage girl in chronic pain, and she said it better than I ever could. She said, “I haven’t wondered how long I’m going to live – but I’ve wondered how long I’ll have the strength to live.” And that’s a fear I face every day of my life because…I want to live! So, I am hoping I can continue to have the strength and courage to share my voice and my story – and to speak up. I just want to say thanks for taking the time to read this, and I will just leave you with one more quote. Saint Augustine said, “The greatest evil is physical pain.” And in my meager opinion, he couldn’t be more right!