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Forced to Grow Up too Fast due to Chronic Pain

“Girls my age are all: I wish I was skinnier, I wish I was tan, I wish my hair was longer, I hate my teeth, I want a newer car.”  And I am over here like I wish I could walk down these stairs without wanting to scream!”

Recently a young reader reached out to me who is suffering from chronic pain.  When I began writing four years ago about my journey with this invisible illness I believed my target audience would be mothers with chronic pain and I would be receiving emails from women who are trying to balance a life with chronic pain while taking care of their children.  I am a mother with chronic pain managing it well and am able to help those out there who cannot seem to get a grasp on this indescribable, invisible pain.  However, over the years I have received more emails and been contacted by older teenagers and young adults more than anyone else.  I was thinking about this last night and realized my target audience are those young adults who in the wraths of pain.  This made perfect sense to me and I had an Oprah AHA moment.  The worst years of my life were during the ages of eighteen to twenty two.  I was at my breaking point with chronic pain and life in general.  I can still remember, all too well how much my invisible disease had destroyed every aspect and facet of the person I was prior to chronic pain taking over my life.  During my young twenties I reached my rock bottom and it was at this time that I was literally drowning in pain and honestly wishing I was no longer alive.  I was not living any kind of life and to say I was surviving is even a stretch.  Therefore it does make sense why I have helped or guided those who are at that young age because I understand their pain better than I understand the pain of anyone else.  The people like who I am writing this post for do not realize that their words help me in ways I never thought possible.  It astounds me how strong this person is and how he is in such a better place than I was at his young age of twenty.

He brought up a very important topic that I believe will capture the eyes and minds of many young people who are drowning in their own pain.  When I was around the age of twenty I hated everyone and everything in the world.  Worst of all, I hated myself.  I isolated myself from all my peers because no one understood what I was going through and I could not bear to hear their problems because although I looked okay on the outside, I was near death on the inside.  Hearing my friends talk about cramps or a recent breakup from a two week relationship made me angry.  Hearing the problems of my friends made me want to scream: “YOU HAVE NO IDEA HOW LUCKY YOU ARE!  I WISH I HAD PROBLEMS THAT ARE SO EASILY FIXED.  I MAY DIE BECASUE OF THE CONSTANT DAMN PAIN I AM IN EVERY SECOND OF EVERY DAY. I WISH FOR ONE DAY YOU COULD WALK IN MY SHOES AND YOU WOULD NEVER COMPLAIN OF SUCH FRUITLESS MATTERS AGAIN. AND MAYBE YOU WOULD UNDERSTAND ME BECAUSE NO ONE ELSE DOES!”  However, I never said these words to anyone.  I either retreated to my bed to cry or asked my friends to have drinks with me.  I knew alcohol would numb my physical pain and I could then bear to hear about their problems.

I am thirty five now and I feel younger than I did when I was twenty.  I never found a cure to my chronic pain but I did find a way through the pain.   I still have chronic pain but it does not consume my life as it once did.  I can now listen to my friends problems without resentment or anger.  No one understands a pain or a struggle unless that person has endured that certain pain or struggle.  Anger and resentment towards anyone or anything only intensifies our own struggles and our own pain.  We are only hurting ourselves.  However, I want to remind anyone who is reading this who knows a friend or loved one with chronic pain that your loved one is suffering.  He or she is not selfish and wishes more than anything that they could listen to your problems and be there for you.  However, they cannot do that.  If you know someone who is truly suffering from an invisible illness understand that although he or she looks okay on the outside, that person is literally fighting for their life and doing the best he or she can.

This post is dedicated to Ethan: Thank you for your questions and please know that you are (like all of you) so much stronger than you believe.

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The Tears of Pain

8a0d1215ad669c518ccf7f9921b8ac48“I can explain it to you but I can’t understand it for you.”

Unknown

The topic of crying and chronic pain came up recently and the  question was asked: “Do you remember the first time you cried about your invisible illness, chronic pain?”  I racked my mind for days upon days trying to think of the first time I cried about pain and there are too many memories of overwhelming tears because of my invisible illness to even come close to remembering the first time I cried because of chronic pain.  I do not remember if I cried after I fell off of my bike in my early teens, resulting in brain surgery and months of recovery from my accident.  I am sure I did, I’m not superwoman but I have no recollection of being depressed or sad during the months I spent recovering from my fall.  To be honest I only remember good things: family members and friends visiting me, expressing their love and gratitude that I was alive and would be okay; flowers, cards, balloons, and gifts of all sorts; overwhelming amounts of attention and an outpour of affection from those I love the most in the world; and a calm sense that I had come very close to death and made it through something most people can never even imagine happening.  I remember fear but I have no recollection of sadness.  Granted, I was hooked up to machines and given many drugs for pain so I am sure that had a lot to do with it but I honestly remember peace and gratitude above all else.  My tears and heartache did not come until way after my accident when the invisible pain crept in like a robber in the middle of the night stealing much more than any personal belongings, this robber (also known as chronic pain) was stealing my life: something money cannot buy.

The first time I remember crying because of chronic pain was my junior year of high school.  I was sitting in social studies and one of my peers asked me why I was rubbing my face.  I had no idea I had been rubbing my face.  I later learned that massaging my face and head as I did, and sometimes still do is called a pain behavior.  A pain behavior is anything that brings attention to your pain.  I honestly had been rubbing my face and head for so many years that I had zero clue when or where I was demonstrating this pain behavior.  When one of my peers pointed it out in front of everyone in my class, I was mortified.  I had no answer.  I had never heard of the term chronic pain and had no idea why I was in pain.  I went home from school that day and swore I would never massage my face again but one hour later I was cognizant of the fact that as I was trying with all my might to do my homework, I had one hand on my face.  I ran up to my room in a fit of tears, scared as to what was happening to my body.  It was at that moment I believed I was going crazy.  That thought would last for the next ten years.

The second time I truly remember crying was in my freshman year of college.  I was in denial that I had a serious illness despite the fact that it was not visible and was trying to do it all.  I was trying to balance my first year away from home, a full schedule in school attempting to get straight A’s, and searching for a cure to the pain I was feeling.  I was either found behind my computer, taking breaks to cry in my bunk bed because  pain was taking me away from concentrating on my books or computer; in doctor’s offices getting various surgeries and or medications, or out with my friends trying to numb my pain by way of drinking.  I never told people I was going to the doctors or having surgery.  I thought my friends would think I was crazy.  With each medication, treatment or surgery my pain only got worse.  As my pain got worse, my depression and anger intensified until I could no longer take school, relationships, or doctors.  I spent my days crying in bed wishing I had any other life than the one I had.

I ended up going to the Mayo Clinic in Minnesota where I spent three months seeing every doctor the facility had to offer.  I had about four doctor appointments a day.  I spent those months in a hotel room becoming more and more distraught as nothing worked.  One day, my main doctor there called me and asked me to come in for a meeting with himself and his nurse.  I could hear, by the sound of his voice that nothing good was going to come of this meeting.  As I took a bus to the meeting, I felt as if I was walking down my own death row just waiting for my sentence of life to be over for good.  The Neurologist explained to me that I had a condition called chronic pain that was most likely correlated to my bike accident that happened in my young teens.  This was the very first time I had heard the term: chronic pain.  What he said next took my breath away.  He said: “Jessica, you have chronic pain and unfortunately there is no magic cure, medication, or surgery to take away your pain.  However, there is a program here at the Mayo Clinic called the Pain Rehab Center that helps people with chronic pain learn how to manage pain naturally and teaches people how to live a fulfilling life despite pain.”  I was in SHOCK.  I remember screaming through copious amounts of tears: “NO, NO, NO!  I will not accept pain.  I would rather die than live in pain the rest of my life.  I hate you.  I hate pain. I hate my life.  Why me??  I did not come here for this!!! I came here for help!!!  Pain had destroyed ten years of my life and you want me to live with pain?!  Hell no!”  I stormed out of his office and when I looked back through my tears I saw that the nurse was crying as well.  I went back to my hotel room and laid in bed for days.  I did not cry.  I was numb.  I did not get out of bed for anything, not even food.  I laid in the dark with no television, curtains drawn, willing myself to sleep but pain and anxiety had taken over my entire body.  I was done.  Days later I finally accepted a phone call from my dad who begged me to consider going into the Pain Rehabilitation Program.  I would have done anything for my dad and I finally agreed to go.  I will never forget the days I spent in that dreary hotel room laying in a bed millions of other people had laid in wishing my life away.  That is pain.

If you have read my story you know that the Pain Rehabilitation Program saved my life.  Yes, I still have chronic pain but I no longer allow it to control my happiness.  There are certain times I am more aware of pain than others but I have been managing pain naturally for years and although I do not have the life I had planned exactly, I have a life I am proud of and grateful for.  I think there will always be times I cry because of chronic pain but the tears do not last and I am very happy for the most part.  No matter how hard I try and remember the first time I cried because of chronic pain is like asking me what happens after we pass, I have no idea.  I spent over a decade in tears and am just very grateful that pain no longer has that power over my life.

 

 

 

 

 

 

 

 

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Being Judged Because I “don’t look sick”

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This is exactly what someone looks like with chronic pain.  This picture was taken at a place called, Long Wood Gardens which is where we spent my dad’s past birthday.  To people walking by who do not know me would never believe I have chronic pain.  I am trying to go back in time and visualize this picture fifteen years ago when I looked nothing like this and my world was spiraling out of control due to chronic pain.  If twenty-one year old Jessica saw this mother and daughter at a well known garden exhibit, she probably would have cried wishing she could be the person seen above.   The Jessica of past would never have thought this Jessica has chronic pain and would have been filled with jealously just at the fact that this person seen above was a smiling, happy mother spending the day with her family.  Twenty something Jessica would have thought: “Sure, maybe this in shape, happy mom isn’t perfect but I would give my right arm to have her life.  If this lady could live with pain like I do for just one day she would never be able to have a beautiful daughter and be happy at a place like this.  I’ll never have anything like this girl.”

I wish I could tell my younger self that one day she would be the woman she sees who is smiling a real smile, healthy, and a mother of a more than beautiful daughter.  I am misunderstood on a weekly if not daily basis.  It was easier for people to believe I had chronic pain when I was forty pounds heavier, depressed, unhealthy, and at the doctors for pain at least three times a week.  I never worked out a day in my life until I was the age of twenty-two.  I never ate extremely healthy.  I could do keg stands with the best of them and my idea of a healthy dinner was pizza with broccoli on top.  People who know the Jessica I am now have a very hard time believing me when I tell them of my past because of how dedicated to health I am.  I used to hear whispers at the gym when people did not realize I could hear them over their headphones: “That girl says she has chronic pain but there is no way she does.  It is probably just for attention.  If I was in a lot of pain I would not be able to run on the treadmill or lift a weight.”  Hearing comments like such or knowing that some people do not believe me used to infuriate me but not so much anymore.  I used to feel the need to justify myself which takes a LOT of energy and is a total waste of time.  When asked or confronted on how I was able to do things when I had ‘chronic pain’ I used to go into my entire story: “Believe it or not, I exercise and live the way I do because of chronic pain.  I spent ten years searching for a cure and taking tons of medications for pain until I wanted to end my life and ended up at the Mayo Clinic in Minnesota where I learned to manage pain naturally.  They taught me to exercise correctly, and physical therapy taught me about weight lifting and the importance of strength training.  If I did not exercise or do all the things I do for my natural management of chronic pain I would be a total wreck just like I was in my young twenties.  You should see pictures of me from back then.”  This is literally a paragraph I would say on a daily basis: at least once a day.

Then I woke up.  I began to realize that the more and more I justified my invisible illness, the more I was focusing on my pain.  I spent years working on not focusing on pain and now I was spending an hour a day justifying myself to people who I was not even close to.   People are going to judge you no matter what: invisible illness or no invisible illness.  I truly believe people talk about other people as a way to not have to deal with their own problems.  I know.  I used to be one of those people.  You have no need to justify yourself to ANYONE.  The only person you need to improve for or impress is YOU.  We need to be more concerned with how we feel about ourselves and less concerned with how other’s feel about us.  It is your life, your health, and your happiness.  Do not waste the energy that some of you fight damn hard for on other people’s opinions of you and your life.  Never forget that everyone you meet is fighting a battle you know nothing about.

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What Chronic Pain Feels Like…

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“Chronic pain can make you feel like your life is being erased one moment at a time.”

Unknown

There are two types of pain and although neither are enjoyable, one is at least bearable.  The first type of pain is ‘acute pain.’  I’ve yet to see what is cute about any pain but I definitely did not come up with the terms found in the dictionary.  Acute pain usually has a resolution within six months and the treatment goal is no pain.  Opioids and narcotic analgesics are effective and there is a clear time as to when the pain will go away.  I have broken my ankle twice and because I knew the cause and the cure, the pain did not even bother me.  For a person without chronic pain, he or she may be miserable for the six months it took for their ankle to heal but for someone with chronic pain, a broken ankle is like a walk in the park except with the use of crutches.

Chronic pain comes from the Latin word: “time.”  The term chronic pain is pretty indicative to the invisible illness: chronic as in the pain NEVER GOES AWAY!  Chronic pain is pain that lasts six months or more and can occur without any indication of injury. This is the most frustrating disease as sometimes there is no known cause and one truly begins thinking he or she is crazy or the pain is “all in their head.”  Treatment options for chronic pain are very limited although I spent over ten years searching for a cure to my personal chronic pain.  I came to the conclusion with the help of the  Mayo Clinic that there was no cure but there was rehabilitation. I learned that one can live with chronic pain and not allow pain to dictate their life, health, or happiness.  I whole heartedly believe that chasing a cure to chronic pain for more than a year will leave you with more pain, more distress, more hopelessness, and more depressed than you have ever been in your life.  I know this was true for me and I chased a cure for over ten years: ten years of my life that I will never get back.  I do not regret those years because I am able to write and help others in their journey with chronic pain.

People ask me at times what chronic pain feels like and it is a question that is very hard to answer.  However, chronic pain is REAL.  Imagine having an illness you hate more than any other illness.  Whether that be a migraine, the stomach flu, or restless leg syndrome non-stop.  The pain or vomiting literally NEVER GOES AWAY.  You spend every waking hour of every single day in severe pain.  The pain is all you can think about morning, afternoon and night.  You barely sleep because the pain or the fear of the pain is so unbearable.  Pain rules your life and you will stop at nothing to rid your mind and body of the pain.  It feels as if someone is stabbing you over and over again and you have no control over their behavior.  You one day want to be stabbed to the point where you die but death refuses to come, just more pain.  That is how a person with chronic pain feels when he or she has yet to find their rehabilitation.  Remember that the next time you pass any judgement on a person with chronic pain.  Nobody asks to have chronic pain and I promise you whether or not a person’s pain is visible is a moot point.  Pain is pain and in my thirty-five years on this Earth, nothing has been more challenging than my journey with chronic pain.

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Desperation and Chronic Pain

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Do not ever lose your sense of humor, no matter how difficult your journey is at this given time and place.  I believe two things got me through my toughest years of searching for a cure to my invisible illness: the love for my family and the rare times I laughed.  Ironically my dad is the person who fit into both these categories: I did not give up because of my love for him and there were times he was truly the only person who could make me laugh.

If you understand the above cartoon, I’m sorry for your battle with chronic pain.   I remember back when I was in a terrible place with my invisible illness cancelling doctor appointments on a monthly basis because I was literally in too much pain to get out of bed, get dressed, and drive anywhere.  I chose to lay in bed on those days and just cry at the unfairness of my disease and the frustration I had that I could not find any relief no matter what doctor, medication, surgery, or specialist I tried.  I did not claim medical bankruptcy for buying clothes and having fun.  I was spending all our families money on one thing: a cure to my never-ending pain.

I started laughing today as I was playing with my daughter because the most random memory came into mind.  It was around the year 2001 and I was on my tenth year of searching for a cure to chronic pain.  I was living in Boulder, Colorado living two lives: one life was with my friends having fun drinking and living the crazy college life; the other life searching for a holistic cure to chronic pain as I truly thought I had put in my ten years using Eastern medicine and Colorado was a great place to find a ton of different approaches to pain.  Did any of them work?  No.  I was living two lives.  It is hard to follow your nutritionist’s advice to stop eating all wheat based foods and be drinking vodka tonics most nights.  Talk about an oxymoron.   Back to the funny memory (this memory is funny now but at the time it was anything but humorous.)  My dad was visiting me in Colorado for his birthday and Easter.  His visits meant the world to me but I really wanted him to believe I was doing a lot better than I was despite the fact that I was still on my now eleven year search for a cure to chronic pain.  I was seeing a hypnotist at the time who claimed she could cure all the pain I had.  After a few sessions and no relief she recommended me seeing her friend who used the newest technology to help people who were in physical pain.  I remember my dad taking me to this ‘doctor’s’ office and literally praying that the hypnotist was correct and this magic machine could cure me.  This was a moment of intense desperation.  The ‘doctor’ charged a fortune for me to sit alone in a room with what appeared to look like an oval robot.  I am not making any of this up.  After paying him an exuberant amount of money, he had me sit in a room by myself with this robot that apparently set off magnetic frequencies that dulled or removed a human’s physical pain.  Both this doctor and robot made out well that afternoon, but I was a hot mess.  Not only did I feel beyond dumb, I realized I had come to a point in my battle with chronic pain where I was relying on an oval, black machine to cure my invisible illness.  It was mere weeks later that I hit my rock bottom and ended up at the Mayo Clinic in Minnesota.  Looking back, I can thankfully laugh at this madness but at the time I was in seriously bad shape.

This story that I just threw out there may seem very odd to the average person but to a person with chronic pain this anecdote is sadly much more common than one would believe.  People with chronic pain will literally do ANYTHING to relieve their pain.  You may think he or she is crazy but as Elvis Presley once stated: “We are all addicted to something that takes the pain away.”  Part of my addiction to my invisible illness was searching for a cure and I am more than grateful that I found a way to live, laugh, and be the person I am today despite never finding that cure.  None of you are crazy and I know all of you can one day laugh at the madness we put ourselves through because of chronic pain.

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Why I No Longer Talk About Pain

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“Whatever you are talking about you’ve got.  You have got to start telling the story the way you want it to be.”

Abraham Hicks

My journey with chronic pain can be summed up in three phases:

  1. Spending every waking second talking, thinking, and focusing on pain.  After my scars had healed from my bike accident, the pain seemed to get worse.  I talked about my pain constantly.  I went to a few doctors but back in the nineties chronic pain was not a well known disease.  Not one doctor used the phrase ‘chronic pain’ and prescribed different medications in the hopes the pain would subside.  I talked to my friends, family, and even people I hardly knew about pain.  I wanted someone, anyone to hear my words and my pain despite the fact that it was invisible.  My close friends and family were very empathetic and loving during the first few years of my journey with chronic pain.  I was asked on a daily basis how I was feeling.  At first, I welcomed questions regarding how I felt because I could tell that people cared and believed me.  Fast forward some time and the questions became very frustrating and depressing.   I did not feel better, the pain was only getting worse, and I felt that I was letting everyone down that cared because I was not only not getting better but the pain was completely taking over my body, mind, and spirit.
  2. After the first few years in my journey with chronic pain, I began to stop talking about pain.  I only talked about my invisible illness with doctors, specialists, and at times my dad.  I hid my chronic pain from everyone and when asked how I was feeling my response was always the same: “I’m fine.”  I spent most of my life during this phase searching for a cure.  Chronic pain had completely taken over my life despite the fact that I did not talk about my condition.  I thought I was going crazy and I did not want to lose my friends and family.  Slowly I began to isolate myself just so I did not have to bring anyone down and did not have to answer questions about pain.  I got to a point of hopelessness and gave up on finding a cure, worse I gave up on my life.
  3. Fast forward ten or more years and I finally heard the words: chronic pain.  I was in Minnesota at the Mayo Clinic seeing every doctor possible to find a cure to my invisible illness. I spent months there undergoing tests, taking medications, and seeing every specialist possible in the little city of Rochester, MN.  After a few months, my main neurologist at this amazing hospital told me the ugly truth: I had/have chronic pain and there was no magic cure but there was a program right there in Rochester that taught people with chronic pain how to manage it naturally and live a happy life despite pain.  I was hesitant, angry, and depressed at first but I finally gave in and entered the Pain Rehab Program where I did get my life back without finding that cure I swore I could not survive without.  I stopped talking about pain all together at this point in my journey with chronic pain.  However, I stopped talking about the pain for myself not for other people.  I learned that for me, talking about pain only brought more pain into my life.  The more I talked and thought about pain, the more pain I had.  This was a very difficult thing to do at first and still is at times as when I am having a hard day with my invisible illness I come off as bratty or in a bad mood (which is a normal mood for someone who is having a difficult day with pain.)  I did not want my loved ones to forget that I had chronic pain just because I no longer talked about or brought attention to my incurable disease.  I now say: “I am having a difficult day” to my close friends and family when my pain is controlling my mind and body.  These difficult days are infrequent but the term chronic pain literally means that the pain is chronic and will not just go away.

What controls our minds, controls our lives.  What consumes our thoughts, consumes our lives.  What we talk about on a consistent basis is what we will get in return.  If we are consistently talking, thinking and dwelling about our pain the Universe has no choice but to bring more pain into our lives.  Some parts of my days or nights I am unable to distract my mind from pain and must practice non-resistance.  However, I am able to distract myself most of the time and I do whatever I can to train my brain to not think about pain.  I used to not talk about pain because I was so miserable I literally wanted to die.  I was tired of disappointing my family and friends with the same answer: “The pain is only worse and nothing is helping.”  I now do not talk about pain for myself.   I want to feel good and I do not want pain to control my life.  It does not matter what other people think.  I manage pain for me, not for anyone else.  I found what works for me and talking about pain all the time is only going to increase my pain levels and bring me back to a place I never want to face again.  I have a life now despite pain now and I would be a fool to do anything to change what has worked for me.  Just because a  person does not talk about pain does not mean their pain is not there.  He or is she is just stronger than the pain they are managing on a daily basis.

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White Noise

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Years ago, when chronic pain ruled my world, the only place I felt heard was alone in the ocean.  I loved the waves crashing over me, melting away the screams that I could no longer manage to voice.  I loved looking out into the endless ocean because it was the only place that gave me hope that life still existed: the ocean expanded so far, I felt that maybe no matter how bad of a place I was in I too could one day expand as the ocean did.  I loved the feeling of being crushed by the rough waves and treading under water as I heard the faint noise of the water above.  What most people feared about the ocean, was what I found as the only peace that still existed in my world of pain.

The Oxford dictionary defines white noise as noise containing many frequencies with equal intensities.  Invisible illnesses such as chronic pain also contain many frequencies with some-what equal intensities.  Chronic pain does not come alone.  Chronic pain is followed by many other white noises: fatigue, depression, anxiety, insomnia, hopelessness, and sadly sometimes suicidal thoughts and ideations.   Over time people forget one has chronic pain and their screams can literally only be heard as white noise.  They feel alone, hopeless, and many find places such as I did with the ocean as the only place he or she feels heard and/or understood.

In 2005 the movie: “White Noise” came out starring Michael Keaton.  He plays a man who loses his wife, Anna unexpectedly and becomes obsessed with finding her on ‘the other side.’  He meets a man who works with the supernatural using a device called: EVP (Electronic Voice Phenomenon.)  He is a skeptic at first but soon becomes a believer and makes it his lifes mission to speak to his wife through EVP or as others call it, white noise.  I enjoy this genre of film and although this is not my favorite “ghost movie” it does correlate with how I view my own struggle with chronic pain.  Both the character played by Michael Keaton and his deceased wife are trying desperately to speak to one another but all they are able to hear is white noise.  Trying to explain an invisible illness, such as chronic pain comes out to those who do not have chronic pain as white noise.  The words are there but they are not comprehensible to the people we so desperately want to understand us and what we live through each day.

For over ten years I knew no one with chronic pain.  My life was filled with white noise drowned out by the voices of doctors, friends, and family.  No one could hear me and soon my screams could only be heard inside myself.  It was not until I went to the Mayo Clinic in Minnesota and entered the Pain Rehab Center that I met other’s who also had chronic pain and my white noise slowly faded away.  I did not need to explain what I felt because I was surrounded by others who felt the same exact way.  I learned so much while at the Mayo Clinic and practice the tools I learned there daily to manage pain without medication or treatment.  However, what I benefited from most was the commonality I found amongst my peers who also had chronic pain.  The worst part of an invisible illness is not being understood.  All you need is one person, whether that be a friend or family member or in my case a total stranger I met in the middle of Minnesota to truly understand how you feel.  I hope that my writings and stories help drown out your own personal white noise.  You are definitely not alone.

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