Strength in the Midst of Pain

“No matter how justified you are in your negative emotion, you are still messing up your future.”

Abraham Hicks

When I first read the quote above I found it to be quite harsh however the quote stuck with me and every time something I read or hear stays in my mind, I know there is some meaning in it for me.  Everyone who has chronic pain is beyond justified to feel many negative emotions.  I lived, breathed, and survived through negative emotions for over ten years due to chronic pain.  You are all beyond justified to feel depressed, angry, frustrated, misunderstood, and at times hopeless.  Despite how far I have come with my personal journey with chronic pain I am still justified in feeling negative emotions at times due to my invisible illness.  However, there came a time for me and it will come for you as well that you realize you do have a choice in how you manage your pain and how you allow your pain to either better your life or destroy your life.  Pain destroyed everything in my life for a solid third of my time in this world.  Once I did the hardest work of my life and began to manage pain naturally and found ways to live with chronic pain without it controlling my life, my days began to get better and better therefore leading to a better future, a future I never imagined I would have.

As most of you know I had a terrible loss ten days ago and although I am still filled with a multitude of emotions and can cry at the drop of a hat, the cry of a baby, or even a commercial for diapers I have come to a point where I am once again excited to make and bring a healthy, happy baby into this world.  I never lost hope but I am now changing my thoughts (as much and as often as I can) into positive thoughts.  When I first heard those words ten days ago: “There is no heart beat”  I felt like my heart and soul were being ripped to shreds and I did lay in bed for days crying and catastrophizing.  I did not want to celebrate Thanksgiving and the thought of Christmas made me cry harder than one can imagine.  But, I awoke one morning and decided to get up and get back to living.  I got back to my natural management of chronic pain routine.  For a week I have been waking up at five am, exercising, writing, decorating for Christmas, and began to remember how much I have to be grateful for.  I took the picture above of my daughter Kayci on Thanksgiving.  She is an angel.  Had I not had a miscarriage on February 2nd, 2010 my daughter would not be here and the world would not be the same.  She makes people happy.  She has a zest for life that gives others a zest for life they did not know they still had.  I know from the bottom of my heart that the loss I just faced not only saved a baby from a very painful life but also is going to allow another angel come into the world, just as the loss I faced in 2010 brought Kayci into this world.

We never can say what, when or how emotional pain will settle (not go away) but calm down to a state of acceptance and we are not supposed to know as we all grieve in our own ways and no one can be judged for how they deal with their pain or grief.  There is no time limit.  I awoke a couple days ago and my first thought was not of the excruciating pain of the loss that just occurred but with an excitement to start over.  I believe chronic pain and other challenges I have faced in this world have given me an added boost of strength because had this happened years ago I would still be in bed crying.  I do not want to forget all I have while working towards what I want, what my family wants, what my angelic daughter wants.  It will happen.  Yes, I am still grieving and I would be lying if I said I did not cry once or twice a day but I am still grateful and excited for my future.  I am justified to have many negative emotions and I did live in those negative emotions for days.  I want to be positive and happy and I do thank God for my faith that dreams do come true but not on our schedule.

I want to dedicate this post to Kristen who recently wrote me an email and helped me see the strength I do have.   I know you all have that strength too even if you do not see it at this moment.

Empathy and Chronic Pain

“I love when people that have been through hell walk out of the flames carrying buckets of water still consumed by the fire.”

-Stephanie Sparkles

There is a huge misconception that people with chronic pain want, thrive even off of pity.  Many believe those with chronic pain want to be coddled and treated somewhat like a baby.  I have had many people say to me: “Oh my, so young to be diagnosed with such a disease. I feel so badly for you.  Why did you have to fall off of that bike at such a young age.  Its such a sin.”  I know logically that people’s hearts are in the right places and they truly feel for me and others who have an invisible illness.  However, I never wanted pity from anyone even when I was at my lowest point with chronic pain.  I definitely do not want any pity now at a time in my life when I have been managing chronic pain so well for such a long time and have tried as hard as I possibly can to find the good in my accident and life with chronic pain.

The Oxford Dictionary defines pity as: the feeling of sorrow and compassion caused by the suffering and misfortunes of others.  I do not want people to view me as a suffering thirty five year old who has had the terrible misfortune of falling off of her bike at a young age leading her to a life to chronic pain.  However, I do want encouragement and at times empathy.  The terms pity and empathy are not alike whatsoever.  The Oxford Dictionary defines empathy as: the ability to understand and share the feelings of another.  People always ask me what helped me the most in my journey with chronic pain.  I learned so much at the Mayo Clinic in Minnesota.  I learned from doctors, physical therapists, nutritionists, etc. on how to manage pain naturally and not allow pain to take over my existence.  I learned that I could live the life of my dreams despite not finding a cure to chronic pain.  However, the best part of the program was the empathy I received from the people who were also in the program.   I became friends with people of all ages, races, genders, from all over the country.  On the surface most of us looked like your average American but we had one HUGE thing in common: we all had a form of chronic pain and for most of us our pain was not visible.  For ten years no one understood how I felt inside as pain after a long time becomes not just physical but emotional as well.  I was one hundred percent alone for a third of my life.  I was a turtle who only came out of her shell when she was desperate enough to spend time with people just as not to be alone in her pain for a few minutes or hours. The Pain Rehab Center at the Mayo Clinic allowed me to come out of my very hard, broken shell for weeks.  I was no longer alone.  I was understood and able to share my feelings/emotions with others who did not pity me but empowered me to keep going despite chronic pain.

There are challenges I face now and I do not share them with many people because the last thing in the world I ever want again is pity from friends and family no matter what my difficulties may be.  I want to be encouraged and empowered.  Pity does nothing but make another person feel worse than he or she already feels.  I love knowing people believe in me and believe in my dreams.  I do not want to hear: “I am sorry you are going through this or that.”  I want to hear: “Jessica, you are so strong.  You got this.  I have every ounce of faith in you and I am here if you need anything.”  You do not always have to be in someone’s shoes to express empathy or encouragement.  The greatest thing you can say to a loved one with chronic pain is: “I have no idea how you deal with this invisible illness every day.  You are so strong and I am so proud of you.  I am always here for you.  I believe you, you are never alone.”

A quote always sticks in my head when I write about empathy and I will close this article with this: “I do not want you to save me.  I want you to stand by me as I save myself.”

Being Judged Because I “don’t look sick”

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.

My Three Lives in Pain

“My illness isn’t really invisible.  If you look closely enough you can see how much it has changed my life.”

Unknown

My bike accident occurred when I was in my young teen years.  I feel as if I have led three different lives during my thirty five years in this amazing world.  The first thirteen are somewhat difficult to remember.  My earliest memories are with my dad taking bike rides to the park and playing kickball with my friends in our front yard.  Some great memories stick out and some terrible memories are there that I will never forget.  I was a kid with an enormous zest for life.  Despite not having the “perfect” childhood, I have more great memories than bad memories and my family did the best they could to provide me with a joyous childhood.  No one would have imagined the events that occurred during the ten years that followed my bike accident.  I remember the day I fell as if it was yesterday, down to the taste of the pink mint that I was chewing when the front tire of my bicycle got twisted with the bag I was carrying and my body went directly into a stone wall.  The damages that occurred on that day would affect the next two thirds of my life.

For the following ten years I would be a totally different person than I was during my first thirteen years here in this world.   As many of my readers know, my accident resulted in brain surgery to remove a blood clot and many other injuries that had me in critical condition for a few weeks and then bed bound for a few months.  I do not remember the pain from my surgery nor being extremely upset about losing three months of summer.  I remember fear but not pain.  I was doted on for months as everyone was beyond happy I was alive and healthy.  I received flowers, presents, cards, balloons, and because I was unable to walk up the stairs my dad gave me a bell to use whenever I needed something.  Once my scars healed and my hair grew back, I believed that my life would go back to the way it was pre-bike accident: not perfect, but happy.  I could not have been more wrong.  Brain surgery was nothing compared to the pain I would endure for the second portion of my life.  I looked pretty much like the Jessica I had been before my fall except for all the fun things that come with puberty like pimples and oily skin but I was in more physical pain than I had ever endured; the difference was that the pain was no longer visible.  I can remember the exact moment I began noticing the pain.  I was sitting in my Seventh Grade Social Studies class and a classmate asked me why I was rubbing my face and neck.  I had gotten so used to massaging the pain I felt that I started doing it constantly.  For the next ten plus years I would search for a cure to chronic pain.  The term chronic pain was not used during this time and every doctor and specialist I saw was mystified by my condition.  I was miserable, confused, in pain, and filled with a desperation for relief that no words can describe.  I tried everything to the point that if someone started a question with the words: “Have you tried……” I would stop them before they could finish because I truly had tried EVERYTHING.  Fast forward a few years and despite my huge passion to get my college degree, I dropped out after two and half years and drove to Boulder, CO to drown my pain in partying with friends.  I was the fun girl who was always up for having drinks or taking random road trips to Vegas.  I surrounded myself with people who loved to drink and party so that I could finally “fit in” with people as I had during the first third of my life.   I was the life of the party on the outside but inside I had never been more unhappy.  I came to a point that I not only hated my physical pain but I hated myself.  I hit a rock bottom that was harder than the wall I fell into that started this whole mess.

My friends in Colorado began to notice that I was not as okay as I appeared to be.  I was no longer the life of the party.  I was at the party but with each drink I cried more about the physical pain no one understood, not even me.  A good friend saw that I was heading somewhere bad fast and believed me when I said I was in severe pain despite the fact that the pain was not visible.  He believed me and that belief saved my life.  I ended up driving to the Mayo Clinic in Minnesota where the third portion of my life would begin.  After two months of seeing every specialist possible and undergoing every test possible, I was told that I had chronic pain and there was no magic cure to my invisible illness.  I am not sure I have ever cried as hard as I cried when the words: chronic pain and no cure came out of this brave doctor’s mouth.  Under his guidance and advice, he got me into the Pain Rehabilitation Center at the Mayo Clinic where I learned how to manage and live with chronic pain naturally.  I went unwillingly at first but deep down I knew I was headed for death if I did not try one last thing.  The first week was brutal and I did not say a word to anyone.  Then something clicked.  I started listening to the people around me whom also had chronic pain.  Their pain, like mine was mostly invisible as well.  I was no longer alone.  Chronic pain does not discriminate and I became close to people I never would have talked to because despite races and age, I had more in common with the people in my chronic pain group than I had with anyone in the world.  My entire life changed during the next three months.  I learned how to live with chronic pain and manage it without medications or treatments.  I began to live again as opposed to merely surviving.  I was alive.  I stopped hating myself and began to embrace life and follow my dreams.

I was petrified to go back to Colorado and wanted nothing to do with the lifestyle I had been living there.  I was healthy.  I had learned that I could be a healthy, happy person despite chronic pain.  However, I had to change my entire lifestyle.  I was exercising, eating healthy, reading again, writing, and wanted nothing to do with drinking or anything that could affect my chronic pain management routine.  I lost a lot of friends.  I was not the same Jessica I had been prior to going to the Mayo Clinic.  I went from being the life of the party to the girl who was in bed reading by eight o’clock and awake by five am exercising.  I was one of the most “boring” twenty-two year olds in college.  No one understood me and I was asked constantly to go to this party or that party but I had to say no even though I knew I was losing the group of friends I had once counted on to get me through the night.  I had to be selfish.  I had to focus on my health.  I spent a year in Denver, Colorado practicing the techniques I learned at the Mayo Clinic every day of the week: no exceptions.  I needed that year to totally focus on my health and my new way of living.   I then went back to school in Denver, CO and did get my college degree in Social Work.  I loved learning how to help people so much that I ended up graduating at the top of my class and once I stopped resisting pain, everything began to fall into place.  I am now thirty-five years old and there have been bumps in the road in my journey with chronic pain but nothing like the life I led for the second half of my life.

If you have chronic pain I want you to know that you are not crazy and you are not alone.  I spent a third of my life living in hell, wanting to scream and cry every second of every day.  I wanted to tear my entire face and head off just to get rid of the pain.  I did not have hope because I knew no one who understood what I was going through.   There was no light at the end of the tunnel.  I understand that you may be in the worst possible place mentally and physically but I need you to have hope.  There may not always be a way out but there is a way through.  I promise you.  If I can live a happy life despite pain, anyone can.  Don’t worry, I probably would not have believed myself either if I read this fifteen years ago but at least know that there is a light at the end of the tunnel and the light is very bright.

 

What Chronic Pain Feels Like…

“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.

Desperation and Chronic Pain

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.

Why I No Longer Talk About Pain

“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.

White Noise

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.

To the Teacher of a Student with Chronic Pain

“It’s like swimming upstream every time you are awake.”

-Oriana Hill

Middle school is not easy for anyone, whether you are in the ‘popular group,’ the ‘intellectual group’,’ the athletic group,’ ‘the party group,’ and so on.  The popular Eighties film: “The Breakfast Club” pretty much sums up the life of a teenager in their teen years.  I did not fit into any group when I first entered Seventh grade.  My bike accident happened right as summer began after my Sixth grade at a private school.  I was excited for the summer but very anxious to enter a public school where I knew no one and would be the new kid on the block.  My anxieties about entering a brand new school were only intensified after my bike accident when I then had half a shaved head, chronic pain, and a face that was still difficult to recognize even after recovering for three months.  One would think that the students would be cruel to me but it was not just the students that misunderstood me, there were some teachers who truly made that first year at a new school a bigger disaster than it already was.  The funny part is that my scars still were evident: my hair had not grown back all the way, I still had bruises and as I stated before my face was not yet healed by any means.  I was in both physical and emotional pain and I feared going to school every day of the week.

I had one teacher who taught History/Geography in my first year of Middle School.  I had never been very interested in either History or Geography but this class was right before my lunch period where I ate lunch in the bathroom alone daily just so no one could see me and I would not be made fun of or worse be the only kid among one hundred students eating all alone.  I spent the fifty minutes of the class I already did not like watching the clock tick by, dreading the sound of the bell for lunch time.  There are certain moments we never  forget and one of those moments for me happened in this particular class.  I was called to the front of the room to point out a certain state on the map the teacher had hung up on the chalk board.  I could hear the whispers behind me as I timidly walked up to the front of the room, facing thirty other kids.  My heart was pounding, my palms were sweating and I had totally forgotten what the teacher had asked me to point out for the class.  I may have been watching the clock while he was teaching the lesson and had no clue what he had even asked me to do.  Either way, I could not find the state or city the teacher had asked me to find.  He was not kind about my inability to follow his directions and kept pushing me to find what I knew deep down I could not find on this damn map.  After about five minutes, tears welled up in my eyes and I ran out of the classroom and into the nearest bathroom where I slammed the door and let my tears fall.  No one came to see if I was okay.  I stayed there until the bell rang for the dreaded lunch I would be eating in that same bathroom stall.   To this day I have trouble with geography.  Up until a couple of years ago, I thought that Seattle was a state.  There may be no correlation to my ignorance to geography at the age of thirty five and my experiences in Seventh grade but I am sure there has to be some relation.

Eighth grade was a tad easier for me in school.  My visible scars had healed and my hair had grown back and I was able to hide chronic pain for a long time.  I began to have friends and enjoy learning again.  I did not eat lunch in the bathroom and made two friends who are still my closest friends twenty years later.  Nothing was ever easy as I was fighting an invisible battle with pain but at least I did not have the added stress of being put down by certain teachers and peers.  I believe that teachers need to have an extreme sense of empathy just as I had when I was a social worker.  We all need to remember that people are fighting battles we know nothing about.  There is a reason kids act out in school: no one is born “bad” and I truly do not believe there is such a thing as a bad kid.  I could not count on my peers when I entered this new school because I was not only the new kid but I was the new kid who looked like a ‘freak.’  I should have been able to rely on my teachers and there were many that were extremely helpful to me and without their empathy and support, I am not sure I would have made it through that first year of middle school.  Just because one is a doctor does not mean he or she is a good doctor, just because someone is a parent does not mean he or she is a good parent: the same goes for teachers.  You can have all the knowledge in the world of Geometry and World History but what students need to learn the most is how to treat other people.  I will never understand how Geography is more important that empathy.  I thank this teacher for being so hard on me and teaching me what I know is not okay.  No, I never found that damn state on the pull down map during that Geography class but I did learn strength and I learned how important it is not to judge someone no matter what they look like and I started to learn how important empathy is.

 

Guilt and Chronic Pain

“You are not obligated to do everything a healthy person does.  You are not obligated to be an inspiration. You are not obligated to hide your illness to make other’s comfortable.  You are allowed to know your limits.  You are allowed to have bad days.  It is not your fault if other people leave you because of your illness.  It is not your fault that you have an invisible illness.  You do not have to apologize for something that is out of your control.”

Unknown

I never truly acknowledged the amount of pressure and guilt I put on myself until my daughter, who is now four was born.  I have always been a perfectionist but I never want to fail as a mother in any way, shape or form.  However, I believe my quest to be the perfect mom at times causes my anxiety levels and stress levels to go up which in turn increases my pain levels or at least I notice my chronic pain more.  There are things I did not have as a child that I want my children to have, but deep down I take this motherhood thing to a whole new level.  I love my daughter more than anything in this world and as most parents know it is a love that is unlike any other love in the world.  The love I have for my daughter scares me at times.  I wonder am I doing this or that right, analyze her actions as ‘age appropriate’ or dare I use the term: ‘normal.’  I never want her to be sad, feel abandoned or have a bad day.  The pressure I put on myself to make my daughter happy can at times be unhealthy for both of us.  That realization and throwing that sentence out into the world is not easy for me to do.  I am very much like other mothers I know and am friends with but I believe some of my childhood and my journey with chronic pain has shaped me into a mother who worries way too much about how her daughter is doing/feeling/acting and not enough time focusing on how I am doing/feeling/acting.   Cognitively I know and most of us realize this: the happier and less stressed/healthier I am, the happier my daughter will be no matter what we are doing.

I had an appointment for a physical scheduled for this gloomy Monday morning and I truly hate going to the doctor’s office because it reminds me of my ten year search to find a cure to chronic pain, during which I LIVED in the offices of every doctor imaginable but what I now dislike more is the guilt I put on myself because my four year old comes with me.  I almost cancelled (in hindsight I wish I had) because I did not want to drag her to a doctor’s office even though it is harder on my than her: thoughts truly do create our reality.  I packed snacks, games, books, magazines, colored pencils: the works just in case the wait was long which it ended up being: way too long of a wait for that matter.  After an hour and a half in the waiting room, I honestly could not take waiting any longer and Kayci had been patient up until we passed the sixty minute mark.  I told the front desk I would have to re-schedule and decided to go to a different office as I got very bad energy from the office and honestly the receptionists were very rude.  I have learned to follow my intuition and for some obvious and not so obvious reasons this is not a doctor’s office I ever want to go to again much less bring my four year old to.  The guilt kept getting worse as the clock ticked by and the loud TV screamed out medical advice.  By the time I finally made a choice to leave, I could feel my chronic pain mounting which I am usually able to put on the back burner.  It actually felt as if I had gone there for chronic pain and I have not seen any doctor for pain for years.  I think that is where my guilt stems from and that is absolutely ridiculous.

I did search for a cure for over a decade.  I did drop out of college for two years because my quest to cure my chronic pain took over my entire being.  I do feel that I lost ten years of my life but that is why I decided to learn how to manage chronic pain naturally.  With that choice, I must go easier on myself especially when it comes to parenting.   I am so far from perfect and have made many mistakes in my life but I know one thing and that is that I am a great mom.  If there was such a thing as a perfect mom, we would be living the life of Stepford Wives and I am sure half of their children are rebelling somewhere in the world.  I want to let go of the guilt.  I want us all to let go of any guilt we feel due to our invisible illness whether that be chronic pain or not.  I did not ask to fall off of my bike and have brain surgery.  I did not ask to live a life with chronic pain.  Neither did any of you.  I am exhausted from being so hard on myself and living in the world of apologies.  How many times a day do you find yourself saying: “I’m sorry.”  We are a generation (especially females) of guilt, feeling as if we are not enough, and saying the two words: “I’m sorry” at least ten times a day.   We are doing the best we can.  Are other people putting pressure on us or are we doing it to ourselves?  We can blame society, our friends, our family but in the end we need to stand up for ourselves and take care of our health and happiness because we are our biggest enemy which is such a shame.  Life is too damn short to live one more second in the realm of guilt.  It is odd, I know my readers are doing the best they can with their invisible illness and I am sure you feel the same about me.  Why do we credit others so much and forget the person that matters more than anyone in our lives: OURSEVLES.