The Rocks and The Box

If I could hold a game of BINGO filled with questions or comments I have received over the years of being ill I can assure you that round of the game would have been mine, hands down. Regardless of my status on the theoretical game of BINGO I always find myself in these typical “elephant in the room” type of situations. I first begin with small talk about the weather or the daily news and once that is over I’m always met a genuine, yet blissfully ignorant question that people tend to be greatly hesitant to ask.

“How have you been doing?”

Honestly (no offence to either party), how does one begin to answer that inquisition? Do I smile, nod, and reply that I’m “fine”? That I had nothing “new going on” and I had “no reason to complain”? Perhaps I should I be forthcoming regarding the searing pain I’m in? The nausea that has me shaking? The anxiety that I’m fighting against so hard just gain control of myself? All while attempting to answer your question with just enough information for you to understand my reasoning, but not enough information to intimidate you. I haven’t quite figured out how to master the balance of the two.

Regardless of whether that day my answer was that I had a good day or a bad day, I’m always an array of questions:

“I cannot understand how you can go through so much and still smile”

“How do you do all of this?” “Is this how you feel every single day?” 

“I wouldn’t be able to be handle what you go through”

How do you stay so strong and positive?”

I never know how to answer.

How do I do it? How can I endure the chaos of life and come out on top? Drama here, celebrations there, grief here, hilarity there, betrayal here, love there. How can someone possibly remain heart strong when ones heart is constantly under attack and loving deeply yet cautiously? How can my body remain strong when it’s being weakend and plagued by disease?

The best way I can explain my coping mechanism is through the analogy of rocks in a box.

Imagine the body as an empty “vessel”, or a “box” and as you go through your day various contributions are out into this box. To make this analogy work, I like to imagine the negative challenges as rocks, pebbles, or boulders and the positive experiences as retracting those. So, you begin your day with a stain on your favourite shirt, you are met with an empty tank of gas in your car, end up stuck in traffic and end up arriving late to your appointment. From there you decide to reward yourself after a good appointment by meeting up with a friend at your favourite coffee shop and having your favourite drink, from there a stone is removed from the box and your load is once again lightened. As you continue your days and weeks this pattern continues; with each challenge you face a stone of various sizes pertaining to the significance of the circumstance is added to your box and some are removed depending on the resolution.

The difficulty in all of this is that one day you may have an argument with someone that can add the rock that leads to a complete breakdown, or you could have the same argument a different day be left unaffected. The significance in this “box” is that you can only carry a load so great, and it can take something incredibly small and insignificant or something great and heartbreaking that can lead to the crumbling of this box and an emotional breakdown. It seems harmless at first, to imagine carrying your troubles as tiny little rocks that can be held in the palm of your hand, but after 10 days of carrying around a load that consistently grows heaver and heavier, and we can only bear so much.

Now picture this empty box as your heart and mind; you can only put so much strain and burden on your heart before it will eventually burn out. You have two eyes and two ears, but only one heart and mind for a reason. We have many, many bones in our bodies, but only one heart and one mind to protect and as boundless as our potential may seem there are limits to the extent in which we can stretch ourselves.

So, how do I manage to endure all that I have to? Some days bring heavier burdens to bear, and some bring great redemption but the only way I can surely get from one moment to the other is by turning one stone over at a time.

Screen Shot 2017-03-23 at 10.34.29 PM

Advertisements

When the Community Crumbles

From the very first days of our lives, we have been taught to appreciate the value of the communities that will aid in building our character as we grow and develop. These associations build our morals and perspectives, the things we pride ourselves on and the people we become. Paradoxically we are not always able to choose the communities we belong to, sometime the communities choose us.

Years ago I became a member of a coalition I had no intentions to affiliate with let alone belong to. As an early teen, I was diagnosed with a number of complex rare conditions that unwillingly made me a member of the chronically ill community.

For a very long time I was discouraged and struggling to face the mind numbing solidarity that accompanied chronic illness. I felt so alone, but one day I found a group of peers from all places and walks of life facing similar if not the same conditions and that’s when I finally felt welcomed into the chronically ill community as opposed to feeling forced to be there.

I quickly learned of the diversity within our little corner of the world. For some  members they may have been facing this for a matter of months, others a few years, but for some this had been an entire lifetime. My initial impressions of the community changed quickly as I learned that regardless of the matter of time that has passed, the conditions we suffered from, the outlook we had, the treatment we endured, the pain we felt, the doctors we saw, the celebrations that occurred when things were moving in the right way and the support that we were surrounded by when things get tough. Collectively, we were making sense of a nasty and unfair fate that we did not ask for. We all became intertwined with this delicate, beautiful ribbon that bound our hearts and souls and created an understanding that is simply unsearchable. An understanding that can only be achieved when you have lived and experienced our reality. An understanding that came with comfort and warmth. The irony in it all is that we were all connected by something we wish we never experienced, our illnesses…but despite all the suffering that our illnesses brought it brought us even closer. So long as we were tightly bound by that ribbon, there was nothing that could keep us down.

Despite how strong we were as a group, how invincible we were when facing adversity together, there was something that we struggled to face. Our strength and positivity did not leave us oblivious to the darkness that was at each of our door steps. We know our illnesses make us more vulnerable, we know that we may not be given as many days as the next guy, we know that our odds and risks increase with each passing day but that knowledge does not prepare us for when one of our own leaves.

While it leaves us aching to our very core to know that someone we loved is no longer with us, we breathe a sigh of relief as we know the suffering that they endured is over. When someone in our family passes, the ribbon that connected us becomes unbound. We lose our stability, we struggle to understand and not only do we ache missing our friend we fear for our own reality…the reality that this could have been any of us. There aren’t many words to describe what it feels like to lose someone you love, and very few to say what it means to lose someone who understood your deepest struggles. A soul gone too soon, a soul that endured far too much struggle and pain, a soul whose beauty cannot be put to words, a soul that had been loved and loved deeply.

It’s hard for some to understand how we can miss someone we may have never had the privilege of hugging in person, but in the chronic illness community the distance that is so physically great between us becomes so insignificant. Their presence in our lives is an integral part of our days, the conversations and laughter we share over concepts many wont understand or the comfort that is generated through pain that others are oblivious to is the glue that keeps us together.

The ribbon does not become intertwined again easily, the silence from the absence of our friend is ever so loud and instead of their physical presence completing our group it becomes their memory that binds us together. It’s a friendship that is misunderstood, but a gift to understand and I’m not sure there’s another way to put it.

At the end of many days I felt myself exhausted and often more discouraged than when I first started my day in trying to come to terms with what I endure..but those girls, my sisters, help me make sense of it all. Each time a member of our family passes away a piece of our hearts goes with them too, but the beauty in all of this heartbreak is that to mend our broken hearts we use the memory of those we lost, those too incredible for this world.

To our sisters that have passed – you have made our lives richer, you have taught our souls to find deeper meaning in our days, encouraged our hearts to love deeper and reminded to live our days richer. So long as we live our days, we know we are no longer fighting for ourselves but for our angels that surround us. The ribbon that binds us together may have originated out of illness, may be tested by fate, but will never be broken by death. Our ribbon will always remind us of those who have stood by us, those we have loved, and those we have lost and the love that brought us together.

Screen Shot 2017-03-23 at 10.34.29 PM

The Hidden Benefits of Ketamine Infusions

It was in October of 2014 that I dislocated my shoulder after falling down the stairs while working. I was a nanny to a sweet little girl who was just learning to walk, and in an attempt to prevent her from falling down the stairs I (fortunately) took the blow for her. After a trip to the emergency room, we concluded that my shoulder would not permanently relocate without surgery, so we scheduled a stabilization surgery for early 2015. Thankfully my surgery went seamlessly and aside from some complications with the nerve block and uncontrolled pain, my shoulder was back in its socket and I was ready to begin my 6-week healing process.

Two weeks after my surgery and discharge I noticed a red patch beginning around my incisions that came with a great deal of pain. That red patch kept growing and the pain intensified to the point of me being unable to touch the area without wanting to scream. After another trip to the emergency room, I was put on a 6-week course of antibiotics for a suspected infection. When said infection didn’t respond to the antibiotics and there was no reduction in pain and sensitivity we knew we weren’t dealing with an infection but the question remained as to what it was.

This uncertainty warranted a visit to a neurologist to investigate my nerves, I thought the worst I could face was irreversible nerve damage; I was wrong. I walked out of the office that day with a diagnosis of Complex Regional Pain Syndrome (CRPS) or Reflex Sympathetic Dystrophy (RSD). CRPS is a progressive nerve condition that occurs after an injury, it tends to be localized to the site of injury but can spread throughout the body; it is considered to be the most painful disease known to science. CRPS occurs when the nerves at the site of the injury or trauma continue to fire signals that are processed as pain despite the healing or resolution of the issue. In my case, I am affected from my right elbow throughout my right shoulder, the right side of my face, and across the top of my back. This disease has a mind of its own. I have little to no control over the pain and it is a pain that I’ve only felt in nightmares. My arm turns shades of red and purple specifically around the areas where I’m sensitive, it can sweat while the rest of my body is shivering or get goosebumps when the rest of my body is sweating. A common symptom with CRPS/RSD is known as allodyna; which is when a painful response is interpreted as a result of non-painful stimulus. Because of the allodyna, simple things like wearing clothing, taking a shower, getting goosebumps, even wind blowing against my arm have become nothing short of torturous.

The pain CRPS caused me couldn’t be dulled by even the strongest narcotic, even medications specifically designated for nerve pain couldn’t touch the levels of pain I felt constantly. I was put on doses of narcotic medication that would have sedated someone three times my size but still left me crying in pain. The pain would become so severe that the muscles in my arm and hand would contract and tremor, and at times my entire right side would contract. To be honest with you, there are many nights that I lay in bed and cry until I fall asleep because I have no other option to soothe the pain. I worked with a pain clinic in one of the most coveted hospitals in Toronto to gain relief. But relief was a struggle that I wasn’t sure we were able to attain until my doctor suggested I enter a study being held: a ketamine infusion.

Ketamine is a strong dissociative drug that was a popular party drug in the 1970s through the 1990s because of its mind-altering effects that can result in vivid dreams, hallucinations, and out of body experiences. Aside from its use in the club scene, it’s main use is in sedation of animals and humans and fast acting pain relief. But the uses and potential it has in biomedicine is still being discovered. Research has revealed that ketamine’s analgesic effects are specifically beneficial to patients with neuropathic pain, patients like myself with CRPS. It is given intravenously as that is the most effective route, but there are different practices and protocols depending on the doctor that is administering it. In Toronto, I received 5 days of high dose ketamine followed by 6 weeks of oral ketamine. I truthfully went into the experience terrified, I do not like the feeling of being “loopy” and I was terrified of hallucinating. Thankfully I expressed these concerns to my doctor who made sure I would be comfortable throughout the process. I arrived at the hospital at 7 am and would be done with my infusion for the day by 3 pm. My ketamine infusions were done outpatient so I had my infusions in the Post Anesthetic Care Unit with a one-to-one nurse; I would go home for the night and return the next morning from Monday to Friday. Each morning we would begin with medications to combat the side effects and the infusion was started. I had some vivid dreams and hallucinations the first day but was easily corrected with additional medication, and from there it was smooth sailing. I began on Monday, by Wednesday I noticed a drastic change in my pain and by the end of the week I was able to physically touch my arm—something I hadn’t been able to do for almost an entire year. As time passed I gained more and more relief, I was able to wear heavier clothing and take showers again which seems small to most people but were huge victories for me to gain back.

Four months after my first ketamine infusion, my CRPS relapsed and spread further into the right side of my body. Since my first infusion in January of 2016, I have had two additional treatments. These ketamine infusions are the only thing relieving my pain short and long term, and allowing my life to continue as an independent young adult. I never expected that my relief would be held within the realm of a medication that people use as contraband outside of a medical setting. Regardless of the opinions of the rest of the world, these infusions are bringing me relief from the incessant pain I face every day and that’s a wonderful reminder that beauty is in the eye of the beholder. You may not understand my pain, my disease, or my medicine, but at the end of the day I am the one living in this body and if I can start and end my days in less pain… well, that’s more than enough for me

The Unspoken Truths

There is something so divine about being able to love and support someone as they overcome adversity. There’s a certain pride that comes with supporting someone in their most intimate and challenging moments and seeing them through each of those. The magnitude of those feelings are amplified when you experience this with someone near and dear to your heart. These journeys are filled with a rollercoaster of emotions; some difficult, some triumphant; regardless they are written in stone and the degree of the concrete can make some moments unforgettable–even if you want them to be.

You develop a new type of hope, one that leaves you feeling vulnerable and naive to any sort of possible outcome but the favorable one. It’s a hope that teaches you a new lesson, each and every time you experience it and it is different with each individual. There is almost a certain err of ignorance, a blessed one, that encourages you through each trying moment. But it is a beautiful one–one that reminds you how precious life and love are. It encourages you to savor every moment and every memory, to embark and acknowledge the little things much more than we already do. It reminds you of the significance of the simplest, most precious things, relationships and people in our life and teaches you how to fight and love fiercely and unapologetically on their behalf and with them.

With each soul and heart I come to know and love, I develop a different fondness for each of them. Much like a snowflake, no two emotions nor souls alike. There are moments that I remember distinctly regardless of how much time may pass, there are characteristics and quirks that remind me of them each day, there have been countless celebrations and victories but there have also been unspeakable losses and dark memories.

Despite their uniqueness and individuality there is a certain familiarity, an uncomfortable recollection that can flash before my eyes. It’s the familiarity of the lump creeps up in the back of your throat and leaves you feeling numb both physically and emotionally. It’s the private, unspoken familiarity that we witness but dare not acknowledge. It is triggered with the slightest word, or experience and can leave you in a state of reliving prior heartbreak. Much like loving them, each parting goodbye is unique and profound but the devastation never grows familiar nor does the goodbye.

Once you enter a world of struggle, you gain an instant connection with those that experience similar journeys and that connection makes it too powerful to look away. You know that your loss does not make you any less aware of the struggles that still remain, but rather draws you closer. There’s an obligation to change the injustice you face, to challenge it and that can be sought in the victories and memories of others–a beautiful exchange. But the connection that is created in strife and loss is one we wish we did not have, but cannot deny. With each soul that departs, and each goodbye that passes that familiarity can be crippling. It brings me back to the moments that I felt the deepest sorrow, and makes that pain just as real as it once was. I realize that that pain never really became any less real, or less profound. I relive each and every emotion, each and every second. I remember actions and reactions, I remember hurting to the depths of my core over and over again it is a feeling I’m desperate to escape but fall victim to each and every time I experience loss. Each and every time I say goodbye, I recall each and every time I said goodbye and I hurt just the same.

There’s times I want to run as far away as I can from it, many times I wish I could shake it from my mind.  Each memory remains vivid, and each void remains prominent and there are times where salt is rubbed on a wound that never seems to heal. Though you may not see it, we break too. Though it may be familiar, it never hurts any less. But I know that this pain remains familiar because it becomes my reason for doing and being and regardless of the pain I feel there is always great redemption in the soul I was blessed to know and love. The soul that taught me countless lessons, provided me with precious memories, brought laughter and joy. There is no soul that goes forgotten or unloved, nor missed or wished back. I try to remind myself of how lucky I am to have known someone who makes saying goodbye so difficult, a bittersweet blessing. However just as the trees do, we will break down and be led vulnerable but I will bloom, grow and rise through each coming season of life and love to my full capacity for those that have come to pass.

Screen Shot 2017-03-23 at 10.34.29 PM

Blessings in Brokenness

I grew up a Roman Catholic. My faith was always strong and reinforced as I attended a Catholic school for the majority of my school career. It wasn’t until my path changed drastically that I really began to see the hope and comfort that comes with believing in the Lord.

In attempts to bring comfort to unfortunate or unexplained circumstances, people often justify these things with the saying that God’s work always has a purpose, or that everything happens for a reason. However, when we look at the other side of the coin, how can we justify that Someone who is filled with such greatness can allow such profound suffering to occur each and every day? Some may beg to differ, and even I challenge myself regarding this some days, but I believe that there is a purpose for the hardships we encounter in our lives. They may not always make sense, but they do exist.

I’ll start off with the most cliché (yet incredibly valid) response: how can we learn to celebrate victories, without enduring the hardship that comes before it? If I did not endure days of pain, I would not learn to appreciate the days where I encounter relief. If I did not feel exhaustion to the core, I wouldn’t learn to make the most of the days that I have the energy to function. If I never found myself at rock bottom, I wouldn’t have the courage to look up and find solace in the promises of heaven. I don’t think I would appreciate my progress if I didn’t have to fight with everything in me to get there.

By no means am I saying that my faith in God alone is enough to get me through each and every day, because truthfully it isn’t. Do I believe that God is responsible for all of my ailments? No, not in the slightest. But I do believe that He will see me through. There are many days that I cry, and scream, and get angry at God because I cannot clearly see the path that He leads me through. It has encouraged me to seek out His blessings, no matter how minuscule they may seem. Sometimes finding those blessings is easy, especially in the little things, but there is a big hurdle that I often find blinding me and preventing me from finding any positive aspect to my situation.

I have spent many hours at the mercy of my illnesses and conditions and prayed relentlessly to find some sort of silver lining in all of the struggles I encounter, both mental and physical. I have pondered the notion of finding some sort of solace in these vicious conditions and it wasn’t until recently that I was able to find the blessing in being ill. I’ve found that the questions I put to God are answered in subtle, yet kind ways.

There was one night where I was so angry. I’d been in excruciating pain the entire day before and I was so beyond exhausted; I couldn’t get a moment of relief in to be able to sleep. It was a day that had been filled with disappointing appointments, stressful encounters, profound loss – all around just a bad day. I wondered how God could stand back and let me end my day feeling so hopeless and alone. But I realized, His gift to me wasn’t ending the day on a positive note but in the promise that tomorrow will be a new day; a new day filled with new opportunities and new possibilities, a day to discover more and make further progress. Each new day we are blessed with us a fresh start and after a bad day I can’t think of anything more redeeming than an opportunity to seek out grace in the good and the hard.

Again, on a day where I was completely drained of every ounce of energy, bombarded by bad news, in excruciating pain and feeling lost in the system, I found myself shaking my fist at the Lord. How can He expect me to make any progress in the state that I’m in? How can I be destined for greatness when I’m so incapacitated by these illnesses? Again, the realization came that there is a light in all of this. Some may say that having a chronic illness is as bad as it can get…a life that is not promised without illness. But, you know what the beauty in all of this is? The beauty is that as we grow, so do our chronic illnesses and the things that we struggle with today may become tomorrow’s normal. Realistically: that is unfair. No one should be confined to a body that fails them day in and day out, and no one should settle for a life in pain, but overtime that pain becomes bearable. I grew up doing things and feeling things that I assumed were normal, I knew nothing else but the symptoms that we now associate with my conditions. That ignorance is pure bliss in situations such as this and, realistically, that normalcy is all I can ask for. 

At the end of the day the realization is this:  I may be weak, but my God is strong. I lack many things, but I have Him. Though I am tired, I know He will never grow tired of loving me. And that…well that’s enough for me to get through the most difficult of days and the most beautiful.

Screen Shot 2017-03-23 at 10.34.29 PM

#SimplyStrong: Taylor Brianne Filorimo

Here we are again witnessing another January 30th; my best friend Taylor’s 21st birthday. 21 is a milestone birthday for many, it’s a year where all the boundaries that were created for you as a child diminish, it’s the opportunity to live in this world and be considered an adult all around the world. In a perfect world I would show up at her door with a bunch of flowers and some cupcakes, we would go out to dinner and I would buy her that first martini.

But this isn’t a perfect world, because I’m celebrating my best friend’s birthday without her. Not because she lives in the US and I’m in Canada, but because cancer took her from this world at only 16 years old.

In August of 2009 Taylor and I became acquainted over social media, we bonded over our mutual love for Justin Bieber but our connection was growing to a deeper level. Shortly after we began talking Taylor was diagnosed with Renal Cell Carcinoma, a rare form of kidney cancer normally found in middle aged men. Taylor’s cancer is resistant to chemotherapy and radiation so she was dependent on the clinical trials the country had to offer and surgery when applicable. She visited the National Institute of Health for an experimental treatment where they determined she was the youngest documented case of Renal Cell Carcinoma. Her journey was long and gruelling; her cancer spread to her lungs which resulted in a major lung surgery removing 5% of her lung. When her cancer proved to be relentless, Taylor’s doctors decided to put her on an experimental chemotherapy trial. While the cancer remained resistant Taylor suffered the severe side effects from chemo that made her incredibly ill, but as she did with everything Taylor endured all the suffering with grace. Throughout all of this doctors had told us that Taylor’s cancer was terminal, we knew that one day the cancer would take her but we didn’t know when. All we could do was keep her comfortable, and increase her quality of life. That wasn’t our key to give up, that wasn’t enough to keep her down so long as Taylor was fighting so were we.

tay3

Throughout our friendship Taylor and I communicated via social media and video chatting and despite the physical distance between us and our illnesses trying to tear us down our friendship flourished. After almost 3 years of constant communication and video chatting my family and I travelled to Tennessee to finally meet Taylor and her family. It was a moment I will never forget, I will never forget our first hug or the days we spent together. As much as Taylor and I enjoyed each others company and created so many memories, we also had devastating conversations that I never would have imagined having with my best friend…definitely not at 16.

The end of our visit came quickly and it came time to say goodbye. We made plans to come back a few months later, but there was a feeling in my gut that I couldn’t ignore. I remember stepping foot into our hotel room and collapsing onto the bed in tears and sobbing into my moms arms, that was the most difficult goodbye I had ever said.

On September 4th, that heavy feeling in the pit in my stomach became a knot in my throat. Taylor had suffered a seizure and home and was life flighted to the hospital in critical condition. I was losing her. I remember that night more vividly than I would like to, I remember being on my knees praying to God to spare her…to give me another visit, to let me have my best friend. There were too many people that loved her, so many things we need to do together—things we promised we would. I wasn’t ready to live without her. The next day at 12:54 pm I got the call I dreaded, one that I never could have prepared myself for: my best friend, my Tay Tay, my sister, my other half was gone. Even writing this brings me back to that very moment, I rushed out of class and into the bathroom and was sick to my stomach. I panicked and ran to my car barely able to breathe, all I could think to do was call my mom.

tay6“She’s gone. She’s gone mom. Taylor’s really gone. I don’t know what to do. What can I do? She’s gone. I can’t believe she’s gone”

Then I cried. I cried so hard I couldn’t breathe; I have only felt that devastation a handful of times. I sat in my car screaming, angry at the Lord for taking her from us at only 16. Angry at myself for not being there with her. Angry at her for leaving. Angry at the reality she had to face. Angry that I waited so long to go and see her. I drove home and as soon as I saw my mother I collapsed in her arms in hysterics. I couldn’t do anything but cry, for a very long time my broken heart was all that I could focus on. I quite literally ached to hear her voice again, to know that this was all a nightmare or a mistake…this couldn’t be real, not my Taylor.

Despite the pain I have endured missing her, the past four years have brought great insight. Taylor and I leaned on each other for support when it seemed that the rest of the world didn’t understand the struggles we were facing. Her friendship was, is, and will always be one of the greatest gifts I have received.

Even though its been over four years since she passed away, her selflessness and courage still humble and inspire me. There are many days in each year that trigger an avalanche of every emotion a human can feel, days like the anniversary of her passing and her birthday. I can only imagine the incredible person she would be today, but I am so proud of her that legacy that continues to live on through the Live 4 Tay Foundation that provides support to families with critically ill children.

When I think of Taylor there are thousands of words that come to mind: she is kind, caring, loving, intelligent, selfless, strong, considerate, respectful, passionate, driven—you can see my point. Each and overtime I tell Taylor’s story there’s one phrase I will never say in her regard, Taylor did not lose her battle with cancer. She won this battle in every regard; not only did she fight cancer but she managed to live, love and laugh despite the pain and harsh reality she faced. In her journey she didn’t lose anything but gained the admiration and respect of peope worldwide.

tay4

However in all of her selflessness, I grew selfish in mourning her passing and wishing her back, I begged God to give her back to me because I wasn’t ready to lose her, I didn’t get to say goodbye. That’s when Taylor’s wisdom reminded me to look on the brighter side of this situation; she was no longer tied to an IV pump, she was no longer in pain or suffering, she didn’t have to endure the side effects of this vicious disease. I picture her playing softball with her long brown hair, laughing without a care in the world and sometimes that eases the pain of missing her so deeply.

Taylor’s mom says “we can’t control the cancer, but we can control the journey” and instead of mourning her loss on her birthday, I will celebrate her magnificent life and honour the beauty she contributed to this world. On Monday January 30th, as I do every year, I will be releasing some lime green balloons with messages written on them, making sure to send my birthday wishes her way. I hope you’ll join me and #Live4Tay.

Happy 21st birthday my beautiful friend, you are missed deeply, loved unconditionally and never forgottentay1

#SimplyStrong: Emma Maria Neagu

Emma was born on July 25, 2003 and from that very day that she was born, it was clear she would accomplish great things. She grew up as an active, healthy little girl with her mom Claudia, her dad Emil and eventually her little sister Lizi. When Emma was 3 years old she began taking gymnastics and quickly fell in the love with the sport. She began with only one class a week, however by the time she was 11 she was working in the gym for close to 16 hours a week. She was placing at exceptional levels in provincial level competitions, as well as club level competitions.  At one point in time Emma was balancing school,screen-shot-2017-01-13-at-10-07-42-pm competitive gymnastics,  and dance and managing to excel at each of those. In April of 2015 after a prestigious gymnastics competition, Emma made the transition to focus on dance instead of gymnastics and practiced in acro and jazz classes on the part-time competitive team at a local dance studio. She truly did the best, and was the best in everything she took part in; she was a valued member of each team, and family she was apart of.

One evening in the beginning February of 2016, Emma was at home practicing when she fell and injured her knee. In the days after her fall she noticed increased pain in her knee but when ice didn’t do the trick as it had before, they knew something was different. Throughout all of the pain Emma continued dancing and competing on her injured knee, until one day when the pain became severe and was accompanied by swelling and hardening of the area. After an X-RAY and examination of a doctor, it was concluded that there was no broken bones and she was to continue her regiment of ice and anti-inflammatory medications. Despite her best efforts the swelling and pain continued and during a routine visit to her pediatrician it was concluded that the swelling and hardness in her knee was a hematoma. A hematoma is an abnormal collection of blood outside of a blood vessel. She was told to stop all of her extra curricular activities and allow time for her knee to heal, in the mean time an ultrasound and physiotherapy were prescribed to help It heal. Two weeks and four physiotherapy sessions later, Emma’s doctor received the results of the initial X-RAY and explained that there was a strange image around her femur bone that could not be explained by a fall. The results were sent to our local children’s hospital for a second opinion, it didn’t take long for them to get a call back. While she waited Emma participated in a dance competition on her swollen and hardened knee, her first and only that year as she refused to let her team down.

In mid-March (2016) Emma went to the hospital for her appointment. Emma, her mother and father entered the hospital intending to see an orthopedic specialist but instead found themselves in the cancer clinic where the heard the word “osteosarcoma” –a form of bone cancer. After an MRI, a biopsy in the following days the doctors confirmed their worst fear, Emma had cancer. When Emma tells this story she says, “I thought the worst I would hear was a broken bone, cancer never crossed my mind”. March 28th, 2016 brought the final and official diagnosis that Emma’s “hematoma” was actually a cancerous tumor along with the devastating shock that 2 small additional tumors were found on both lungs–indicating that the cancer had spread. Here we have a 12 year old girl, and her mother and father who had known nothing but a healthy, active, passionate and unstoppable little girl having to swallow the news that she not only has cancer in her bones but in her knee as well.

“Despair–again, shock–again, denial–again. This can’t be true” – Claudia, Emma’s mom

screen-shot-2017-01-13-at-10-12-31-pmEmma’s treatment protocol included 16 rounds of chemotherapy, after facing the devastating reality that she would lose her hair she was faced with another decision…a decision no family, nor child should ever have to make. Emma’s femur bone and knee joint needed to be amputated, she had a few options for surgery including a traditional amputation that would include inserting a metal rod as her leg or a less traditional limb sparing amputation known as a rotationplasty. In Emma’s words, “a rotationplasty is a surgery where they removed my tumor and knee joint where the cancer was; then used my healthy tibia bone, rotated it 180 degrees backwards and reattached it to my remaining part of my leg (the upper thigh). Now my ankle faces upwards and acts as my knee. When I put my prosthetic on and flex my foot, its like bending my knee; and when I point my foot it straightens out my prosthesis.” This decision didn’t come easily for Emma’s parents, but for Emma she knew instantly. The rotationplasty was a perfect decision that she made because it would allow her to dance again; it’s not a traditional amputation, it’s not something you see every day but Emma did it for no one but herself and her love for dance.

After her rotationplasty chemotherapy continued, but those rounds of chemo did not come without struggle, side effects, and difficult symptoms. Emma lost 5 kg during her first chemo rounds and required an NG (nasogastric) feeding tube to help supplement her with nutrition. Her taste buds changed drastically making even her favourite foods taste like metal, it was difficult to gain weight let alone eat when everything tastes vile. In between completing her rounds of chemo, Emma had her two lung surgeries to remove the tumor metastasis. Emma faced both surgeries with grace, poise and an optimistic attitude–and that grace paid off. Despite some unexpected hurdles during the second surgery, Emma got through each experience and came out stronger. I know it is cliché, but it is true in every sense of the phrase in her regard. Emma truly takes and has taken every obstacle and experience and treated it as an opportunity to learn and grow from, instead of to simply overcome them.

nomochemoFinally, on December 30th Emma had her final chemotherapy treatment. She celebrated in her hospital room with a few of her favourite visitors, her central line was removed and Emma is back to resuming her life as the active, passionate, intelligent young woman she is. Only days after having her line removed Emma was already swimming and back in the gym that she grew up in training to get her strength back for dance, and for life. Emma is still in the process of getting fitted for her prosthesis; she needs to go through three models accompanied with extensive physiotherapy for each to gain stability and learn to walk, run, and eventually dance using her prosthetic leg.

When I first met Emma and her mom at the hospital, one of the first things she said to me was that everything happens for a reason and that was their mantra throughout Emma’s treatment. I find so much beauty and importance in that because they used it to remind themselves of the beauty that can exist even when your world crumbles. I’ve spent so much time with Emma since meeting her only a few months ago, and I find myself in awe of her every word. There are not many adults, let alone children, that act with the dignity and grace that she possesses and understands. She truly has learned the hardest lessons life has to offer, in the most poised manner. I have nothing but love and admiration for Emma, for her strength, for her grace, for her willpower and passion, for her love for life and those in her life, and her understanding that difficult paths will lead us to beautiful destinations. At the end of the day, Emma is not just a girl who had cancer or an amputation; Emma is a daughter, she is a friend, a cousin, gymnast, a dancer, a fighter, a lover, and a courageous human being that this world is blessed to have in it.

Emma, you are a reminder of all things good and beautiful in this world and a reason why those things exist. You are a gift to me, to us, to this world and I know it has magnificent things in store for you. I’m humbled by your courage, inspired by your wisdom, and honored to be your friend. This world is yours.

screen-shot-2017-01-13-at-10-12-43-pm

 

BLOG SIGNATURE

Life According to Anaphylaxis: Mast Cell Disease

I remember the day I had my first anaphylactic reaction, in fact I remember nearly every reaction I’ve had. They’re painfully difficult to remember, but nearly impossible to forget.

I was going to study at my tutors office, so I grabbed some Starbucks and an advil for my pain and sat down to get to work. I remember my arm being itchy, I scratched and scratched and before I knew it that tiny itchy spot was a hive and that hive turned into multiple. Things happened fast and before I knew it my lips were swollen and there was a tingle in my throat. I thought that was as bad as it would get.

Then came my reaction to morphine, in a desperate attempt to calm my pain the emergency room nurse gave me some through my IV. Within minutes my chest was hurting more than I could explain, it became hard to breathe, my heart was racing and pounding in my chest and my chest tightened with every beat. I remember doctors rushing into my room, a round of epi failing and a second following an oxygen mask held over my face, and pure utter chaos. I remember thinking to myself that there couldn’t possibly be another reaction, that it couldn’t possibly get worse than this. Little did I know, that things could get worse…and this was only the beginning.

I fell in love with dance when I was little, I hated the recitals but I loved dancing. Eventually and inevitably I ended up dancing competitively and it became my life–literally and figuratively. I spent more time at dance than I did at home, I spent more time dancing than I did walking. Dance was something I could rely on when there was nothing else, it was my outlet of all the stress and frustration I experienced in being sick. It was my everything, I attribute it to helping me heal…to healing me. So you can imagine my devastation when I started to feel my throat tingle and heart palpitate in the middle of a number. Before I even finished the number my dance teacher was already pointing out how red I was turning, I’m sure you can imagine where this is going. That was the last shot. That was when I surrendered everything to my illnesses. I remember getting home from dance after another failed attempt and collapsing to my knees. I know that sounds dramatic but I truly could not fathom losing dance, the only thing that held me together and there it was happening right in front of my eyes rendering me utterly helpless.

Shortly after I was diagnosed with chronic urticaria and exercise intolerance we were led onto the path of a vicious disease known as Mast Cell Activation Syndrome (MCAS). Mast cells are essentially the cells responsible for causing allergic reactions, they release histamine and other mediators that are related to inflammation and reaction. In my body, for whatever reason, these cells are triggered by the most minimal and uncommon of triggers. We discovered that not only was I triggered by food and medications, but by extreme temperatures and temperature changes, emotions like stress or anxiety, scents (food related or perfume/cologne related), right down to my clothes and detergent. I was reacting to anything and everything, and as those reactions increased I had to sacrifice more and more things that I loved.

The beach, which is, was, and always will be my safe place, is somewhere I can only seldom visit and only under a sun hat, umbrella and 80 SPF sunscreen.

Strawberries are an absolute no-go in any way, shape, or form.

The list of medications I have to treat infection, or pain, or discomfort is dwindling.

I’m growing increasingly intolerant to the mildest of scents that used to bring me comfort, like vanilla candles or cookies baking.

Crispy French fries, or chicken strips….a classic, but a goodie.

The feeling of your throat closing in on you, your face swelling, your body itching and burning, the way you use up all of your energy trying to gasp for air in between the wheezes, the fear of anticipating the burn of an epi-pen, but craving the relief that spreads across your chest almost instantly–the fear of wondering “what if it doesn’t work this time?”  The fear that consumes me every time I step out of my safe bubble that is “home”, every time that I put food to my lips, every time someone enters my house, or I enter theirs. The panic I feel when I walk into a cloud of cigarette smoke, when I start to shiver from the cold or sweat from the heat. The gamble I take when I take a medication that was safe the day before, but may not be safe today because that is the gift of MCAS. Those intense emotions and experiences never escape my mind, they invade my dreams and consume my memories. Sometimes I swear I can feel my throat swelling…or that my face is flushing; believe it or not sometimes I dream of being intubated and can swear I feel that tube in my throat.

In this crazy whirlwind of losing things I love because of a disease that I can’t control, I’m reminded of the infinite number of blessings I’m surrounded by. I’ve learned to appreciate the mere existence of all that I love, and to have that passion be enough to get me by.  It took a while (and I still have my days) to admire from afar and not hurt and grieve that I couldn’t be apart of it, but that day still came. And I am so damn grateful to have that bit of sunshine on the days where I’m reacting to my own hormones.  MCAS is a deceitful, selfish, consuming disease. It pops up at the most inconvenient times, it will puzzle you and doctors, it will require a lot of Benadryl but it’s taught me to appreciate the calm and beauty that remains despite all that this disease has tried to take from me.

That’s enough to get me throughout each and every day

Screen Shot 2017-03-23 at 10.34.29 PM

Hand in Hand: A Letter to My Sisters

Girls,

There’s so much I want to say, but I want to start by telling you how much I love being your sister. It has been such a blessing to watch you grow and discover this world, and see you develop your own unique but distinctive personalities. We don’t always see eye to eye, but you both mean the world to me. I’m the oldest of us three, that means I technically should be “wiser” but I know that that’s not always the case. For the better part of the last few years you two have been my rocks; you’ve never left me when things have gotten messy, you know how to flush my central line, you know what to do to avoid hurting me, you’re there for snuggles in my hospital bed, you know the names of my every condition, and you love me despite them. It seems like this lifetime has been filled with you taking care of me, and I’m sorry for that. I can’t tell you how many nights I spend worrying that you don’t see me as your older sister but as your sick sister and that terrifies me. It means that I’ve failed.

It’s written in the rules of every TV show, movie and book…the older sister is supposed to be the one to experience things first. I’m supposed to be telling you all the ways to avoid making the same mistakes I did, I’m supposed to share in the excitement of all of the “firsts” that you encounter and giving you advice on how to navigate them. We should be talking about crushes on boys, and drama between friends. I should be helping you grow into intelligent, caring, independent young women and instead I’m only watching you do those things. I’m watching you turn to others in the circumstances that you should be turning to me, but that’s not your fault…that’s mine. You are deserving of advice and counsel, of support and comfort and I’m sorry that I can’t be the one to do that. We’re at the point where you girls are starting to reach the milestones that I haven’t yet, the things that I’ve put on hold. You’re dealing with choosing careers and making post secondary education plans, you’re navigating through your first job, you’re entering high school and going to parties. It makes me so happy to see you both discovering the things and people who make you happy, the things that matter to you most but I desperately wish I could do more than just watch. I wish I could be holding your hand and walking through this with you, easing your fears with stories of my experiences, giving you tips to make things easier. Believe me, I want nothing more than to be able to do those things but sometimes my pain gets in the way.

Not only my physical pain, that’s not what I mean this time but my emotional pain, anguish, embarrassment. Sometimes the pain of not being able to do those things for you can hurt me more than any pain I’ve ever endured, and when I’m faced with that I turn away. There have been many, many, many nights that I’ve cried until there were no more tears to cry because of how I’ve failed you. I’m so sorry, I’m so, so sorry that you two have had to grow up without me. I’m sorry that I haven’t been the big sister I should be. I’m sorry that I’ve created this life for you, one where you’ve had to give up huge chunks of your life for me. I’m sorry for the countless holidays you’ve spend by my bedside in hospital, for all the happy birthday’s we’ve sang in a hospital room, for the time you’ve had to spend without mom or without dad so I could have them with me. I’m sorry that you’ve had to depend on each other, instead of me. I’m sorry that you’ve had to take care of me the way that I should be taking care of you. Sometimes that pain leaves me really angry and ashamed, and I’m sorry that you get the brunt of that. I just wish I could be better for you girls, because you deserve that–you don’t deserve this.

If my love alone could change the reality we’ve had to live, we would never be faced with the adversity that we have. I will spend every single day for the rest of my life working to be, and wishing I was the sister that you both deserve. I’ll never forgive myself for all the days that I wasn’t. As much as it pains me to watch, it fills me with so much pride to see you accomplish the things that I haven’t been able to. Please know that I am, and always will be your biggest fan. Even though I can’t offer you advice through these milestones know that I am always here to listen to and cheer you on through them. I’ll always be here to love you through them.

Lord knows that I always have something to say, or advice to offer about things (even when it’s not called for) but if there’s one thing that you listen to please let it be this: you both are powerful beyond measure, you have so much to give to this world and so much to discover and even though the world may not always be kind to you in return…you will always have a big sister that loves you more than you can imagine. Even in the moments that you doubt it, and all the times that I haven’t said it I do. I love every single part of you and characteristic you possess, even the quirks that drive me crazy. I may not always be present, but I will always be thinking of you and cheering you on. You both have given me the greatest gift I could ever recieve, and that’s being able to be your big sister. I’ve learned to love and forgive, to endure and perservere, to stand my ground and appreciate the little things. You’ve reminded me of what’s most important in this world and that’s the love and laughter that is within the walls of our home.

I am so grateful for your love that remains constant in my life that’s filled with so much uncertainty. I love you girls more than you will ever know.

Always,

Your big sister

BLOG SIGNATURE

2017: Acceptance

Being chronically ill makes life unpredictable, that in combination with the unpredictability of every day life is enough to send this control freak into panic. Every year, people look at the new year as an opportunity to begin a new lease on life; resolutions are coupled with promises, goals are set, change is promised…the whole shebang! Likely, at least for me, those things last a day and I’m back to my old ways. If I’m being honest, sometimes hearing these resolutions and setting them can upset me.

“I want to lose weight” – I’d really like to gain or at least sustain and maintain my weight

“I want to stop drinking so much” – I’d really like to be able to drink, not alcoholic but just enough to stay hydrated.

“I’ll work out more” – seriously?

I can grasp at my attempts for resolutions. I can make them until I’m blue in the face if we’re
being honest; but when I fail at keeping up with those resolutions due to circumstances beyond my control the guilt overwhelms me. So I began a new tradition, one that makes me happy and is attainable. Instead of making a resolution, I choose a word to help me navigate the year. Think of it as a pair of glasses, this word becomes my glasses and I do my best to view the world and my circumstances through the eyes of this word. For 2017 I chose the word acceptance.I’m choosing to accept my circumstances, and learn to live with them instead of disputing them and fighting against them. I will accept my abilities and accept the things that I struggle with. I will accept myself, my body, my conditions, my emotions. I will accept my thoughts and opinions. I will accept my reality instead of comparing it to what I’d like it to be. I will accept that my dreams may not be attainable right now, but have faith that they will be attainable in the future. I will accept the people that make an effort to be in my life, and accept those that don’t feel I have a place in theirs. I will accept the reality I face, the experiences I endure, the pain I feel, the limitations I am held back by. I will accept and endure the emotions I feel as opposed to disputing them. I will accept that God’s plan for me is different than those of my peers. I will accept that I am still important despite the detour my illnesses force me to take. I will accept that some of the goals I make will not be attained, and I will accept and allow myself to mourn and grieve that. I will accept that my life is carried out in a manner than the status quo states is wrong. I will accept myself, as I am.

Now don’t confuse this theme of acceptance with the notion of settling. I will not settle for anything less than I deserve, or anything less than I want for myself. I will not accept the standards people hold me to, regardless of how low or high those may be. I will not accept or allow my limitations to be a permanent reality. I will not accept the mistreatment and hurtful thoughts and words I may face. I will not accept the negative opinions of those who do not understand my values and morals. I will not accept the idea that I am any less worthy than a healthy human being. I will not accept the notion that my illnesses make me a lesser human. I refuse to accept the thought that a hurdle is too big to overcome, or that a setback is permanent, or that a mountain is too big to climb. I will not accept negative opinions of my actions and my beings by people who underestimate me and my abilities. I will not accept the idea that I am less, that I am incapable, that I am a failure. I will not accept anyone who doubts or gives up on me.

The key in all of this is to find a word that empowers you, a word that encourages you when things get tough or the doubtful attitude surrounds you. It’s a word that is important to you, a word that will guide you through the things that you find difficult. There is no need for empty resolutions, or unrealistic expectations. Choose a word that represents what is important to you, that allows you to unapologetically live and act and attain the goals that you want to achieve. I held myself back in 2016, because I chose to compare instead of accept. I’ve found that the acceptance of your reality and of your circumstances is the key to being free. Be aware of the choices you make, and the potential you possess. You are fearfully and wonderfully made, and once you accept that your path is different than that of your peers a whole new world of self-discovery opens up.

Regardless of what word you choose, or the resolutions you list life is what you make of it. It may not always be bright skies and sunshine, but it will not always be grey skies and storms. If anything in the upcoming new year, don’t gage it on the accomplishments you attained or those you did not. If anything at all choose to celebrate the fact that you survived another year, whether that was in and out of the hospital or bedridden at home…you did it. That in itself is pretty badass if you ask me. So keep on keeping on, and may the next 365 days be kind to you and filled with good health, happiness, and endless amounts of love and laughter.

Here’s to another year of finding grace in the good and the hard, and surviving despite the odds stacked against us. Onwards and upwards my friends, Happy 2017!

BLOG SIGNATURE