JULIA MARTIN: DIAGNOSIS DAY

This photo was not chosen because it is a personal favourite or because of how I look but for the time it represented in my life. You see this photo was taken a year before I received news that would change my life as I knew it. I can starkly remember the day and the details. It was June 13th, 2012 and as everyone was wishing me a happy birthday and telling me to live it up, I was preparing for a procedure that would hopefully give me the answers to all my questions. 

Then on June 14th the day after my 20th birthday I got the results of the colonoscopy I had undergone earlier that day. “You have a mild case of Crohn’s disease,” the Gastroenterologist told me. Was this the answer to all my questions? Was this the reason I had been feeling perpetually exhausted to the point of collapse? Was this the reason I was going to the bathroom over 14 times a day and every time I would bleed? Was this the reason that when I went to emergency in agony and the doctors concluded it was nothing? He gave me a run down of what it was and yes there is a chance of escalation but we’ll start you on medication. We will set you up with a nutritionist and get the needed blood work, shots done in preparation, just in case.

But little did I know that this diagnosis would alter my course and put me on a different path. This was only the beginning, there was so much unknown and I had no idea what to expect. In a two-year period I went from a mild to a moderate/severe case. Within another two years of that escalation I would need emergency surgery and an appliance to avoid my colon from rupturing. My doctor (I felt) essentially blamed my latest complication due to the fact that I simply didn’t agree to his regime of treatment. How I felt at the end of the appointment was he saying, “if you only had agreed sooner, acted quicker and not as defiant this wouldn’t have happened.” 

What the professionals often forget (I feel) is that there is a person inside of each patient. When a 20 year old is given a diagnosis and handed all this information there is little foresight on how this will impact their life. What the doctors may not know when they were telling me to switch medications and irritated because I was hesitant to switch treatments, there was a reason. I was not trying to be reluctant or defiant, but I was scared. Scared of the repercussions of taking some medications that don’t even have long-term research to back it up because they have been created within the last decade. I was afraid of how this medication would impact my body, because when you are a 19/20 year old all you want to do is fit in and belong. I was feeling frustrated because I would no longer be a carefree young adult and unsure of what the medication maintenance will entail (injecting or infusions, blood work to name a few).  I was feeling angry because this will dictate what I could and could not do, tie me down in ways I never desired or even asked for. I was feeling exhausted because this is a 24 hour job, seven days a week, 365 days of a year with no option to opt out.  There are hundreds of decisions I need to make everyday and each one could have potential consequences.  

But throughout this process I have begun to experience compassion for the people working in this field. It can be a rewarding and heart-warming but also filled with: pain, frustration and complexity. I forget that these people are human too, burden with an ever-growing need and with diseases that have no simple answers. Crohn’s can morph and change in weeks or months by a flip of a coin in ways that doctors can’t always predict or plan for. This disease can confound people with even the most in-depth experience, and leave no easy choices. They don’t have a straightforward map he or she can use with each patient. There are no guarantees that the Doctor’s bag of tricks will give you the health and stability each patient craves. 

Reflecting back on it now if my Gastroenterologist had told where this road would lead me to I probably would have laid down on the floor, curled up in a ball and not gotten back up for a long time. I didn’t feel strong enough then and sometimes I am still don’t feel strong. There are times where I cry and wallow, but now I have learned how to keep going. I have begun to transcend into a place of acceptance, I have started to understand what strength means. Strength isn’t what you do or say in the absence of fear, but when it is crowding you and what you choose to do with it anyway. 

So when I look at everyone involved in this process, I try to show compassion for us all. None of us asked for this, no one desired or even imagined where this journey would take us. But we are here, like it or not, love it or hate it this is the one body that I have been given. But we are here, like it or not, love it or hate it this is the one body I have been given. I have started to exercise compassion and love for everyone involved, but most of all myself!!

Julia Martin: THE BUFFER

As I was reading each of the stories I was blown away by them, each one had some latent power within the story and as I continued reading something dawned on me. Now I realize that this is a bit of a comparison and not the point, but just illustrating what I was feeling in that moment. I realized that I had not named any of the things I have struggled with. Now there is absolutely nothing wrong with that and I am not trying to shame anyone for what he or she wrote, including myself. But for myself I realized that I still was operating (somewhat) out of fear. Even after all this time, learning and growing bolder I was still afraid to type the word like: chronic illness, suicide, sexual assault and many other words that can be used to describe challenges and learning curves I have faced. I realized that there was still a small part of me using that buffer I have used for years to protect myself, to keep me safe, because up until recently (and even now sometimes) it has not felt safe for me to completely remove that buffer. I mentioned in my first post how I got “burned” and I believe that is where the buffer came into place. It was an act of separating everything I felt: people couldn’t handle, didn’t want to see, would hurt everyone I loved and the list of reasons could go on and on. With every experience I added a new reason until sharing just did not seem like a viable option, so I tried to just shut it all away & hide it from everyone.

I know now that there is another reason why that buffer is in place, in a sense it is also to protect me but not in the same way the other kind was operating. It understands from my experiences that some: information, experiences & feelings that want to be shared does not make sense to do so in every situation. There are some environments; people etc. that it just doesn't make sense, it isn’t safe and that I will not get what I am looking for. That buffer is trying to use discernment and wisdom so that I (and the others involved) get the most connection possible and we all get what we want. Now I know that both buffers have (to some extent) taken it to extremes, and I am now in the process of finding the middle ground. There are contexts, people and situations that it makes sense to share.  It is about the sense-making and trust that is happening within yourself and the searching of whys (I tend to do that, exploring process either myself or explore with the people I am interacting with) when I am thinking about sharing. It is a learning process and I have a long way to go, there was damage done by those buffers to others and myself because of how I handled things in the past. I want to own that responsibility and the impact those buffers have had on everyone, it feels an important part of the process.  But there is hope, a reason to keep moving forward even if it feels so hard and I am so tired. 

It has been in the last couple years that various people, some whom I admire and I am close with (but also sometimes complete strangers) that have revealed the impact that my story, my presence etc. has had on them and I have been blown away! I had no idea I had the capacity, skill or competence to do any of that. I realize that my story has that latent power and I am now at the point where I am willing remove the buffer in the spaces that make sense to reveal that power. I realize that educating people is a key part in changing this world and making the world aware of the stigma is part of that change. Part of that process is the willingness to be vulnerable, to be open in those spaces for others to see.  All of our stories have power and the capacity to change the world, now I am starting to figure out how to use mine.