Calming My Monkey Mind

This past month has been a very growing time for me. I experienced a lupus stress attack six weeks ago that triggered a plethora of actions and emotions. I don’t want to get into details about my health complications, but rather focus on the lessons I took away from it.

When these flares happen, I know my body is telling me that once again, I have pushed myself past my limit. I was working full-time at my serving job, I had a part-time research internship, I was working on my honours thesis, and preparing to write the GRE (a grad school exam) this summer. My weeks were easily running upwards of 70 hours a week, not including the time I spent at the gym or doing yoga. I reached a point where I completely lost my passion for what I was doing. I questioned if I even wanted to go to grad school anymore. During my week of rest, I spent a lot of time reevaluating what my priorities are, remembering what is important to me, and what adds value to my life.

The first thing I did was quit my research internship. Even though it was only a part-time commitment, it was another obligation that took time away from self-care. I also decided to postpone writing the GRE exam until next summer after I graduate. It was many sleepless nights before I made this decision, as I was extremely conflicted. Not writing the GRE this summer meant that I was not eligible to apply to grad school until December 2018, which would add an additional year to my educational path. I felt a lot of disappointment in myself and spoke openly to my counselor about this. I felt like a failure and could not get myself out of this rut, which is what inspired me to write this blog piece. The lesson I took away from this experience is the importance of loosening my vice grip on life and letting things unfold naturally.

Since my teen years, I have always struggled with having uncertainty and ambiguity. I think it became much more pronounced after I was diagnosed with lupus. When I received my diagnosis, I felt a complete loss of control. That I had no influence on my life anymore, that things were being handed to me, and that I could not fight back. At which point, I tried to become more in control of all the other aspects of my life to compensate. I still very much can be a control freak, but I am starting to find comfort in the unknown.

I had my educational path mapped out for the next few years, in terms of when I would be applying to grad school, when I would start, etc., and have come to the conclusion that not having the next 5 years of my life mapped out is not detrimental to my success. As I continue working towards my future goals, I still need to enjoy life and do things in the present that enrich it.

I preach to my friends and family about the importance of self-care and yet at times, I neglect my body when it’s telling me to slow down. I have scaled back where I can and am trying to enjoy the rest of my summer and focus on taking care of myself. I recently started Moksha yoga, which I absolutely love. I practiced Bikram yoga for the past decade on and off and wanted to try something new. Moksha is similar to Bikram in the postures performed and that it is also done in a hot room. I find Moksha to be less militant than Bikram and have enjoyed the instructors and their more nurturing approach. Moksha is really about developing your own practice, listening to your body, and doing what feels right to you in that moment.

My takeaway lesson from this past month is that things will work themselves out. I have faith that events will unfold for me as they should. When I say faith, I don’t mean it in a religious context – I mean, I have faith in myself. Faith that the experiences I have, the people I meet, and the growing and learning I do every day, will lead me to my life’s purpose. Being able to take a step back and focus purely on the present (the next year – which is a major improvement for me!) has been extremely empowering. Undergoing self-realization and knowing that I will be okay in whatever path I choose to pursue has left me feeling content, peaceful, and grateful.

As We Are Interview

My wonderful friend and Founder of As We Are, Zoya Jiwa, asked me to do an interview and photo shoot for her foundation. For those who don’t know, As We Are is a style website for people living with health conditions. It combines peer mentorship and storytelling to support individuals experiencing symptoms and side effects of diseases, disabilities, and chronic pain. This is a space where comfort meets style, where functional fashion thrives, and where courage shines. My meeting with her really inspired me to get back into my blog, so here are a few of the interview questions I wanted to share with everyone.

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1) Tell me a bit about yourself. What’s your story?

I am passionate about living life with a heart full of happiness and gratitude, appreciating the moments I have with my friends and family, and relentlessly chasing my dreams. I am a strong and kind-hearted person because of the experiences I had at a young age. I was diagnosed with systemic lupus erythematosus (SLE) when I was 13 years old – almost 12 years ago. It was a day I would never forget and an event that has changed me for the better. If you had asked me to take part in this interview and photo shoot six years back, I probably would have said no. But in the last few years, I have been focusing on growing as a person, finding new ways to inspire myself, and achieve internal peace and happiness. I am currently in my fourth year of my BA in Psychology at Kwantlen University. I am an aspiring Clinical Psychologist, and hope to be accepted into the clinical psychology graduate program at UVIC, UBC, or SFU. I work as a server at the beautiful restaurant, Nightingale, in Coal Harbour. I love my job because it brings both my passion for people and food together.

2) What advice would you give to others who are going through similar health challenges to yours? What has helped you or made you feel better emotionally along this journey?

As cheesy as it sounds, I truly believe that everything happens for a reason. I believe that I would not be dealt these cards if I were not able to handle them and overcome these obstacles. During my darkest periods, I had to constantly remind myself that there was more to all of my suffering. You get so trapped in your own world and forget to step back and take another perspective. I continuously remind myself that there will always be someone in a better or worse position than I am in and that I have a lot to be thankful for.

One of the greatest things I have learned in the last few years is to show yourself the same level of compassion, understanding, and forgiveness you show to friends, family, or strangers. This task sounds much simpler than it really is, because we naturally are our toughest critics. I was unhappy with my situation for a very long time being that I was constantly fighting against myself. For the majority of the last twelve years, I saw my lupus as a weakness or a handicap and I felt as though I had to work twice as hard to prove that I could do anything that any “normal” person was capable of. I pushed myself to the point of a mental breakdown. I was overworked, exhausted, and ignoring all the signs my body was telling me, just to get an ego-boost. I learned that allowing yourself to be vulnerable and appreciate those moments of weakness are the greatest signs of strength, humility, and wisdom.

3) Where do people stumble with their language or understanding about your health condition? What changes would you like to see?

I think there is a stigma when it comes to lupus, or any illness for that matter, that does not have a visible physical disability. People fail to understand that lupus is a real chronic disease that affects millions of lives and can lead to premature death. I have had coworkers or acquaintances tell me that lupus is not a real disease and there is a cure – unbeknownst to them, I had lupus. Just because I don’t wear the lupus label on my face or body does not undermine the severity of the disease. It does not discount the amount of time I have spent in hospitals, in doctors’ offices, getting blood drawn, doing x-rays and ultrasounds, receiving bad news, and the days I just wallow in bed. Not having a physical disability does not disregard all the challenges I have endured and sacrifices I have made with my lupus. I would like people to be more open-minded and to not take things just at face value. Just because I go to school and work everyday with a smile on my face, does not mean I am perfectly happy and that life comes easy for me.

4) In consideration of the challenges you have faced, what are you most proud of?

I am most proud of the progress and growth I have made in the last few years. I have developed my own understanding of strength and that is, that it’s okay, to not be okay. I don’t need to have it together all the time. I don’t need to prove to myself or anyone else that lupus is not my kryptonite. It is not an excuse nor is it something anyone should feel sorry about. Before when I was on the verge of a flare, I would just push myself harder and tell myself that it was a test of my character and perseverance. When in reality, it only ended up hurting me and setting my health back further. I have had to learn that the hard way, but now I can appreciate those instances when I can see past my ego and self-pride and just know and do what is right for me in that very moment.

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5)  Who or what are you inspired by?

I am most inspired by my friends and family and the love and support they show me. I remember the day I shared my first blog post about living with lupus. I was literally shaking as I uploaded my post. I felt sick to my stomach and was so nervous to see the response I would get from everyone, or even worst, if I got no response. I remember sitting there afterwards just crying and feeling this huge weight off my shoulders. I had finally let my walls down and was letting people in. I had hid everything to do with my lupus from everyone for ten years, and I got to a breaking point. I just couldn’t pretend that I had it all together anymore, when I was literally falling apart at the seams. The days following my initial post consisted of some of the highest and greatest moments of my life. The outpour of love, compassion, support, and encouragement I received from everyone was something I did not anticipate for. I cried even more tears than I thought possible, but for the first time, in a long time, they were tears of joy.

6) What are you grateful for in this moment?

I am grateful for the moments I have during the day when I’m just with my thoughts. Those moments are when I feel most at peace and can appreciate everything around me. Relishing in my own calm was not something I ever enjoyed before. I am the happiest I have been in a very long time and for that I am eternally grateful.

When you feel defeated, remember where you started

I remember this day as if it were yesterday, even though it happened almost ten years ago. The fact that I can remember this day so vividly is what constantly reminds me to appreciate life; every moment of every day, because you never know what is to unfold.

It was spring during my grade eight year of high school. I remember experiencing incredible stomach pains, it felt as though a knife was being stabbed into my abdomen and dragged around in circles. It came and went in waves and after being in a fetal position for hours, I knew it was time to go to emergency. Both my parents were out of town, my mom was in Vietnam and my dad was in Toronto. My parents separated when I was ten, so both my parents traveling became a normal occurrence during my teenage years. Once I arrived at the hospital with my aunt my pain only got worse. After being admitted into the ER, the doctors immediately suspected that I had appendicitis; they kept me off food and liquids in preparation for surgery. They were just waiting on my blood work to come back before confirming the diagnosis and starting surgery.

After a day in the ER and no markers in my lab results that showed signs of appendicitis, the doctors were quite taken back. They told me they did not know what was wrong with me and they were moving me to a longer-term unit at Children’s Hospital, and that I should expect to be here for a few days. At this point, I was pretty scared. I was only fourteen and staying in a hospital with my aunt who barely spoke english and who made it very clear she did not want to be here anymore than I did.

I got my blood drawn 3-4 times a day, the nurses would even wake me during my sleep to draw blood. On average, they were drawing anywhere from 15-20 tubes a day. During this time my stomach pain still persisted, I was on a lot of morphine to mask the pain. After five days of ongoing blood tests, different doctors coming in every hour to poke and prod at my stomach, and immense abdominal pain, it finally came.

My hospital room went from being cold and dismal to full of doctors and graduate students, in what seemed like a heartbeat. I remember seeing at least eight different faces in my room. They said my blood work was consistently showing abnormal results; I had a dangerously low platelet and red blood cell count, and a very high amount of white blood cells. My platelets and red blood cells were so low that the doctors would not let me leave my bed in case I bumped into something and bruised myself, they said I would bleed to death. Finally the diagnosis came. It was the first time I had ever heard of the word ‘lupus’. The doctor said they had very strong evidence to believe that I had lupus. It is crazy to think a decade ago I knew nothing about lupus or its existence, and now it is all I know. He continued by telling me lupus was an autoimmune disorder and it was something I was going to live with for the rest of my life.

My heart completely stopped. I did not react. It was all just too much for me to process. How could I come into the hospital with severe stomach pains and leave with a chronic disease? I just did not understand. To be honest, I don’t remember much after that. I must have blocked everything out because I did not want to believe it.

What I thought was going to be a quick trip to the ER turned into a two week stay at the hospital. I was put on very high doses of steroids to get my blood count up before they said it was safe to release me. I had missed two weeks of school, none of my friends or family really knew what was going on, I lost 15-20 pounds and returned to school looking sickly thin.

The first year of my diagnosis was the toughest year of my life. My whole life changed overnight and I was thrown into a world  of medical terminology I had never heard, I was doing blood work every other work, and seeing doctors and specialists weekly. The high doses of steroids I was on continued throughout the summer in hopes to get my lupus into remission. I went from being 105 pounds to 130 pounds over the course of the summer due to my medications. The steroids increased my appetite ridiculously, I was eating all day and my portion sizes had tripled. I was depressed and had absolutely no motivation to do anything about my weight gain and diet. I started my grade nine year of high school looking like a completely different person. I was the biggest I had ever been, my face was puffy and round, and I had terrible acne. I barely recognized myself. I had lost me and who I am. I came back to school only as a mere shadow of myself.

The next year I spent trying to learn everything there was to know about lupus. I wanted to be knowledgeable enough to go through this alone. I went to all my specialist appointments alone, I did not want anyone else involved. Like I have said in previous posts, when I started this blog a year ago that was when I finally let my family and friends in. This was the most they had known about my disease in ten years. I made myself believe that if I couldn’t do this alone, I was a failure, that my lupus controlled me and that I wasn’t strong enough. I can’t remember how many nights I cried myself to sleep to the point I could barely breathe or open my eyes the next day because they were so swollen. At such a young and naive age all I could obsess over was why me? What did I do to deserve this? I had this mentality for at least a year after my diagnosis. Anytime anyone would ask me about my lupus I would either breakdown or shut them out. Emotionally I just couldn’t handle explaining it to people. I felt as though every time I talked about it, it made it more real.

I never imagined I would be where I am today, both mentally and emotionally. I never thought I would have the courage or strength to share my story with my family, friends, and strangers. I honestly thought I would be doing this alone for the rest of my life. I never wanted people to think I wasn’t strong enough, or that my lupus was an excuse for anything. Through all my experiences in the last ten years, I have learned the true meaning of strength; it is the ability to face adversity with perspective, appreciation, and mindfulness. To know true strength is to be able to let yourself be vulnerable at times and to lean on others when you can’t find the strength within yourself. It takes more strength to get past your ego and self-pride then to face adversity alone.

Starting my blog has been the most freeing, rewarding, and eye opening experience I have ever had. I never could have imagined how much I would take away from this journey. I t has connected me with my loved ones and supporters in a way I never thought possible. I appreciate every aspect of my life and every obstacle I have overcome. It has made me the woman I am today and for that I am forever grateful. I always remind myself that there will always be someone out there who is in a better and worse position than I am. I have so much to be thankful for.

I wanted to write this blog piece today because people always ask me how I can be so positive about my health, as if it never affected me. Trust me, I went through a very dark, wallowing stage where I shunned everyone out. I have gotten past that now and am empowered to share my story and see it with a positive and optimistic outlook. Thank you to everyone who has given me the strength and courage to be open and share my life for the benefit of others, and most importantly myself.