PREAMBLE

In February 2015 I was desperate. I was at my wit’s end. I was miserable and so incredibly ill. I knew that something had to give. 

I had just finished a four-month work term for the government of Canada and almost killed myself in the process. 

Putting my almost-finished master’s degree on hold, initially, I thought I could recover and restart school in the fall. But when I went back to Ottawa after Christmas, something told me change was coming. Something was different. My body was not happy with me, I was not going to bounce back like I had from previous activities. 

I started to record my health and seeing on paper, in my own handwriting, day after day of miserable fatigue, overwhelming pain, and countless other symptoms I knew it was bad. 

All the time to myself finally allowed me time for reflection and to put together the puzzle pieces of my life that I had been ignoring for too long. After a month or so, I knew. I knew that my time in Ottawa was done. This period of my life, the most normal years I had lived so far, were also the hardest and most detrimental to my long-term health. 

I was only thinking about getting through university, keeping up with my friends, going on adventures. Reality hadn’t sunk in. I wasn’t like them. My path was not the same as theirs. I couldn’t work, I couldn’t even live alone. 

Luckily enough, I had been yearning to move back home to the mountains for a while previously. This was not the way I had intended to leave my life in Ottawa but you know what they say about best-laid plans. 

So the decision was made. I was resolute. 

I quickly withdrew from school, packed up my things, and in no time my dad had driven the van across the country to drive me and all my earthly belongings back home. 

Before leaving Ottawa, I took my dad for a final tour around my university campus and it was the strangest thing. After feeling like it was my second home for almost six years, I no longer felt like I belonged. I felt completely out of place. I knew that that chapter has drawn to a close, and little did I know the new one that would begin.

Never before had I been an overly emotive person regarding my health. I have always and still continue to find it such a struggle to share about. When someone asks me how I am before I can even think my mouth answers for me, “I’m fine.” Though, I rarely ever am. So it felt very strange, but I had this incredible yearning to share my story and what was happening in my life with everyone. 

It felt vitally important at the time to make my move home public. So I wrote a letter and I emailed it to all my family and posted it on Facebook for all my friends and acquaintances to read. 

I could write several posts on the responses I received (varied and interesting and often very sweet).

Now, I want to share (and make a record) of the letter that I shared with all my family and friends in February 2015. 

Hopefully, this letter may encourage you to share your heart and health with your loved ones. Maybe it’ll help you understand a sick loved one’s struggle a bit better. Or perhaps, it may just help you know that you are not alone and there is light at the end of the tunnel. 

This letter was written three years ago, and my life has greatly improved and even during the hardest times, I have been greatly blessed.

THE LETTER

Dear friends and family,

I must begin this letter with an apology for its length. Always the keener, I have written a long, detailed explanation of the current reality of my health situation. I probably could’ve edited a bit more but where would be the fun in that? 

On a more serious note, I am stopping my schooling indefinitely, and am moving back home to Calgary.

I wanted to take a few moments to explain some of the facts about Fibromyalgia, why you may not have heard much about my health, why my health has deteriorated and how I came to this decision. I wanted to just get it all out in the open, in the public record, and to get the word out as quickly as possible. This is a difficult letter for me to write and has been a long time coming – although it may have taken me a while to realize it.

As many of you know, I first became ill December 31, 2003. As the New Year began, I started down a path of illness that ultimately led to a diagnosis of Chronic Fatigue Syndrome and Fibromyalgia almost a year later, just a few days before Christmas. I was 12 years old when I first became sick, and now 24, this most recent New Year’s Eve marked my being sick for half my life.

I somehow managed to pass grades eight through twelve, only attending class about half the time. For those first five years, I could barely sleep, was in horrible pain and was constantly exhausted. For those reasons, I was quite depressed. Being sick really shows you who your true friends are, and I so greatly appreciate those friends that stuck by me during those high school years when I all but disappeared from school, church, youth group, and so on. They loved me despite my inability to do more than watch a show together, at times.

At the end of grade twelve, as many of my friends were graduating, I still had another year to go but it was at that time that I was sick and tired of being sick and tired. I didn’t want to miss out on growing up, no matter the consequences. My grade thirteen year was one of great achievement, though it set a precedent of great price.

Pushing through the fatigue, pain, nausea, brain fog and countless other symptoms became only possible through my own self-distraction. I began to never leave myself a minute alone with my thoughts. I always knew I didn’t feel well – and that’s all I could admit. After years of depression, I entered into a period of denial. I would go out with my friends, then come home get into my pyjamas and be unable to even participate in dinner conversations.

I started University in 2009, during the initial months of my first year I nearly fooled myself into thinking I was almost “normal”. But it soon became glaringly obvious that I couldn’t keep up with my “healthy” friends. I was devastated and became incredibly insecure about being left out.

During those years, I could focus on was the short-term. I set goals that I could achieve – if I pushed myself hard enough, too hard as I now know. All I wanted was to graduate on time with my friends, unlike I had done in high school, and keeping up was all that mattered. Passing each year was my number one priority. Each year, by the time January came I felt as I had no strength to continue, but I focused on the end of April when I could return to Calgary for four months of pyjama days. That thought and sheer stubbornness and denial got me through each year. During those four years of my undergraduate degree, I created a very destructive cycle of pushing myself too hard, burn out, repeat. There was a problem, however, four months was not nearly enough time to recover from eight months of complete burnout – living on complete adrenaline because I had no actual build up of strength.

Throughout my third and fourth year, it became painstakingly clear that I would not and could not be able to keep up with the lifestyle and work requirements of the 21st-century journalist – I couldn’t even keep up in school. No, I was not yet ready for the real world. I needed to focus on a less demanding career path. So I started my master’s degree. Not at a new school or in a new city, no, my health could not keep up – and even though I was still in deep denial, I still knew that would be way too much.

With only a year left of my degree, my thoughts turned to the working world. But how to break in when I had huge gaping holes on my resumes due to pyjama day summers and no extracurricular activities from terms of barely just keeping my nose above water? I realized I needed to complete a co-op placement. So there I was, just about to begin my four months at the Aboriginal Affairs when I visited my specialist and asked for tips on working full-time that she may have picked up from her patients. Her response was my first clue that my work term might not go as planned. She said that she didn’t have any patients that work full-time.

I think that was the moment that I began to see past my built up wall of denial. The wall really began crashing down when I got home from my first day of full-time work and collapsed on the bed, barely able to move. I realized that there would be severe consequences if I continued to work full time for the next four months. But I had committed to complete this position and I would complete it and think of the consequences another day. To survive, I ate around 50 grams of protein a day, drank electrolytes, utilized every spare moment for rest, and even then, I still had to drag myself through the next few months.

As you might suspect, my health (whatever remains there actually were of it) took a nosedive, and I barely had the strength to get dressed in the morning let alone go to work. I very quickly abandoned the foolish notion of a second work or even the thought of going back to school in the winter. Only the countdown to the beginning of my medical leave from all work and school kept me going at the end.

When my leave began, I had great plans of using my time very wisely. I had a list of about 100 articles that I wanted to read, 20 books, 50 lectures, and even more podcasts, YouTube videos, debates and more. I was also preparing to begin my thesis and therefore had even more books and articles that I wanted to read. My number one priority was the course I was auditing, held by my thesis advisor. 

I had great plans for 2015. I had great plans, however, they were not to be realized. I had barely returned to Ottawa when my class began. I gave myself a grace period of almost two weeks to rest up before starting my plans. However, I was unable to start these plans because of what they required. They required me to be able to focus and understand whatever I was reading or learning, but I found myself barely to even get up in the morning. I was bedbound (term used loosely), with barely enough energy to sit up straight, read complex graduate-level readings. But watching mindless TV shows, making microwavable meals, having short conversations, was about all I was (and am) physically able to do. I found myself completing my readings at the last minute, barely able to focus, let alone understand Foucault and postmodern philosophy. 

Being home all. the. time., doing nothing, and with a fallen wall of denial, I finally began to allow myself think about how I felt. After years of existing in a state of perfect distraction, trying to ignore my symptoms, I began charting my major symptoms: pain, nausea, tiredness and brain function. And I finally saw it. I’ve gone too far, pushed myself for too long, always ignoring the long-term, in complete denial of the consequences of my sheer stubborn-headedness. I realized that my way of life was completely unsustainable: I can’t continue living this way, being completely reckless and foolish with my health.

If there was a “health bank” (one of my doctor’s favourite metaphors) I was in deep, deep debt. It was as if I ran a Ponzi scheme, convincing everyone, including myself, that I was “normal,” “healthy.” But the truth is my “money” problems started January 1, 2003, and they were exponentially worse by January 2015. The only difference now is that there is no more running, hiding, fooling, ignoring, faking or deceiving. Nothing. And its past time that I started to focus on paying.  

I’m always going to have to pay, the only question is when and how much more do I want to add to my debt? And despite how hard it is to admit, a masters degree is not worth any more suffering and denial.

The cold, hard truth is that I’ll always be in debt. There is no cure for Chronic Fatigue Syndrome and Fibromyalgia – at this point in time in the medical community, they are lifelong diseases. While I will always keep praying for God’s healing, I also have to deal with the reality of where my health is at this time. The only way to live with these diseases is pacing: through rest, restoration, healthy living and the right combination of drugs.

Even though this next step in my life sometimes feels like failure, moving backwards, or retreat, I know that for once I am not living in denial of the long-term. I have to really, truly give myself over to recovery, to rest, to a season of dependency and of being the one needing help. I am moving back home to Calgary, leaving school and focusing on my health. For probably the first time in many years, getting better is my first priority and I am going to put some dollars back in my health bank.

Having a chronic disease means loss. I am slowing down just as all my friends are really starting their lives. I am not “normal,” I am not “healthy,” and this has been hard to admit. I am grieving what I hoped my life would be, but I trust and know that God is leading me down a path that I cannot expect, but that He will work for good and for His glory.

As much as I have avoided talking about my illness, always saying, “I’m feeling fine,” or “alright” – I’m not fine, I’m not alright. And this is a difficult time – I’m letting go, at this point in time, of the notion of a career, supporting myself, becoming involved in the community. It sometimes feels like I am defined by my illness, that it’s a wall between myself and others, but I know that even in our career and personal success-driven culture, my identity is God’s daughter and that is all that really matters.

It is not easy to accept this new direction in my life. I do not know more than a step ahead of me, but I trust that God does and has prepared a way for me. Suffering as a part of life and I feel blessed at how my suffering has strengthened my convictions in Christ. I have learned that He is constant, sovereign and faithful and will give me the strength to carry-on. For it is in our weakness that He is strong. Whatever remaining strength I have I want to dedicate to learning about Christianity and why it is true. 

I know that the road to recovery ahead of me may take years. I want to get to a point in the future where I can perform basic daily activities, balanced with rest in order to create a sustainable lifestyle. So I am moving home. I am so blessed to have parents that are so incredibly understanding and who are willing to help me. They could not be more wonderful, loving and supportive. I could not have made it through the past twelve years without them.

So if you ask me what’s new I may just talk about a TV show or the news. Not much is going to be new with me in the upcoming days and months. But I’m trying to speak more honestly and openly about how I’m feeling. I know it can sometimes be hard or awkward to know what to say regarding health issues but I am not afraid of the tough questions. 

I just wanted everyone to know the truth: that even though I may look fine, I’m not. It’s like I have the flu but worse – every day. I’m in extreme pain all over my body, I am always nauseous, I think at a slower pace, I’m always exhausted and am incredibly weak. My symptoms vary throughout the day and some days can be better or worse than others. But I never feel well – I do not remember what it’s like to be “healthy.”

I’ve just barely survived the past five and a half years. Full-time schooling was too much, four months in between each year was not enough time to recover. Full-time schoolwork destroyed any remaining illusions I had and I’ve finally decided that it just isn’t just worth it anymore. I am in too much debt to continue, it isn’t worth it. I have to admit it – I am sick!

So that’s what I’m doing, moving straight into acceptance. I am sick and that means that I have a different path ahead of me. Any prayers would be greatly appreciated during this time. For I want to suffer well and honour God’s faithfulness in these difficult times.

I must apologize to many of you – there have been so many times that I feel like I’ve failed in being a friend to you. While I was partially there for you, I was also partially absent – I was just trying to tread water. So many times I feel like I let people down, missed important moments or was silent and absent in moments of need. I’ve made many mistakes and so deeply apologize and seek your forgiveness. I’ve been focused on myself, on my survival, and therefore I have many regrets as a friend and family member.  

And again, if you’ve made it this far, I am so sorry that this letter so long. There’s just been so much that I have ignored and failed to mention. I wanted to lay the truth out on the table once and for all. But its still a very long read.

I can’t tell you how much I appreciate your love and support.

Lots of love,

Heather