A hope and a smile

This post has taken me some time to write. It started out as a few notes jotted on a scrap of paper. Those notes rapidly morphed into an inky blur haphazardly sprawled across a notepad. And that inky blur quickly became a rough draft typed out on my computer screen. And there it sat, mostly ignored for several days. I occasionally added to the numerous bullet points of things I wanted to include and, in a very basic way that defied all the things my high school English teacher ever taught me and would surely horrify anyone with an understanding of grammar and the English language, typed out a rough draft. My original intent was to post this on January first, but that obviously did not happen. It has taken me a while to transform that rough draft to an organized and comprehend-able post that could convey everything I want to say. On top of that, I didn't want to come across as melodramatic or overly sentimental, so I took the time to choose my words carefully. As a result, this post is a week late. By this point, you are probably thinking "What on this overpopulated life supporting planet is she talking about? What is the actual point of this post...?" I promise that it will all make sense once I get started, so here we go.

I want to begin (ignore the tiny black squiggles above) by wishing everyone a Happy New Year, so...

Happy New Year! 

I hope that everyone was able to have a relaxing and joyful holiday season and wish that the New Year finds everyone in good spirits (despite the gloomy winter weather) and health!

It is at this time that people make resolutions and pinpoint the aspects of their lives that they would like to change over the coming twelve months. People see the New Year as a transition - closing the door to the previous year and opening the way for a new one. I have heard this transition referred to in countless ways: a chance to start over; a clean slate; a new chapter in life; 365 blank pages to be filled in and so on. Perhaps it has to do with the inner drive to be successful or happy; maybe there is something about the empty grey winter sky and the cleanliness of the snow blanketing the earth that inspires people to dig up the not so great things in their lives and improve them; or there is something about an annual event that marks the passing of time that causes people to re-evaluate their lives. Regardless of the why, the New Year signifies a fresh start and, as is reasonable with anything new in life, people want it to start off well. They want the New Year to be better than the last; they want the new year to represent a significant and positive change in their lives; they want to feel like they are progressing in life. So people make resolutions - they vow to eat better, promise to go to the gym four days a week or use that elliptical, now sitting forgotten in the corner covered in a fine layer of dust after last year's failed resolution. There are plans to stop procrastinating or de-clutter the house. Some resolutions are fun and lighthearted: traveling more, catching up with old friends, read those books you have been meaning to read but never got to. The point is, people see the New Year as a clean slate, something wholly different, and in some ways completely disconnected, from the previous year. It is not only a chance to review one's hopes and aspirations, but to actually start making them come true.

As I sit at my desk and spend a good chunk of my time on the internet (because that's what eventually happens once you have been stuck at home for four plus months with a missing section of your shin bone and an external fixator), I can't help but feel jealous as I scroll through articles and blog posts about the resolutions people have made. I have never been one for making resolutions. That is not to say that I didn't see things in myself that I thought needed to change, because I did and still do. But I worked on them as needed. At the start of university, for example, I was a horrible procrastinator. By the time I graduated, this was no longer an issue - I rarely had to rush to get course work handed in on time. Fast forward a year post-university graduation and into my college education, and I was getting assignments done weeks in advance. This example is not crucial to my point, but I hope it illustrates that I didn't wait for the New Year to make changes in my life. So New Year's resolutions are not my type of things. Yet I still feel jealous of all the people making them. A burning desire to be able to do something I can't while the city of people around me can. And that jealousy is routed in my chronic health problems.

From my perspective, people appear to move easily from the events of one year to the next. In general, the weight of the events of the previous year doesn't seem to follow people the way you might imagine it would, at least not around the New Year. People are optimistic and driven by that one common denominator - ambition. Everyone wants to have a better future and to do extraordinary things, and that requires ambition. Because people in general are healthy and have ambition, they feel empowered to set goals for the year to make changes in their lives. It is so easy to do when people are healthy and their lives are already going relatively well that resolutions become a frivolity. A person who doesn't face hurdles or setbacks does not have to think about whether or not they can achieve their resolutions (within reason, of course). Actually turning those resolutions into a reality is another thing, but most people have the ability to do so. But resolutions are a luxury that people living with chronic medical conditions often cannot achieve.

The longer an individual is chronically ill, the more the days start to blur together in some combination of medication, fatigue, pain, or never ending doctor's appointments. Daily life becomes a struggle; blood work is taken; scans are done followed by weeks anxiously awaiting results; sometimes there are positive results but just as often the news is undesirable; good days come and go, mixed sparingly among the many bad days; there are hopes and fears, doubts, anxiety, even joy. Treatment expectations can either be met or be disappointing, even heart wrenching. One learns to be reserved when it comes to hopes about the future - life becomes more about day to day existence than the future. And there is always that haze of medication, fatigue, pain, and doctor's appointments. It is hard to see life beyond that and think six months, a year, five years ahead.

The things mentioned in the previous paragraph are not minor or insignificant. On the contrary, they often play a drastic role in a person's life. Above all else, chronic illnesses are emotionally draining. They force a person to focus on the everyday instead of the future. The fear and worries about the future, however, remain. The start of a new year is not always the significant marker of time it is to healthy individuals, nor is it an opportunity to wipe the slate clean and start writing a new book. You simultaneously have both the need to live life day to day and all the concerns for the future tugging at you. The medical problems move forward with a person, often with no end in sight, and they will continue to affect everything a person does. As a result, there is little or no room for resolutions. When a person has already been forced to take life a day at a time (be it due to uncertainty with treatment, pain or fatigue, or the limitations imposed by their health), it is hard to look to the future. It can therefore be very difficult to create meaningful resolution. It might even seem pointless to do so. Without resolutions, goals, or a future to plan for, people need something else to strive for and to fill their lives with. This can be difficult as, over the years, life alters from what is considered normal.

It is at this point where this point seems melodramatic and perhaps a tad sentimental. You might be thinking "What a horrible outlook to have on life/the new year," or "Things can't be that bad!" Let me explain.

The last year has by far been the most difficult I have ever been through. This blog is a testament to that. From fearing the chronic osteomyelitis had returned at the start of January and anxiously awaiting scan results, to the relapse being confirmed by my orthopedic surgeon in February, progressively getting worse throughout the summer, followed by a PICC line and surgery, months spent at home followed by major surgery and an external fixator and intramedullary nail. There was so much pain and exhaustion, fear and unanswered questions. I remember sitting in the fracture clinic on a cold Friday afternoon in February, being told the bad news and how much I cried as I walked out of the hospital, alone and afraid. And through it all were the attempts to remember a normal to strive for and get back to... a normal I could no longer remember. Medically speaking, it was a horrible year and to an extent, the bone infection tainted everything else, like moving out and studying to become a nurse, that happened.

The unfortunate part of all this broken legged, bone infected, external fixatored nonsense is that it flows into the New Year. And I am not talking about a trickle or small puddle. I am talking full on flood. As much as my doctors are cautiously optimistic that the bone infection is gone, I am still dealing with the massive after effects that are left and those will take a long time to get better. Things will take a while to heal; there is more surgery to face, there are complication that could arise and pain to be managed. As a result, the after effects will shadow my life over the next twelve months and life, for the most part, will remain a day to day sort of thing.

I look at the empty gray skies and crisp white snow on the ground and I do not see the clean slate that I read about on other blogs. There is no ambition to meet a goal or make a life style change. Given the circumstance this would be difficult and perhaps foolhardy to do. I have to many worries to think about losing five pounds or getting back in shape, find a job or moving out. My slate had not been wiped clean and the snow outside does not look so crisp. Instead, someone had half-heartedly run a rag over the slate, smudging the chalk everywhere, and there are footprints tracking through the snow.

For me, the new year is filled fear and trepidation, a resolve to continue enjoying the little things in my life, and a quiet desperation for treatment to work, my bone to heal, and for the chronic osteomyelitis to not come back. This is all shadowed by the previous decade of the same medical problem constantly interfering with y life. If I were to make any resolutions they would undoubtedly be to be healthy again and to be able to look back at the end of the year and believe that I have gone through treatment and recovery gracefully and with bravery and courage. These are, however, unrealistic resolutions. As my doctors have told me and the literature I have found online and in my nursing textbooks explain, we are not talking about a cure. As one site put it: "The term cure is not used since the bone infection may relapse after many years of successful remission" (link found here). The ultimate goal is remission and no evidence of active disease. I can't help thinking about the relapse and how positive my doctors had been that the infection was gone for good. The relapse is a stark reminder that I cannot control what the infection does. It is not a failing on my part if it does rear it's ugly head again. Likewise, it is one thing to hope to be brave and courageous and graceful, but chronic health issues are anything but those things. There are both good and bad days, many rough and unpleasant moments, fear and worry, moments when I feel like I can conquer it all and get better but also moments when I feel desperate, discouraged and afraid. Saying I will be courageous and all that other stuff and making it into a big resolution to stick to does not do me any favors. Appearing to be brave is meaningless if I cannot cope by expressing myself. Therefore, it is unwise to make resolutions that are un-achievable, beyond my control or detrimental to my well-being.

So I won't be making any resolutions this year. There is nothing to aim for and, like most people forget within a month or two (we have all been there, myself included!). I don't have a blank slate - the events of last year have carried over to 2016. This is all too clear, literally and figuratively - the fixator on my leg is a stark reminder of everything. Yesterday I sat down and browsed through last year's posts, the words I wrote. I remembered the uncertainty and fear (relapse, possible treatment, horrible symptoms); how gutted I felt; despair, like I couldn't do it again. I read and I cried, tears rolling down my pale checks. In all my day dreams, I never would have thought 2015 would be as it was. And 2016 will be just as difficult, but in other ways.

As previously said, now is full of a lot of uncertainty, and the events of last year will continue to shadow me for months, possibly years to come. I will have my external fixator for at least four more months, then surgery with the possibility of either more internal hardware or a bone graft. After that comes intensive physiotherapy - by the time that begins I will not have been able to walk for at least eight months. There will be a lot of waiting for my shin bone to fully harden. If all goes well and as anticipated, this time next years. Yes that's right. January 2017 - fully hardened healthy new bone. And there is always the chance things could go wrong. My surgeon says there is a 70% chance that things go right. That leaves 30% that they go wrong. The next surgery could cause infection, the fixator could cause infection, the original infection could come back if it was not, as we hope, completely eradicated. The bone could fail to harden or not grow at all...

So many fears and so much uncertainty. After rereading everything I wrote here it makes sense that I do not want to make resolutions for the New Year. There is too much that my doctors and I cannot control.

But I cannot live a year in fear and uncertainty. That would make for a pretty miserable year. Nobody can be miserable for that long. Yes, maybe a day or two (well-earned given my circumstances), but not an entire year.

So I choose to look forward with hope. A hope that 2016 will be a year of healing, a return to wholeness. There is too much that is unknown to my doctors and I. It would be foolhardy to make a resolution to get better - something that I ultimately have no control over. And it would serve no purpose - if things go well, great! Fantastic! But if they don't, it is not for a lack of trying on my part. My leg will do what it will do. And it will be just as foolish to resolve to be brave and courageous throughout everything. Part of being ill/having medical problems is accepting that you don't have to be a super hero and push through everything.

So - hope. Hope and a smile and a day dream of being better. Sitting in the weak but strengthening spring sun; wading in a cool stream to stave off the summer heat; crunching over the brown curled leaves of fall; walking softly in the crisp winter's snow next year.

Last year I started the year out waiting for MRI scan results. It was a year that started badly, with uncertainty which turned into the ugly unwanted diagnosis of my relapse. The year ended in much the same way - fear, pain, uncertainty, etc. Those feelings have crossed over onto the blank pages of this year, but now there is also hope. And because of that, this year will not be like last, and I will not lose another whole year until my bone, fingers crossed, is fully healed a full year from now. Therefore - no resolutions this year. Just hope, a quite resolve (to see the beauty and joy in my situation and tiny world, even though it is not what I want for myself right now; it is about the simple things, the small stuff), and a daydream to keep me smiling and hoping whenever things get too tough. For me, that means a whole lot more than a resolution I know is not achievable or one that I will soon forget.