Working Through The Pain
Feb 11, 2021
For the past 23 years, I've been fighting a chronic battle against a relentless auto immune disease named Ulcerative Colitis or UC as it is commonly referred to in the medical field. I write this blog post not looking for your sympathy, but rather to educate you on the disease itself and inspire fellow artists who may be fighting their own similar battle.
I could likely write an entire book on the personal challenges that I have faced and the obstacles that I've had to overcome since developing this disease, but we will table that for another day. I would rather focus specifically on how this disease has affected my photography and teaching career.
Let's first talk a bit about the disease itself. Ulcerative Colitis is an inflammatory bowel disease (IBD) that causes inflammation and ulcers (small sores) in the digestive tract. It affects the innermost lining of your large intestine (colon) and rectum. Symptoms usually develop over time, rather than suddenly. There is no definitive cause and no cure for it. It's not contagious and it affects everyone differently. So don't be afraid to give me a big bear hug... once Covid has gone away of course.
One thing that you will find with most of us chronic IBD sufferers is that we aren't shy when it comes to talking about our disease with complete strangers. I think this stems from years of explaining our symptoms to nurses, doctors & GI specialists. Most people would never dream of speaking about how many bowel movements they've had in a day. It's just not something you talk about in the open. However, the longer you suffer with this disease, words like bowel movements, rectal bleeding, mucus, diarrhea, abdominal cramping, gas, bloating, weight loss, prednisone, moon face, joint paint, arthritis, fibromyalgia, enemas, suppositories, colonoscopy, sigmoidoscopy, surgery, j-pouch, biopsies, colon cancer.. all become part of your every day vocabulary. Over time, you do learn to joke somewhat about things with others, mostly because of their ignorance and lack of education to the disease. It is often easier than taking the time to fully explain the disease.
On top of it all, having long-standing ulcerative colitis is a risk factor for developing colon cancer. Treatment of ulcerative colitis involves both medications and surgery. Luckily, I have avoided surgery thus far, but was very close to going ahead with the "big one" last summer. This surgery involves removing the entire large intestine, leaving you with a temporary colostomy pouch that could become permanent should the second or third surgery fail. Ulcerative colitis can also cause inflammation in your joints, spine, skin, eyes, the liver and its bile ducts. Memory loss, confusion, unable to find the right words to say, extreme fatigue, exhaustion, fibromyalgia, social distancing, anxiety and fear all come into play. I find that the secondary issues stemming from the disease itself are sometimes worse to deal with. I suffer from all of the items listed above, with joint pain, fibromyalgia and extreme fatigue being top of the list.
So how does this all affect my photography and teaching career? Simply put, Ulcerative Colitis runs the show! I am completely at it's mercy when it comes to being able to perform daily tasks. I honestly have no idea what each day is going to start and end like. A seemingly "good" day can turn into a bad day in the blink of an eye. Things can and have gone the other way, but that is a rare occurrence. My life is all about planning. Take capturing a sunrise for example. I cannot simply crawl out of bed, get dressed, grab my gear and go. That is a luxury that I have not had for over 23 years. Does it bother me to see others be able to do this without giving it a second thought? Hell yes! I wouldn't be human if I thought otherwise. But this is my life, my disease and the cards that god has dealt me. As much as it truly sucks to live with this disease, it has allowed me to develop a much deeper appreciation of life and things that most people take for granted. So how do I deal with capturing a sunrise?
Let me take you through a typical plan that I go through the night prior. First I must access my current overall health situation at the time. Do I have enough energy to even go out the next day? Am I currently in a bad flare up and know that it isn't going to be possible to leave the house? For argument sake, let's just say that I feel ok with both energy levels and the stomach is somewhat settled. I then plan out what to eat for supper that it won't be too hard on my system the next morning. No snacks that night either! Now here is where the planning really kicks into high gear and we get into the math of it all.
If the sun rises this time of year (February) at 7:30am, I make a quick mental note of this. I then automatically subtract 2-3 hours (minimum) from this time to give me the time required to deal with my stomach before leaving the house. That puts me back somewhere between 4:30 - 5:30am wake up time. However, I also have to factor in my drive time, hiking distance, pit stops along the way (in case my stomach doesn't hold up). If I were going to Lake Erie, more specifically Port Stanley for example, then I would subtract another hour and a half off the wake up time. This now puts it as early as 3am wake up for a 7:30am sunrise. Give it another month when we change the clocks ahead and I could be getting up at 2am, just to capture a sunrise. Mind over matter must kick in at this point and it all boils down to how badly I want to capture the sunrise. Dedication to the craft is paramount. If you don't have the drive, will power and commitment to make it happen, it simply won't. Think of how easy it would be to turn off the alarm and stay in a nice, warm, comfy bed. Trust me, the thought crosses my mind all the time... and once in awhile it does win me over!
You might also be wondering how this disease affects my teaching career. Interestingly enough, Covid has actually been a blessing in disguise. Being able to teach from home this past year without worrying about the one hour commute to and from the college each day, has helped me out a lot. Not having to stress about running out of the classroom multiple times per class and later explaining myself to the students has also been nice. I do miss seeing the students and interacting with them in person but I'm embracing this new way of life for the time being. I would have to say hands down that the worst part of having this disease as a teacher is missing out on all of the school trips, social gatherings, awards banquets, charity events and competitions. It hurts a lot not to be able to attend most of these events due to my health. Some of the students and coworkers understand, but most have no idea of the severity of the disease or even that I am sick. I have learned over the years of how to put on a game face, even when I'm at my worst. I want my students to have a great time during my classes and I don't want my health to interfere. Believe it or not, I have only missed one or two classes in 12 years of teaching, both of which were unrelated to my illness. That alone is a huge feat and one that the college has never commended me for.
You may notice that my portfolio is primarily made up of scenes from right here in Southwestern, Ontario, Canada. You might be thinking that being a professional landscape and wildlife photographer is all about travelling and capturing the beauty worldwide. The answer my friends is simple. Ulcerative Colitis! It's not that I don't want to travel. It actually hurts me more than you know not to be able to see more of our country and beyond. The fact is that I have not been in any shape to travel since developing this disease. In fact, both my wife and I have only been on two trips... one to Florida (Disney World) and the other to Nova Scotia (my Cousin's Wedding). The anxiety of travelling while being so sick, really wreaks havoc on my mind.
My hope is that doctors will eventually find a medication that puts me into full remission and allows me to travel freely while I still can. Over the years, I have taken 10's of thousands of pills prescribed by doctors who are specialists in this field. Their goal has always been to try and suppress this disease and somewhat heal the intestinal tract enough to improve my quality of life. At times, certain medications have helped, but most fail within the first six months to a year. I've been through five different biologics over the past five years. These are the last resort when medications don't work. Biologics are typically infusion or injection based. They are antibodies created in the laboratory that stop certain proteins in the body from causing inflammation. What we've found with my body is that it becomes immune to these treatments after a year or so and they simple stop working. I currently inject my biologic at home every four weeks, in addition to taking a number of other pill form medications. For two to three days after the injection, I get very fatigued and don't feel like doing much.
So with all of this being said, how do I push forward? I find my fans and followers of my work are a huge help. They are the reason I dig deep and gather up the strength to get out there and capture these scenes. I love to be able to share my work with others, especially those who cannot get out themselves due to their own struggles. When someone purchases my work and I see it hanging on their wall, this makes it all worth it. It is not easy, nor cheap to produce these images, so anyone who supports me by making a purchase is helping ensure that I can continue to get out there whenever I can. I dream of the day when I can make a comfortable living doing what I love, but that can only happen if demand for my work increases tremendously. I feel like I am very close to making a breakthrough and it may only take one person or event to set me on the right path.
Every image I capture means so much due to the amount of planning involved. I cherish my adventures and I try to find as much beauty as I can in this region of Ontario. I can't simply walk out my door and photograph mountains or the ocean, but that doesn't stop me from finding alternative subject matter that is just as beautiful in its own way.
The icing on the cake is when I enter my work into competitions and go up against other photographers who are able to travel to remote locations or who live in a prime parts of Canada. Knowing that my work is on par with these other professionals is a great feeling and one I am constantly striving towards achieving with my imagery. I've been fortunate enough to take home many awards for my work both at the Provincial and National levels of the PPOC (Professional Photographers of Canada). When I take home an award, it gives me that boost to keep pushing forward and grow my craft. In 2018, I was awarded the prestigious title of Craftsman of Photographic Arts within the organization and I'm well on my way to achieving my Master of Photographic Arts designation. I have learned so much from watching the competitions and hearing what the judges have to say about all of the submissions. This in turn has a trickle down effect on my students as I pass my experience and knowledge onto them. The circle of life is great isn't it?
In conclusion, no matter what struggles you are dealing with, be it mental, physical or a combination of the two, know that there is hope and you can still live a meaningful life. We aren't here for a long time, but we can try to make the best of it while we are here. Get out there (when you can) and take in all that nature has to offer! It's ours to enjoy but also ours to preserve. Do your part and keep it clean for the next generation to enjoy!