Off the Grid, Back on Track
How my autoimmune disease took away my ability to walk, then helped me get back on my feet.
An autoimmune disease develops when your immune system, which defends your body against disease, decides healthy cells are foreign. As a result, your immune system attacks healthy cells, which in my case affected my joints, tendons and bones. I had been living with chronic pain for almost two years, however what started out as a mild bruising sensation in my lower extremities, became a sharp aching pain, gradually spreading to other parts of my body, ultimately leaving me unable to walk.
For those who know me well, I’m usually very active, going to the gym, playing sports, or running along the coast. I usually work a couple jobs in order to finance my lengthy trips living abroad, however, six months ago I stopped everything because the pain got so severe. To be honest it was rough not being able to participate in daily activities and having to dread the idea of standing up and going from point A to point B. I had to maximize my trips and minimize my steps and for the majority of the time I was housebound aside from the endless doctor visits, chiropractors, physical therapy sessions and so forth.
I’m not going to go into too much detail, but having chronic pain long-term can affect not just the body, but also your mental health. It’s hard to think straight when the pain prevents the body from resting properly, resulting in lots of white nights and days endured through heavy painkillers. The worst part for me though, was not knowing what was wrong and having different doctors look at me like they don’t know what to do next.
After my initial struggle to acknowledge the lack of control I had over my situation, I decided to accept that this “thing” was going stick around for a while. I reflected on my life and I asked myself the big questions in hopes of finding some clarity.
I didn’t want my condition to define who I was as a person, and so I took some time to think about what characteristics did in fact reflect my being. I knew my options were limited, but any obstacle can become an opportunity if looked at under the right lenses. I started from the very beginning, from my earliest memories to the moments of intense emotion, seeking to understand what experiences really sculpted and directed me to the pursuit of happiness.
What used to make me feel alive?
Over the course of the last few months, I’ve immersed myself in painting and I made the overnight change to focus my attention to the creative arts. This switch allowed me to brainstorm and to come up with my latest collection of black and white portraits featuring colorful landscapes on birch wood panels. The portraits I paint offer insight into my world. Their body language reveal an air of disconnectedness with an undercurrent of nostalgia — in other words, the painted figures seek to escape their reality, and to travel to those distant places painted across their faces. This series was very cathartic in the sense that although I felt trapped in my body and my new life seemed so dull and gray, I could still rely on was my ability to dream and my curiosity for the world.
During the process of creating the collection, I saw a specialist who gave me a list of twelve different blood tests and one of the tests came back positive for a genetic marker common in people with autoimmune diseases. Thanks to the doctor’s help, he referred me to a rheumatologist who diagnosed me with Ankylosing Spondylitis and I was immediately started on the new medications. When I researched the condition, I learned that a lot of people suffer from autoimmune diseases and that the average time it takes for someone to be diagnosed properly is three and half years. Symptoms can be misinterpreted and it’s not until certain blood works are taken, that the true culprit can be revealed.
Looking back at my summer spent painting, I sometimes wonder what would have happened if I had been able to jet off to Europe and see old friends and make new ones. If I had the choice to choose between having a summer filled with adventures on the road or having a complete collection of 16 paintings, I think I’d still chose the latter; with the autoimmune disease and everything. Rediscovering my passion for painting became an adventure in itself and I’ve grown so much without ever leaving my hometown. I’ve reached out to others around me and I’ve become more connected in the art community, attending events, galleries, and meeting other artists. Spending my summer at home has also helped me reconnect with my family and we’ve become very close.
Since I’ve been properly diagnosed, I’m on the path to recovery and even though the new medicine I’m taking helps, the pain still comes in waves. I understand now that my autoimmune disease is real, and that it has the power to slow me down, nevertheless it is never going to stop me from fulfilling my goals.
I’m one of the lucky ones. I developed a debilitating disorder that not only has a name, but also a cure. Thanks to an injection in the leg I take every two weeks, I’m able to resume the old life I used to live but this time, I’ve got a whole new perspective. It’s a tough pill to swallow, but sometimes we need to lose, to hurt, and to suffer in order to be happy, to grow and to appreciate. Unfortunately, some people don’t have that luxury and suffer alone, or even worse, have to hand over their happiness, aspirations, relationships, and futures to an incurable disease. Being healthy isn’t a right, it’s a miracle; and it’s one that can be easily taken away. So if by chance you were blessed with a healthy body or even one that’s working but at a bit slower speed, there is still hope. Where you start, doesn’t dictate where you’ll end and there is always the potential for a brighter future — you just have to go out there and find it.
I truly believe that everyone has something to offer to this world, whether it be a smile, a conversation, a skill, product or service or even a relationship. So stop pursuing the things that take you away from the things you love most and the people you care about. Start creating value for yourself and embellish your world with your personal touch — whatever that may be. If you’re dissatisfied about something in your life, find out what it is and start looking for a solution. Ask yourself the tough questions and be patient in finding out the answers. If you don’t ask, you’ll never know. Looking back on it all now, I guess the saying is true:
Sometimes the things we can’t change, end up changing us.
This autoimmune disease took away my ability to walk for several months, but in doing so, it slowed me down enough to help me find purpose, get back on my feet and on the right track. With a full heart I’m proud to share this experience with you and to reveal my latest collection, “OFF THE GRID.”
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Thank You!
