“No Pain No Gain” was (and still is but with new understanding) a mantra I lived by religiously. I strongly believed that conquering the pain brought on by intense training and injuries sustained, were only signs of strength. Having also worked as an occupational therapist, I felt quite well rounded with my knowledge and experience of what is known as the "world of pain". That said, my experiences never put me in a position where I would find myself stressing and panicking, every minute of every day, about whether I would ever walk again, whether my immobility and physical status would ever improve and allow me to return to the activities and routines that I used to take for granted. Even when I had surgeries in the past, or injuries that continue to linger for years and years, nothing ever stopped me in the middle of the track where I had to question deep life philosophies and try to provide myself with an answer to the "why" questions. I always saw the light at the end of the “recovery tunnel” and knew that an end point to the crippling pain and limitations would soon be reached and I would be healthy again. When that knowledge and assurance of full recovery diminishes, stress, anxiety, despair and loss of hope quickly sets in. Hence to simply state that chronic pain is pain that persists for a long period of time now makes me question whether this sort of definition actually diminishes the reality of what chronic pain truly involves.
About 5 years ago I sustained two separate injuries in separate occasions. One to my lower back and the other to my right foot that were complicated enough on their own, involving investigations and hospital treatments that drew out over months and years. Unfortunately, the incidences overlapped where I found myself having to manage both injuries at the same time. Rolling in bed, standing up and walking a few steps, sitting down or even simply putting my putting my chin to my chest brought on the most excruciating pain that I had ever experienced. At the time I had put aside my profession as a health professional and was performing overseas in one of the biggest circus shows in the world. Shortly after I returned back to Australia due to the non-recovery of my back, I injured my right foot in a rock climbing accident. The accidents sustained from these situations left me unemployed over the years as going into hospital for surgeries and medicals, lying in bed and mobilizing uncomfortably with the use of crutches became my “full time job”. In addition, ongoing compensation of the body to cope with limping and uneven postures brought on new pains arising in other areas of the body, adding new challenges to the already existing struggles of the initial injuries. Options of amputation or repeating surgeries...again...became just an everyday thing to hear. As I started to realize the reality of my situation, the shock of being told that I will forever be walking with complications and pain diminished quickly and my feelings of distress and frustration soon turned to an unhealthy state of numbness.
Today, I am able to ambulate without the need of crutches. However, to walk or stand for more than 15 -20 minutes becomes unbearable and I would soon find myself wishing desperately to just stop everything mid track so I can go lie down and wait for the pain to hopefully dull down to a more bearable state...which can take up to hours. My daily life of being on my feet from morning till night, walking, running, dancing and not stressing about pain and energy seems now only a distant dream. Instead, the vicious repetitive cycle of little to no sleep, strong medications, hours of crying and frustration, and only being able to do maybe one tenth of what I could before in a day is more realistic of my present life. My energy conservation and ability to push through the simplest of tasks runs very low as I constantly battle, hour after hour, to physically and mentally cope with the extreme pains that run throughout my entire body while doing what I have to do for that day.
What makes my personal journey very difficult is the fact that I find myself always fighting within me to unlock that balance between acceptance and letting go. The stronger person in me tells myself to try push the pain aside, and not to be upset that I cannot do what I used to do without constant stressing about the impact and consequences on the body. I try hard not to make a big deal out of how I am actually feeling physically and emotionally inside, how much life has changed and had to be re-adjusted, and share only my deepest of thoughts and emotions with those I trust. On the other hand, my human side brings me down and I can find myself wanting to give up fighting, struggling to externalize any positive energy and hope that I may have remaining in me. I can dwindle quite quickly into a dark world of loneliness surrounded only by confusion and frustration feeling trapped and imprisoned within my own body and mind.
To those who know me, I like to laugh, joke and smile. In order to cope with all the pains and anxiety and feelings of hopelessness and loneliness, I try to self manage by surrounding myself with others who may offer me the support and inspiration I am needing. I continue training and competing, performing and teaching to the best that I can as these things are what enables me to see the positive light and to hope for a day of lesser pain. My textbook knowledge of chronic pain and treating patients in the past only allowed me to provide so much empathy and help to others. Of course I did my best to offer strategies and interventions that could help them with their pains and reduced independence. Today, however, I have gained a great wealth of understanding and insight into the world of empathy that I never once even knew existed. What I once thought were supportive words of love and encouragement, despite good intentions, were actually words that may not offer the true support and understanding that one affected by chronic pain needs to hear. Telling someone how they should or should not think, should or should not do, or questioning whether they have tried certain treatments often leaves one feeling misunderstood and not listened to. My understanding of how much the right or ‘not so right’ things said to us that can make or break our sensitive souls, has allowed me to draw out more empathy for others experiencing any sort of pain or struggles in life. Someone dealing with never ending, life-changing pain is by far not ignorant to what he or she can or should be doing with his or her own health. Listening to the person and acknowledging their feelings is the most support that can be offered.
Regardless of judgments and misunderstandings, my own situation gives me strength to continue doing what I can to help others and myself. Sitting alone at home with pain does not put a smile on my face. Instead I choose to continue participating in activities that have great meaning to me. Although it requires much more energy and results in much more pain, knowing that it can bring me happiness amongst difficulty, and also inspire others in different ways is something that this whole experience so far has brought to me as a gift. I can only hope that, by using my situation and turning it into something that can bring light to others, I can contribute to bringing greater awareness to what chronic pain really involves, something that no textbook definition could ever explain and portray a genuine picture of. As invisible as it is may be masked by the smiles, laughter and activities that one with chronic pain may seem to be sharing with the world, there are so many deep layers of struggle and difficulty that only the person will truly know and feel. Without the love, support, and genuine belief and trust offered to me by those around me, and my own internal drive to keep pushing, I would most likely be displaying exactly what the world thinks of those in severe chronic pain...miserable, alone and hidden.