How did I get here?

Ten weeks out from the last surgery, three more to go until the next one, followed by four months with the external fixator just to get to yet another surgery. More hospital stays; more incisions, pain, and scars. Then what?

Where will I be in six months? Will I be able to walk again? Will I have a tibia to stand on? Will I be paying tuition, renting an apartment, moving out, returning to normal? Or will I still be battling head on with the aftermath of almost a decade’s worth of bone infection?

I talk about getting back to normal, but what does normal even mean at this point? I think about getting better and being just like everybody else. It is something I want so badly, desperately. It seems so close, I could reach out and grab it, hold on for dear life, yet it also seems worlds away. All this nonsense that started with a simple broken leg… it is a cruel joke the universe devised. And the universe is laughing at me. I am bobbing in the ocean reaching out for a life buoy, but every time my fingertips touch it a wave pushes it farther away.  

Life the way it is right now has become normal. My doctor’s speak to me in their medical jargon and instead of hearing a bunch of mumbo jumbo, their words actually make sense. I hear the phrase “You need to have more surgery” and I am used to it. The words are too familiar; I know what will happen and what is expected of me. My time is measured in doctor’s appointments instead of weekends and parties or days until fill in fun event of your choice. I know that there is no quick fix for me and that the term “wait and see” governs my life. I have lost many friends throughout this journey, but patience is the one true companion. No matter what medical news I get or whatever emotions I am dealing with, the bottom line is always the same: “Wait and see. Be patient”.

This is my normal. I resent it, but it is all I know. I can’t stress that enough. The bone infection has plagued me since I was thirteen. I am twenty-three now. That is almost ten years filled with doctor’s appointments, pain, antibiotics, and scans; taking time off from middle school, high school, university, and now college. It is all I know. But I feel so robbed. How can I feel robbed of something I never had? I see the few friends I have left living their lives. They are in committed relationships, dating, working, doing fun things, planning vacations, getting married, buying houses. What am I doing? Sitting on my couch, colouring pictures, reading books, cross stitching, playing computer games. School is on hold, there are no boyfriends to hang out with or parties to go to, no job, no living on my own, no independence. I see everyone around me getting on with their lives while my life is on hold, again. I am doing what I have done too many times before – fighting to be healthy. And that fight comes at a tremendous cost. I know that it will be worth it one day, but right now it is a hard pill to swallow.

This normal has become so normal that I don’t know what else to expect. As Margaret Atwood said: “Whatever is going on is a usual”. I know it is not as things should be, but it is what it is and I am resigned to it. That is a very passive thing to so. But chronic health issues are very passive things. You can fight them as much as you want, but at the end of the day you don’t make the rules, and you can’t change them. You have to learn to live with your health issues, and that means accepting them as your normal.

When people ask me about my health, they often say “At least you will be better in x number of months, there is light at the end of the tunnel”, once I have explained what my doctors have planned for me. It is difficult for people to grasp the concept of chronic illness and ongoing medical problems, especially if they have never been affected by these things themselves. Even my fellow classmates who are studying to become nurses seemed to struggle with these concepts. It is even more difficult for people to deal with things, like the chronic health issues of a young adult, that could bring their own mortality into question. Regarding health, if it can happen to you, it can happen to me, right? And if it can happen to a young person, it can definitely happen to an adult. So it makes sense that people minimize my problems when I tell them how I am doing. It is easy to look at my bone infection in terms of short bouts of illness between long stretches of good health. It is easy to consider PICC lines and surgeries and hospital admissions as signs of poor health and to forget that I am still sick or struggling with my health when I am at home or going to school. Attending a class becomes a nonverbal signal that I am doing better. But the bone infection has not been an occasional hindrance over the past decade. Far from it; it has been the one big constant in my life, even when I am going to school.

As a result, I do not look at things in terms of “the light at the end of the tunnel” or “x months until I am better”. I am painfully aware of the past decade and all the broken leg, bone infected struggles it contained. I know too well what I have missed out on and cannot get back. The thought “I am better” has been thought too often only to be crushed with the realization that I am far from healthy. I know better now. There were no brief inconvenient weeks when I was laid up in bed, followed by months of good health. Instead, there were months of pain, numerous surgeries, endless weeks of worry, waiting for scan results and follow up appointments, years of the prevailing thought that something was wrong even when all the doctors told me that everything was okay. So when my orthopedic surgeon tells me that I will have surgery at the end of November, an external fixator for four months, and then more surgery, I don’t think “Great! I will be better in six months; life will return to normal”. No. Instead I think about what problems I could still be dealing with, the possibility that the infection could come back (again), the chance that the external fixator won’t have done what it was meant to do. I am so used to my health issues that they have become normal and it is hard to imagine life without them.

Today I am struggling a bit with the uncertainty of it all. I want to know where I will be this time next year, or in half a year, three months… The uncertainty can be daunting. It is best not to think about these kinds of things, like the future, returning to normal or getting better, because there is so much unknown and left to chance. But the thoughts still pop up from time to time. Just like a healthy person might wonder when their next date or party will be, I wonder when I will be able to walk again. But while thinking about your next date might be fun, wondering about the day you can walk again is stressful and hard.

I just can’t help thinking, “How on earth did I get here? Ten weeks out from the last surgery, three more to go until the next one, followed by four months with the external fixator just to get to yet another surgery. More hospital stays; more incisions, pain, and scars. Then what?” 

How did I get here, to the point where this is my normal? It is so far from what I thought my life would be like at twenty-three. I hope there is a better normal in my future.