When Your Life Takes a Painful Detour: And Your Plans Are No Longer Yours

When I was in my final year of high school, we were given a task to plan our future. We were required to write a one-, five- and ten-year plan for what we wanted our futures to look like. I spent hours meticulously piecing together the most ideal life—the one where all my hopes, dreams, and wants would come true. Every detail of how I would accomplish everything in my life plan was there, ready to take action to achieve my goals. It’s been sixteen years since I wrote that plan, sixteen years since I thought I had it all figured out. My brain keeps taking me back to when my naive teenage self wrote a plan in which I didn’t have any pain, any suffering or any tragedy. There were no side notes for what to do when your life takes a painful detour like suffering from a chronic illness, having surgery that completely alters the trajectory of your future, or living with a condition like a Neurogenic Bladder and learning a new way of life with a Supra Pubic Catheter. 

When Your Life Takes a Painful Detour: When It All Crashed Down

Perhaps my mind keeps revisiting the days of writing the “life plan” because, in the last year, I’ve completely lost the path I was on. I went from working for an education company in Toronto, having money to live comfortably, not worrying about paying the bills, and excited for a future with a company I intended to stay with, to living a painful life with a chronic illness. My morning routine used to consist of one hour of exercise, eating something super healthy and getting my kids set up for their online classes, while I got prepped for morning meetings with my company. Fast forward to now, fighting infection after infection, being unable to secure a remote job (because the market is oversaturated for one, and for two, there aren’t many companies that will accommodate someone who unfortunately has to seek medical attention frequently.) I lost my ability to urinate like a normal human being, and I now live with a Supra Pubic Catheter coming out of my lower abdomen, causing pain, blood clots and bladder spasms. 

The Isolation That Comes With a Chronic Illness: No One Talks About

Isolated, that’s how I feel. I try to paint myself as being positive and looking for the best in each of these moments. But sometimes, I feel isolated from the person I used to be. Unable to make plans long term because my health keeps taking a turn, and constantly turning down plans because the pain is too much. I want to be the person I was, but how? How do you get back to the person you once were when your life is altered by an accident, a mistake during surgery, medical neglect, or job loss that hit you hard? Is it possible to get back to being that person? Or is that person gone forever? 

One side of me wants to curl up in a ball and accept the fate that I’m enduring now. Accept that I will never be who I was and that the opportunities available to me before the drastic change in my life are now gone and won’t return. Alternatively, another side of me wants to embrace this new way of life for me. Recognizing that my life has taken a painful detour, but that it doesn’t have to define me or my future. I can reach for the stars even while being burdened with a Neurogenic Bladder, a Supra Pubic Catheter, and chronic infections. I’ve never been the type of person to just “accept fate” and not try to reach for anything better. In reality, I’ve always been the type not to accept the negative and instead to work tirelessly for the good. 

There’s Safety in Giving Up

Putting yourself out there when you’ve already been shot down, giving yourself another chance to become the person you want to be even though you’ve failed before. It’s scary. And truly, it can seem so much easier to give up and accept the new reality. It’s safer to stay in the bubble wrap in which you’ve wrapped yourself. But what you don’t realize is that the bubble wrap that you think is keeping you safe is, in fact, suffocating you. You’re covered in scars, some visible and some buried deep within. If you let yourself be vulnerable, if you allow yourself to reach for goals or plan some sort of a future from the ashes of your burned-down dreams, then they will see. They will see your weakness, the parts of your life you’re ashamed to show. Falling back and allowing yourself to sink into the ground is safer. Especially when you’ve already failed. There’s something so painful about failing again. 

We Live in a World of “Leveling Up,” But Where Does That Leave You When Your Life Takes a Painful Detour? 

Throughout the health crisis that I have experienced in the last year and a half, I have become all too aware of how society as a whole leaves those who are suffering behind. Someone with a disability gets the perks of having a parking spot near the front of the store, and society thinks this sacrifice is suitable; therefore, there’s no further need to recognize those falling behind in a society that is all about getting ahead. Like someone who has fallen at the front of the stampede, they now desperately hold their hand out for help while being trampled by those who can run away. We like to think that by labelling our businesses as “inclusive,” we are helping people who are falling behind. But what are we doing? Are we providing opportunities for the people who are suffering with a disability?

I never would’ve known this until it happened to me. I have suffered from endometriosis pain since I was 12, but never had it rendered me unable to participate in regular life activities. It wasn’t until a surgery that was meant to alleviate pain catastrophically changed the trajectory of my life that I realized that life for those living with disabilities is cruel. And what are we doing to change that? Are we aiming to help people struggling with a physical or mental disability? 

When You Cheer For Yourself: Cause No One Else Will

Throughout this painful health journey, I have found that I need to be cheered on, but realistically, it isn’t something that happens. There is no one there with me while I change a Supra Pubic Cite dressing in my room; no one sees when I’m whimpering in pain because a bladder spasm has rendered me crippled. No one knows the anxiety that washes over my mind when I see my catheter bag filled with blood. Because no one can see just how much pain you are battling on a daily, it’s not possible for them to cheer for you when they see your small accomplishments. But truly, each and every accomplishment, as someone suffering, needs to be celebrated. And that’s why I say: cheer for yourself. Cheer loud, proud and often! It’s true that no one knows what you are suffering through, they don’t know just how hard it is to get dressed in the morning or to record that Reel for Instagram. To hide the pain long enough to present yourself as “normal” for a society that only accepts “the best.” But you do. You know how much effort that took for you to accomplish. So cheer! Cheer loud. 

Learning to Love the New Me

There isn’t much help or guidance for what to do when your life takes a painful detour, but what I can tell you is that it takes a lot of guts to pick up the pieces of your life and to not only glue it back together but, turn it into something better. My hope is that you realize just how strong you are. I want you to recognize that even when this journey is painful, exhausting and overwhelming, you show up. It takes a massive amount of effort to get out of bed in the morning when you’re suffering. The strength you have to tap into to try to make the best of this new painful detour is unmatched. I see you. Your bravery is like none other. I’m proud of you for taking the worst and working to turn it into something good. Keep going, little fighter, don’t give up. This detour is actually the pathway to a better future.