Curveballs Part 2: The Dark Tunnel

The owner of the gym asked me today “how are you, Dot?”; I completely lost it and melted. It has been a hard week and I was simply honest, but admitting to my struggle, my humanity, well it broke me wide open and the floodgates of tears emerged when I told her the truth: 

I am not okay. 

I am breaking.

I am scared. 

I am intensely frustrated.

And today, I am really angry, sad and I feel alone battling a masked enemy who keeps knocking me down and pushing my goals from my grasp. 

She hugged me and it was exactly what I needed. And then she simply listened and empathized with my reality. 

Then, I attempted to piece together my truth. How do you even tell someone the truth when there are no real answers other than that my body is in pain and it is screaming at me and my labs keep coming back with unknown red flags everyday this week? I am exhausted by the roller coaster ride of inconclusive lab results this week. One day I had elevated liver enzymes, the next I had Hepatitis A, the next it was simply old antibodies and didn’t explain my increasing enzyme levels. Yesterday, my blood pressure was alarmingly low and my kidneys were struggling. And today, I walked into the gym beating myself up about once again having to scale back a workout and not meet my lofty goals. Goals that drive me and are part of who I am.

Part of the truth is that I have a chronic disease but doctor’s haven’t committed to a diagnosis. Cue the hopeless frustration and I hemorrhaged when Tracie made eye contact and asked me to share. I told her that I  have been struggling since last August and things aren’t improving. Technically, I have struggled for years, possibly even my entire life, but the big symptoms hit hard and stopped me cold in my tracks in August 2021 while I was on a river trip. 

To top it all off, yesterday my little boy didn’t make the hockey team he worked so hard to make and the devastation, the disappointment and the “not enoughness” raged through his body last night as he sobbed and cried out in pain.  This morning, again, he woke up and mourned the loss of the team his heart desired to be on the most. Meanwhile, his step-twin (who is the same age obviously), made the team. The agony. 

This is the heart wrenching part of being a parent. Watching our children try their best, and fail and face the emotions of how to navigate life with resiliency. Much like we still do as adults. Much like I am doing now.

He said to me, “but mom, I tried my hardest and gave it my all. And it wasn’t enough.” This statement has stuck with me all day and I have been pondering how to show him he is enough, but we aren’t always enough when it’s measured by someone else’s standards.

We need to teach them by how we navigate the unknown. The “not enoughness” we all face. And all we want to do is to protect them from these hard life lessons.  

This morning, I am confident that I lost it because this lesson in parenting was simply more pain to the already full load of physical and emotional turmoil and I think it pushed my wheelbarrow of pain over the edge of the cliff. His emotions are the exact same as mine right now as I navigate my not enoughness. The tipping point. Isn’t it interesting how we can hold it all together until something completely different pushes us over the edge to share our emotions? 

What I know to be true is that I am not crazy. Something is wrong with my body and my body is sending me messages. Unfortunately, the tendency in medicine is that if we can’t measure it, it doesn’t exist and we are forced to be our own advocates, our own coach connecting all of the dots on our own as each specialty pushes us from one office to another. 

One answer has been that I have positive ANA and I test positive for Sjogren’s antibodies, of which I have many of the symptoms: (including heavy fatigue at times, dry mouth, throat, lips, and skin, excessive thirst, Dryness in my nose, Swollen glands in my neck and face, Skin rashes and sensitivity to UV light, brain fog, aching muscles, inflammation of joints, as well as stiffness and pain, swelling in the salivary glands between the jaw and ears, peripheral neuropathy, or numbness and occasional pain in the arms or legs, small fiber neuropathy, and vasculitis). But I also seem to have an array of viral overload throughout my body, also causing its own set of issues. It’s a chicken and an egg type of argument trying to determine who caused what and what came first. 

The constancy of pain is wearing. It moves all around my body, changing from day-to-day and hour-to-hour. One day it is in my knees, another it is in my left thumb and my rib cage. The pains are sporadic, sometimes so sharp and sudden that I scream out loud. Some nights my body shakes so intensely, like a massive dose of caffeine is running through my veins that I cannot sleep. 

But look at me… I look healthy, young, vibrant and I am active. One doctor even told me that is why he isn’t very motivated to help me find answers because I need to be less active and far more symptomatic for his attention. He’s lucky I didn’t flip him off and deck him. It haunts me that I cannot control this disease, or these symptoms, through diet and exercise. I always thought that that was the ticket to avoiding disease, but you simply can’t trump genetics and other factors sometimes. 

I feel hopelessly lost yet wholeheartedly determined in this tunnel of twists and turns and roundabouts as I search for answers. It’s a dark rollercoaster and the light at the end of the tunnel is dark - barely even lit with a mere candle. I want out and I want to meet my fitness and business goals and not feel pain and fatigue at every turn. Yet, I will not give up, even if some days I lose control of my emotions. I feel like my body is failing me and I can’t meet my fitness goals, yet I never give up and I keep showing up. Sometimes broken. Most times half of who I used to be physically. 

For me, the desire for a  diagnosis brings hope of a treatment or a cure, or both. The reality is, it will likely be a series of diagnosis’ and treatments - not one definitive fix or cure for what ails my body. It’s scary and I feel alone as I beg for answers. As I try every single supplement and treatment and I do all the “right things.” As I am hypervigilant with my diet, my sleep - but seeking answers and not receiving them is EXHAUSTING.  

I am starting to see how deeply programmed I am to blame myself. To think that I did something wrong or that I didn’t do enough. Or that I did too much. Or maybe I didn’t ask for enough help? I am learning to accept that I did nothing wrong and that it isn’t because I am not enough or I am not doing enough. 

In the words of Cheryl Strayed, one of my favorite authors, “Most things will be okay eventually, but not everything will be. Sometimes you'll put up a good fight and lose. Sometimes you'll hold on really hard and realize there is no choice but to let go. Acceptance is a small, quiet room.”

I want to sit in this acceptance and be the guide that my son needs right now, as he navigates his own reality that is all too similar to my own. I want to model to him what resiliency is, and what it looks like to share our emotions of fear, disappointment, and frustration. And most of all, I want to look him in the eye and hug him today after school and tell him that he is, and always be, more than enough.