It has been quite some time since I have said that phrase on this blog. 168 days, in fact.
Life is ironic in those ways, it seems when we are going through a challenging period where we would seek support, we often turn away and cocoon ourselves. A coping mechanism. Shielding ourselves from the world. Working to heal.
That is precisely what I have been doing. Working to recover. Working to heal. Working to survive. Learning to live life fully again. Thank you for holding and sharing space with me in the duration where I took a step back. Sometimes in solitude comes the true healing.
While summertime is supposed to be filled with lazy days, catching up with old friends, and enjoying the amazing weather we have in Madison, it is also the time I try and schedule needed surgeries. Timing these things around classes is always paramount in my mind. My latest surgery was June 28th, for a fundoplication and hernia repair. The operation itself went well. With surgical precision, they pulled the part of my stomach that slipped into my chest cavity down, and tightened my diaphragm to prevent the hernia from recurring. They did a 270 degree wrap of my stomach around the juncture where my esophagus and stomach meet. Technically, the surgery was a total success. That is just the technical side, however. The reality was, recovery became… a nightmare.
Once the surgery was complete, we were just holding our breath, waiting to feel a sigh of relief that things went well and that my body was healing as it should. The first month was absolute agony. My esophagus was so swollen, its opening was the size of a pencil eraser. Swallowing pills, even crushed ones, was excruciating. Total liquid diet. I could not lift my arms high or breathe deeply due to the sutures on my diaphragm. I relied on my family for everything. To have my independence suddenly taken away was beyond emotionally painful.
The recovery continued to be anything but what we were hoping for. It has felt like a bad dream, one from which I am constantly trying to wake up, but cannot open my eyes. After the surgery, I was unable to tolerate any solid food, and consuming things caused severe nausea, abdominal pain, and a sensation of being incredibly full. All the hallmark symptoms of gastroparesis, an illness which took away my quality of life for so long. The team assured us that most people recover from this surgery within a few weeks. But, they also said that with all of my complicating factors, they didn’t know what the recovery would look like. Honestly, we never imagined that I wouldn’t be able to eat again. This brought up so many emotions of fear and sadness for the years I couldn’t eat anything at all. It has been a constant game of trying to regain muscle and not become too weak or malnourished. No hunger cues had been felt that entire time period, I only knew I needed to drink something when my hands would get shaky. I was trapped. I lost all my muscle mass. Sitting up was a challenge. Walking around was difficult. My hair had thinned. Nails peeled. The worst outcome possible had happened, and I did not know how to accept it. I did not want to accept it- who would? In a society where your worth is often dictated by your level of abeleness, I felt useless.
It took 13 weeks before we were able to find anything that brought relief. The decision was made to try motility medications for my stomach. I started taking erythromycin four times a day, before all of my “meals”. On day four I felt it- a gurgle in my stomach. A sensation I was worried I would not feel again- hunger, which in turn meant it is now time to start introducing solid foods. Solid foods after so many weeks just imagining them and hoping to taste them and their textures again one day. Tears flowed. After three months and two weeks, progress. Solid food. Victory.
The healing has continued since then. It is an immense privilege to be able to consume “normal” solid food. I never knew that was a privilege until I could no longer do it when I was 16. It has not been easy, but I am reminding myself it is a work in progress.
Sometimes I eat normal food and it feels ok. Other times, I quickly start to feel the urge to dry heave, get nauseous, stomach pain, and my belly becomes distended. While I have the urge to vomit occasionally, I am unable to do so. Physically I can’t barf. That was not something I expected, and is just another reminder that my body is forever altered after this hurdle.
To be honest, this has been the darkest five months and 15 days that I have had in a long time. There were some days I was so sick and terrified, all I could do was take it minute by minute. Behind closed doors I was the sickest I had been in years. And not knowing if things would improve was just very frightening. But we persisted.
The most beautiful dichotomy has been formed ever since my operation in June. It has been a period where my health became so fragile, yet we grew to be so strong. That is the beauty in life.
Two months after my surgery, I returned to campus this fall and started a full load. I wasn’t able to tolerate any solid foods at this point. Drinking Ensures throughout the day, eating peanut butter, trying to get in calories…that was my main goal as I got back to class. And being so deconditioned once again, that made navigating the campus really difficult. As I progressed to solid food, I celebrated with tears and floods of emotions. It has been a really tough semester. Navigating all of my health issues, on top of my stomach not working again…it was a lot to manage. Walking to class was really difficult. Having the stamina to make it through the entire day of classes and then homework, that was hard. Not knowing if I was going to be back to where I was before the surgery, that frightened me to my core.
I share this vulnerable story, my truth I am learning to own and embrace, as a reminder: you all are capable of whatever it is you set your mind to.
We live in a society where we are expected to be perfect, easy, and able bodied. Where success is defined as having a job or going to school. Where your worth is determined by your contributions in regards to societal norms. That is the surface level aspect of life. The truth is- you are worthy of a lifetime full of joy. Our voices have so much power. When we advocate, we eventually see change. When we persist, we heal. When we unite, we transform reality.
It has been one of the darkest periods of my life, but I am seeing the light everyday now. I am healing. I am recovering. I am coming home to my own body once again. I am able to go to class and pursue my passions, constantly feeling humbled and honored to be learning from my peers. I have learned how to heal, balance classes and my health and pursue my passions of advocacy and awareness. I am profoundly grateful and privileged to say that. It makes the agony of this summer worth it. In the end, it is always worth it. And I feel truly that the best is yet to come.
We are all unstoppable when we put our minds to our goals, when we advocate for what we need to live our life to the fullest.
So this is me, this is my story of the past five months, and it feels so comforting to be back. I missed writing.
Hugs, and all of my love- to healing,