Losing These 5 Things Made Me Realize How Much I Have

5 days ago, the person I have been for the past four years died a beautiful death.

As I lay on the operating table counting the last ten seconds of this life, I felt the exit of this person inside of me with each slow, deep breath of anesthesia. I remember looking up at the bright lights as I counted down, feeling the fentanyl burn the last remnants of the person I was letting go of from the inside-out. In a way, the feeling of my whole body on fire was the cremation of the sickness I’ve held inside of me for over four years, and when I took the last breath of my own, I closed my eyes and let go of the last 1,663 days of my life I have spent battling my health. I do not know where exactly I went after that, but I know wherever my body went reminded me of the beauty I have purposefully woven into the person I am today.

Five days post brain surgery, these are the parts of life I wish I didn’t take for granted.

1. Health Care

TW: medical trauma, overdose

Where do I begin with this one. As I sat with my neurosurgeon a few days ago, who is the #1 surgeon in the country for my condition, I wondered how people like me could bear this illness without the level of care I am lucky enough to receive.

Before I settled on my neurosurgeon, though, I made the mistake of “shopping around” for better care, and that mistake almost cost me my life.

My last surgery in 2019 was done at New York Presbyterian - Weill Cornell and I left my operation lucky to be alive due to the carelessness of the “top” doctors there. They made me walk into the operating room and climb on the table myself, and they opened my gown to my 19-year-old, naked body and strapped me down while I was still conscious in front of several male doctors. Later, I woke up on the operating table while I was still intubated because they overdosed me on Fentanyl and Valium and eventually had to hit my head on the table to wake me up, four hours after I was supposed to. They never updated my family or told them about the overdose, and the doctors could not explain why I had scars across my face and head even though I only had abdominal surgery. In the end, this surgeon dismissed my case, calling me, and I quote, “the hormonal teenager and her hysterical mother.”

Shopping for better health care almost cost me my life if I had not advocated for myself. Now that I am back with my original surgeon, I realize how good I have it at John’s Hopkins, where patients are treated as people, not bodies. Health care will never be perfect and the grass will always be greener on the other side. If your relationship with your doctor ain’t broke, don’t fix it. Doctors, especially neurosurgeons, hold a lot of power, and many “professionals” will use that power for their own gain even if it means killing a patient or harming them permanently.

At the end of the day, no matter how good your doctor is, nobody understands your illness better than you.

Never stop questioning, never stop advocating. Your life may be saved because of it.

2. Movement

Right when my illness became acute, I fell in love with pilates. I have always struggled with exercise because as a teenager, I was constantly overexerting myself to try and feel the “high” many of my friends described from working out. I would go on walks, runs, do yoga, spinning, personal training, but every time I left a session, I felt more anxious and depressed than before. Once I figured out the impact of exercise of cerebrospinal fluid drainage, I was sure I would never be able to workout again.

When my one of my best friends who battles Lupus found pilates, she pushed me to try a class in hopes of it helping my own symptoms. For the first time in my life, as I lay on the reformer, I felt the endorphins surge through my body with each slow movement, and since then my body has become addicted to the feeling I get from pilates. Due to the fact my ICP changes dramatically with posture and position, I found pilates to be so healing for my brain given the fact you’re mostly in one posture the whole time, either upright or laying down. After finding the best studio and instructors for me, I fell into a groove and suddenly my body started to crave movement almost every day. Right as I started to fall into a routine, though, my health crashed and I haven’t been able to go back since. At my post-op appointment on Tuesday, the first question I’m going to ask my neurosurgeon is when I can get back on the reformer.

If you are in the CT/NYC area, I highly recommend Core Burn Pilates. They’re located in Manhattan (NYC), Rye (NY), Greenwich (CT), and Rowayton (CT) and you can book your first class on their website.

3. My Hair

As soon as I first had brain surgery in 2018, cleaning my hairbrush out became an everyday, necessary chore due to how much hair I lost. Since then a lot of my hair has grown back thanks to Olaplex and Olly Heavenly Hair vitamins, and now my hair is far healthier now than it was a year ago.

Regardless, there was a part of me that broke the tiniest bit when I took off my bandage from my recent brain surgery and saw half a head of my hair was replaced by a 6 or 7 inch scar and a shaved buzz cut. Amazon came to the rescue with a $20 wig that looks almost exactly like my natural hair, but recently I have been rocking head scarves or a deep side part to cover the scar.

Not even 24 hours after surgery I hopped on Pinterest to dream about hairstyles I want to try once my hair grows back, trusting that my dream of having a French bob will come true soon enough. For now I’ll be rocking a wig and appreciating the hair I do have left on my head.

4. Family

One beautiful thing that came out of this last surgery was the love and support I felt from my family going into the procedure. The six weeks leading up to the surgery I had to retreat into myself and preserve my energy, but once we got into the home stretch, my troops started to rally around me in support. Thinking of my 20+ cousins telling me I’m a badass in our family group chat, my four year old niece’s fierce dedication to taking care of me, and my grandmother allowing me to stay with her after surgery, I walked into the operating room knowing I had everyone waiting for me on the other side.

But, the people I am most grateful for are my mom and my boyfriend. As my legal medical advocate, my mom works everyday to make sure my day goes as smoothly as possible, and that dedication from both my mom and Griffin is the only thing keeping me from feeling helplessly alone at all times. For Griffin, this surgery has always been an impending doom on our relationship since Griffin had never gone through brain surgery with me until now. Now that we are on the other side, I can take a deep sigh of relief knowing we got through the surgery and are a stronger couple because of it. The past five months have not been perfect and both Griffin and I have had to take each day at a time, learning as we go, but we both can rest knowing that we did everything in our power to make this incredibly difficult situation better. I truly believe I am walking and talking so soon after surgery because of this devotion and love Griffin has shown me, and for that I will forever appreciate him and the past four crazy years we’ve been together.

5. Travel

In terms of the four other things I miss I think travel is probably the least important, but I still battle the absence of adventure in my life every day. Even before I got sick, about a year ago I suddenly lost my desire to travel and leave home. While I do believe this need to be home is linked to the passing of my grandfather, my body has been in self-preservation mode for so long it’s almost like my brain won’t even allow myself to think about travel and leisure. Hopefully as my body heals and my nervous system calms down I will find that love for travel again, but until then, I’ll be healing and saving money for future plane tickets.