Retethered Yet Again

Feb 5, 2022

I opened my door today to see a blue and white package. I grabbed it and wheeled to my kitchen table. It was a copy of my first book: “An Untethered Truth: A Medical Journey.”

I picked it up and smiled, in awe and disbelief.

“Holy cow, I did it; I’m a published author.”

My phone is ringing now. The caller ID says it’s my neurosurgeon. I answered the phone and my doctor started talking. He confirms what my soul has been telling me.

“I think you’re retethered,” he says with regret.

I was silent, unsure of what to say. This would be the third time I’ve been retethered as part of my Tethered Cord Syndrome.

Tethered Cord Syndrome is a progressive disorder, where tissue connects to the end of the spinal cord and tethers to one’s tailbone. This usually occurs in the womb. Because my spinal cord has been tethered to my tailbone for most of my life, the cord has abnormally stretched. This has caused spinal cord damage.

While on the phone, my neurosurgeon explained that the procedure would shorten my spine by removing vertebrae(s). The purpose of this is to reduce the friction on the spinal cord by shortening the length of the spinal column. This would allow the spinal cord to have more slack, less painfully tight. I will follow up with my neurosurgeon in the next month to discuss this more in depth.

I hung up and put my cell phone face down on the kitchen table. I didn’t want to look at it the phone. I was numb. I looked and saw my book resting next to my phone. I hold my book and skim through the pages. It was ironic that the day I found out about possible retethering, I received a first copy of my book. I saw this as a sign from the Big Man Upstairs: a reminder I need to keep going.

A couple of weeks earlier, I learned that I needed yet another surgery for my bladder. I’ve always had issues with my bladder, and it stems back to Tethered Cord Syndrome, and a genetic condition called Ehler-Danlos Syndrome. While speaking with my urologist, she felt it was in my best interest to have a suprapubic catheter surgically placed in my stomach—a flexible tube that drains urine out of the bladder. The tube would be inserted a couple of inches below my belly button. This would be an outpatient procedure. Originally, I had a suprapubic catheter placed in November 2021; however, it fell out. The new catheter will be placed on Feb. 18.

In life, one has to press on during challenging times. It’s not easy, whatsoever. However, it’s what we all have to do; it’s critical to take care of ourselves, to reach out to loved ones to lean on them for support.

In situations, consider talking with a therapist. There is no shame in talking to a professional. It can help to talk to someone who’s a third party and has an unbiased opinion. Each day, write down what you’re grateful for. It could be as small as getting out of bed, wearing an oversized sweatshirt, or singing in the shower. We can’t control what happens to us. However, we can control how to handle the situation.

It has taken me time to open up about what’s occurring to me. At first, I wasn’t ready to talk about the retethering and bladder surgery. I thought I could just ignore the situation entirely. Within a few days, the emotions hit me out of nowhere. I wasn’t OK with what was going on, and I needed to deal directly with the situation. No pity party… If you can’t help yourself, how can you help others?

I reminded myself to not give in. Losing is not an option. I’m not only fighting for myself; I’m fighting for others who may not feel like they are strong enough. If you’re going through a hardship or crisis, please know that you’re not alone. One will always have good and bad days. That comes with life. So, take one day at a time. And if you stumble, get back up and please persevere.


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