My Ponytail

I wore my hair in a ponytail the other day. A ponytail! While this may be an everyday occurrence for some people, it was a major milestone for me.

It’s now been 6 months since my last craniotomy.

After surgery, my recovery was so gradual that sometimes it felt as though I would never get better. At timesit even felt like I was getting worse because progress was so minimal from one day to the next. I had never been so physically broken.

Then, months after surgery, I started to realize how much progress I had actually made. There were several milestones, and they started small; the first time I held my own head up for an hour; the first time I stood up after surgery;

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Even coming home from the hospital was a celebrated milestone. Then, the first time I walked to the bathroom without the cane; the first time I slept through the night; the first time I went an entire day without a nap or pain medicine; the first time I was able to hold my kids;

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Then the milestones became more spaced out; the first time I was able to drive again; the first time I did 10 minutes of physical activity (running in place); the first time I was allowed to get on an airplane; the first time I could tolerate wearing a hat, and the first time I was able to submerge my head under water;

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But, until just recently, I still hadn’t been able to tolerate wearing my hair in a ponytail.

When it happened, it was completely unintentional. I’d had a long day at work, and was washing the make-up off of my face. My hair clip had gone missing (a common occurrence in a household with 2 toddlers who “borrow” anything that looks remotely interesting). So, instead, I grabbed a black hair tie from the bathroom drawer, and awkwardly pulled my now short hair into a tiny ponytail.

Then, my boys came running in like whirlwinds. As always, they needed milk, water, a stuffed animal, books, and help brushing their teeth before bed.

Nearly an hour passed before I realized my hair was still in that tiny ponytail. I went to the mirror and looked at my reflection. I smiled. Another milestone. Another small reminder of the progress I continue to make.

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I am not fully healed yet. But, that pony tail promises that one day soon, I just might be. 

This is my story, and it is not over yet.

This is what support looks like

Within a 6 month period (June – December, 2018), I had 37 office visits, over 30 recorded focal seizures, 15 MRI’s, 7 CT scans, 4 hospitalizations, 2 craniotomies, 1 infection, and 1 incurable diagnosis, Neurofibromatosis, type 2 (NF2).  I had 17 Meningiomas (brain tumors),  6 ependymomas (spinal cord tumors), and 1 Acoustic Schwannoma (brain tumor in my ear). And a partridge in a pear tree.

I learned so many things during that period of time. One of them is support comes in many formsI also learned that it changes over time. No matter what form it takes though, a support system is meant to hold you up when things feel like they are crashing down.

Overwhelming Support

Initially, our extended network of friends and family were as shocked as we were by my diagnosis. We were flooded with cards, flowers, well wishes, handmade children’s art, visitors, and more thoughtful gifts than I could count.

Support

During this time, my husband, Josh, and I leaned on everyone. We were all hurting, together. I say “we” because it is not just the person in the hospital bed who needs support. I was fully aware that my diagnosis affected everyone I loved. At that time, they needed my support as much I needed theirs.

Private Support

After a few months, the ‘hype’ of my sudden diagnosis and back-to-back surgeries began to wear off; our meal train ended, and our wide circle of friends and family weren’t checking on us quite as often. During this time, Josh and I learned to lean heavily on each other for support. 

He needed me to be okay just as much as I needed him to push through all the medicine my body required to beat the infection. The infusion process took about 30 minutes, and it quickly became our daily reminder that we were fighting this battle together. 

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In addition to taking care of me, and my PICC line, Josh also took on all of the parental responsibilities and housework we had previously shared. He bathed our crazy babies, made them dinner, picked them up from school, and put them to bed. He did all of our laundry, grocery shopping, fed the dog, and took me to appointments. It was like he was a single dad who had 3 kids (me being one of them)

When Josh had to go back to work, things changed again. I was still vulnerable and unable to take on my share of our daily responsibilities, and he could no longer do it all.

Balanced Support

That was when we realized we couldn’t do this by ourselves; we needed help.

During this time, Josh and I learned to lean on those who love us most.

Grandparents to the rescue! My mom-in-law stepped in immediately to help with our boys, take me to appointments, and make meals. She was available at the crack of dawn, and as long as I needed her until Josh got home from work at night. She offered irreplaceable love, and both physical and emotional support.

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My dad and step-mom also recognized our unspoken need for help, and flew in from Kentucky to offer reinforcement, at just the right time! They stayed with us for nearly 2 weeks, and did everything that I couldn’t at that time, allowing our boys to maintain normalcy in their own home. 

I remember waking up late one morning. I grabbed for the baby monitor and realized it had been silenced. I listened, and heard the most amazing sound in my house: normalcy! My dad and step-mom were playing with our children, and feeding them breakfast. Coffee was brewing; the smell reminded me of when I was a child. Those moments were the most healing. We were not alone.  

I’ve always said that having an amazing support system was critical to my recovery. Now, you know why.

We got through it. Together.

This is my story, and it is not over yet.

I want to take a moment to extend a heartfelt THANK YOU to every person who had said a prayer, sent flowers, made gifts, visited, brought meals, or wished us well throughout this process. We are so blessed to have the support system we do, and forever grateful.

Appearances

Physical appearance is exactly that; an appearanceAnd, appearances can be deceiving, especially when there is so much that lies beneath the surface.

Many conditions that are completely invisible to those not experiencing them first-hand. Neurofibromatosis II is often one of them.

After having my second craniotomy, I didn’t want to be labelled or defined by a diagnosis, or as a ‘sick” person, so I put a lot of effort into my appearance; making myself look “fine” on the outside.

I covered my PICC line with a long sleeved shirt, used makeup to hide the dark circles under my eyes, and cut my long blonde hair short to help blend in the multiple bald spots that had been shaved away during surgeries. I even learned to style it just right so that the majority of my stitches were covered.

In hindsight, my efforts were a bit vain. But, my appearance was one thing I felt as though I still had control over, when so many aspects of my life and health were spiraling out of control.

The truth is, you can’t see brain and spinal tumors on the outside. You can’t see exhaustion, brain inflammation, dizziness, or tinnitus. You can’t see remnants of seizures; numbness and tingling. You can’t see pain.

Part of me was grateful that strangers, co-workers, and even my own children couldn’t see all of the symptoms that were laying right below the surface. “You look great!” they would say. And I let them believe that I was great.

Another part of me wanted to wear a t-shirt that said something like “fresh out of brain surgery” so everyone would understand.

I remember walking into a neurology appointment one afternoon, just two weeks after surgery, with high hopes of having my stitches removed that day. It was one of those days; I’d had a migraine, and a hard time getting out of bed. The hour long drive to the medical office has zapped all energy I had left, and my body was physically shaking as I walked from my mom-in-law’s car to the building (she was kind enough to chauffeur me when I couldn’t drive). I actually wondered if I might pass out before I got to the door. A man was walking in ahead of us, but my legs weren’t moving fast enough. He glanced back, saw that I looked “fine,” and let that heavy door shut right in my face.

It was the first time that I wanted to scream “I just had brain surgery!!” How could he not see the pain I was in, and how much I was struggling?

What I didn’t realize at the time, was that there would be many more moments when I wanted to scream and shout until everyone ‘got’ it.

There would be moments at work when I would cry in the bathroom because a sudden migraine had hit, and I couldn’t open my eyes against the light over my desk; there would be moments when I had to hide from my children because their normal sounds would make my head pound.

I was not fine.

My brain had just been tampered with – twice in 3 months. A portion of my skull had been removed, and was now being held in place by 5 titanium ‘snowflakes.’ My scalp was held together by thread. Just to get out of bed each morning, I required a handful of medications and an IV infusion to keep the infection from coming back.

I took roughly 25 pills per day, had a home health nurse who cared for me, and relied on my husband to push antibiotics through my PICC line multiple times per day.

One day, I would be “fine” again, but for now, I was broken. And that was okay.

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True healing takes time. Although I’ve never exactly been patient, I knew I owed it to myself to take the time I needed.  Eventually, I knew healing would come, and when it did, I would hold the door open for every person behind me, even if they appeared to be “fine.”

This is my story, and it is not over yet.