10 Years Later: The Life-Changing Journey of Having Seizures and a Brain Tumor

10 years ago today, our lives changed. Forever.

After a fairly normal Sunday, I was sitting on my couch while my wife, Laura, was cooking dinner and prepping meals for me for the upcoming week.?

I only remember a couple of seconds of what happened next.

My arms came up by my side, I looked at my wife and tried to yell out to her yet couldn’t speak.

It felt as if I was drowning with each next word I tried to utter. I could only see out of my periphery and could hear her scream out.

While it was likely only a few seconds before I lost consciousness, it felt like minutes.

My next memory is sitting up in the back of an ambulance with a paramedic speaking loudly at me.

He was asking me questions that I knew the answer to yet couldn't verbalize. This continued on for a few minutes until I could verbally respond to him.

I looked out of the back of the ambulance to see several people standing there, fire engines, another ambulance, and police cars.

I was in a daze. I looked for my wife and asked her what happened.

She was shaking and barely able to speak so the paramedic told me that I had a tonic-clonic (grand mal) seizure.

I would come to find out that when the seizure started she screamed so loudly that three of our neighbors, including a cardiac ICU nurse, came rushing upstairs while she called 911.

Once I arrived at the hospital I had another tonic-clonic seizure.?

I don’t remember much of the rest of that night.

I know that I went for several X-rays, cat scans, and an MRI that first night.?

I was told that I had severely dislocated both of my shoulders and there was an irregularity in my brain.

It was originally decided that I would have my shoulders reset on that Friday however after a couple of additional tests later that week we would find out that I had actually shattered both of my shoulders.

I had fractured both of my humeri and rotator cuffs and lost so much bone that they needed to use donor bone, and repaired them with bolts and fiber wire along with two screws that were inserted into my left shoulder.

The rest of that initial week fades in and out.

Laura and her mom have helped to piece parts of it back together for me but due to the heavy pain meds that I was on, I don’t remember as much as I would like.

I remember feeling my stomach drop when I was told by my orthopedic surgeon that I would never be allowed to lift weights again — something that I am deeply passionate about.

I remember not understanding what he meant when he told me that I would lose all of my muscle and that it would atrophy.

I would go on to lose approximately 50 pounds within six weeks even though I was eating casseroles, desserts, fast food, and anything else that I could eat.

I remember the outpouring of love and support from my family, friends, and colleagues.

I remember my wife questioning whether I should be responding to everyone that was reaching out and whether or not I should be typing daily updates.

Hundreds of people were reaching out, sometimes daily, and following every update I published.

I would go back weeks later and not remember several of my replies or updates even though all of them were coherent.

I remember Laura spending every single night sleeping on a pull-out sofa that they arranged in the room for us while I was in the hospital for those initial 12 nights.

And I remember my mother-in-law spending the afternoons with me while my wife tried going into work and dealing with everything else that still needed to be taken care of.

I remember the endless cards, flowers, and gifts that arrived.

In fact, during our second week in the hospital we were told by the nursing staff that they had never seen that many flowers sent to a patient before.

I still have every card and letter that was ever sent. They are in an overflowing shoe box that I regularly pull down to read through.

I also remember not truly understanding the impact of everything that was happening to us.

I didn’t realize that it would take me 6 weeks to be able to lift my hands an inch off of my knees.

It would take me several months of physical therapy to regain basic functionality and a full year before I would fully complete my therapy.

I didn’t realize that I wouldn’t be allowed to drive for 6 months due to having the seizures.

We celebrated every small victory that came with the recovery.

I didn’t realize what a brain tumor fully meant (brain cancer) and how bad it could be — though we have been lucky to not have experienced that worst-case scenario.

I didn’t realize that what we were going through would help to inspire others to lose weight, take their dream vacation, or any of the other stories that people have told me.

What started out as a simple Facebook update while waiting at the ER that first night turned into a motivator for such a large community.

Over the first 18 months, I never missed a single day.

545 posts straight. 175,000+ words.

One time it meant having to type an update at 2:00a after landing in NYC from St. Lucia and spending time with our niece who was only 2 weeks old at the time.

Another time we had gone to Cabo on vacation and I totally forgot to bring my power cord so I spent the entire week conserving my laptop battery until it finally died and I had to publish from my phone.

And there were so many other times when I had to stay up late after my wife passed out just so that I could get an update published.

There were times that I felt that the updates weren’t strong or inspiring or they were just repetitive. Those always seemed to be the days that I received responses from people saying how much they looked forward to reading those nightly updates as they helped them.

While I would never want to go through the pain and experience again, I am glad that the outcome of all of this has been inspirational to those around us.

Following those initial couple of months, I continued to push myself mentally and physically to beat my doctor’s expectations.

While I was recovering I obsessed over pushing my recovery whether it was doing the daily exercises that were being prescribed to me, walking with my mother-in-law and my dog, running a few flights of stairs, at physical therapy, consuming every video, podcast, blog post and book I could about mobility, or talking to everyone possible about their areas of fitness expertise.

When I couldn’t sleep in the middle of the night I would braindump ideas into Evernote that I would then research the next day.

When I first told our neuro-oncologist that I had worked out 4 out of 5 days during my first round of chemo, she was shocked.

When I told our orthopedic surgeon that I went swimming in January while on vacation in St. Lucia, only 5 months after surgery, he was shocked and asked me to forward him the video so that he could share it with a colleague at Harvard Medical School.

And then in July 2015, I proved to everyone, including myself, that anything is possible when I completed my first Spartan Race.?

I would go on to complete several more Spartan Races, including earning my Trifecta and participating in the Spartan World Championships in 2017. I would also participate in more GORUCK events than I could count.

As the journey has continued over the last 10 years, I have had 7 additional seizures, and several years ago I passed out while walking down our stairs causing me to fracture my patella in 4 places, fracture my metacarpal and big toe, put my teeth through my bottom lip, and split my head open requiring 25 stitches by a plastic surgeon.

I still have pain daily in my knee and all of the research that I have read suggests that it could be permanent.

Some of the initial aspects have tapered off into more of a routine with less frequent doctor’s appointments, blood work, MRIs, etc.

I will have to take anti-seizure pills for the rest of my life. I will have to have MRIs twice per year forever to ensure that there is no new growth.

I remember when my neurosurgeon told me that it would be like living with diabetes which I didn’t fully understand.?

Now I do.?

This is my life now.

Last November, after dealing with severely decreased range of motion from aggressive bone spur growth and arthritis, I had to have another surgery on my left shoulder.

It was supposed to be a buffer surgery, with a 80% success rate, before needing a shoulder replacement.

I, however, was in the bottom 20% so I’m currently scheduled for a partial shoulder replacement this coming September, 2 weeks after the 10 year anniversary of my brain surgery, that will take up to 5 months to recover from.

While these obstacles have been difficult to navigate, I have never asked “why me” because it does no good to wallow. The best way forward is to attack it head on and that’s what we’ll continue to do.