Why I’m Doing This

I’ll be the first to admit that I had no idea what the term “stroke,” meant until it seemed to hit me over the head with a sledgehammer when I was 28 years old. And In those first few days after the surgery, a wave of panic, confusion, frustration, fear took hold of me. It’s a feeling that I will never forget–a feeling that most will never understand, not unless you’ve been there.

In the agonizing days and weeks and months that followed the surgery, the truth was that I didn’t know if I was making true gains to get back to the life that I once lived or if all these medical professionals were simply getting me prepared for a new life in a completely different body. I simply wanted to hear an honest answer, yet I never seemed to get one. At several points though my recovery, I felt like I was alone in this journey. Now granted, I had an enormous network of family and friends that rallied for my campaign back to health but on my lowest of days–especially in the rehabilitation hospital I just wanted to talk to someone who experienced this. I needed someone who could give me guidance on what to expect. But more than anything, I wanted someone to get me motivated to recover and press on.

I don’t have all the answers, but I have lived it. Everyday of my life revolves around it. Recovery takes a long time and the results vary from survivor to survivor. I’m convinced that it’s all about what you put into it mentally and physically and with the people that you surround yourself with as well. This site is intended to inspire survivors, coach the caregivers, and maybe even teach a thing or two to the professionals.

After seven years, it’s time to speak out [www.outstroken.com]. If you, a loved one, a friend, or a colleague need a resource for recovery from Traumatic Brain Injury or stroke, I hope you find this site encouraging and inspiring.

THE SEIZURE
February 17, 2006. I loved the pace out there for starters–everything about it…the highways, the office buildings, and the flow of everyday life. I drive fast to begin with so the learning curve of becoming a “Jersey driver” came quite easy to me. My days as a sales manager were typically action packed. Combine that with an entrepreneur charged, fly-by-the-seat-of your-pants sales mentality, I was all over the state at all different times of the day.

This particular day was no different. I had appointments booked with sales reps which, from a timing standpoint, were extremely close together with long distances to cover from point A to B. So sure enough, I quickly recapped my meeting with my sales rep with keys in hand and shot up on to the Interstate towards the next exit ramp in route to New Brunswick.

In the world of outside sales, you learn all the short cuts, all the traffic routes and the times of day that certain roads become parking lots in metropolitan areas. All while listening to your favorite alternative music station that gives an updated traffic report every ten minutes or so (In this case that is WPRB, Princeton). In typical fashion, I had my side roads mapped out in my head to cut five minutes off my destination. I was just minutes from the intended office park and making fabulous time as I looked to my left and saw Rutgers stadium and my intended exit onto Route 18 to my right. I hit my turn signal and sped onto the highway heading southbound.

I positioned myself in the left lane and cruised the typical daily sights of the brackish waters of the Raritan River, Rutgers University, Johnson and Johnson Corporate headquarters to my right, and through the underpass. A train coming from New York City slowed above me passing over the culvert as I traveled underneath. That is the moment I lost consciousness…

Confusion…I am awake, my black Beemer is slammed up against a concrete median on the far side of an intersection approaching downtown New Brunswick. I looked down to find shards of glass everywhere–on the dashboard, in my lap, on the floor, and all over my passenger seat.

In a dazed state, I heard nervous voices all around the outside of my car. A police officer was trying to talk to me. I saw an SUV in front of me that was dented from the back bumper to the left rear door. A woman and another police officer were having a conversation. I looked in my rearview mirror and saw several emergency vehicles and traffic backed up for as far as my rearview mirror would permit me to see.

What happened? Where am I? Did I cause this accident? Was I the one they were discussing on the “up to the minute” traffic report just before the lunchtime rush that day?

A few points to make….

o I had taken a seizure for the first time in my life, which caused me to blackout behind the wheel.
o The shards of glass were not from the accident itself, but rather a police officer blasted open the passenger side window to get to me.
o I was taken by ambulance to Robert Wood Johnson hospital in New Brunswick for evaluation and treatment.
o The woman who was talking to the officer in front of me apparently saw me taking a seizure as I was going through the underpass. She accelerated, pulled over in front of my vehicle and let my car collide with hers to stop me as we were approaching a major intersection.
o Several attempts were made to reach out to this heroic woman. To this day, her identity remains unknown…

THE DIAGNOSIS
I could feel the swarm of panic, caution, and chaos as the medics unloaded me out of the ambulance. Entering the Emergency Room, hospital staff took over asking me a slew of questions–most of which my mind could not process. I was very nervous; that I do remember distinctly.

Within a matter of minutes, IV’s were inserted, Electrodes were applied, CAT scan’s were ordered, and family was notified. This would begin a plethora of tests, which in the days to follow would detect a cyst on the right side of the temporal lobe. The scans turned into M.R.I’s and the testing turned into a diagnosis. It became clear that whatever the “it” was, it did not belong in my head. Two days later, upon confirmation of test results and review by a panel of Neurologists, the decision was made to operate…

THE FIRST WEEK
What I remember from the first 48 hours after surgery is quite foggy. I know I felt lousy and due to the assortment of pain medication, I slept a lot. Furthermore, I was awakened constantly by nurses and professionals doing all sort of routine procedures on me–the typical stuff: Taking blood pressure, temperature, changing IV bags and so on and so fourth. All and all, I was comfortable for the most part but the minute the medicine wore off my whole body hurt something awful.

The first days in the TBI wing went quickly because of the endless amounts of testing, MRI’s, and just about every specialist under the sun stopping in to perform all sorts of testing. I can tell you that I slept any chance I got. The simple tasks were exhausting in the beginning. Things such as transferring me into a wheelchair or back into bed were very draining physically. Even watching television and reading for small amounts of time would just wear me down in a matter of minutes.

And through the first few days of recovery, the nurses, physical therapists and on call doctors (it was the weekend skeleton shifts) knew that I wasn’t bouncing back as rapidly as expected from this sort of procedure. My neurosurgeon just happened to be “off the grid” late in the week as well so it became difficult for us to obtain accurate updates as to what might have gone wrong during the surgery. My left arm and leg were not responding and felt uncomfortably tight. My sight was blurry with an odd sort of unfocus. The right side was weak but at least had feeling. It wasn’t until the fifth day of recovery that the doctors’ confirmed that indeed a blood vessel was hit during the procedure and the result was a stroke causing massive paralysis on the left side of my body.

Now, my immediate reaction to this news was, “Stroke, ok, what the hell does that mean?” But as I began to look around the room after the results were explained, I started to notice the expressions of unease and disappointment from professionals and family in that room. I quickly got that pit in the stomach feeling that this may not be good.

After the blast of just about the worst news possible from the neurosurgeon was unveiled, the decision was made that the best place for me to go was an inpatient Rehabilitation Hospital in the area. And that was fine by me. In that moment, I would have gone to Mars if it meant my left side would start functioning as normal.
The arrangements were made, and I was transported shortly after my status was downgraded from critical to stable. I still felt like crap, the damn doctor blew out the left side of my body, but I guess the positive is I was still on this side of the soil!

That first week post surgery was terribly confusing for all of us. None of us understood what was going on, nor did we have the medical expertise to even semi-diagnose why so many parts weren’t functioning correctly. I mostly slept due to fatigue thinking that I’d come to and everything would be back to normal. All I wanted to do was play my guitar, go back to my office, or go take a walk. I needed to get out of this place. I was already sick of being sick.

2 thoughts on “Why I’m Doing This

  1. Jonathan – I too have had a stroke. A massive one at age 53, a little more than 2 years ago. Mine was caused by using the Nuva-Ring, a birth control device I was given to control excessive bleeding. I found your blog through the Penn Stater. Thanks for sharing. I have a limp, and my right arm hangs awkwardly at my side. I just completed my first 5k, and I was thrilled! It has been a long fight back, but I still see progress. I will pray that you continue to make steps forward, and I am grateful for your words – they encourage me too!

  2. I’m sorry this happened to you. I saw your article in the Penn stater magazine.
    We are I’m a similar situation. On 7/14/07 I suffered a massive brainstem stroke caused by an AVM. It paralyzed my dominant left side. I’d like to communicate with you by email if possible. We sound similar in trying hard to get well. I have some advice about a very very amazing therapist who has devoted his life and his vast intellect to getting stroke survivors much better. I think you should go to him. he can get your hand back to fine motor function. That’s what I have him work on with me. He is expensive but worth it. It’ll take years, but I have to be a pioneer in proving what can be done with the right kind of effort. Maybe you could join me in that mission?
    I hope to hear back from you so we can trade tips. Btw, I am a PSU graduate 1996 biochemical engineer with a minor in environmental engineering.
    Where do you live now?

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s