Just when you think it’s over and done…..think again.
All in all, my recovery from the tragic bike accident in Ironman Arizona (IMAZ) 2014 has been what I was told to expect…..nothing out of the ordinary. I knew my clavicle surgery scar wasn’t going away anytime soon, and that’s cool because honestly I’m proud of it….gives me character, right? I still have a little bit of hearing issues in my right ear, but some of that might be psychosomatic as my testing after the accident showed a bit of blockage (due to my head bleed) but I was told that would diminish in time. But all in all, I felt “ok” and that all of IMAZ 2014 was behind me…..tucked away in the plethora of medical and insurance notes I kept neatly organized in a 3 ring binder in my home office. All the bills were paid, all the claims submitted. It was done and I had even gone back and finished the race that almost killed me….I was a IMAZ 2016 finisher…..it was all a part of my past, something I would cherish as part of my character but it wasn’t affecting me on a daily basis anymore.
And then that changed.
Looking back on my pile of medical reports, there’s this small note in one of my neurology reports from being in the ICU in 2014 after the accident….it reads, “the patient is at risk for seizures given the temporal lobe being a seizure-genic lobe”. Much like the thousands of papers and reports I received from this time in my life, I filed it away, to be worried about at a later time, if the need arose. 2.5 years post the IMAZ accident and nothing even remotely seizure-like had happened. And then June 2017 changed that.
It was my turn for being a delegate at the Reformed Church in America General Synod, our annual conference. Being an RCA ordained minister, I knew I’d be up for representing the Classis I am ordained in eventually, and thankfully when it was my turn it was in Holland, Michigan...my old college and graduate school stomping grounds. While I was up there I met up with a therapist friend of mine and had a great conversation one afternoon. During this visit, my first seizure happened, which came out of the blue. I remember being tired from a little less sleep than usual before this visit but not much else was out of the ordinary. When I “came to” from the seizure, which was only a minute or so, I was told what had just happened, and I literally didn’t believe him initially. I don’t have seizures. Could he be wrong? Maybe I just am overly tired and need to eat? Just sounded too weird to be true. I stayed with him for a bit before feeling 100% confident in my abilities to care for myself and continued on with my stay in Holland through the weekend for the conference. I literally brushed off what had just happened as a “freak” incident. I’d do better about my sleep, as much as I could.
Fast forward to Saturday August 12, 2017. The night prior, Chad (my boyfriend) and I had been out and home late, which meant I slept about 4-5 hours before getting myself up to go workout with my Crossfit pal at 8:30am. Working out on a lack of sleep wasn't anything new for me....I've been there. I had to drive up from Grove City, Ohio to the Polaris location and made it there on time, had a great workout. I ate and showered and went back to Chad’s house to meet him where our plans were to visit his daughter (Kendall) at the Ross County Fair for the day. We arrived on time and all was on plan as scheduled. Nothing weird to expect. They were grilling out and we were enjoying the visit. With a plate full of food in my lap, that same weird feeling came over me….that feeling that I was getting nauseous and tired. I continued to eat my bratwurst, thinking I just needed fuel. I turned my head towards Chad on my right and started whispering to him. In my mind, I was clearly saying “I’m not feeling right. Something is off.” Later I would find out it all came out to him as whispering gibberish. Very confused as he didn’t have a clue what was happening, Chad got up to toss away a plate and turned around and saw me starting to seize. Without having any knowledge of what to do or how to help, he went into action and got me down on the ground and held my head near his shoulder as my eyes when back into my head and I started to stiffen up and drool, making groaning noises and losing my bowels. Sigh. Humiliating. Chad whispered in my ear in a calming voice. People around us went for help. After only a few minutes (which felt like more to Chad), I came to my senses, woke up and wondered what had happened. Chad calmed me down and told me I had just had a seizure.
Me: What? No….I don’t have seizures.
Chad: Do you know where you’re at? Do you know my name?
Of COURSE I knew WHO he was, but in that moment, the word itself was literally escaping me.
How is that possible? Cue the memory of IMAZ 2014 when this happened before (read on, it’s below).
I had originally told the paramedics to leave but then later consented to being checked out. At the minimum I needed to change my clothes and get an IV for fluids. So we drove over the where the paramedics for the fair were stationed and they gave me an IV, then later we decided it was appropriate for me to head to Adena hospital, the closest to our location in Chillicothe. Chad rode in the ambulance with me and his daughter followed us in Chad’s car so we could leave after being checked out. Did I mention Kendall literally helped me change into some of her own clothes because I was a mess.....physically and emotionally. Ugh. It's real love when your boyfriend and his daughter clean you up.
I know this routine way to well. There was so much going on at the time that it really was hard to process, but I remember having flashbacks to IMAZ 2014 and doing everything I could to keep myself together….this was NOT the world I wanted to go back to again, much less bring Chad into this chaos.
After a bit of time in the emergency room, we had some checking done and my vitals were good and stable. I did all I could to catch up the medical staff on my history and current condition. Chad spoke on the phone to my good friend and neurologist back in Columbus who gave me the green light to be discharged and spoke to the medical staff at Adena to assure them I would follow up with my neurologist at home and was ok to leave with the condition that I wouldn’t drive until my follow up appointment. Chad also spoke to my therapist friend in Michigan and they compared stories….I had definitely had a grand mal seizure both times. I was so happy to be discharged and heading home to rest. I would be driven everywhere until August 22, my scheduled follow up appointment.
So thankfully my neurologist spent over an hour with Chad and I on August 22 and answered all our questions and reassured all our concerns. I feel very fortunate to have her and her entire practice (Go OhioHealth Neurological Physicians!) in my corner with this new challenge. After that appointment, all the reality of the past 2 weeks really settle in….and I’ve processed a bit more of what I’ve been feeling, finally able to “get it out there.”
Above all, there’s been some serious PTSD with this entire ordeal. I’ve gone from feeling strong and capable to feeling handicapped and challenged again, something so similar to IMAZ 2014. I remember distinctly being unable to answer basic questions like “what is this?” or “who am I?” and feeling paralyzed with shame and doubt with knowing the answers but literally not having the mental capability to say the words. Medical reports cite, “the patient is resting comfortably in the ICU. She is slightly confused. She does name the year. She is unable to name the president. She has great difficulty identifying objects. She is unable to name a pen. She is obviously struggling with attempting to articulate.” Of course I was…..it’s a painful feeling and had parts of this memory again flood my mind with the seizure.
I remember the anger and frustration I felt from having my independence taken away and being told I couldn’t do basic things like drive or work out on little sleep. I get nervous knowing that my ambulance and emergency room hospital bills are coming in the mail soon….as I spent 9 months in 2015 having small panic attacks every time I went to my mailbox and saw more medical bills arriving.
I now have another diagnosis that won’t be going away, something that makes me “different” and something that makes me have to have the diligence of being a “responsible” adult and knowing my limits and challenges. I won’t be able to get up and workout if I have less than 6.5 hours of sleep each night. I’ll have to share with my co-workers and gym friends what to do if I have a seizure in front of them. I’ll have to manage my triggers (sleep, hydration and stress) more acutely so they don’t contribute to lowering my threshold of having a seizure. I’ll have to know when to pull off on the road if or when I feel “off.”
In addition to this, I’ve had to humble myself again and receive help. I’ve have to again put my shame aside and accept everything that has been given to me willingly, without argument or complaint. I’ve had to accept love and care from others, when I never wanted to put them through this challenge…..and it’s been hard. For a gal who prided herself on being able to “handle her shit” on her own, it’s been much like IMAZ 2014, when I never EVER believed I could be loved/supported/cared for and about as much as I was…..and this new reality of being epileptic and reminded me of what I already knew….I am deeply loved/supported/cared for and about…..and this time even moreso. Chad and I talk about how love is indeed in sickness or health….it’s about being present with each other when the chips are down and never spending much time worrying about the challenges that lay ahead….because THAT person is YOUR person….and you can’t imagine life without them. That’s my truth right now and I’m beyond grateful for all that lay ahead with my person by my side.
|Painting in my office|
So I’m an epileptic. My head trauma from IMAZ 2014 is something that wasn’t completely dormant. I might have gone back and tackled that IMAZ redemptive experience, but my scars remain and they will be with me for the rest of my life. All in all, I’ll take it….because every time I rise again. And that that’ll never stop. Burn me to the ground, smother me in ashes and I will rise again. I am a freaking Phoenix.
Onward. There’s so much life to live.
Be willing to take a step back . Be Brave.