I have to be sure she is safe.
This is most likely was something resembling your morning…
- Wake Up
- Shower/Brush Teeth
- Wake Up Children
- Get Kids Ready for School
- Drop Off Kids/Send them Biking to School
- Go to Work
But here’s what Abbe and I had to do this morning…
- Wake Up
- Shower/Brush Teeth
- Wake Up Children
- Get Kids Ready for School
- Drop Off Kids (it’s raining)
- Abbe has a tremor and lets me know immediately.
- I make Abbe lay down and rest. I am checking on her every couple of minutes, being a pain in the ass, but I have to be sure she is safe. She contacts her office and her ride into work this morning that she isn’t doing well.
- Abbe has more shakes. I am checking on her every couple of minutes, being a pain in the ass, but I have to be sure she is safe. I contact my client that I had a meeting with this morning and reschedule.
- Shakes subside, but Abbe lays in bed. She is upset. She is scared that she will lose her job for not being able to come into work on time this morning. I am checking on her every couple of minutes, being a pain in the ass, but I have to be sure she is safe.
- We wait. I am checking on her every couple of minutes, being a pain in the ass, but I have to be sure she is safe.
Can you imagine if this was your reality? The feeling of helplessness for both of us is immeasurable. There are absolutely worse seizure disorder conditions out there. There are worse conditions outside of epilepsy. But this what happens from time to time when you have a seizure disorder. And Abbe is a treated epilepsy patient, there are many epileptics that can not afford or have access to treatment. Can you imagine that? How would you work? How would you take care of your family? Would you be brave enough to be honest with your neurologist about how many seizures you have had, even if you knew you would be losing your license? How do you deal with peers that worry about including you on activities because, “oh no, what if they have a seizure?” What if it was your child with the seizure disorder?
And that my friends, on some days, is our reality. Abbe and I have become very good at recognizing warning signs, making sure she gets enough rest (and not too much), being honest with me about shakes (which means not hiding them ever), and getting Abbe to a safe place when the tremors come. I operate under one principle when those stupid, asshole, shitty, piece of crap shakes arrive – I have to be sure she is safe. Work can wait. Everything can wait. I have to be sure she is safe.
I want everyone that reads this to consider what I’ve written. There is some great work going on with the Epilepsy Therapy Project, finding new treatments for epilepsy patients like Abbe and providing information to family members that have a lot of the same questions that I listed above.
Want to help? On April 7th, I am running the the 2013 Atlantic City April Fools Half Marathon in honor of Abbe and all of those affected by seizure disorders on behalf of the Epilepsy Therapy Project. A few short weeks after that half marathon, I will be marrying this amazing person. I want nothing more right now than to announce to our friends and family in attendance that I not only met my fundraising goal of $500, but CRUSHED it. Please consider a donation if you are able to do so.
If you ever drive up and down the roads of Medford Lakes and Medford, New Jersey, you might spot a runner wearing an ETP shirt with VAN ironed onto the back. That’s me. You might notice on some days, I look upset. I am. I am because I am powerless to help Abbe when those shakes come. But I can run and raise money. And I can talk to you. I have to be sure she is safe.
But if you see this old guy at the end of his run, you will also see me smiling. Maybe even Usually teary. Because a very important part of every training run is me imagining the finish line at the half marathon. I imagine screaming (literally) across that line. Squeezing every bit of blood, sweat, and tears to destroy an under 2 hour time. I will leave myself enough energy to scream my head off to celebrate this journey. And then I imagine collapsing into Abbe’s arms in a tearful hug. I love this woman so much. I have to be sure she is safe. And that is why I run.
If you can or can not donate, please consider sharing this post. You may or may not know someone with a seizure disorder, but by sharing this post, perhaps it will reach someone that does. Thank you, Van.
Movie Reviews…
The Divide
– if you’re looking for an apocalyptic movie set in an apartment fallout shelter with plenty of rape and bad acting, look no further… you’ve arrived. What a piece of crap.
March 12th, 2013 at 2:05 pm
You ROCK, and keep being that pain in the ass!
March 12th, 2013 at 8:09 pm
i second what holly said!