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@04:35 GMT

Position: 38° 25.670 N x 35° 21.155 W

Speed: 6.9 kts

Course: 90° True

This question surprised me, not because of question itself, but instead because of the emotion it brought out in me. I have had epilepsy for almost 50 years and have been seizure free for over 40 of those years but periodically the emotion of my epilepsy gets me. Sometimes it totally comes out of left field. This happened during our Facebook Live last Saturday with this question. As I started to answer the tears began. 

I haven’t been able to go back and look at the recording. Simply thinking of it makes me cringe. But with encouragement from my wife Marianne and the crew on board Ingwe, I am a going to face the question again, this time in writing. By facing it, I might help someone else. 

So, here goes!

I think every day about the possibility of having a seizure.  I never speak about it but I do wonder. Mostly the moment is fleeting. Other times it lingers with me for a while. We all have the occasional twitch. Of course a twitch for someone who has tonic clonic seizures definitely gets your attention. 

Where the brick fractured my skull the damage to the skin led it to becoming totally insensitive to touch. Slowly (very slowly) it has become reinervated by nerve fibers.  Occasionally the skin twitches. I assume muscle fibers beneath the skin have some spontaneous contractions with their reinervation. The frequency used to be very high, but now only occasional. But when it happens, memories come back to me like they were yesterday. 

For instance, a couple of very traumatic seizures. As I write this the list is going through my mind and I am seeing where I was. I was in the hospital a week after my injury and then transferred from Oxford to Swindon. During that transfer my meds were not administered and resulted in a seizure. Recovering on the sidewalk in Swindon after a seizure while on the way to a job interview. The seizure the first day at University, and the list goes on and the memories are so vivid – not of the seizure per se, but of the preceding aura, and the post-ictal recovery.  The regaining of consciousness, telling people around me to not be alarmed, just take me home (understandably they don’t but instead call for the ambulance).

So I do think about seizures daily to some degree, and I am sure everyone with epilepsy does. But I live by a simple philosophy:

  1. I will never let epilepsy beat me. 
  2. When I get down I remember “I can and I will”. (Yesterday morning on Ingwe it was time to make a coffee but I was a little mentally paralyzed thinking about this writing, eventually “I can and I will” got me off my rear end and into action, and the coffee tasted great).

During my almost 50 years of living with epilepsy I have used safety measures for my activities. With time and the longer I have been seizure free I have relaxed them to some degree. But they are always there.

For this sailing voyage, I have added several safety measures to make the journey safer and to prevent my epilepsy from beating me.

  • I have a seizure action plan on board Ingwe.
  • I make sure to take my daily medication on time.
  • I have briefed the crew on what to do if I were to have a seizure.
  • I have an epilepsy specialist on call in support back in Boston, just in case.
  • I also follow offshore sailing safety guidelines for myself and the crew. 

With all of these safety guardrails I can live my life fully and take my One More Step of sailing the oceans of the world. 

I don’t let my epilepsy beat me. Don’t let yours beat you either!

Medical forms from all the crew, including Phil’s seizure action plan. Also – link to the Epilepsy Foundation PDF of this plan

Epilepsy Foundation Seizure Action Plan PDF

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