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Living with Narcolepsy

A Good Day of Struggle

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Will you be near Washington DC on Friday April 12th? Ben’s Friends is having a Meet 'n Greet.

The Ben’s Friends team will be in the National Harbor area (Oxon Hills) on April 12th. Would you like to join us at The Flaming Grill at 5:30 pm? From there we’ll go to the Red Roof Inn across the road to socialize until about 9 pm (or somewhere else close depending on numbers.) Bring what you would like to drink, and we’ll supply great company!

Please let us know if you will be able to attend: modsupseenie at gmail.com. Hope to see you there!

A Good Day of Struggle

This article was written by TJ127 a member of AVMSurvivors.org who lives in the “Mitten State” in the US. A dad of five and a former banker, when he’s not hanging out on Ben’s Friends, he’s writing on his own site or spending time with family (including the three canine members, Solomon, Romeo and Juliet). Tom is also busy informally counseling and supporting adoptive families (he and his wife adopted two of their children 15 years ago). Oh, and one of the biggest joys in Tom’s life is being married to his high school sweetheart for 34 years.

A Good Day of Struggle

On one hand, it’s hard to believe it is over a year already. On the other hand, it’s hard to believe it’s only just over a year. In January 2018, I went into the hospital to get the AVM in my neck and brain treated.

The doctors successfully reduced my risk of a brain bleed, greatly increasing my opportunity to grow old with my wife. And for that I’m grateful. Since then we’ve been dealing with the side effects that rarely ever happen. And for that I’m often frustrated, often disappointed, definitely closer to God and a lot more aware of the struggles other people face. It’s hard to believe it’s been over a year and I still feel like I’m getting used to living with “it.”

It’s hard to believe how incredibly complex and intertwined our brains and nervous system are. I had expected to be back on my feet and moving in, at most, a week or so. When I came to in the recovery room, I could tell something wasn’t right. I was in a post anesthesia fog but as that cleared, a couple of things became obvious:

  • I could not hear anything out my left ear
  • I had a nasty headache (something I’ve never had coming out of anesthesia before)
  • My throat was really sore. I mean really, really sore.
    Over the next days and weeks, there became a growing realization that the problems weren’t temporary and weren’t going to go away – at least not soon and not on their own. For a while, I could say that pretty much every week I felt better than I did the week before. Often it was small things but it was still improvement. About 3 to 4 months into the recovery, that pretty much stopped.

I’ve got a great and very large team of medical people that I’m working with trying to get as much improvement as possible. But realistically, as we cross this one year mark, the odds of a major change lie less in modern medicine and more in God doing something outside of the scope of modern medicine.

So where do I stand right now?

  • With approximately 40% of my hearing in left ear and that hearing is distorted so if I hear something only in my left ear, it sounds like Alvin and the Chipmunks.

  • Noise in my head. The technical term is tinnitus – I prefer to describe it as 3 hours at a Rolling Stones concert 10 ft from the speaker.

  • My left vocal cord, part of my throat and left side of my tongue are paralyzed. This gives me swallowing, speech clarity, speech volume and speech quantity issues.

  • Virtually non-stop headaches. I say virtually because I don’t know if they go away when I sleep. They vary in intensity depending on a lot of factors – mainly what I’m doing, how noisy, busy, visually distracting things are.

  • With eyes that are attempting to adjust to the “mixed signals” that they are getting.
    Where does that leave me?

  • Grateful to be here. Our Pastor often says from the pulpit, “God woke you up and brought you here for a reason. Let’s figure out why.”

  • Grateful for my wife – you know that “for better or for worse, in sickness and in health” part of marriage vows? Yeah, that’s her. I wouldn’t be here without her.

  • Grateful for the kindness and the prayers of people known and people not known.
    January 30, 2018. I don’t think I’ll ever look at that date the same again. Much was lost on that day. But much was also gained. It’s often a struggle to remember that. But it’s a good struggle. Because I’m still here to be struggling. So, all in all, April 8 is a good day.

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