Aaron Bale talk on Narcolepsy


Aaron Bale talk on Narcolepsy
by Sue Basko

This week, Aaron Bale gave a very successful talk on Narcolepsy and its effects on mental health to a group of mental health professionals in Louisville, Kentucky.  The talk was enlightening, letting the listeners have a glimpse into the challenges facing narcoleptics.  

 Just giving the talk was a challenge.  Aaron is my legal client, and he was raided by the FBI a few weeks ago, which you can read about HERE. The FBI took Aaron's phone/ cognitive orthotic, which he uses to remind him of  things because he has memory loss.  The loss of his cognitive orthotic sent Aaron's health immediately in a downward spiral, since he needs it for taking his medicine and to monitor his breathing.  The past few weeks have been hellish, with Aaron not able to attend his neuro rehab, not taking his medicines properly, and his whole life in disarray.  Aaron refers to living without his medical orthotic as "going Commando."   

Before the FBI raid, Aaron told me he had been invited to give a talk to the medical group.  After the raid, with his phone gone, he could not remember the date of the talk.  He also could not formally prepare the talk because he was too busy trying to stay alive.  However, he was living the topic; he knows a whole lot about how narcolepsy affects one's life.

The other day, Aaron got a reminder call from the woman running the event, telling him he was scheduled to give the talk later that day.  Aaron emailed me: Oh no, the talk is today. Aaron was not prepared for the talk, and yet he was speaking very eloquently to me about the difficulties he was facing with Narcolepsy.  I suggested: How about I'll be on speakerphone and I 'll ask you questions, and you answer to the audience?  Aaron immediately loved this idea.  He would not  be doing this talk alone, I'd be there with him on the phone, organizing the content and guiding him through it with questions.  

With our plan set, it was time for Aaron to take a shower, get dressed, and call me when he arrived at  the place for the talk.  I hoped he would be able to do this and not fall asleep.  That's how it is with narcolepsy: you can work out the best plan, but sleep may substitute itself for whatever you have planned.   Aaron called me from the room, we did a sound check, and the audience filed in.

I asked basic questions, so Aaron could wing the answers in whatever direction he wanted.  He was so articulate and informative.  He spoke of his high school years, when he had terrible troubles, but went undiagnosed.  He spoke of the near impossibility of holding a regular job with narcolepsy, including difficulties with showing up on time and staying awake, memory loss, and foggy thinking.  He told of the difficulties of personal relationships.  Aaron got some laughs when when he told about online narcolepsy support groups and how hard they are to run, because some of  the participants will fall asleep.  He explained the terrifying side effects of the medicines prescribed for narcolepsy, which include hallucinations, memory loss, and cataplexy, a temporary paralysis.   The talk he gave was so eloquent, so full of rich truth that can only be spoken by one who has been through it.    

Aaron's talk was a great success.  I can see him giving such talks to other groups.  I can also see him talking about the importance of cognitive orthotics. Since Aaron's cognitive orthotic was taken away suddenly and without warning, he also has experienced how devastating and life-threatening that is.  Hopefully, some day he will be able to speak about recuperating from that upheaval, but for now, he is so very far from recuperated.  Right now, he is struggling to keep alive.

All in all, dealing with Aaron has been a wonderful blessing.  It has been a great experience for me having Aaron as my client.   I have come to understand narcolepsy just a bit.  I have had the chance to develop more patience, as well as techniques that work in relating to him.  I have learned the crucial and important role of cognitive orthotics for people with memory loss.  I've had the opportunity of being able to help Aaron in the aftermath of the horrifying FBI raid and loss of his cognitive orthotic, helping him cope and trying to help him stay alive and get back on track.  It's been about 3 weeks since the raid and Aaron's life is still in jeopardy.  I hope that within the next month or two, things get more stabilized for him.  His place was ransacked in the raid and is still in that condition.  As he gets better over the next month or so, maybe he'll be able to put it back together and have a better place to live.

Then, when Aaron's situation is no longer one of life-and-death, we need to work on the legality of medical devices being snatched willy-nilly by U.S. police agencies, leaving patients in the lurch and facing devastating health loss or death.


2 comments:

  1. Wonderful! I am so happy that it went so well, I have really been crossing my fingers for that talk to have really reached a chord with the listeners and it appears that it did! I just spoke to Aaron and we have outlined some potentially phenomenal things for the future of PWN ( Persons with Narcolepsy)! It's great for Aaron to know that he has staunch support and that he is not in this alone and isolated! I hope he is able to give many talk in the future to wider and wider audiences!

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