Tuesday, January 3, 2012

Update on life thus far.

It has been a long time since my last posting to the blog. I have been up and down many shaky roads in this time period. My diabetes has developed into more of a pain in my side than I think it is worth, however I am still not letting it defeat me. My blackouts have officially been diagnosed as a seizure disorder. I have learned all new forms of humility over this last summer, I thought I knew what humiliation was all about last year as I twitched and convulsed from the Neuropathy in the middle of Kmart. Just about a month ago I went to the grocery store with my mother; since I am no longer able to drive I try to get out whenever someone is willing to take me somewhere.  Well in the middle of the store I started to smell ammonia around me; I have come to know this as an aura preceding a seizure. I made it to a bench in the back of the store just about the time I sat down the seizure started. 

Now I have also learned I have two types of seizures, the first and most serious is “cranial seizures” where I just pass out cold to the world. The other all my muscles seize in a large contraction, not convulsive like a grand maul but constrictive where I tense up so bad I cannot move. Ok with the description aside let’s go back to my local grocery store.

I sat there on the bench frozen in a constrictive seizure. I could see everyone pass me and could not ask for help. I sat there almost catatonic watching everyone pass by while my cell phone was ringing off the hook, my mother was trying to find me in the store as she was up front looking for me. I was trapped, seeing the people, wanting to scream to get their attention and yet wanting to cry because of the humiliation. No one ever stopped to see if I was ok, not a customer or an employee, so I sat all to myself locked in my own head.

So when I say I am tired of my disease and humiliation, I hope you understand.  I am not giving up the fight I am however taking a temporary pause.

The loss of my own dignity, the humiliation, and society’s general lack of knowledge on the subject has caused me to change my Degree focus for my Bachelors. As of today I started my Bachelors of Science in Human services and Management, this will allow me to become a healthcare social worker. Someone who can listen to a patient and really understand where they are coming from; not nod their head and say it is all in your mind.  I have to stop here or I will go off on a tangent.


  1. John, I too have been recently diagnosed with a seizure disorder, I live the good fight with diabetes and also have fibromyalgia and Stinosis in the legs. Not only that I have Bi-polar disorder and with that comes severe depression and I think maybe some sort of ADD and also Borderline Personality Disorder. Thanks for sharing all of this information I wish we could have talked more when I came up to see Meredith that day I did not know that you had all of this wrong with you.

  2. John that's a very powerful and humbling account you posted. I commend you on wanting to use these physical problems as fuel to help others with a compassion and understanding other people who don't experience your challenges would not. You are obviously an amazing person with a spirit that will not give up!

  3. Anonymous, (and Yes I know who you are lol) Thank you for sharing that information, I am sorry that you have had this diagnosis but I am glad you were able to speak about it. You know how to reach me if you ever need to talk, do not hesitate because the times of pain or the headaches after the seizures can be hard.

  4. Mr. John, I would like to send you private message. How or where can I send it?

    1. Not sure if you are still around but I just saw this post and I apologize. hfire76@hotmail.com is how to find me.