Sunday, June 1, 2014

Meeting another Cluster Head in person for the 1st time

Yesterday My family and I met another Cluster Head and her spouse.
This was the very first time I have met another survivor in person. And her spouse.
She is a survivor in more ways than one.....

Sorry I won't disclose her and her spouses name for privacy but the irony behind us is amazing.
Lets call her Jane Doe... Jane grew up in the same neighbourhood as I. Jane went to school with my older brother. Jane moved to another city and met John Doe who also grew up int he same neighbourhood as a kid. They are quite happy together. Jane is on Facebook and finds me. See's my videos I have on YouTube, reads this blog and contacts me...we become online friends.

Jane asked a couple times if ever back home if she could have coffee. Absolutely. Of course.
I invited Jane and John over for coffee.

Let me tell you this...if you have ever not met someone, yet have so much in common and share so much its an eire feeling. It certainly was to me. I asked my wife what if Jane has an attack here, I guess now I will see through your eyes for a change. I was quite nervous to be honest. Speaking to Cluster Heads online and meeting is alot different. It was extremely important yet therapeutic for my wife and son to meet them because "they know, they get it, they understand".

They arrived and immediate hugs and tears. It was quite sad yet happy. Sad because I know exactly what she goes through. I shook "Johns" hand and said your an UNSUNG HERO. He quite didn't get what I meant. I explained what my wife and son and he was and he understood.

We have a wonderful conversation discussing when, how we were diagnosed. What happened before we were diagnosed and how we have lived since diagnosis. I think to myself listening to her story how lucky I was to only have a tooth pulled where she went through hell prior to diagnosis and for years didn't know what was happening to her and just about cost her her life. Sad really.

Whats  ironic is not only we grew up a street apart,and she went to school with my brother. But what was weird with the zillion Dr appointments I have had in 9 years, the emerg visits for me and others, that how many medical professionals have not a remote clue what CH is yet I sat there with someone who I had never met in my life and for once...there was no "Proving" our disease. There was no exaggeration. There was no explaining the disease for once. We got each other. Tears and laughter were equal. I am a bit of a comedian.

It was sooooo important for my wife and son to hear her story and speak to her soul mate. They experience the exact same helpless feeling each attack, Doctors visits, neurologists appointments, frustrations with disbelief, abandonment from friends, sleepless nights and they don't even suffer from the disease. They have no choice but stay and love us anyway.

It was so refreshing to meet another Cluster Head. We could have sat in my patio for hours not spoken a single word and had a conversation just by looking  at one another. Seriously folks, we are 1 of the 0.01% of the worlds population. I am rare myself because I have chronic migraines, chronic  tension headaches on top of the chronic cluster headaches. I to my knowledge I am 1 of 15 in the world with DBS, I was #17 when it happened. I am not sure how many more have had DBS but that's another topic....

We laughed and cried, we shared and understood. Because of my financial situation chances of me going to any conference is none. So for now I wont be able to hang out with fellow Cluster Heads unless its like this...

I know I write a fair amount. I also do my best even the worst of days to write positive inspiring words to just help one person only. FYI...I am not full of shit all the time...just some...LOL...j/k
But John said something to me that struck a cord...He said "I save lives". That was a really hard pill to swallow. Jane said "Every single day Tom writes a beautiful Good Morning and I look forward to it every day". I was shocked people read my stuff actually...and as big of head as they made mine I am far to humble to accept it gracefully but said I do it to hopefully reach 1 single person. If it changes there day. Super. I never realized the impact it had on her, him or anyone. I didn't think people actually took it to heart as much as they did. It was flattering, uplifting for the compliments.
It will be hard for my head to walk through that door today...j/k...all kidding aside. I appreciate it but if I made you or anyone else smile and changed the outlook of your day for even 5 minutes. I have done my job.

My blog,my FB account, Twitter account is my job. Its for all of you.Even the haters in the dark place. Love you all.

If your nervous about meeting a CH'r....don't be. Its therapeutic....its family.

Blessings and have a pain free day.

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