Its been 1 week now since I first walked into the meet and greet and was in a room where literally not a single person had to speak. Everyone of us could have kept our mouths closed and not said a single word verbally yet had a conversation.
I had the pleasure of meeting one Cluster Head recently and it was very emotional. As I walked into the meet and greet room....I just....well.....felt like I was at heaven meeting St.Peter and was going to be told " its ok, your home now, no need to be scared. We understand. Its ok."
Its really mind boggling. To be in a room full of people who like myself have the worlds most painful disease on the planet known to medical science. Not a single person had to solidify the disease. Not one of us had to prove how bad it really is. Not one person had to complain how much it has taken from their lives, what it has robbed us of, how many lives its taken and why we were all standing there that day.
I can not begin to tell you how every single one of us standing there in our Cluster Career has had to explain to people what we have with a blank stare in the persons face as we explain the disease. The disbelief people give us. There "Yeah Right" syndrome or " It can not be that bad" or "You look fine". There is so many more analogies I could go on and on about but really. What's the point. We were all there (and more arriving) to support, love, educate and give hope to others.
For those who haven't met me, or kinda knew me, do not really know parts of my personal life and truth be known...if it wasn't someones generosity. Me and my family would have not been there. I can not express enough love and gratitude for these people and their families. And as promised I will pay it forward.
These people are kindred souls who go way beyond helping someone. HEROS. more later....
So as my wife and son and I walked into the room we were greeted with open arms from Cluster Busters, the family, and everyone. No one is a stranger. We have either spoke on line or heard about each other or just shared this dreaded disease. I met and spoke with walks of all life. Different professions or on disability like me and some fighting to get the disability they so deserve and it breaks my heart...some far off worse than us with an even greater multitude of health problems. Those survivors should be praised at every given chance for heir relentless fight to live from this disease and others they battle with daily. I know I am "Iron Man" as my tattoo says...but I met "Superman", "Batman", "Wonderwoman" and many more. You know whom you are and I love ya.
Just a quick funny story....first night we were there...my wife son and i were sitting at a table. We recognised Dan and many others at another table. they did not see us. Having a long trip everyone needed food so rather than bother them running over. I had the waiter send over on a small plate " A single Mushroom and a Canadian Dollar coin (called a Loonie). Immediately as the mushroom was given to him Dan and the table scanned the restaurant for me. You couldn't have stopped the tears. The hugs, the immediate bonding two people whom had never met who became so permanently involved in each others lives now for life. Others came over hugged, laughed and shook hands. Funny story yet very emotional. Ill never forget that.
Day 1 of the conference. Running late but greeted and wow a full house.Sat in the front row. I scanned the room and recognised so many faces from online. Its so eary to see so many real faces instead of pictures. To me its like meeting a famous person. You see them on TV all the time and then you meet them. Its kind of surreal. It was surreal.
The conference got underway with Bob Wold, President of Cluster Busters. In his fine pressed dapper suit, he stood among us and told us his story, his life and horror and his success with 'Busting", how it derived and where it is today. I have heard it online before but it was an honour and privilege to hear it in person. From a teacher and mentor to me. Go on YouTube and find him. Listen to what he has done for us. Its incredible. This mans relentless fight to help us is immeasurable by words. I am honored to call him a friend.
I will post below the conference as I wrote it and listened to it. Its my take. And some things I could not type fast enough. I made it for myself and my doctor.
Back to the conference. We were so blessed to have had so many speakers, talented people take their time not only to travel to Nashville but yet prepare such a wonderful informative presentation.
Lee Markins presenting each speaker with a perma grin smile that never stopped. Even when people would continually talk as we tried to listen to the speakers. Lee is wow what can I say....a great person. His daughter spoke so highly of her dad in describing the disease and what it does to her dad and who he never complains and is just a kind person. Happy go lucky. We can all learn a lot from Lee, especially me.
My friend John Beebee spoke about the disease, and oxygen and even gave a proper instruction on how to use it. When I had tried oxygen years ago I had tried it wrong. I will give it an educated try next time I am hit with an attack. John is a true pioneer. His heart is as big as the room full of cluster heads and his relentless outpouring of love for all of us is evident. A vet, an educated very smart man who knows his stuff. Look him up. He will not only help you. He will educate you. My son loved hanging with him and Dan. Just thought the world of ya. John and I both have the same mentality. "Look at US". not me....US.
Dr. Brian McGeeney, a neurologist, a Dr to one of us Cluster Heads who took time out of his practice to continually advocate for us not just at the conference but in his practice and with colleagues on a regular basis. The world needs more Dr. McGeeney's. He continually educates physicians on the disease. How many doctors can you say that you have come across in your Cluster head career that will go to battle with you? How many doctors like him will take time out of his day to research, promote, educate and inform others who are so greatly mislead and misunderstood. Personally myself....I have a doctor who looks at me with amazement for what I do. My Dr is a rare Dr who listens to me. I am very very lucky. But there are many doctors who dismiss us as drug seekers (we are not and far from it). That we are misdiagnosed as sinus, migraines, or space cadets. I owe so much gratitude to Dr. McGeeney. Wow...just wow. Your patients are so lucky you take them seriously and "listen". God Bless you.
We had speaker then join us from Ausanil. A company not only founded but survived from someone with migraines. My son and I both have migraines so we thank you. The company did mention to us that the medicine being over the counter and online. Can be used to treat Cluster Headaches. We were given a sample. I haven't tried it yet but will give it an honest go when the time arises. We thank you for coming and listening and supporting us. We hope you are far more educated on the disease. It is a homeopathic medicine.
Larry Shor a professor than came to share his story. Geez, if I knew University was this cool I would have signed up as his student ! What a great HILARIOUS guy. His students must die in laughter on a consistent basis. And for his students...my message to you...." This man suffers a disease you will never understand. Please give him the respect and courtesy he so deserves by listening to him speak.And never take advantage of the fact who he is...a survivor".
My friend Dan Ervin. My Texan Connection. My mentor, my friend. My family. Dan I wouldn't be here if it wasn't for you. Mentally and physically speaking. You been called a Hero and its true. A hero steps out of his comfort zone to help someone and not worry about what could happen to them. Dan is just that. A kind kindred spirit. As I type this with a tear rolling down my face....he has done far more for me and others than people I once knew for 25+ years. He does this because he knows himself the loss of friends, relationships and career what the disease has done. Dan stepped waaaaay beyond a safe comfort zone. Some call him Hollywood. Some call him Dan. I call him family. Dan made a video on National Geographic on the TV show Drugs about how psilocybin had saved his life. His wife Le Ann is just as much as an advocate, supporter and cheering section as anyone can have. As much as my marriage is secure and happy. I pray mine continues to be as respectful and loving as Dan and Le Ann's. They are a couple I admire and respect beyond words. I am forever a student of Dan and honoured to call him my " framily". If you haven't see his video. You Tube it. It has saved lives. Literally. I am LIVING PROOF after 4 failed brain surgeries that it helps.
We had Johnathan Stayler, the advocacy panel speak and update the efforts of ClusterBusters. Jim Fadiman speak of journeys that are safe and therapeutic. (wink wink). Funny, enlightening and amazing.
We had a success story from Dr. Anne Calhoun representing a company that implants a device in a patients face stimulating the trigeminal nerve area with a hand held device. A patient Timothy White from Hamburg Germany (my families heritage...yes I am a Kraut too) and told us his success story with this surgical device. A med student only seeking to get relief as he had like us....enough.
For me....I am done with surgeries. 4 brain surgeries were enough. Some have had more, for me. For now...I am done.
Emmanuelle Schindler gave us a update on ClusterBusters Medication use survey, Stephen Hurst.,president and CEO of Savant HWP, INC who is taking the BOL-148 to rekindle the medicine that so desperately needs to be available yesterday. As a sick person, all I know is that a person with an incurable disease,all we ask is to see a doctor, ask for a prescription and have it given to us. I pray that our stories to Savant gave them the drive to help us. I pray its within 10 years or less available to us and future generations. As Lee said, we may not affect anyone today but we can affect the lives of millions later. This drug BOL-148 needs to be on the shelf of every pharmacy world wide NOW. This medicine will take any fear people like me had before busting away. Because of no side affects from tripping. Please dear god, help Savant HWP make it to market now. The rest of the survivors world wide should be praying to. While BOL-148 is not a cure....its a band aid....one giant big freaking band aid....just like busting but not...
Justyna Blake from Electrocore spoke regarding a non evasive non surgical device to abort cluster headaches. From what I gathered and I am not a book smart fellow that it appears another alternative to dealing with CH. I would have tried this prior to brain surgery for sure if it was available back then. I pray it gives relief to anyone wanting to use it to abort an attack.
We had the privilege of hear Lisa Hertz speak. A survivor, a swimmer, a role model and just a good person. Its people like this that inspire me to write, fight, live and continue on. We are relate, we all suffer and some survive. This young lady gives hope to those lost and re assurance to those who are not to keep fighting. I too believe I think like Lisa...because in my vocabulary there is no such word as can't. Keep it coming Lisa.
Alexis Williams....if I closed my eyes, it was my wife up there. It was your spouse up there too. It was any survivors....UNSUNG HERO. I have blogged a million times over how my family is my UNSUNG HEROS. hearing Alexis speak was validation to my theory. For those who haven't walked out on our lives but for those whom have stayed. Those like Alexis sharing her story it resonates so deep within us. That each supporter....I prefer unsung hero stands by us....and is there to comfort us. To help us. to run and get meds, oxygen, or whatever you flavour is. To stand by so helpless and watch the horror as we live. To never complain. To go to work yourself with one eye open from lack of sleep. To cancel appointments too, to break appointments, to change your life and schedule for us. To live with this beast. Alexis story made me cry...because my wife, your husband or wife or children live it too. God bless every single Unsung Hero out there. We wouldn't be here without you. I owe my life to my son. I would to be typing this if it wasn't for him. I know many of you have UNSUNG HEROS in your life....thank them today. Appreciate them, love them and let them know. Forgive the cowards who left and went hiding. Move forward and love the ones who are there for us. Blood or not. Thank you for that Alexis. Thank you to all UNSUNG HEROS.
Day 1 of the conference meeting at night we went to the conference room to have a meeting amongst ourselves. A round table so to speak. It was a room of cluster heads and unsung hero's to share and ask in an open non judgmental form. Within the first few minutes someone ( I am so bad with names but I never forget a face) said they follow my blog (wow someone reads my stuff? lol) and viewed my videos. Asked me i think to share my story. Which I did in a matter of minutes. I skimmed through so much and touched only on the surface but gave the gist of things and mentioned my 31 days remission. a first ever. Literally. tears flowed from my face and others. A sense of bonding amongst us. No one no better or worse. Each chronic wished each episodic pain free and visa versa. There was no competition of who's worse or had more attacks because really people. 1 attack is too many. Its torture.
We all listened. We all cried and I can speak for everyone I think....we all wished we could meet everyday and share. Since my wife is in recovery and I have attended her meetings for years now. And every meeting I sat there with my mouth shut unable or allowed to speak(since I am not in recovery), It felt so bloody nice for a change to just once be able to speak and be amongst people like me not others. As much as I love my wife and support her recovery it sucks sitting there not being able to even say high 5 or way to go or i understand. For once I was able to speak and share. The irony of the conference is in recovery there moto is hugs not drugs where as we cluster heads Hug To Drug....funny. I might be the only CHr who busted with a spouse in recovery. But my wife supports me and every single one of you ClusterBusters whole heartedly. We have even discussed that if my wife was dying of cancer and if pot was a pain reliever Id get it to help her. The round group discussing was amazing.
I want to apologise if my story went longer than it should have. I wish I could have heard every single person speak and share there story and please PM me if you want to on FB but know that I was listening to all of you. Some CHrs are quiet. Just want to listen and learn. Others have so much info pent up in their head unable to share with a single person their whole Cluster Career that its the first chance they had to speak and have a single person listen ever. I get it. I truly do.
In the evenings my wife and son and I had the pleasure of joining some of you in the evenings, bumping into hallway's, sitting on a patio listening and sharing each others stories and journeys. Some of you I wasn't able to hear your story but know I did not avoid you on purpose. Know I did not want it to end. I wanted to talk to all of you. I am truly sorry if we didn't get to speak. Please come find me. I am here. I am listening. I will get back to each and everyone of you in time. Sometimes I am super busy others I have the time. i will do my best to speak to everyone I can.
My goal/dream/Bucket list is to be on TV, CNN or ? to be interviewed and have it broad casted globally or in syndication. even if its not me so to speak...one of us. I do not mean I want to be famous. I mean I want the world to know we are here and need help. And that there is support like us Cluster Buster ClusterHeads. i don't think you can't ask a person who speaks who hasn't heard of cancer, so why is it we ask 1000 random people what cluster headaches and we get 1000 misinformed answers? Ill spend my dying breaths advocating this disease until 1000 people can tell me at random what it is I have.
Id like to personally thank every single person I met at the Cluster Busters Conference. Even those whom didn't make it who followed our journey while we were there and supported us. No one was forgotten. Even if we didn't speak but you saw me from across the room. Know that time was the problem not you. I wanted to talk to everyone. A 3 day conference and a 4 day get together would have been good so we could have had all the time to talk. If we didn't speak. I apologise. Thank you to all the presenters. Dr's, Professors, Pharmas, Cluster Buster Team and UNSUNG HERO'S. I can not promise I will be there next conference. But I will make every effort to go. For us its not being able to or wanting to, its strictly financial. And I haven't been to the windy city since I was 17. Love to see the Cubs play.
If you haven't gone to a conference. Start saving and packing. It will change your life. I believe sincerely I am a better man because of it, and all of you inspire me to help, write, blog, post and advocate more because of YOU. This blog is about YOU. If you are reading this. Its because of YOU. YOU are important to me. Important to my life and mean something to me. Some played a larger impact on me and some less but no one is better than anyone and I love all of you. I can not wait to see you all again. You mean so much to me as a survivor of this disease. Please if I didn't mention your name here. Know that I love you. God Bless you all
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