Monday, November 17, 2014

Advocating my disease, leaving my footprint for future cluster heads

It takes a long time for any person diagnosed with any disease to accept their fate. To not only stop denying or asking why me but turning it around to 'Why not me?". It took me along time and a good book by Michael J. Fox "Lucky Man" for me to change my outlook and perspective. No longer wanting to die.

In over 9 years of being sick with this horrid disease I have met many other sick people. Not just with Suicide Headaches but MS, Cancer, Parkinson's, Diabetes, Lupus, Elhers Danlos Syndrome(my son) and other ailments, diseases. Some are terminal, some are not.

The one thing I have learned, there is two types of people. One , the type to wallow in their pain. Which is perfectly normal and accepted and understood. And the other is to accept it, move forward and help others along the way. Some may never move forward and that is ok. I am not faulting those who complain about their pain or situation. The person may be so incapacitated that they can not. And there is others who can do things to help others. Who are able to. Rather than be mad, pissed off I am sick and angry about it Id rather do something to help those who can not.

For me, I lost my vanity a long time ago having attacks in front of cowards, I mean friends. not I mean cowards who left me. I had an attack at a car show in front of 500+ people. No one said squat. I just screamed and pounded the ground wanting to die as a crowd of people circled around me and did nothing. From that day forward I brushed myself off, got up and said well my vanity is gone now. Time to educate.

I wanted to educate people because no one knew what was happening to me or why. I can only assume they thought I was on drugs or something. And this is where my advocacy came into effect and has snowballed since then.

I initially made my first Cluster Headache video for 5 or 6 people to show so called friends and co workers what happens to me since I can not make myself have an attack. Attacks are rated 1-10 on pain scale. The attack was a about a 7.5. I could not film myself having a 10. Its virtually impossible to do anything or form a thought during a 10. I have often said Id perish in a fire if I was having a 10.
So I made this video, as a private link. The video turned out to be useless because my friends at the time didn't believe it could not be "that bad"- a direct quote from a coward.From the day of the car show attack I made the video live on YouTube. Today, it has 250,000 views and counting.  I never knew the day I made it there was 'Cluster Chucks" video or of there was any more. I had no idea.  Not a clue.  I was not researching at the time. I was not part of any facebook or Cluster Forums then either. In fact. I was suicidal then.

In time I was getting comments almost daily on the video. Alot of others who had the disease but wanted to stay private and not make a video of their own. And really, if I had not had the attack in front of 500+ people staring and pointing at me. Id probably would have never made the video live to the public. It was humiliating to say the least. Showing up again at the same venue knowing what happened the weekend before was hard. I knew I had to do it in order to continue my hobby despite being so embarrassed.

Overtime, I had made a lot of connections because of the video. Met others who suffered like me. I also made other videos too. And then videos before and after my brain surgery. In over 300,000+ views of my videos...I have had maybe 10 jerks respond with stupid comments. Only one ever got under my skin when someone wished my son got sick. That guy id like to find in an alley and show him how teeth can become chicklets. But aside from that. Its been therapeutic.

There is a sad side to these videos. I have had some contact me before suicide. Christmas Eve about 5 years ago a fellow emailed me and said watching me was like looking in the mirror and was cashing out. I tried everything in my power to find and contact the person and his account remained stale after that email. Rather than take down the video it inspired me to help more.

When I went on CPP Disability (Canada Pension) I had a personal struggle with accepting Ill never work again. It was really hard for a me to accept. A friend with MS suggested I volunteer. I argued it was impossible as I was turned down to volunteer because if i got an attack Id have to leave asap. Another friend who is sick too suggested I blog on top of the videos. I took both their advice and write this blog you are reading now. The blog is not only therapeutic yet a way for me to express myself. share my disease and educate others on the disease. Living and coping skills. A lot can relate to having the disease. It has also been a foundation for others who are trying certain types of measures to help them self. Whether it be brain surgery or busting.

My You Tube videos are being used in training seminars globally. I know Doctors and Professors in Switzerland, Japan, Australia, France, USA and no India are using my videos to demonstrate to students and colleagues about this disease. They use my videos to demonstrate what an attack looks like.Which brings me great joy t know there is medical staff now aware and can potentially diagnose a cluster headache better and speed up the diagnosis time. In this decade there was a time when it was 16+ years to diagnose a cluster headache. I have heard its down to 4 or less now. I was very very lucky being diagnosed in under a year. Which even today is almost unheard of. In time, others have made their version of Cluster Headache videos.

Then from the blog and YouTube videos I decided to make some decals for my cars. I found a sign maker and sat down with him and explained exactly what I wanted it to say and how it should look. Since out ribbon is purple I wanted to incorporate not only the ribbon but the words, the  name of the disease. It was very important for me to give the disease a true meaning to us that suffer. Suicide-Cluster Headache with the ribbon in the middle. If you see this logo anywhere. I made it.I made it for all of us. All of us that suffer and survive. I made it for the unsung hero's who live with us and the disease.

It was made for all of you. The initial decals I had made are very expensive and large. It is not cost effective to make more and mail them. I highly doubt people would mail me $50 for this decal plus shipping. I have been asked numerous times about making this decal for others. In the next week or two stay tuned to my facebook page. You will see i have something coming up that is a win win for everyone.Stay tuned.

I also had joined and These are two online forums dedicated equally to helping and educating others about cluster headaches. I am not as active on both of them as id like to be. But I do my best.  I hope that what time i have been on either of those sites it has been in a contributing forum. Cluster Busters is more dedicated to research and advocacy with helping those by educating those who choose to "Bust" as I have.  Although my Busting has been recent and prior I had made a personal choice not to, I was always in support of what they did for others despite what a few might have thought. Some had assumed since my choice was not to. If you read my blog below you will see why i had not chose to bust before but why I am now.

Along came Facebook and advocacy My wife and I had  ditched facebook shortly after we started dating. I found no perpetual use for facebook and was growing tired of ready drama and who was washing their hair. Well, because of many advocacy events happening , a lot was on facebook that I was missing out on. I reluctantly joined with 90% primary purpose of advocating cluster headaches. I personally had no interest finding high school friends, former co workers etc. The friends who I know on Facebook now hold a special place in my heart for particular reasons.  Because of facebook I was able to advocate more effectively, meet more cluster heads globally and help others as much as I can.

I had also made the 'Brain Freeze Challenge" An advocacy video I made to raise awareness. It wasn't successful but I tried. There is no such word as can't in my vocabulary.

My family and I attended the 2014 Cluster Buster conference in Nashville and I believe a large part had to do with facebook and people I have connected with globally. I think I have grown as person, listened to their struggles and battles and have tried to help them as best as I can and been helped myself along the way. Because of Nashville  I was able to meet face to face cluster heads from all over the planet. People who no one had to say a word to prove anything. People who you could have a full conversation in a room and not say a single word to. It was life altering. I met advocates like myself and those who just watched and learned. 

After my trip I concluded that many go to emergency rooms and are turned away because we are thought of as drug seekers. My own personal experience with EMS with disbelief with a paramedic as I was have a PTSD attack  at a dentist. I read in the local paper that an inmate had been refused a medication and hung himself. And last police are trained to see diabetic shock. So why not train all these people on Cluster Headaches???? Watching me, a 6ft 1 290 lb man have a cluster headache is scary. A police officer may think their threat level is high. Seeing me run my head into drywall, breaking headboards, and screaming at the top of my lungs may make anything think I am high, on drugs or mentally disturbed. An ER triage nurse may think I am seeking opiates, a paramedic may be in fear of getting hurt. 
I then wrote a letter educating these trained professionals. I had Bob Wold , the head of Cluster Busters and Dr.Brian McGeeney assist me with my letter. I contacted all forms of Police(Federal, Provincial and Municipal) Fire, EMS (First Responders), Detention Centers, and both hospitals in London here. 

The letter I wrote explained the disease, how to treat and to take us seriously. I no longer wanted any survivor to walk into a hospital in fear of being turned away or thought of as a narcotic drug seeker. I explained they would have to give us enough morphine to knock us out cold or kill us. I wrote it and signed it as a survivor of the disease with 4 brain surgeries and someone who aspired and trained to be a cop. I was not only taken seriously. I was thanked and the letters are no being implemented into their training. the nicest letter I received was from London Police Service. Now, many cluster heads have contacted me for their own cities to send letters to their own police, first responders and hospitals etc. Because I believe, one more educated person is one less cluster head in fear. Together we can all make a difference.

The biggest advocacy I had ever done was brain surgery. I have written about my experiences below. And I won't bore you with it again. But I not only tried it to help myself. But being the 2nd in Canada and the 17th on the planet at the time. I had done it for the greater good of cluster heads world wide. I had truly believed in my heart it would work and had hoped my brain surgeries would have set case precedent for others to have it done and be successful in getting relief. Sadly I got none. But at least my busting is that I am living proof it works.

A few other projects I been working on is trying with CNN, local media stations and social media. This being one of them. Twitter has been great. Facebook and Google Plus. Some times its overwhelming. I do have a family that comes first. But I try my hardest every single day of my life and my last days alive will be advocating this disease. 

The most recent project I have been working on will come to light in a few weeks. I can not say anything but it is a win win for everyone. This project would have went underway a very long time ago if I had money. Lets just say, I had to wait to get this project started and it will only bring me joy to see others happy, Cluster Busters benefit from it and others educating the world about it. I can not say anymore because its a surprise. I worked many long hard hours on this and I am so excited to "Pay it Forward". A promise I made to my brother Dan and a promise I keep to myself everyday. It motivates me, it inspires me and as small and minuscule as it is. Its very important to me.

So, if you are a cluster head and are piss pot poor like me. You can advocate. You DO NOT need money. You can educate one person everyday about the disease. Tell someone, educate them.  If your a survivor or an unsung hero. You can do it. It costs nothing and can help your loved ones, yourself.
I have lost a career, friends, relationships and my vanity. What I have gained is amazing. A family that cares and grows each day and each day we can help one another. By awareness, education and compassion we can help those who can't.

Blessings and pain free wishes

1 comment:

  1. You're an amazing writer and advocate , pay it forward , Thank You my Cluster brother ....