Wednesday, November 25, 2015

It doesn't matter if you are famous, unknown, rich, poor, male, female, old young......We still need your help

It doesn't matter if you are famous, unknown, rich, poor, male, female, old young......This disease takes no favorites.

In recent news it has come to light a very famous actor and athlete have come out and stated they too have Cluster Headaches.
While I maybe a bit apprehensive with one of their diagnosis as it was a preliminary problem for the one person it should be just as important as their other diagnosis.

The other person is an established athlete. And yes even a man of his stature and size, an attack can make them drop to their knees with a blink of an eye begging to die.

Nothing no one can do can prevent you from Cluster Headaches that we are aware of yet. Because the lack of research out there, there is no way to detect if we will get Clusters.

This disease takes all walks of life. From every continent, every age, every race, gender. It doesn't care how rich, how famous or if you are an unknown poor guy like me. If you get this disease everything you have done in life will not matter in helping you. Perhaps only in how strong you are mentally.

Once you are diagnosed or willing to help yourself, there is many venues of help for survivors out there from web forums, online support groups and my favorite aside from what your physician may suggest. Ultimately it is up to you to desire and accept help.

Some of us are seasoned veterans of this disease that offer a wealth of knowledge but us vets are always willing to learn more. There is the silent types which is perfectly acceptable, understood and respected. Those like myself who are advocates and enjoy trying to help others and others who play an integral role in this disease in many other forms. We all play a part significant or not.

I will admit with a bit of shame that I been advocating for years. About 6 now, While I am well known globally in this community and in the community I live in, I am not main stream news. But a person who is well known  as a celebrity comes out and for 5 seconds states they have cluster headaches the world listens. Sadly this is society as a whole. It took my years of advocating and 4 brain surgeries to get 2 min 26 airtime on TV locally. Yet it took 5 seconds for someone famous to mention they have the same disease and the world is Oh no, you poor thing. While I was very disheartened at first and empathetic like the rest, it motivated me to want to help more. Its not the celebrities fault the world took notice to them not the rest of us who are sick too. It is not their fault they are famous and sick. (The same time when Jimmy Carter came out and was talking about his brain cancer my mom was dying of brain cancer. My mom mattered equally if not more). But as a fellow survivor we must support one another and being famous or having a high profile job should not matter one ounce. We do not want their money or their life. Just to help. But I can only imagine how many autograph fans stalk them for memorabilia or signatures. Personally to me, their name or status means squat. What  matters to me if they are willing to talk about it,they should use their status to talk about awareness.  Potentially helping many.

I understand one particular famous person who came out a few years ago stating they have cluster headaches but went radio silent about it simply because it would affect their acting career as time is money and having 3 hour attacks will cost film sets hundreds of thousands per hour while they wait for this person to have an attack which can happen several times a day. I get that.

Michael J. Fox one of my all time hero's (a fellow Canadian I share an immense amount in common with) hid his disease for almost a decade. And then did a 180 and went from hiding his shaking hand in his pocket to building a foundation for Parkinson research to getting close to a billion research dollars. The man is a hero. He used his celebrity status, connections and did something to help others. He could have easily retired and hid. He did not. Read the book "Lucky Man" by Michael J. Fox. It changed my life.

Ultimately it is up to us. Not anyone else to do something about it. It is perfectly acceptable to be radio silent, say nothing, do nothing and just survive the worlds most painful disease. That is ok and no one will or should fault you. I would never. Or you can find your part in this puzzle. I myself have done some fund raising. I did pretty good for the short time. I have done videos. over 364,000 views as I write this. Not bad, not great. I write this blog. over 60,000 views. Which blows my mind that 10 people read this let alone 60,000. Twitter, Google plus. I been the feature of a pod cast which is the number 1 pod cast in the country. I created a logo recognized world wide. Which will be aired on a famous TV show next year, I try to help in some small form or another. TV was my greatest accomplishment media wise. It is NO SMALL FEAT to get on TV to be interviewed because of me and me only. I am NOT bragging. Not at all. But try to call, write to any TV station and get on TV. It is NOT easy. And it is edited heavy. No mention of my 4 brain surgeries, no mention of magic mushrooms helping. Despite that I was grateful the disease got any airtime. I cant count how many thousands of emails I have responded and sent to help others. I have educated local hospitals, EMS, Fire, Police in what to do if seeing someone having an attack, I have tried and keep trying to think outside the box helping a survivor. My goal is for a cluster head to walk into a hospital requiring help and not be turned away, or thought of as a frequent flyer. To educate the world.

I myself have had things happen to myself that other cluster heads have also experienced in a negative form. From loosing relationships, friends, a career and my vanity. From the disbelief "it couldn't possibly be that bad to oh, you having brain surgery for that? Oh it must be serious.

Sadly, this is the case for this disease. Disbelief. If I had a dollar for every time people looked at me with utter disbelief. (health care professionals included) that its the worlds most painful disease. Look. I didn't make this shit up. Its not may saying. I didn't make it number one. I wish my disease was 82nd not 1st. Because then it wouldn't hurt so much. I would have gladly let some other disease be first,

To be honest, I only got taken serious after brain surgery. In fact, couple days ago I had a ultra sound on my back for a lump and the radiologist asked if I was joking for saying I had brain surgery for headaches. She was not sarcastic. She was serious. For a disease with 200x the national suicide rate how much more proof do people want? I tried making videos to educate. That sorta helped. But I made the videos public for the simple fact if a survivor says they have this to a friend and the friend asks what it is....they can show them the video and say this is what I experience.

Recently I have seen online one of these high profile people discuss their clusters and were ridiculed and told to suck it up in a matter of words. It was only until I posted a video, photos of my brain surgery did the person shut up.  But really, should I have to do this and defend this person?

If you tell someone you have cancer. And it doesn't matter what cancer just the word cancer, People will ALWAYS say, I am sorry. Having watch my mom die a couple months ago I know  what cancer does. My son and I are the only people in our blood line that hasn't had, survived or died from cancer.
If you say you have MS. Diabetes, Parkinson's, people just think oh no you poor guy. Rightfully so. And people should empathize with those diseases.Absolutely hands down society should want to help and be empathetic. Look at what happened with the ALS Ice Bucket Challenge. But why is it when we tell people about Cluster Headaches no one knows what the hell it is, that no one has ever heard of it. And then comes the disbelief. It couldn't possibly be that bad. Take an aspirin and quite your whining. Listen. This is the worlds most painful disease. It is 200x the national suicide rate. Its a neurological disease that is debilitating. Watching someone have an attack is distributing in itself. The disease affects the entire family. Walking them up all hours of the night screaming at top of our lungs begging to die. This disease requires awareness. It requires research which is none. in 25 years they have spent 1.78 BILLION on MS research but in 25 years have spent less than 2 million on CH. Why? How do we change that? Awareness. and this is where I and others play a part.

So if you are the celebrity recently diagnosed or the athlete or another person in the public eye who has not come out to tell the world you are sick like the rest of us. Perhaps its time you may want to consider what your integral part is in all this. We are all equally important. We all matter. We are all survivors. We are here to help one another and have the world listen to us.

The worst thing in the world a sick person has to do is prove how sick we really are.

This blog applies to any cluster head.

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