Friday, March 28, 2014

Thanks to those who support me, even the haters! Love you all

Recently, I received what most would call "hate mail" from some person on my You Tube videos. In the email, he stated I do not help, that my stupid video with 1/4 million views isn't helping anyone and I need to get real etc. I do not need to go into detail some of the nasty things he said but I'm sure you get the jest.

In 1/4 million views. I have had maybe 10 nasty comments, emails etc. Only once it ever bother me because someone wished my son got the disease. That is where I got really upset and wished I found that person in a dark alley and made sure he had chicklet's for teeth when I was done. But like most Internet warriors who are tough behind the keyboard I dismissed it and moved forward.

My You Tube videos all of them are all subject to my approval of comments. I am not stupid and need to hear silly childish comments left. It very rarely happens. The other thing I do not allow which I know must frustrate some is my comments left for medicinal suggestions. I am pretty strict on this because medicines should be left treated between you and your doctor. Not everyone is bright enough to listen and just go ahead and try things on their own and then have side affects or even die. I do not want to be responsible for any ones mis fortune. So I allow comments that are positive or encouraging only. Its my video, my You Tube account. Not yours.

I also wrote in the description, to please read. Which sums up what I just wrote. Also explaining I do not condemn or condone the use if illicit drugs. Some fly off the handle and not read calling me an idiot for choosing brain surgery over psychedelics. If people actually read what I wrote before assuming they would read that I support alternative medicine. Seems I keep having to re explain myself with this topic allot.

I am in my opinion friends with certain people that help, support and assist others with alternative treatment's. Peoples assumptions or lets say they get their feathers ruffled since I do not do it when in fact the people advocating are not only friends of mine they are also mentors to me and Id like to think I am their biggest fan and supporter! So please do not assume since I do not, doesn't mean I don't love them.

My life, my decision and I had made the decision for surgery. If you read the blog titled "Drugs My Choice", it will clarify my decision for surgery. OK last time I bring this up. Seems like I am beating a dead horse...

Back on topic. So the last email I received from this fellow he was a cluster head too. Aside from his nasty comments/email I tried to reach out to the cluster headache community to find him. Not to bash him...but to offer him a virtual hug. To say look, I respect your opinion. I understand where your coming from and I see your in a very dark negative space. Although I never found him, I do wish him well despite his hatred towards me. My first thought was since i blog, tweet, made videos, and do as much advocacy work as I can and reach out to those who need support...I thought OK...What has he done...and as much as I googled...nothing. not a single word of encouragement anywhere. Only his hatred email to me.

So he is in a dark place and just voicing his pain to me. His email affected me for days. I kept thinking jeez, this guy really got to me. Is all I do really worth it? Is the blogging, the videos of my attacks really helping others? I know my videos are being used my professors in France, Switzerland and Japan right now but is it helping those suffering? Is my daily work really worth it?

I know I beat myself up. I am a Type A personality. I always give anything I do 110% and give my whole heart.  So yes, I took it to heart.

Yesterday, I received 2 emails on face book from fellow survivors. I really wish I could post what they said but they were private. I am never the type to point to myself and say "look at me", I am more the type to say "look at us".

These two emails, really came at a time that I personally need to hear that everything I do is worth it, I made a promise to myself that if I can just help 1 person, reach out to 1 survivor that is struggling not only physically with this disease but struggling mentally that i help them think outside the box.

Just this month I read about another suffer who took his own life. Last month I spoke to a survivor who tried and lived. When I hear/ read this stuff allot , I take it very personally. Cluster Heads are like family to me. I feel like we lost one of our own. I grieve as I know them. I hurt too.

So after these emails from fellow survivors. I sincerely walked around glowing yesterday. It really hit home. I'd like to think I am modest. I don't believe I have a chip on my shoulder but yesterday the emails I got sure not only made me glow, but made me feel important in the Cluster Headache community but that everything I do is worth it. I can't thank the people enough.

They took time out of their day to recognise me and my efforts and that just meant so much to me.
My life or what i do, I always think big, I always think what else can i do to help, advocate or promote the awareness of the disease. As a Canadian my dream one day is the receive the "Order of Canada". This award is given to Canadians who do special work for the better of their country.

I am not Michael J. Fox or Terry Fox (my Canadian hero's), but I truly give my all to everyone of you. Whether you hate me for being the "poster boy" for Cluster Headaches and there is many of us, or you hate my positive attitude all the time. Or you hate the way I look. Keep hating, keep being mad. Because its my life's mission to help those like me. Advocate, scream and yell  until this disease gets the recognition its solely deserves. I will continue to keep doing what I am doing. I will keep fighting another day. I will keep screaming "Look at US". We are all in this together. Episodic or Chronic...we are all one, united as survivors. No one is better, no one worse. All equals.
Keep hating because I even love you haters too.

Have a pain free day.:)


  1. Tom, You keep right on doing what you are doing You are making a difference, as are many others that have opened up their hearts and shared their pain and experiences.And as for the lost soul that is in such pain, may he reach out and let others know he is not alone so they can just be there for him. In the end, each person will make his or her own decision on what type of treatment they want. It is a personal choice, but it does not reflect in any way shape or form on what you or somebody else chooses to do. The end result is the people are reaching out to one another and seeking comfort and acknowledgement. Wishing you Pain Free Days.

  2. Hi Tom, firstly, I just found your blog today and my heart goes out to you. I get headaches once in a while, but thankfully nothing like you experience. I cannot even imagine how it must be for you! As far as YouTube goes, I would totally ignore the nasty and negative comments. I have seen many such comments on some pretty good and helpful videos and just don't understand why people, when they have nothing nice, or at least constructive to say, knock others down. I pray that you have many, many pain free days. Greetings from Montreal, Canada.

  3. Tom, please do keep up your good works and making a difference. You are wonderful for your compassion, commitment and soul!
    Every winner on Earth who has made a difference had their haters too. I know personally because I am doing the same as you are! There are many of us who do as we do to fight for solutions, to fight for "Us", and we must continue.
    Bless you for your very helpful contributions!
    P.S. I had a deep brain neurostimulator put in my brains' hypothalamus 7 years ago. It works! :D