As I sit here and ponder what to blog about, so many different ideas pop into my head about what to write in correlation to my life with Cluster Headaches.
Alot of Cluster Heads will concur that the disease has taken much from us and for some of us, including myself. My ability to work. I have even tried to volunteer and was turned down.
I was turned down for a particular volunteer opportunity because i believe it is because my attacks can happen anywhere, anytime without prejudice ! I have to stop, leave and get out of dodge when an attack happens....so, how can I be reliable, helpful to the people needing me? I can not. Was I bitter? Not really. Just another confirmation in my life that the disease is what it is. I can not control that I am sick. A dear friend of mine whom I have immense respect for who unfortunately has another disease told me prior to going on disability that not to be hard on myself and to know that becoming"disabled" opens opportunities and avenues you would never think of. I think the hardest thing for me was to have the label "disabled". Some people think "disabled is the person in a wheel chair" and that is by far not the case. Not all disabilities are visible.
It took me a great deal of time to accept the term "Disabled" but I did and I fully agree with my friend that life has has opened the door for me in so many ways. I have been able to volunteer my time on the computer with my blog, my videos, speaking to people globally. I do not give medical advice.I offer support, encouragement, insight and offer"thinking outside the box" and to show people how grateful we are with life.
I reflect my life as i walk around my house, my life thus far what I have achieved, things I have done,places I have travelled and the life I have led. I can not help but miss working. I have been a "Barber, Service Advisor(car dealership),taxi driver, factory worker, apprentice mechanic, and more".
I very much miss Barbering. It's an art form, a dying breed of talented craftsmanship. I had my own shop called "Chopped and Lowered Haircutters". It was a garage themed Hot Rod barber shop. I had tool boxes for stations, racing tires for tables, car seats for couches, Hot Rod and Motorcycle pictures, famous autographs from Tim Allen, to Jay Leno, flames and rock and roll music with 50s salon type barber chairs. It was the coolest shop around. Aside from the cool shop.(see my YouTube page for a video fo my shop). I loved every second I went to work. I took immense pride in what I did. I never cut corners(no pun intended), I made sure that every customer was happy and if not I went out of my way to do so. I had a policy that if no one liked their hair cut it was free. And in the year I was open. That never happened. I regret handing out all free bee haircuts to free loafer friends. As soon as I got sicker, business closed. So were they....gone. (another topic that makes me vomit). At the time it was ok to hide the disease working because I could put a "Family Emergency" sign out and go and hide in the bathroom while I had an attack, but wasnt too long before people caught on and knew something was up. The fatigue got to me, my eye would not look right,people are not stupid. I hid it as long as I could. The older I get the harder it was for me to hide. After I closed the shop I could not longer hide it anymore. I do not have the same fight in me as I used to.
But I miss working. I miss, getting up early to make a lunch, and head out for the day. Now my days still consist of 6am and coffee. That will never change, even on 1 hour or no sleep. I still get up at the crack of dawn. ( I detest wasting a day sleeping- I tell my wife, sleeping is for when I am dead).LOL
It took me along time being on disability to know that I still have purpose. I can never be accountable as an employee and or volunteer for someone other than my time when I am well enough to do so. But I have purpose here. I have purpose with my book, my blog, soon to be helping a friend in the USA with helping spreading awareness through his website.
For alot of people, it is tough to decide you are unable to work no more for a company. And to decide to go on disability. Its not an easy thing to do financially, emotionally and physically being home.
Find the niche inside of you that gives you purpose. I had the hardest time agreeing with my wife's best friend that volunteering was rewarding. That being "disabled" was OK. As stubborn as I am, in time, it happened and I am write where I am supposed to be.
I could care or less if I am looked down upon because I am 41 and on Canada Pension Disability. Yes I am 41 and will never work again. Volunteering my time on here, people I email to globally, spreading awareness of the disease through advocacy, making videos, writing my book is moving forward positively. I can not stop the Cluster Headaches. I can help others when " I am not down".
Over 100,000 hits and counting on my videos, 7000+ hits since December with my blog, thousands of thank you emails I get for the work I do. But if I can prevent one person from suicide. Help one person think outside the box and to live in the now and not "Oh no when is my next attack" is all worth it, if I help that one person.
I look back and cherish my fond memories, of working at jobs I loved. But moving forward positively making new memories with helping others.
Thank you for being part of my life. Thank you for watching my videos, reading my blog, sending the warm thank yous, and encouraging me to help others.
God Bless to anyone surviving....and Happy Canada Day to my fellow Canadians.....eh !!!!