Tuesday, January 26, 2016

Death, life after.....

This disease is 200x the national suicide rate. I have lost sooooooo many Cluster Heads. And sadly will loose more.

This is hard for me to write. Before this blog started. And with only 1 YouTube video I made showing me having an attack, before any of the advocacy and awareness I had done. I got an email.

It was My wife and I's first Christmas. Just dating, but our first Christmas together. And being of German decent we celebrate Christmas Eve. We were in church and my phone kept notifying me of emails. I thought as I stood there in church who in the world is contacting me on Christmas Eve. Anyone who knows me, knows I am in church. My phone was on vibrate. But it vibrated a certain way to let me know it was an email not a call.

I got in the car after church and it was an email sent to my YouTube account. In a matter of words it was a suicide note left to me. Explaining how he/she had this disease, life wasn't worth living no more. No cure to the disease, no one believed them. I rushed home and since my computer knowledge was very poor. I tried my hardest to reach this person, leaving my number, the suicide hotline, and information I could help. Since anyone can make a YouTube account.  Say they live in California when in fact they live in Canada. You can make an email the same. Be as 100% anonymous as you want online. There was absolutely no way of me finding who or where they lived.

I spent the next few weeks trying. No luck. I tried contacting as much as I wanted. To this day I never got a reply. Could it have been fake? Possibly but the wording they used to describe the attacks were perfect. A person who did not have this disease could have not described the pain like this email. Could it have been a bluff? I absolutely hope so. Kids screwing around on line? Doubt it. This was my first time I had encountered  a cluster head wanting to die. Sadly it was the first of many.

The day I was interviewed on TV about my life with Cluster Headaches I knew of 3 Cluster Heads that week who took their life. I remember them asking me to smile during the interview. How could I? I really don't think the general population fully comprehends the severity of this disease. This blog today isn't about Suicide. I have blogged about that a few times. It is about death.

I had recently blogged about death a few times from my mothers passing recently. To others who have lived and survived disease and illness.

Today, I  to discuss death and the aftermath. I recently have been working on my will with my wife.
It is a fact of reality and fact of life everyone dies. I am ok with it because I know where I am going.
But today, i am blogging about who is left behind. The questions family, friends, and loved ones ask after the person they love is gone.

Was it suicide? A long dreaded disease? A sudden accident? An immediate death due to disease?
Loved ones after a passing continually ask the age old question. Would it have been better quick, painless or to be able to say good bye.

I had to say good bye to my mom for 33 days. Everyday not knowing if it was her last. I could have left to go to the washroom at the hospital and she could have passed. Right? It sucked so bad seeing my mom die everyday. Seeing her fade. Seeing her go was horrible. Now it has been 6 months todau since mom has passed. I am glad I was able to say those things to mom. Tell her how much I loved her, How thankful I was of her raising me. How I promised to take care of dad. That we be ok. The day before mom passed. I rarely had any alone time with her, This was the 2nd time I believe. She had stopped talking already for a couple days. Stopped eating. Her eyes would ONLY open for a split second. Her breathing was erratic. All things telling life was coming to an end. I said " Mom, we promise to take care of dad , we will be ok. We love you and will miss you so much and thank you for being the best mother. And I love you mom.". My mother than lipped "I love you" to me. Those were the very last words she ever spoke. She passed the next night.  As hard as that was I am grateful I was able to say good bye. Able to thank her, be supportive,caring and loving towards my mom. I am very grateful and blessed to have been there for mom. Some people don't get that luxury. Either because it is sudden, tragic or they live to far away.

Part of this blog is about saying good bye. And the other is about life after they are gone. It is having to live with your decisions in life after they have passed. Once a person is gone. All you have is memories. Hopefully not regret. Mom and anyone else who passes can not take a single thing with them. Except memories. What someone leaves behind is a legacy. What the people left behind is memories. I do not live in regret. I tried make amends to those who deserve it, and I only want those in my life as I die there who were there in my life when I was alive. Do not come see me to clear your conscience when I am dying or have died. I don't want you there. It is a cowardly act. I want to die in peace. If I am lucky its with a smile on my face.

This blog should make you think about the life you have lead, what you give and get in life.And what we live with after. If its grieving the loss of a loved one and missing them genuinely. If it is regret wishing woulda coulda shoulda but didn't. Is it questioning the loss of life due to suicide or unable to cope with the loss of life at a young age, I have lost friends at a very young age. I know those who have taken their life. You are left with questions that can not be answered. It is not easy. There is help out there, There is support. It is ok to be sad. It is ok to grieve. Its been 6 months I still cry every night for a few seconds when I talk to mom. Its a process. It will be ok.

When I am gone. Its the same. There will be my last blog, And to look back and what I have created, done for others and how I treated others. Legacy of my wife, my son.

For me, I feel quite blessed and grateful I was able to do something positive from this horrific disease. That despite how much this disease has robbed life from me, how I was able to give to others in place of it. Make people laugh as well.

Miss you momma.

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