To the random and not so random visitors that have come across this blog, I thank you for stopping by and taking the time to read.
I challenge you to take a moment to leave a comment if you can. It doesn't matter what part of the world you are from, or if you're from my own back yard. Just leave a comment! I'd love to hear from you and your thoughts about ALS.
Sunday, September 2, 2012
Seven Months Since Passing and No Tombstone
My father passed away seven months ago, in February 2012. It's now September 2012 and my father still doesn't have a tombstone. I had to push really hard to figure out what was going on at the funeral/cemetery offices and they were probably sick of hearing from me, but I figured: my Dad went through a lot. My family and I, we went through a lot. This ALS disease that my dad passed away from, it's called "the beast" and as his son, his unofficial manager and his personal representative in most aspects of his care, it is a lot. I figure, the least we can have is a nice tombstone, memorializing my father in his prime, which was pretty much right before he was diagnosed with ALS.
He was a handsome man. The photo I used was of him in a tuxedo at my sister's wedding. I had to crop a whole lot out of course– to save space but essentially it came out looking like a headshot of him in a crisp tuxedo and him holding a microphone. He was an MC and a disk jockey in his spare time so this was appropriate. That's all I wanted, was to see this beautiful tombstone with his photo on it to honor the man that I loved dearly who I took care of at the great expense of my own health and social life. But in our culture, that's what sons do for their fathers if they become ill. The timing couldn't have been worse. I was still feeling youthful and immature and had made a decision to reinvent myself by going back to college after a long career in the airline industry, which was crap after the Twin Tower attacks. I had to grow up real fast and emotionally step up to the plate, I admit. But, I wasn't going to put my father's care in anyone else's hands, especially a facility, which has been taboo in my family for a couple of generations.
So seven months later, and here I am. Still pushing, still fighting to make things right for the memory of my father. But that's ok, it's helped me grow and make me an advocate of the disenfranchised and appreciative of the struggles of the disabled and put in my heart the yearning to help somehow; help and unconditionally love. This is one of the spiritual legacies that arises from having taken care of my father throughout his short but valiant fight against ALS.
I'll let you know when the tombstone comes in.
Never give up.
He was a handsome man. The photo I used was of him in a tuxedo at my sister's wedding. I had to crop a whole lot out of course– to save space but essentially it came out looking like a headshot of him in a crisp tuxedo and him holding a microphone. He was an MC and a disk jockey in his spare time so this was appropriate. That's all I wanted, was to see this beautiful tombstone with his photo on it to honor the man that I loved dearly who I took care of at the great expense of my own health and social life. But in our culture, that's what sons do for their fathers if they become ill. The timing couldn't have been worse. I was still feeling youthful and immature and had made a decision to reinvent myself by going back to college after a long career in the airline industry, which was crap after the Twin Tower attacks. I had to grow up real fast and emotionally step up to the plate, I admit. But, I wasn't going to put my father's care in anyone else's hands, especially a facility, which has been taboo in my family for a couple of generations.
So seven months later, and here I am. Still pushing, still fighting to make things right for the memory of my father. But that's ok, it's helped me grow and make me an advocate of the disenfranchised and appreciative of the struggles of the disabled and put in my heart the yearning to help somehow; help and unconditionally love. This is one of the spiritual legacies that arises from having taken care of my father throughout his short but valiant fight against ALS.
I'll let you know when the tombstone comes in.
Never give up.
Monday, June 18, 2012
An Editor To Publish Obituary! Four Months Since Passing.
"If you think positive and pursue action in the course of that positivity, positive things will happen." –Me.
Grieving the loss of my father wasn't easy. I took it pretty hard. He was one of my best friends and we were always together. We were a very very close family. Sure he had his quirks, but thats what made him unique. I was so upset that I didn't have the money to publish a formal obituary in time for my father's funeral but the fact was that it was simply too expensive given the exorbitant cost of his final expenses and medical bills. We are a family of modest means and my dreams of having a fancy obituary with his photograph in the San Francisco Chronicle fizzled when I was given the price tag.
All hope was lost.
Well maybe not all hope. I have been getting some positive support from a friend and mentor who's mentorship I consider invaluable. From a distance, she did little things to brighten up my grieving self. She sent the largest bouquet of weeping lilies that I have ever seen. It was the absolute first bouquet of flowers to arrive and it took its place rightful place in front of the podium near Dad's casket. When I read the card, that it was sent from Los Angeles from one of my University of California fellow alumni, I broke down in tears. No friend had sent me love from that far away before, and I admired her heart. I'm going off on a tangent, in case you didn't notice, but I had to mention it. But like the flowers, she from afar off–again Los Angeles, sent me numerous messages and manuscripts rooted in positivity and pure loving support.
A couple of months from my Dad's passing, I get a package in the mail. The postmark and address reads Los Angeles. It's from her again. This time she sends an inspiring video about the power of positive thinking, which is something we had been practicing and talking about together for a while now since our time together in Southern California. But it was wonderful to get this new refreshing perspective which seemed to empower me and was just what I needed to lift my spirits up.
I thought about the obituary again. Grey clouds. Then, a sudden ray of light, a glimmer of hope. It hit me. Everything that I learned from my friend, our conversations, the literature, the video, her kindness and caring enough to reach out...there had to be a way to get an obituary published somehow for someone like me who just out of college was knee deep in college debt. I was determined to keep it positive and find a way.
Sure enough, I receive a sad email that a fellow patient with ALS recently passed away. I contacted the family to express my sincerest condolence at the loss of this amazing Italian father and husband at the hands of ALS. I spoke with the son for about an hour, sharing stories, comparing notes and reveling in the fact that we were both part of the University of California network. It's at this point that I mentioned that I read his father's obituary in the paper and that it was so touching to me and that I regret not having my own father's obituary published. He too mentioned to me that he was of a family of modest means and that the paper that published his father's recent obituary–published it for free.
Bingo.
We exchanged information and he put me in contact with the editor of the paper that published the obituary as a courtesy for those living in our county. I contacted the editor right away and explained that I was four months into my father's passing and that I couldn't afford an obituary at the SF Chronicle and sure enough he said that he would publish it for me, service to residents of our county. I've got to be honest, I haven't read their paper often enough to notice there was an obituary column. Now that I've got my obituary published however, I will be an avid supporter of the paper. Maybe a donor someday if I make it big.
Affirmation: Today, I am grateful for those people who have come into my life as if by coincidence, like an angel from above, come down to ease the suffering of a tender soul. For those of you who know who you are, you are loved and appreciated. Thank you for nourishing my spirit.
Socrates Last Will & Testament Kit
Grieving the loss of my father wasn't easy. I took it pretty hard. He was one of my best friends and we were always together. We were a very very close family. Sure he had his quirks, but thats what made him unique. I was so upset that I didn't have the money to publish a formal obituary in time for my father's funeral but the fact was that it was simply too expensive given the exorbitant cost of his final expenses and medical bills. We are a family of modest means and my dreams of having a fancy obituary with his photograph in the San Francisco Chronicle fizzled when I was given the price tag.
All hope was lost.
Well maybe not all hope. I have been getting some positive support from a friend and mentor who's mentorship I consider invaluable. From a distance, she did little things to brighten up my grieving self. She sent the largest bouquet of weeping lilies that I have ever seen. It was the absolute first bouquet of flowers to arrive and it took its place rightful place in front of the podium near Dad's casket. When I read the card, that it was sent from Los Angeles from one of my University of California fellow alumni, I broke down in tears. No friend had sent me love from that far away before, and I admired her heart. I'm going off on a tangent, in case you didn't notice, but I had to mention it. But like the flowers, she from afar off–again Los Angeles, sent me numerous messages and manuscripts rooted in positivity and pure loving support.
A couple of months from my Dad's passing, I get a package in the mail. The postmark and address reads Los Angeles. It's from her again. This time she sends an inspiring video about the power of positive thinking, which is something we had been practicing and talking about together for a while now since our time together in Southern California. But it was wonderful to get this new refreshing perspective which seemed to empower me and was just what I needed to lift my spirits up.
I thought about the obituary again. Grey clouds. Then, a sudden ray of light, a glimmer of hope. It hit me. Everything that I learned from my friend, our conversations, the literature, the video, her kindness and caring enough to reach out...there had to be a way to get an obituary published somehow for someone like me who just out of college was knee deep in college debt. I was determined to keep it positive and find a way.
Sure enough, I receive a sad email that a fellow patient with ALS recently passed away. I contacted the family to express my sincerest condolence at the loss of this amazing Italian father and husband at the hands of ALS. I spoke with the son for about an hour, sharing stories, comparing notes and reveling in the fact that we were both part of the University of California network. It's at this point that I mentioned that I read his father's obituary in the paper and that it was so touching to me and that I regret not having my own father's obituary published. He too mentioned to me that he was of a family of modest means and that the paper that published his father's recent obituary–published it for free.
Bingo.
We exchanged information and he put me in contact with the editor of the paper that published the obituary as a courtesy for those living in our county. I contacted the editor right away and explained that I was four months into my father's passing and that I couldn't afford an obituary at the SF Chronicle and sure enough he said that he would publish it for me, service to residents of our county. I've got to be honest, I haven't read their paper often enough to notice there was an obituary column. Now that I've got my obituary published however, I will be an avid supporter of the paper. Maybe a donor someday if I make it big.
Affirmation: Today, I am grateful for those people who have come into my life as if by coincidence, like an angel from above, come down to ease the suffering of a tender soul. For those of you who know who you are, you are loved and appreciated. Thank you for nourishing my spirit.
Socrates Last Will & Testament Kit
Friday, March 23, 2012
One Month Since Passing.
It's been over a month since my dear Dad passed away. His rapid progression and death was unexpected. Well technically the signs were there. He had a significant slope downward in his health and we had been forewarned that week by our hospice nurses that he was in a declined state, but to me the progressions moved slowly since I was with him nearly 24 hours per day and I couldn't see the subtle changes. Dad leaving me was the farthest thing from my mind. I just did what I had always done from the beginning: buck up and do what needed to be done so that Dad was comfortable and not in pain. But the signs were there–perhaps we the caregivers were a bit myopic in our scope because of the intensity of the caregiving. In the broader picture, we perhaps should have prepared for an obituary in advance. But in the midst of intense caregiving, who thinks of these things?
Well the time came. He departed us here on Earth, his light extinguished as fast as a candle on a windy night. That evening he was there, I rested for half an hour, and he was gone.
Hour Glass Sands
My time with you,
is like hourglass sand.
I can see your sand,
me, watching desperately
helpless from the other side
of the hourglass; and you–
slipping away slowly
right before my very eyes.
I bear your witness,
strong for you but
suffering inside, watching
until the last grain
of your hourglass sand
falls into the abyss.
The deafening silence
loud enough to break
that glass in pieces
because our souls cry
out to have you back,
but not like that,
just not like that.
I envision that place
where your soul went–
the glass empty
and you, in no pain.
I see the glass and the sand
overturned, and you
whole.
In Paradise, whole.
© DAR 2012. All rights reserved.
Hour Glass Sands
My time with you,
is like hourglass sand.
I can see your sand,
me, watching desperately
helpless from the other side
of the hourglass; and you–
slipping away slowly
right before my very eyes.
I bear your witness,
strong for you but
suffering inside, watching
until the last grain
of your hourglass sand
falls into the abyss.
The deafening silence
loud enough to break
that glass in pieces
because our souls cry
out to have you back,
but not like that,
just not like that.
I envision that place
where your soul went–
the glass empty
and you, in no pain.
I see the glass and the sand
overturned, and you
whole.
In Paradise, whole.
© DAR 2012. All rights reserved.
Obituary: A Reality Check
Bitter.
That's how I feel about the whole process of publicizing a formal obituary in the newspaper. It's expensive enough to die and have all the funeral, final expenses and medical bills to settle and then to find out that to publish the obituary that I wrote, in the San Francisco Chronicle would cost about $1400 is just ridiculous. There certainly is some profiteering going on somewhere in that whole process. I cant help but wonder of the families stratified socio-economically lower than my own, how do they get by publishing their own obituaries? Simple. They don't.
Perhaps these sentiments arise from the fact that I was unable to fundraise the donation amount needed to publish the obituary. So, I underestimated the task of fundraising the amount to publish. But in this, I've come to a realization that there are probably a good number of people who have loved ones that aren't publicized in the obituary column– due to lack of funding. Those that have, they publish. Those that don't have, like our family, they don't.
I want to re-spell it "o-bitch-uary". Because that's what it really is. Shenanigans. An opportunity to make a buck from the bereaved or the beloved. Sometimes, like in our case, that just isn't possible and it would help that there were places where you can publish an obituary where you can get a square deal.
For the meantime, I haven't totally given up on the idea of having an obituary. I'm just going to publish it on a free internet site in tribute and memoriam to a great man. My Dad.
That's how I feel about the whole process of publicizing a formal obituary in the newspaper. It's expensive enough to die and have all the funeral, final expenses and medical bills to settle and then to find out that to publish the obituary that I wrote, in the San Francisco Chronicle would cost about $1400 is just ridiculous. There certainly is some profiteering going on somewhere in that whole process. I cant help but wonder of the families stratified socio-economically lower than my own, how do they get by publishing their own obituaries? Simple. They don't.
Perhaps these sentiments arise from the fact that I was unable to fundraise the donation amount needed to publish the obituary. So, I underestimated the task of fundraising the amount to publish. But in this, I've come to a realization that there are probably a good number of people who have loved ones that aren't publicized in the obituary column– due to lack of funding. Those that have, they publish. Those that don't have, like our family, they don't.
I want to re-spell it "o-bitch-uary". Because that's what it really is. Shenanigans. An opportunity to make a buck from the bereaved or the beloved. Sometimes, like in our case, that just isn't possible and it would help that there were places where you can publish an obituary where you can get a square deal.
For the meantime, I haven't totally given up on the idea of having an obituary. I'm just going to publish it on a free internet site in tribute and memoriam to a great man. My Dad.
Thursday, March 8, 2012
My Father's Obituary (Or Lack Thereof)
For months I've tried to keep this blog up and running consistently, but as my father's primary caregiver and university student, things got a bit overwhelming, to put it lightly.
Dad died in my arms, his last breath– fleeting before my very eyes. I will retroactively write about the progressions leading up to his passing and the great void that remains in the wake of his passing, once I muster up the strength to regain my center balance.
Dad wasn't covered by life insurance. The benefits of having had an active policy would have aided us tremendously for final expenses– I may write about in some other post. We were, however, fortunate enough to have family members and some friends contribute for the funeral and some outstanding medical expenses.
A Proper Obituary
When we die, we all want to be remembered fondly, I would dare to imagine. To have an obituary published however, was a shocking and disheartening process, I found out. It is so expensive, so impossible to summarize in one sentence, someone as complex as my father. A one-liner simply could not suffice to describe the very special person that Dad was, and his contributions toward humanitarian causes such as coming to the aid of catastrophe survivors in Latin America with the help of an American Airlines nonprofit he helped found, helping to inspire youth to use their time creatively by dj'ing music and the random acts of kindness he exemplified in his own generosity of giving towards everyday people.
There's an old saying that rings true to me, which says that "it is more expensive to die than to live". I'm beginning to believe it because a decent size obituary that I wrote (decent size for me being a writer that is) leaves me at just around $1500 dollars and so that is my end goal and the purpose of what these funds will be used for. I simply can't pay for this outright myself right now and so every little bit helps.
I don't want my father to remain in the ground without a proper obituary. What child would let this go unchallenged?
There's an old saying that rings true to me, which says that "it is more expensive to die than to live". I'm beginning to believe it because a decent size obituary that I wrote (decent size for me being a writer that is) leaves me at just around $1500 dollars and so that is my end goal and the purpose of what these funds will be used for. I simply can't pay for this outright myself right now and so every little bit helps.
I don't want my father to remain in the ground without a proper obituary. What child would let this go unchallenged?
Your help is greatly appreciated.
Please, make your donation right now:
Your donation is desperately needed, is greatly appreciated and will help honor a wonderful man who fought hard against ALS. Each donation will be thanked and acknowledged personally. You will be blessed for your act of giving.
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