Thursday, June 14, 2012
It Seemed So Simple - part 3
Non Profit in the (Non) Making-
How hard can it be to do something good? Let me tell you.
So, I am deluding myself into thinking I can start a non-profit organization. Original start up costs are definitely an issue, but, if I host a fund raiser (It seemed so simple - part 2), I can raise the money needed to get started, and then, I can host several fundraisers throughout the year. Simple fundraisers, such as reserving times at local restaurants, who then make donations to your organization simply by having guests bring in a flyer. Sort of like, you bring in customers, and they pay you for it.
So, I start poking around the internet. I google "How To Start a Non Profit". Basically, in theory, it's not that hard. Search for name availability, reserve name, file with the state, file for non profit tax exemption, build a board, have a meeting. In theory, very doable.
In reality, it's very, very difficult. In reality, it looks like this:
Reserve name with the state $10.00. This money, I had, and this step I did.
File Articles of Incorporation with the State. Articles must state certain, very legal claims about the name of the organization, what type of non profit it is (Public Benefit Corp.), the reason you are forming. You must state that no funds will be used for the personal benefit of any officer (and it took a week to find out whether an officer could ever get paid - yes). You must state that any funds will be donated to another charity, if you dissolve, and where you expect to get your funds. Fee $35. This money, I have if I use my summer funds and can pay it back at fundraiser.
Immediately upon being granted incorporation status, your "company" becomes liable for minimum of $800 yearly state taxes. MINIMUM! Unless you qualify for tax exemption.
So, I continue on.
I start making phone calls, looking for pro bono attorneys. I have heard about them, but in my case, they are a myth. I look for discount aid, deferred payment options, all myths. I do find one woman, who works for a firm that incorporated a company I know of, who says I can start the non-profit paperwork and can practice "in good faith" for 27 months, while all the steps are processed. I speak to a gentleman at another law firm, who says I am wasting my time, because I can not practice "in good faith", that no donations can be deducted, that I will have to pay back all donations, if I do not get approved. He quotes me several thousand dollars, just to help start me up. He informs me that I most probably will not receive IRS approval, unless I have a corporate sponsor. Huh? Would that be the corporate sponsor I am not allowed to solicit, until I am a legal entity?
I poke around the computer some more, and it does look like I can, in fact, proceed "in good faith" for those 27 months, but I am worried about what to do with donations, if I do not ever fill out my forms correctly enough to qualify. But, we will see. And...I need to file for a gaming permit, before I can have a raffle, and 90% of that income must go toward charitable works. Not to fundraiser costs, and I still don't know if it can be used for general costs or must be used as actual donations out.
After filing my articles with the state, I must file for an EIN with the State Board of Equalization. EIN = my tax ID#. Free, and even I can afford that.
Then, I can host my fundraiser, so long as I send in for my state permit (and any local fees, which I have not even bothered to check, yet). But, before I can solicit prizes, and before my donors can write off their donations, I must file a 29 page form with the IRS (I guess donations are tax deductible until I am not approved??).
Do I understand all of the form? No. I am supposed to include my business plans, actual plans on what I am doing (not planning - actually working on), how much I expect to make, where I will make it, what exactly, I will do with what portion of the money. I have to say, I know what I want to do with the money, but I certainly can not portion it out, when so far, I have zero. Well, negative $10, because I have reserved my name.
Oops- did I mention I have to have a board in place? I have three people, all related to me. I can think of one or two more, but not all get along, so there goes that idea. I have to have a meeting and send in minutes, which I can do, because I will simply take minutes on this first fundraiser plans. But, that is not even enough. The directions suggest newspaper notices, paperwork that shows what you've done in previous years. (Which years would those be?). Too many forms to remember and list, here. Fee $375, if I plan on making less than $10,000 per year, and $700, if I plan on making more (whether or not, I get approved). How would I even know that TODAY? And, if I don't get approved for that tax exemption, I am still looking at the minimum $800 yearly tax.
Remember, I can not even pay my personal bills.
So, as I am moving from one website to another, and book marking so many, I would not be able to locate them, anyway, I come across a page that says my board must change every couple years. But, I think, what happens if I can't find new board members? I have called the local hospital, and they are not allowed to affiliate with any one entity (hence, the lack of information for those of us, who reach stage IV level). If I can't find anyone to join the board, or replace an existing member, do I need to dissolve? Who knows, at this point.
You know the saying, "It takes money to make money"? Well, sadly, that applies, even if you are trying to make money to help others. If I had money, if I had a sponsor, I could move ahead. I could have my forms filled out for me. I could hire a book keeper to log every single penny that comes in or out (which I could log, I just could not file correctly on the 990 form I just learned about).
Every time I log onto my computer, I find a new form that must be filled out. I do not find them on one page. I find them here and there, by chance. Sometimes, the website containing one form will link me to a different website with the next form. But, some of these forms, I have just been lucky to find. What if I do all I know of, only to be denied, because there is still another form I have not yet found?
Oh, let me add the fact that, there can not be competing non-profit entities. I find that touch confusing, seeing how very many non-profit organizations that focus on breast cancer, but I certainly am not going to spend my money (and especially the money of those who would be generous), only to find out I have been denied, because I am in "competition" with another non-profit organization.
I read an article about a mother who took two years, and fought long and hard, to form a non-profit in her son's memory. The difference between her and myself, is that, in two years, I will be 1/2 way through my life timeline. I know. I may be one of the lucky ones. My cancer seems to be contained for now. But, I know there are no guarantees. I may be changing chemos, as early as next month, after my June scans. It may take another year. I don't know when, but I do know if. I do know, that at some point in the fairly close future, I will be on meds that will make me sick, again. I know I will suffer severe bouts of fatigue. I know my feet will hurt worse. I know I will have to work through all that. Would I be able to include all the efforts of starting this non-profit organization? If I thought there were a way, I would expend that effort. I truly would. And, what if I become so sick I die, before I can even get government approval. What have I accomplished then. other than stealing time away from my family, for a nice idea that never worked out?
And all this while, I sit in my still very messy house, having spent the majority of the last two weeks researching on the computer. I pass the three hampers full of dirty clothes, boxes of household items I have cleared from shelves but don't know what to do with. I would really like to not die in a filthy home. But, again, if I could make the non-profit organization work, I would. I just don't see how I can, when I don't have any money. Any money, at all.
So, I'm watching another dream die.
Sometimes, I think, it's better not to want things......but, of course, I do want things. That is the never ending dilemma. Especially when the thing I want seems important.
It Seemed So Simple - part 2
I had such good intentions. I really did. The problem is, I am naive. I feel good, right now. I have high energy, low nausea, bearable pain (some of the time). I have free time.
And so, I thought I would do something beneficial, while I could. My first thought was a public service announcement about metastatic breast cancer (which I WILL do!). Then, I thought, maybe, I could get a full documentary done (apx $100, 000 - so, maybe not). Then, I thought I would host a fund raiser, which morphed into thoughts of a non-profit organization. And, I have spent the last two weeks working toward that goal, sometimes with great hope, and sometimes with great discouragement.
I started with a phone call to a local hotel to see about reserving a room for October 13, 2012. As October 13th is National Metastatic Breast Cancer Remembrance Day, it is the perfect date for the fundraiser. The catering rep gave me a price of $26.28 per person. That means, I must charge $27.00 per person. I'm not sure about the rest of the population, but I do know that I can not afford that. Especially, with a family of five. Well, six, if you count my (almost) son-in law. My older brother can not afford his family of four. My younger brother can not afford his family of four. So, right off the bat, I have to comp something like 10 people at $27.00 each, because, of course, I want my family there.
I have to make a $500 deposit to reserve the date. The rep said she would split that in 1/2 and allow me to pay $250 now, and $250 later. Now, in my case, that involves using money from my last paycheck of the school year (which pays my bills during the summer, until I receive my first paycheck of the next school year, in October). On a yearly basis, my husband must pitch in to pay my "summer" bills, so you can see what a frightening prospect this is.
Now, if I use my summer money to put down $250, and ten paying guests reply to my invitation, I can pay myself back. If I get twenty paying guests, I can put down the rest of the deposit. If not, I can cancel, without paying the second $250, but would then, have to refund my guests, and I would simply lose the original 1/2 deposit of $250. I'm pretty sure I know twenty people who love me enough to spend $27 to have breakfast with me (and for me). But, can I get the 300 the room holds? Can I even get enough to make a fundraiser actually raise funds? When I know I will not be able to pay my bills for two entire months, is it worth it, to risk my money?
Before I can legally host a fundraiser, I have to incorporate as a non-profit organization (It Seemed So Easy - part 3). I can not ask for any corporate donations (for prizes and such), or free services (photographer, perhaps) until I am a recognized non-profit organization.
I can not have a raffle, because that is considered gaming (gambling). I can have door prizes (which I can solicit, if I incorporate, or must buy, if I don't), so long as nobody pays. If I have to purchase my door prizes, and can not charge for raffle tickets, that eats into the profits I don't even know I will make.
Did you know....? Before I can host a fund raiser, I have to apply for a permit? That is $20 more (on top of deposit, incorporation fee - in part 3, and misc costs).
So, I'm thinking....
I can pay the 1/2 deposit. Send out invitations to friends and family, with the request that they pass the invitation along to their friends. Hopefully, get enough to pay the full deposit and even fill the room. Not knowing, but hoping. I can buy a few door prizes (spending money I don't know I'll make) to sweeten the deal, so to speak, make my fundraiser worth attending. And then, I can ask my guests to make separate donations, based upon their personal financial positions. I can then, use the raised funds to pay all my incorporation costs.
The problems with this plan are these: If I don't become tax exempt first, donations are not tax deductible, which I assume will affect donation amounts. If I don't make enough to incorporate, do I refund the money? How can I ask for money for a specific purpose, and then not use it as such - which by the way, is "misleading" and illegal. What if I don't get enough guests, and basically end out having dinner with twenty of my closest friends and family (well, actually it would have to be thirty to cover my freebie guests), and it is costing them $27 per person to benefit nothing?
So, now I'm thinking....
What am I thinking?!
And so, I thought I would do something beneficial, while I could. My first thought was a public service announcement about metastatic breast cancer (which I WILL do!). Then, I thought, maybe, I could get a full documentary done (apx $100, 000 - so, maybe not). Then, I thought I would host a fund raiser, which morphed into thoughts of a non-profit organization. And, I have spent the last two weeks working toward that goal, sometimes with great hope, and sometimes with great discouragement.
I started with a phone call to a local hotel to see about reserving a room for October 13, 2012. As October 13th is National Metastatic Breast Cancer Remembrance Day, it is the perfect date for the fundraiser. The catering rep gave me a price of $26.28 per person. That means, I must charge $27.00 per person. I'm not sure about the rest of the population, but I do know that I can not afford that. Especially, with a family of five. Well, six, if you count my (almost) son-in law. My older brother can not afford his family of four. My younger brother can not afford his family of four. So, right off the bat, I have to comp something like 10 people at $27.00 each, because, of course, I want my family there.
I have to make a $500 deposit to reserve the date. The rep said she would split that in 1/2 and allow me to pay $250 now, and $250 later. Now, in my case, that involves using money from my last paycheck of the school year (which pays my bills during the summer, until I receive my first paycheck of the next school year, in October). On a yearly basis, my husband must pitch in to pay my "summer" bills, so you can see what a frightening prospect this is.
Now, if I use my summer money to put down $250, and ten paying guests reply to my invitation, I can pay myself back. If I get twenty paying guests, I can put down the rest of the deposit. If not, I can cancel, without paying the second $250, but would then, have to refund my guests, and I would simply lose the original 1/2 deposit of $250. I'm pretty sure I know twenty people who love me enough to spend $27 to have breakfast with me (and for me). But, can I get the 300 the room holds? Can I even get enough to make a fundraiser actually raise funds? When I know I will not be able to pay my bills for two entire months, is it worth it, to risk my money?
Before I can legally host a fundraiser, I have to incorporate as a non-profit organization (It Seemed So Easy - part 3). I can not ask for any corporate donations (for prizes and such), or free services (photographer, perhaps) until I am a recognized non-profit organization.
I can not have a raffle, because that is considered gaming (gambling). I can have door prizes (which I can solicit, if I incorporate, or must buy, if I don't), so long as nobody pays. If I have to purchase my door prizes, and can not charge for raffle tickets, that eats into the profits I don't even know I will make.
Did you know....? Before I can host a fund raiser, I have to apply for a permit? That is $20 more (on top of deposit, incorporation fee - in part 3, and misc costs).
So, I'm thinking....
I can pay the 1/2 deposit. Send out invitations to friends and family, with the request that they pass the invitation along to their friends. Hopefully, get enough to pay the full deposit and even fill the room. Not knowing, but hoping. I can buy a few door prizes (spending money I don't know I'll make) to sweeten the deal, so to speak, make my fundraiser worth attending. And then, I can ask my guests to make separate donations, based upon their personal financial positions. I can then, use the raised funds to pay all my incorporation costs.
The problems with this plan are these: If I don't become tax exempt first, donations are not tax deductible, which I assume will affect donation amounts. If I don't make enough to incorporate, do I refund the money? How can I ask for money for a specific purpose, and then not use it as such - which by the way, is "misleading" and illegal. What if I don't get enough guests, and basically end out having dinner with twenty of my closest friends and family (well, actually it would have to be thirty to cover my freebie guests), and it is costing them $27 per person to benefit nothing?
So, now I'm thinking....
What am I thinking?!
It Seemed So Simple - part 1
What are the things I wish I had money for? Let me list just the few that weigh on me today.
1. Yard Work
Since moving into my (rented) home fourteen years ago, I have been the "keeper of the back yard". I was the one that trimmed the trees & did the weeding. I planted the flowers each Spring, prettied up the patio table for BBQ's, and painted the fence in two different greens...two dark, one light, four dark, two light, staggered like that all across the back of the yard. I used to love my yard. Since 2007, I have been unable to keep up with the back yard. It started with losing the strength of my left arm, after lumpectomy and lymphectomy, followed by mastectomy and six or seven other surgeries related to my cancer. It continued with chemo fatigue and various side effect related pains. And, this summer, sore but feeling ok, I look at my yard and realize that it will never recover from my cancer.
Several trees have grown very large. I truly love them. They give me shade and privacy. But, they need more help than I can provide. They knocked down most of my beautiful green fence years ago, which still lays on the ground, rotting and covered with ivy, which has traveled over from an unknown neighbor's yard, and is in the process of taking over my yard, inch by inch, foot by foot. Believe it or not, the neighbor behind me thinks the ivy has originated with me, and has suggested that I help with clearing out his yard.
One of my trees, is shifting the fence between me and my next door neighbor (who we are very friendly with). My husband and I are trying to figure out how to trim our tree without losing it, dig up some roots (or truly cut the tree down, if needed- and it is very large), AFTER removing two pieces of his fence, which will then need to be replaced. We are trying to "not involve the landlord", because, if he starts spending money on this house, there is the very real possibility he will raise the rent (which we can't afford), or decide to "start fresh", leaving us homeless, because we also can't afford to pay a first and last month and security deposit, for a new place.
My "lawn" is dirt and weeds.
My patio is filled with storage tubs, tvs, and other possessions we took from our cabin two years ago, when we lost it to the economy. We don't eat at the patio table, anymore.
We can neither afford to hire a crew to clean it up, or pay for the several dumpsters it would take to do it ourselves - if I had the strength to trim the tree. If my husband's back would not cripple him for a week, afterward.
2. A Vacuum
It has been apx. four months, since my house has had a good vacuum. And, you can tell. The vacuum cleaners I purchase (always based on the best sale price), tend to last apx. two years, at my house, followed by a vacuum drought, while my husband and I waste money on new bags and belts, thinking it might work "one more time", if we only replace what appears to be the problem. The problem with that is, the bags and belts never seem to be the problem. So, we have been talking about a new vacuum for several, several weeks, while spending our money on school tutors, and summer "required reading" books, and a BOAT project for physics class, and groceries for the child who moved out, and yes, fast food, because sometimes, dinner just does not happen the way I think it will.
The things we don't even have money for, that would come before a vacuum are yearbooks (this is the second year they are not happening at my house), summer clothes shopping for my kids (one who has grown apx. 4" since last summer), more tutors (who said public school was free?).
3. A Vacation.
I'm not talking about the ULTIMATE vacation. Just a long weekend away, at a decent place, with decent things to do. As it is, I can not afford an overnighter at the hotel down the street. I can not afford to rent a motor home. I can not afford a plane ticket - or bus or train - let alone five, so my family can vacation with me. I can not afford tickets to Disneyland, Sea World, Universal Studios. I can not afford gas to drive to those places. I can not afford to get to destinations that are supposed to be "free vacations" I can not even afford to take my whole family to the movies at the same time.
4. A Family Portrait
This may seem like a small item, but after being diagnosed with metastatic disease, all I wanted was a family portrait, so my family would have it once I was "gone". All I wanted was a nice portrait to display, one day, at my funeral.
5. A Bed
We bought our current mattress apx. 12 years ago. At the time, we were told to flip the mattress after three weeks. Those three weeks were the last time my husband slept through night for more than two nights in a row. Because of his bad back, he is up (and in pain) several hours each night. We bought the mattress specifically for that purpose. So, he could sleep. And, he did - for three weeks. Once we flipped it, it was never the same, even when we tried to flip it right back. So, my husband wakes up most nights, and lies there, tense and hurting, and hoping he will be able to fall asleep one more time, before he has to get up in the morning.
6. Health Insurance
Thankfully, my cancer is covered under the BCCPT (Breast and Cervical Cancer Treatment Program), and my children or covered under Medi-Cal. But, my husband has not had insurance, has not had a physical, has not sought help for his back in a decade. Once upon a time, when the cash payer was charged less than the insured patient, he could visit our family doctor for apx. $50. Now, as a cash patient, his last visit was $200! For an initial visit. That is before x-rays, MRI's, or even a prescription for pain meds, none of which he was able to pay for.
There are other things I wish I had money for. Little things. Big things. Things I want, and things I need. But, these are the most pressing things. The things that worry me, that force me to fall asleep with an ipod attached to my ear, so my mind can blank out and let me fall asleep. These are the things that scare me, because when I'm gone, my husband will still not be able to afford most of these things. And, he will be alone.
Why have I listed my financial woes for anyone to read, even though my husband would hate it, if he knew?
Because, I know that other metastatic cancer patients have things they want and need, too. I know they lose their jobs, health insurance (after spending every last dime on COBRA), homes, vehicles. I know they lose their ability to work, run, walk, camp, knit, play the sports they used to love, ride the horses they used to own - some due to finances, others due to illness.
And so, I thought - maybe, I could help. Maybe, I could provide help for others, help with their needs. Maybe, I could send them on a small vacation, buy them a used car, hire someone to clean their house, have a nice dinner delivered to their home, purchase movie tickets to celebrate their cancerversaries, provide a family portrait, or a personal portrait, so they would have a nice picture at their funerals, whatever THEY might need. Maybe, I could help ease their burden for just one day, one evening, one moment.
Which leads to It Seemed So Simple - part 2. And, why I can't.
And, I guess I'll start here by saying - I wish I had money to help. I wish I had money for this....
1. Yard Work
Since moving into my (rented) home fourteen years ago, I have been the "keeper of the back yard". I was the one that trimmed the trees & did the weeding. I planted the flowers each Spring, prettied up the patio table for BBQ's, and painted the fence in two different greens...two dark, one light, four dark, two light, staggered like that all across the back of the yard. I used to love my yard. Since 2007, I have been unable to keep up with the back yard. It started with losing the strength of my left arm, after lumpectomy and lymphectomy, followed by mastectomy and six or seven other surgeries related to my cancer. It continued with chemo fatigue and various side effect related pains. And, this summer, sore but feeling ok, I look at my yard and realize that it will never recover from my cancer.
Several trees have grown very large. I truly love them. They give me shade and privacy. But, they need more help than I can provide. They knocked down most of my beautiful green fence years ago, which still lays on the ground, rotting and covered with ivy, which has traveled over from an unknown neighbor's yard, and is in the process of taking over my yard, inch by inch, foot by foot. Believe it or not, the neighbor behind me thinks the ivy has originated with me, and has suggested that I help with clearing out his yard.
One of my trees, is shifting the fence between me and my next door neighbor (who we are very friendly with). My husband and I are trying to figure out how to trim our tree without losing it, dig up some roots (or truly cut the tree down, if needed- and it is very large), AFTER removing two pieces of his fence, which will then need to be replaced. We are trying to "not involve the landlord", because, if he starts spending money on this house, there is the very real possibility he will raise the rent (which we can't afford), or decide to "start fresh", leaving us homeless, because we also can't afford to pay a first and last month and security deposit, for a new place.
My "lawn" is dirt and weeds.
My patio is filled with storage tubs, tvs, and other possessions we took from our cabin two years ago, when we lost it to the economy. We don't eat at the patio table, anymore.
We can neither afford to hire a crew to clean it up, or pay for the several dumpsters it would take to do it ourselves - if I had the strength to trim the tree. If my husband's back would not cripple him for a week, afterward.
2. A Vacuum
It has been apx. four months, since my house has had a good vacuum. And, you can tell. The vacuum cleaners I purchase (always based on the best sale price), tend to last apx. two years, at my house, followed by a vacuum drought, while my husband and I waste money on new bags and belts, thinking it might work "one more time", if we only replace what appears to be the problem. The problem with that is, the bags and belts never seem to be the problem. So, we have been talking about a new vacuum for several, several weeks, while spending our money on school tutors, and summer "required reading" books, and a BOAT project for physics class, and groceries for the child who moved out, and yes, fast food, because sometimes, dinner just does not happen the way I think it will.
The things we don't even have money for, that would come before a vacuum are yearbooks (this is the second year they are not happening at my house), summer clothes shopping for my kids (one who has grown apx. 4" since last summer), more tutors (who said public school was free?).
3. A Vacation.
I'm not talking about the ULTIMATE vacation. Just a long weekend away, at a decent place, with decent things to do. As it is, I can not afford an overnighter at the hotel down the street. I can not afford to rent a motor home. I can not afford a plane ticket - or bus or train - let alone five, so my family can vacation with me. I can not afford tickets to Disneyland, Sea World, Universal Studios. I can not afford gas to drive to those places. I can not afford to get to destinations that are supposed to be "free vacations" I can not even afford to take my whole family to the movies at the same time.
4. A Family Portrait
This may seem like a small item, but after being diagnosed with metastatic disease, all I wanted was a family portrait, so my family would have it once I was "gone". All I wanted was a nice portrait to display, one day, at my funeral.
5. A Bed
We bought our current mattress apx. 12 years ago. At the time, we were told to flip the mattress after three weeks. Those three weeks were the last time my husband slept through night for more than two nights in a row. Because of his bad back, he is up (and in pain) several hours each night. We bought the mattress specifically for that purpose. So, he could sleep. And, he did - for three weeks. Once we flipped it, it was never the same, even when we tried to flip it right back. So, my husband wakes up most nights, and lies there, tense and hurting, and hoping he will be able to fall asleep one more time, before he has to get up in the morning.
6. Health Insurance
Thankfully, my cancer is covered under the BCCPT (Breast and Cervical Cancer Treatment Program), and my children or covered under Medi-Cal. But, my husband has not had insurance, has not had a physical, has not sought help for his back in a decade. Once upon a time, when the cash payer was charged less than the insured patient, he could visit our family doctor for apx. $50. Now, as a cash patient, his last visit was $200! For an initial visit. That is before x-rays, MRI's, or even a prescription for pain meds, none of which he was able to pay for.
There are other things I wish I had money for. Little things. Big things. Things I want, and things I need. But, these are the most pressing things. The things that worry me, that force me to fall asleep with an ipod attached to my ear, so my mind can blank out and let me fall asleep. These are the things that scare me, because when I'm gone, my husband will still not be able to afford most of these things. And, he will be alone.
Why have I listed my financial woes for anyone to read, even though my husband would hate it, if he knew?
Because, I know that other metastatic cancer patients have things they want and need, too. I know they lose their jobs, health insurance (after spending every last dime on COBRA), homes, vehicles. I know they lose their ability to work, run, walk, camp, knit, play the sports they used to love, ride the horses they used to own - some due to finances, others due to illness.
And so, I thought - maybe, I could help. Maybe, I could provide help for others, help with their needs. Maybe, I could send them on a small vacation, buy them a used car, hire someone to clean their house, have a nice dinner delivered to their home, purchase movie tickets to celebrate their cancerversaries, provide a family portrait, or a personal portrait, so they would have a nice picture at their funerals, whatever THEY might need. Maybe, I could help ease their burden for just one day, one evening, one moment.
Which leads to It Seemed So Simple - part 2. And, why I can't.
And, I guess I'll start here by saying - I wish I had money to help. I wish I had money for this....
Friday, April 20, 2012
Kony 2012
So, my daughter came home several weeks ago, with a Kony 2012 bracelet she bought at school, after an assembly. She told me about Joseph Kony, the rebel soldier in Africa, who abducts children in the night. She told me about a youtube video and asked me to watch it. Because I ran out of time, I never finished the video. Until today, after a student showed up at school, wearing a Kony 2012 t-shirt, and reminded me that knowing who Kony is, is very important. So, I came home and watched the video, beginning to end.
It is truly, one of the saddest stories I have ever heard. And sadder even, than my saddest moments.
We all have causes that are important to us. Pets, Whales, Cancer advocacy, Orphans, the Hungry, the Poor.
I have given to several organizations throughout my life. Not very much money, and not for very long, but enough to believe I was trying to help. I have sent money to a hospital in Jerusalem to sponsor a young girl recovering from an accident, I have sent sent monthly care packages to an entire family in the mid-West, so poor they could barely afford food, let alone clothes, and Christmas presents, and the like. And, I have sponsored a child in Central America. Again, never with too much money and never for very long. Because I, too, have financial difficulty and can't always do all I wish I could, to help others.
It has been a very long time, since I have attempted to even think about financially supporting another cause, but I think this one is important enough to try. You see, this one is for the children, who are also the poor, and the orphaned, and also, the tormented. If you watch the video, you will understand.
Because I am computer illiterate, I will give you the address, http://www.youtube.com/watch?v=Y4MnpzG5Sqc but if that doesn't work, I can only say - go to youtube and type in Kony 2012. Look for the picture of the earth. And, watch it. It's about 1/2 hour.
Now, there are some clips that have titles to cast doubt, and I will acknowledge now, that I haven't watched those. Obviously, if you want to, you should. But, watch the Kony 2012 video, anyway.
Tonight (the 20th), the people behind this movement will be out in force, "spreading their word" and we are supposed to wake up to....well, their message. I believe posters, and placards, and such.
It should be interesting. And hopefully, helpful.
Let me know if you wake up to a message in your area.
*****So, on Sunday 4/22/12, I must admit that I haven't seen anything Kony related in my area. I'm kind of disappointed.
It is truly, one of the saddest stories I have ever heard. And sadder even, than my saddest moments.
We all have causes that are important to us. Pets, Whales, Cancer advocacy, Orphans, the Hungry, the Poor.
I have given to several organizations throughout my life. Not very much money, and not for very long, but enough to believe I was trying to help. I have sent money to a hospital in Jerusalem to sponsor a young girl recovering from an accident, I have sent sent monthly care packages to an entire family in the mid-West, so poor they could barely afford food, let alone clothes, and Christmas presents, and the like. And, I have sponsored a child in Central America. Again, never with too much money and never for very long. Because I, too, have financial difficulty and can't always do all I wish I could, to help others.
It has been a very long time, since I have attempted to even think about financially supporting another cause, but I think this one is important enough to try. You see, this one is for the children, who are also the poor, and the orphaned, and also, the tormented. If you watch the video, you will understand.
Because I am computer illiterate, I will give you the address, http://www.youtube.com/watch?v=Y4MnpzG5Sqc but if that doesn't work, I can only say - go to youtube and type in Kony 2012. Look for the picture of the earth. And, watch it. It's about 1/2 hour.
Now, there are some clips that have titles to cast doubt, and I will acknowledge now, that I haven't watched those. Obviously, if you want to, you should. But, watch the Kony 2012 video, anyway.
Tonight (the 20th), the people behind this movement will be out in force, "spreading their word" and we are supposed to wake up to....well, their message. I believe posters, and placards, and such.
It should be interesting. And hopefully, helpful.
Let me know if you wake up to a message in your area.
*****So, on Sunday 4/22/12, I must admit that I haven't seen anything Kony related in my area. I'm kind of disappointed.
Thursday, April 19, 2012
The Gifts and Curses of knowing your Life Time Line
When you hear you have cancer, you immediately think about death.. When you hear it has spread beyond your breast to your bones, your lungs, your liver, or your brain (mine is lungs), your life becomes consumed with death. You live, waiting to die, and you wait to die for the rest of your life. It is an unsettling place to be mentally and emotionally. There are gifts that come with having this knowledge, and there are certainly curses.
One thing, for sure, is this. No matter what timeline your oncologist gives you (in my case, it was pretty many years), your brain turns it into tomorrow. You think, I am dying. And, for me, I wanted to hide it from everyone, so as not to scare them. But, I also wanted to shout it at everyone, so they would LOVE ME NOW, before I died "tomorrow".
I am a firm believer in, if you don't ask - you'll never know. This sometimes leads me to ask questions that may sound rude and/or hurtful. But, they're not meant to be. They're meant to inform me, and I allow others to ask me those same kinds of questions, as long as they are sincere.
On the way home from my heart echo, requested by my onc(ologist), before I started chemo, I asked my father one of these hurtful questions. You see, between the time of my first diagnosis (and supposed recovery) and my recurrence, my father (and step-mother) watched a very good friend (who had loaned me my bald caps) battle and lose her life to her own stage IV recurrence. Her cancer was a different "strain" than mine (there are many types of breast cancer, all with different characteristics, requiring different protocols, and resulting in different prognoses). She died just weeks before my recurrence, with my father, my step-mother, and her husband gathered by her hospital bedside. I couldn't help thinking about her. I couldn't help thinking I was becoming her. And, I couldn't help thinking what it must be like for my parents to know their daughter was "dying". So, as one of them was standing with me, surrounded by four mirror shiny walls of a hospital elevator, I asked......"Are you ready to sit in a hospital room and watch me die?"
I know. Not such a great question to ask. And, I know I hurt him, but that really wasn't my intention. I just wanted to know what it must be like to feel that. He, of course, said, "No." And, just so you know, I have apologized several times. I have to ask you to remember that I wasn't quite myself, as I was just beginning to deal with my own emotions about being diagnosed with stage IV cancer, and worried about dying "tomorrow".
That was two and a half years ago, and I have had several tomorrows and have several more in my future. My oncologist did give me a rough timeline, and I admit, it is never far from my mind. I am always, always aware of it. I know I could be one of the lucky ones that far exceed their timeline, but I am also aware that I could be one of the unlucky few, whose cancer runs rampant long before their timeline has come to pass. I have chosen to live as if my timeline were accurate, so as not to waste any of it. My hope is to spend my timeline very carefully and receive some bonus years, as opposed to wasting time I think I have, only to lose it in the end. I mean this more in the sense of quality time with those I love, and less in the sense of doing all I can, while I can - think Bucket List - although, that would be nice, too.
So anyway, back to my topic. The gifts and curses of knowing my timeline. My brain is foggy from treatment, so I may not even remember to list everything, but hopefully, you will get an idea of what it's like to know you are dying - even after you realize, it is not actually tomorrow.
I will list the curses first, because why end on a sad note, when I could on a happy one.
I know exactly how much time is passing and how fast and/or slow it is doing so. When I am sleeping (which I do a lot), I know how much time I am wasting, time I could be with my family and/or friends. When I turn down invitations to coffee, lunch, dinner, weekends camping, I know I am denying myself an opportunity to do those things and see those people that constitute part of my bucket list - yes, I do actually have one. And, I know that I may not have the time to try again later, especially as treatment side effects challenge my ability to do those things. I don't really want my time to pass, only to realize I have turned down every opportunity to do those things, and that I have turned down too many offers to spend time with loved ones, because, as I stated earlier, that is my main concern.
My holidays are tinged with sadness. I try to enjoy them, and to a good extent, I do enjoy them. Yet, I am always aware that each particular holiday that passes, is one less of that holiday I have in my future. I also worry about those milestones I may miss - graduations (You never saw a mother cry like I did at my oldest daughter Rachelle's. I mean, I know many mothers cry, but when you think you won't be there, and then you are, I can only say it was extra special). I worry about missing college graduations, ,marriages, grandchildren, empty nesting with my husband. I know there are things I will never get to do - things that maybe, I wouldn't get to do anyway, but that I could, at least strive for, and hope for.
Some say I should LIVE and stop thinking about dying. But, how do I do that, when every day involves a pill, or a blood test, or an IV drip, or a CT scan, or even just a nap. How do I stop thinking about dying when every day, I am either too tired, or too sore, or too wired from my meds, or too queasy, or to scared? How do I not think about cancer (and death), when I know if I make plans to do something today, it means I won't be able to do something else tomorrow - or maybe even the next day?
So, I do actually live, but I must admit, I live like I'm dying. Because I am. It might take a long time, and I've been reassured that it will, but it's always there. Death. Not like the might get hit by a bus kind of death, but an I have something that's trying to kill me kind of death. Which does not mean that I am a frightened, crying, fetal positioned victim 24/7. It just means I am aware.
And, being aware also has its gifts. I know that may be hard to believe, but there really is a silver lining to every dark cloud. Here are some of the gifts.
I have learned how very precious my family is. Yes, we all love our husbands (or wives) and our children. And, I am not saying I love mine more than you do. But, I will say that I am probably more attentive to my family than most. I will gladly turn off the the tv during the most interesting part of the show to listen to my husband or children, if they want to talk to me. Unless of course, I am watching Survivor. Because, hey - we still need to have priorities, right? And what an appropriate name for the only program more important than my children :) But, truly, I do place a high value on every moment with them. Every smile is one more I have been blessed to witness. Every giggle fest we share (and usually, this is where I say something stupid and then laugh so hard, my kids laugh, because I am stupid) is a moment worth FREEZING, like those beautiful scenes that are etched onto little crystal stands. It may sound corny, but these moments - our giggles, our smiles, our hugs and cuddles, have become so very precious to me. I consider myself fortunate to have been given this heart opening knowledge.
I have also learned to NOT WASTE the time I do spend with my family. My husband, my parents, brothers, in-laws (and friends, too). We have all learned to really talk. About the important things, like how much we love each other. I think we are more tolerant and sensitive to each other. I, for one, can forgive a cranky moment, knowing that I am probably the crankiest - and with good reason. So, if someone seems cranky, or tired, or not quite "with me", I am very conscious that there may be good reason for that, just as I do, when I am less than perfect company. I think, those that love me have become very, very tolerant of my own lack of perfection. It makes us all a little more forgiving and a little less upset about "little things". Not that there are a lot of "little things". I'm fortunate that my family are all really close. I'm just saying that small stuff is really even smaller than before.
And.....I have helped a few women come to terms with their own breast cancer diagnoses. It really is quite the experience to help a woman cry her way through her first few days of this frightening disease, just as I cried my way through my initial first few days (well, and quite a few other days, besides).
And, I have met some wonderful women, through web support groups, all struggling with breast cancer, most also stage IV, but some not.
And, on top of that, I have learned what true faith is. I have learned to trust my life to God's plan, whatever that plan is. It's not always easy, that's for sure. But, my faith is always there, helping me to get up and fight one more day, and then one more, and then one more....until, one day, I find that two and a half years have passed, and I am still OK. And, maybe one day, I will find that five years have passed, and then, maybe even ten. But, however many years I get, they will be precious, conscious years, filled with the most important things in life - love, family, friendship, faith, hope.
Two weeks ago, I asked my onc if my cancer was responding the way she expected it to. She smiled at me and said, "Oh, way better"! So, for now, at least, I am going to stop counting my days and just enjoy the fact that I have them. Now, how could I be so happy about a having a day? That is the mystery of the gift that comes with tragedy. That is the sliver lining in the dark cloud.
One thing, for sure, is this. No matter what timeline your oncologist gives you (in my case, it was pretty many years), your brain turns it into tomorrow. You think, I am dying. And, for me, I wanted to hide it from everyone, so as not to scare them. But, I also wanted to shout it at everyone, so they would LOVE ME NOW, before I died "tomorrow".
I am a firm believer in, if you don't ask - you'll never know. This sometimes leads me to ask questions that may sound rude and/or hurtful. But, they're not meant to be. They're meant to inform me, and I allow others to ask me those same kinds of questions, as long as they are sincere.
On the way home from my heart echo, requested by my onc(ologist), before I started chemo, I asked my father one of these hurtful questions. You see, between the time of my first diagnosis (and supposed recovery) and my recurrence, my father (and step-mother) watched a very good friend (who had loaned me my bald caps) battle and lose her life to her own stage IV recurrence. Her cancer was a different "strain" than mine (there are many types of breast cancer, all with different characteristics, requiring different protocols, and resulting in different prognoses). She died just weeks before my recurrence, with my father, my step-mother, and her husband gathered by her hospital bedside. I couldn't help thinking about her. I couldn't help thinking I was becoming her. And, I couldn't help thinking what it must be like for my parents to know their daughter was "dying". So, as one of them was standing with me, surrounded by four mirror shiny walls of a hospital elevator, I asked......"Are you ready to sit in a hospital room and watch me die?"
I know. Not such a great question to ask. And, I know I hurt him, but that really wasn't my intention. I just wanted to know what it must be like to feel that. He, of course, said, "No." And, just so you know, I have apologized several times. I have to ask you to remember that I wasn't quite myself, as I was just beginning to deal with my own emotions about being diagnosed with stage IV cancer, and worried about dying "tomorrow".
That was two and a half years ago, and I have had several tomorrows and have several more in my future. My oncologist did give me a rough timeline, and I admit, it is never far from my mind. I am always, always aware of it. I know I could be one of the lucky ones that far exceed their timeline, but I am also aware that I could be one of the unlucky few, whose cancer runs rampant long before their timeline has come to pass. I have chosen to live as if my timeline were accurate, so as not to waste any of it. My hope is to spend my timeline very carefully and receive some bonus years, as opposed to wasting time I think I have, only to lose it in the end. I mean this more in the sense of quality time with those I love, and less in the sense of doing all I can, while I can - think Bucket List - although, that would be nice, too.
So anyway, back to my topic. The gifts and curses of knowing my timeline. My brain is foggy from treatment, so I may not even remember to list everything, but hopefully, you will get an idea of what it's like to know you are dying - even after you realize, it is not actually tomorrow.
I will list the curses first, because why end on a sad note, when I could on a happy one.
I know exactly how much time is passing and how fast and/or slow it is doing so. When I am sleeping (which I do a lot), I know how much time I am wasting, time I could be with my family and/or friends. When I turn down invitations to coffee, lunch, dinner, weekends camping, I know I am denying myself an opportunity to do those things and see those people that constitute part of my bucket list - yes, I do actually have one. And, I know that I may not have the time to try again later, especially as treatment side effects challenge my ability to do those things. I don't really want my time to pass, only to realize I have turned down every opportunity to do those things, and that I have turned down too many offers to spend time with loved ones, because, as I stated earlier, that is my main concern.
My holidays are tinged with sadness. I try to enjoy them, and to a good extent, I do enjoy them. Yet, I am always aware that each particular holiday that passes, is one less of that holiday I have in my future. I also worry about those milestones I may miss - graduations (You never saw a mother cry like I did at my oldest daughter Rachelle's. I mean, I know many mothers cry, but when you think you won't be there, and then you are, I can only say it was extra special). I worry about missing college graduations, ,marriages, grandchildren, empty nesting with my husband. I know there are things I will never get to do - things that maybe, I wouldn't get to do anyway, but that I could, at least strive for, and hope for.
Some say I should LIVE and stop thinking about dying. But, how do I do that, when every day involves a pill, or a blood test, or an IV drip, or a CT scan, or even just a nap. How do I stop thinking about dying when every day, I am either too tired, or too sore, or too wired from my meds, or too queasy, or to scared? How do I not think about cancer (and death), when I know if I make plans to do something today, it means I won't be able to do something else tomorrow - or maybe even the next day?
So, I do actually live, but I must admit, I live like I'm dying. Because I am. It might take a long time, and I've been reassured that it will, but it's always there. Death. Not like the might get hit by a bus kind of death, but an I have something that's trying to kill me kind of death. Which does not mean that I am a frightened, crying, fetal positioned victim 24/7. It just means I am aware.
And, being aware also has its gifts. I know that may be hard to believe, but there really is a silver lining to every dark cloud. Here are some of the gifts.
I have learned how very precious my family is. Yes, we all love our husbands (or wives) and our children. And, I am not saying I love mine more than you do. But, I will say that I am probably more attentive to my family than most. I will gladly turn off the the tv during the most interesting part of the show to listen to my husband or children, if they want to talk to me. Unless of course, I am watching Survivor. Because, hey - we still need to have priorities, right? And what an appropriate name for the only program more important than my children :) But, truly, I do place a high value on every moment with them. Every smile is one more I have been blessed to witness. Every giggle fest we share (and usually, this is where I say something stupid and then laugh so hard, my kids laugh, because I am stupid) is a moment worth FREEZING, like those beautiful scenes that are etched onto little crystal stands. It may sound corny, but these moments - our giggles, our smiles, our hugs and cuddles, have become so very precious to me. I consider myself fortunate to have been given this heart opening knowledge.
I have also learned to NOT WASTE the time I do spend with my family. My husband, my parents, brothers, in-laws (and friends, too). We have all learned to really talk. About the important things, like how much we love each other. I think we are more tolerant and sensitive to each other. I, for one, can forgive a cranky moment, knowing that I am probably the crankiest - and with good reason. So, if someone seems cranky, or tired, or not quite "with me", I am very conscious that there may be good reason for that, just as I do, when I am less than perfect company. I think, those that love me have become very, very tolerant of my own lack of perfection. It makes us all a little more forgiving and a little less upset about "little things". Not that there are a lot of "little things". I'm fortunate that my family are all really close. I'm just saying that small stuff is really even smaller than before.
And.....I have helped a few women come to terms with their own breast cancer diagnoses. It really is quite the experience to help a woman cry her way through her first few days of this frightening disease, just as I cried my way through my initial first few days (well, and quite a few other days, besides).
And, I have met some wonderful women, through web support groups, all struggling with breast cancer, most also stage IV, but some not.
And, on top of that, I have learned what true faith is. I have learned to trust my life to God's plan, whatever that plan is. It's not always easy, that's for sure. But, my faith is always there, helping me to get up and fight one more day, and then one more, and then one more....until, one day, I find that two and a half years have passed, and I am still OK. And, maybe one day, I will find that five years have passed, and then, maybe even ten. But, however many years I get, they will be precious, conscious years, filled with the most important things in life - love, family, friendship, faith, hope.
Two weeks ago, I asked my onc if my cancer was responding the way she expected it to. She smiled at me and said, "Oh, way better"! So, for now, at least, I am going to stop counting my days and just enjoy the fact that I have them. Now, how could I be so happy about a having a day? That is the mystery of the gift that comes with tragedy. That is the sliver lining in the dark cloud.
Tuesday, April 17, 2012
First Entry - What Am I Doing Here?
Although this is a big question, in the sense that we all wonder why we have been born - in this place, at this time - today, the question is really as simple as, what am I doing here, today, starting this blog, when I am computer illiterate, make too many typos to fix, and probably don't have as much to say as I think I do. At least, maybe nothing so important that it needs to be blogged.
I suppose, it is for my own ramblings. A place that can act as my journal, both for prayer and for contemplation. A place where I can write down my thoughts and not lose them in the piles of clutter that is my home. And a place where those thoughts won't get just as lost at this website or that website, because I have forgotten yet another password. In fact, I am already having a hard time remembering the password I just made up for this blog site (as well as the name I finally chose, after being denied my first 15 choices). Hopefully, that will all show up after I save this entry.
My main goals here, the things I will probably most focus on, are three-
1- I am struggling with how best to worship God in a manner that pleases Him. I know there are many people who don't believe in God, and many who do but have not given their hearts to Him. If any of those people ever visit, I just ask that they not belittle my love for God and find, silly, the struggles that I surely will be posting here. I am passionately Catholic, which makes me passionately Christian. I will probably write some entries that will make you question that. For, I am truly a sinner - hence the struggles.
2- I am fighting a daily battle for my life. Actually, I just remembered the name of this blog site - OwnMyLife45 (?) But, you see - I don't totally own it. Cancer has taken lease of my body. Has become a squatter, claiming residency. I, the landlord, do my best to evict cancer and keep it from claiming more territory than it already has. Sometimes, I am a true warrior, as those with a life threatening illness are wont to be. Sometimes, I am a wounded soldier, with little strength to fight or even, to cope. And, sometimes, I am not even a soldier. I am far from ready to give up, but I have my days, where a break in the action is almost worth the loss of ground. My body has become enemy territory. I know I am fluctuating between visions of losing my home - which is my body, and losing a war, and they may not completely fit together, except that the war is within my body. I suppose I will never make a great writer, as I can not even stick to one analogy at a time. I will probably post many entries about my cancer, for that is one topic that is always on my mind.
3- I am hoping to learn how to love my family with a truly selfless love. I am not doing so great, at the moment. I am trying to let them be who they are, yet form them into who I expect them to be. I'm sure, as long as time has existed, mothers and fathers have faced this dilemma. Especially, as my life span is slightly shortened, I wish to bring my family together, close, as a mother hen gathers her chicks, even as my children come closer to flying the nest - leaving it empty, which I crave, and which I fear.
So, I will come here sometimes, hoping to collect my thoughts and feelings. Hoping to tell God the truth about my inability to love Him, myself, my family, my neighbor. Hoping to help others understand what cancer does to me physically, and mentally, and emotionally, and even financially.
Some entries will be perfect. Proof read and fixed several times over, and some will be so full of typos, so as to be nearly unreadable. It all depends on the day. So, here goes.
What am I doing here? Maybe I am owning my life - if just for today.
PS- I am 45 years old.
I suppose, it is for my own ramblings. A place that can act as my journal, both for prayer and for contemplation. A place where I can write down my thoughts and not lose them in the piles of clutter that is my home. And a place where those thoughts won't get just as lost at this website or that website, because I have forgotten yet another password. In fact, I am already having a hard time remembering the password I just made up for this blog site (as well as the name I finally chose, after being denied my first 15 choices). Hopefully, that will all show up after I save this entry.
My main goals here, the things I will probably most focus on, are three-
1- I am struggling with how best to worship God in a manner that pleases Him. I know there are many people who don't believe in God, and many who do but have not given their hearts to Him. If any of those people ever visit, I just ask that they not belittle my love for God and find, silly, the struggles that I surely will be posting here. I am passionately Catholic, which makes me passionately Christian. I will probably write some entries that will make you question that. For, I am truly a sinner - hence the struggles.
2- I am fighting a daily battle for my life. Actually, I just remembered the name of this blog site - OwnMyLife45 (?) But, you see - I don't totally own it. Cancer has taken lease of my body. Has become a squatter, claiming residency. I, the landlord, do my best to evict cancer and keep it from claiming more territory than it already has. Sometimes, I am a true warrior, as those with a life threatening illness are wont to be. Sometimes, I am a wounded soldier, with little strength to fight or even, to cope. And, sometimes, I am not even a soldier. I am far from ready to give up, but I have my days, where a break in the action is almost worth the loss of ground. My body has become enemy territory. I know I am fluctuating between visions of losing my home - which is my body, and losing a war, and they may not completely fit together, except that the war is within my body. I suppose I will never make a great writer, as I can not even stick to one analogy at a time. I will probably post many entries about my cancer, for that is one topic that is always on my mind.
3- I am hoping to learn how to love my family with a truly selfless love. I am not doing so great, at the moment. I am trying to let them be who they are, yet form them into who I expect them to be. I'm sure, as long as time has existed, mothers and fathers have faced this dilemma. Especially, as my life span is slightly shortened, I wish to bring my family together, close, as a mother hen gathers her chicks, even as my children come closer to flying the nest - leaving it empty, which I crave, and which I fear.
So, I will come here sometimes, hoping to collect my thoughts and feelings. Hoping to tell God the truth about my inability to love Him, myself, my family, my neighbor. Hoping to help others understand what cancer does to me physically, and mentally, and emotionally, and even financially.
Some entries will be perfect. Proof read and fixed several times over, and some will be so full of typos, so as to be nearly unreadable. It all depends on the day. So, here goes.
What am I doing here? Maybe I am owning my life - if just for today.
PS- I am 45 years old.
Subscribe to:
Posts (Atom)