WHAT I AM THANKFUL FOR
I have learned the hard way that I must also care for myself. I get up early and take quiet time to meditate, gather my thoughts, find what I am thankful for and tend to my personal matters before my day of caring really starts. Barry Pollack
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A FRIENDLY VOICE
My friends and family come from the same world of strong, independent people as I do. We all like to fix things – make the world better… know and control our destinies… yet, what I needed the most was not to be fixed – for no one really knows how to fix Chronic Fatigue Syndrome – I needed caring… compassion. A call, a note, an email, a friendly voice – something to bring the world to me since I no longer could go out and see it myself. anonymous
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WHY IS IT
Why is it that the people who need the most (and I am not talking only about people with disabilities) and deserve the most – are the ones who are seemingly never going to get the full assistance they need. Kelly
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MORE THAN PHYSICAL NEEDS
Do not mistake “caring” for the details and refinements of seeing to someone’s physical needs. This form of “caring” has its place and its value, but cannot be considered superior to caring. anonymous
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ANY HELP THEY COULD
They could’ve ignored me as not their problem and gone about their days uninterrupted. In a lot of other places, they might have. But instead they all got together and took me out for coffee. Then they listened to my problem and offered any help they could. Andrhia
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LEARNING TO DEPEND ON OTHERS
The physical aspect of care taking is very very hard. We learn to depend on each other for support and help because we are all that we have. d_j_foote
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PLANNING THE FUTURE
I think a big challenge for all of us is going to be taking care of our parents… I just don’t see a lot of talk from people of my age (late twenties) about planning for the future of our parents. Moz
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HONORING OUR VETS
How many times do we have to talk about honoring the “sacrifice” of our veterans and totally ignore that now he lives an alternate path trying to just get around town in a wheelchair –people look past him or through him, not at him… how’s that for honor?!! Phyllis
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CARED FOR, CARING
…I’m still not sure (eleven years later, from an 18-year-old’s perspective on her 7-year-old self) who was caring for whom. Abigail for me, or me for Abigail. anonymous
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IN THE MIDST OF LIFE
It was our most friendly nurse who was bucked off her horse & landed on her head, breaking her back in two places which was repaired in a surgery & she went home, but complications followed wherein a clot caused a brain shutdown & gone she was. anonymous
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WHEN HELP COMES BACK HOME
Even though we’d help each other move, lend movies to temporary shut-ins, fix meals for those whose lives were in disorder, lend an ear or a car, I never thought of it as building a community or a neighborhood until I had the need of one. Raven
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A TON OF WHYS
I am a mother of a child with severe cerebral palsy. Caring for my son is the greatest joy and heartache I have ever known. After my son was born, I struggled with a ton of whys. The answer was because you can make a difference in his life and he will make a positive impact on your life. Lisa Grieg
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BLESSINGS
Our special needs children are our “blessings” in disguise, it is just too bad the rest of the world isn’t able to see it that way most times. Patti Johnson
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MAINSTREAMING
My parents made sure that I was “mainstreamed” with non disabled students in Francis Lewis High School… I had very limited social interaction with non disabled students. I hope that Deepwell has both non disabled and disabled citizens and that they may be able to meet and get to know each other. Charles W.
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COLLABORATING ON CARE
I have a lot of guilt of not being there for my mother. I am thinking of starting a blog for others like me so we can all get together to help out our parents. Frieda DSouza
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THE CONTRAST
I couldn’t help but think back to my youth and a visit to the nursing home in the 1960s. I was but twelve years old and went with my mother to visit my great aunt, Mamie. When I think of her dark, cramped living space and contrast it with the modern facility I had just visited, I have great hope for the future of caring. Nellie
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OPPORTUNITY TO CARE
Towards the end my grandmother opted for home hospice. I had the opportunity to assist the home care nurses and be with her through the end. I miss her so much but I’m glad that her hurting is over. wwb
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HOLDING THEM ACCOUNTABLE
I know teachers who want to be the kids’ friends, but that’s not what they need. They need adults who care enough to hold them accountable for their own learning, and laugh with them, and check in with them when they’ve been out sick. Annaliese Werner Thomas
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SO MANY WONDERFUL PEOPLE
On each step of our journey, we have encountered so many wonderful, caring people. Yes, we have a son with cerebral palsy and someday Jordan might actually care that he walks different from his peers. But right now, his biggest concern is finding his Polar Express CD. Christa Knaak
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LEARN TO ACCEPT HELP
I have learned how important it is to try to not be the “superman” of caregiving by doing it all myself. Learn to accept help, ask for help and allow others in our circles to be a part of our lives where we have needs. Barry Pollack
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WILL IT GET WORSE
I wish people around me would care more. I don’t think it’ll get easier at all this year. In fact, I think it’ll get worse. Clementine
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POEM
we r all lonely and we pretend we r not
and then we spread that dull lonliness
we need to come together we need to become a strong unit
and save this world
coma
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WHY NOT?
Wouldn’t it be great to have a community of special needs people of all abilities come together to care for each other with the guidance of professionals… A place where whatever you want or whatever you want to do is normal for you. A safe environment where the questions asked are always answered with “and why not.” Carol
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SOMEONE WHO WASN’T EASY TO LIVE WITH
Both my wife and I grew up with grandparents in our home, and his presence offered my children the same experience — the chance to live with another generation, someone who wasn’t easy to live with all the time. He helped my children become more generous, loving people… Living with someone so close to death reminded me to make the most of my time here and now and made me appreciate my family even more. ptotah
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CARING WORKS
I have a personal philosophy: If you can do something to improve the mood of everyone you meet, even in the tiniest ways, it’s the most amazing thing in the world. When people are using to having others blow up in their faces for the smallest infractions, a little kindness goes a long way. Nos
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COLLABORATIVE DO-GOODING
Trivers’ theory of reciprocal altruism suggests that acts of kindness (in a biological and genetic sense) that don’t immediately benefit or may even endanger the organism that performs them are explained by the animal’s implicit sense of the mutual symbiosis within the group… This kind of collaborative do-gooding in nature is seen a lot on the internet in things like file sharing, open sourcing and in some ways, is the future of caring communities everywhere. Nina Steiger
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ENABLING
That’s the thing sometimes about caring. It is not all the time so easy to know whom to pick. Sometimes doing caring things can actually be called ‘enabling’ helplessness. I think you have to stick with what your intuition tells you, but be ready to listen to other input just in case. anonymous
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ALLOWING THE GIVER TO GIVE
I once read that receiving is the highest form of love because it is through receiving that we allow the giver to give. This idea is contrary to what we’re usually taught (it’s better to give than to receive), but I think it’s very powerful because it equalizes the equation. I think if all of us can shift our thinking in this way it would remove the barrier to asking for help. Tresbien
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COMMUNITY LIGHTENS THE LOAD
We all know little things can make a big difference. Kind words. Hugs from dozens of students on his last day of work. A facebook page started to alert former students across the nation. An offer of food for the family… We show that we care in big and little ways. We all know someone facing the hardship of illness. As a community, we can lighten the load of the battle. Marnie
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REDOUBLING THE CARE
For my cousin, the act of taking in the dog was a clear-cut drain in practical ways but the chihuahua has reciprocated in spades, redoubling the kindness and care in quite a profound way. Nina Steiger
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COMPASSION, NOT FIXING
My sister had the courage to face me – to just listen – almost every day for over four years. It wasn’t easy at first – we had to figure out how to just be with each other instead of trying to fix each other. We are such close friends now. Wonderful conversations for hours on the phone – sharing life. Compassion. Not fixing. anonymous
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NOT FEELING SAFE
It’s a thought beyond my own community. I do know that most people never touch on what I believe to be the biggest problem in elderly care and that is the fear of the elderly not feeling safe. Nursing homes and elderly care has such a profound stigma that I believe this subject can be a project of its own. iguanapool
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WHEN RESOURCES ARE SCARCE
Although most Westerners tend to think witch hunts exist out of strange superstitions, “Economic Gangsters” showed the connection between poverty and witch hunts… How do you cope with providing care for the elderly, or non-productive members of society, when the society doesn’t have resources for the most basic needs? How might we provide insurance for the “non-productive members” of society? yolanda
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FEELING USELESS
To find out at a young age that one has this chronic, potentially deathly, incurable disease might make one feel useless… I lost my job last year because they found out I have Lupus, and they were annoyed that I hadn’t told them about it when I applied for the job… how will I ever find work if I have to tell them I have Lupus? I can work to some extent! Just not full-time. I want to work. H2Ohexagon
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THE BROAD VIEW
There are times we have to take a very broad view. The trick is to do so from a stance of deep concern rather than laziness or callousness. anonymous
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UNPREPARED?
I grew up with both sets of my grandparents in the house. It’s amazing how much fun it was and how terrible I felt when they all passed. My cousins, on the other hand, never had the opportunity to watch their parents, my aunts and uncles, take care of our grandparents. I gotta say, I just don’t see them prepared to take care of their own parents in the future. Moz
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CARE LIKE CLOCKWORK
Two weeks later, when I was about to have my next round of chemo, I was surprised to find a long box on my doorstep. It was more fresh flowers! My friend had sent them! And for the next few months, like clockwork, she made sure that I had beautiful flowers to brighten my living room while I recovered from my chemo sessions. VDistler
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NO IDEA
He told me how foolish I was being that there was no way I could take care of my husband. I told him: “You have no idea of what I can do. You don’t know me and you don’t know my husband. I will tell you one thing: my husband is going to live. He will recover from this.” And with that message delivered I stomped off. anonymous
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MY HOPE FOR DEEPWELL
I was born Sept 2, 1955… 2 months premature. My mother was a nurse. My father was a bus driver for the MTA. Despite this, they raised 3 sons… My mother dressed me for school including putting on metal leg braces. They shared in what they could do in exercising my body. I hope that Deepwell in 2010 will have physical therapists visit homes or apartments to observe, supervise, and advise on how to do it properly. Charles W.
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AT THE LIBRARY
Spend some time at the library. Lots of people who are shy about joining groups, or reluctant to accept charity, make use of the free resources there. Sit, read a newspaper, *talk to people*. There are all sorts of people in your town you might never meet otherwise. Carlanime
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LITTLE GESTURES
Grow extra vegetables in your garden, and hand them across the fence to a neighbour, or bake an extra pie for someone down the street. Sometimes little gestures say “I’m glad you’re here” better than words can. Carlanime
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AFTER THE BAND PLAYS
My brother served this country for years and I can’t believe what he got for it. Honestly, it’s like there’s a hero’s welcome when you first get home and then when it comes to the follow-up there is zero execution of caring for vets like him… Our first priority should be caring for those who protect us and our way of life. I’m sure there are veterans in Deepwell… what are YOU doing about it? Don’t forget them. Honestly… that just not the way it should be. Phyllis
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THE GAP IN BETWEEN
I wrote to our congressman & senator to see if there was someway to help & what they said was there isn’t any program for the age range of 18-60….. you have Children & Youth services to 18 & then you have the County that protects aging people if there is a problem, but for the people in-between there isn’t anything! I couldn’t believe it. Patti Johnson
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DOMINO EFFECT
It is imperative that things change or we will be facing an immensely daunting task – a domino effect of the largest scale– and a hole that we are not going to be able to crawl out of. Kelly
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WE HAVE SO MUCH
The help out there is so very limited for a country that has so so much. d_j_foote
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TIME FOR OTHERS
My husband is disabled and I am the breadwinner in the family. It makes it hard to make needs meet in this economy. I care for him, but I wish I had time to care for others or donate money to good causes. Jennifer
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ACKNOWLEDGING THE PAIN
It takes courage to call. It takes courage to give. It is hard to be with people who are going through a difficult time… What do I say? What do I do? For me it was as simple as someone acknowledging the pain – not trying to make it go away… not trying to fix it. anonymous
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TRUE GIFT
I’m thankful for the caring and nurturing I get today and hope that it lasts forever. To be cared for is truly a gift, a gift everyone deserves. Jonathan Waite
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THE MAGIC OF COMMUNITY
That small act — that invitation to coffee, and the caring that was behind it — made all the difference in the world to me. That’s the special magic that takes a place where you live and transforms it into a community. Andrhia
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SOMETHING YOU CAN DO
My advice to the people of Deepwell is: even if you need help in some areas of your life yourself, I’m sure that there is still something you can do for someone else. This will make you feel more like a part of the community and not feel ashamed to ask for help in your turn. H2Ohexagon
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THE STUFF OF GLOBAL CHANGE
As you assist by listening to others there is an energy that manifests that is far greater than any one individual’s – and this is the stuff of global change. Marti
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