I’m experiencing my first Spring in Western New York.
More than being a lovely season, it’s been an honest time of “firsts” for me. One such realization came not too long ago… Continue reading
I’m experiencing my first Spring in Western New York.
More than being a lovely season, it’s been an honest time of “firsts” for me. One such realization came not too long ago… Continue reading
Howdy Readers, Friends, Loved Ones.
Much like the President and his State of The Union, I feel like coming here and posting a big ole update about my health and where it stands is something I like to do, and I do on a sorta regular basis. I mean, it’s totally as legit at the State of the Union, right?
I mention my health in passing, and for the sake of advocacy, understanding, and information – I like to be an open book. It’s been more than eight years since my battle against Stage III Lymphoma played out publicly in college – but my own health issues and ordeals are not over. In going through all of that in front of so many others, I realized that by being open, I was helping others. So many people who’ve dealt with cancer have reached out to me, and I’ve helped how and where I can. Yes, it’s in small and tiny ways, but good ways nonetheless. So, when I can… I’ve been able to offer compassion, support, empathy, and love. And now with my sweet ole blood disease, I am just doing what I know how to do: be a blabbermouth, and if anyone needs help, I’ll do my best.
I have porphyria.
It’s a blood disease. It’s genetic. There’s no cure, and you have it forever.
It’s complicated, weird, hard to explain, hard to understand – yes, it’s all of these things… but, it’s manageable.
By far the biggest, best, and most amazing breakthrough in my life as a person with acute porphyria was the DNA test I had done in Hawaii. I know the exact mutation in my genetic code that causes the blood disease I have. And if you think you’re special – allow me to trump you. I am, to date, THE ONLY person to have ever been tested with this exact mutation. Talk about ONE OF A KIND!
Now. I know I’m not really all that unique. The likelihood that members of my family share this specific mutation is very high. We are likely a one-of-a-kind porphyria family. And given how genetic diseases and mutations work, well it’s not really that fancy.
So… onto the good stuff:
HOW AM I DOING?
I’m okay. I’ve had some attacks lately. Triggers-and-attacks is the cycle of my disease, with lovely periods of calm remission in between. Triggers for me include stress, illness, medications of certain kinds, alcohol, preservatives, lack of sleep, and more. Around the holidays I was eating tons of processed meat and cheeses, which I love, but which are oh so bad for me. Add to that the ole Santa Pub Crawl I couldn’t miss out on, and a lot of travel and staying up late, and well – I created my own little perfect storm, didn’t I?
I did. I made some bad choices… and I payed up for it. I felt pretty crummy for a good chunk of December. I modified my behavior though, because I love my body and want to give myself the best shot possible. Even though some choices seem tough in the moment, in the long run they’re important.
After a while of clean living and good choices, I seemed to have really pulled out of things.
I am feeling better now. At last month’s visit to my docs, we adjusted my meds. I am now happily on a new form of medication that I get through a patch. Isn’t technology rad? Since porphyria affects my liver and its enzymes and red blood cell production, getting meds into my body without bothering my liver is excellent. Yesterday I went back again, and we tweaked the doses a bit, so once those get filled and I regulate out… I’m hoping my day-to-day will be even better. It’s really nice to be on meds that don’t have so many long-term effects on me and side effects, etc.
I’m seeing a couple new doctors, too – and they are really wonderful and very committed to helping me get the treatment I need, when I need it. I’ve just recently opened up the lines of communication with my local in-town doctor, so the next time an attack happens – I can get into a hospital nearby and get the IV treatments that help me stop an early attack in its tracks. And now the meds I need, should a serious attack occur, will be known and available (in Hawaii, this was pretty serious – they didn’t have ANY of these meds on the island before I got there… eeks!).
Coming from the military system to civilian world of medical care has been… well, halting. The expense of my meds alone was enough to crank up my stress to attack-inducing levels. Finding the right meds, that my insurance will cover, has been a task. It was pretty crazy there for a little while, but things are looking up for me now. It’s also been hard to piece together a communicative team of experts. In the military system, all my docs could see each other’s notes, save for my primary care – they were all in the same building. So the convenience factor has shifted a bit, it’s been a learning process, but it’s getting there. I am happy with the team I have now, and I trust their expertise and compassion – very much so.
Otherwise, nothing really new or crazy or wild to report.
I’m still me. I’m still human. I try and live life just as me, weirdo wacky Rose… and not as a person afraid to experience life and deal with the affects on my body. It’s a balance though. And in every attack I experience, I wise up about my triggers and the lifestyle choices I need to, and should, make to avoid bringing issues upon myself.
So, there you go.
I still have Porphyria. It’s not going anywhere! But, everyday I think I get a little better at navigating what it means for me and coping with it all. And umm, I’ll give a shout-out to my handsome life partner, Duggs (my husband) because he’s been an awesome man to have by my side through all of it. My whole family is very supportive, and once again – I find myself feeling very blessed to have access to competent medical care.
Thanks for reading! And thanks for following along the wacky and weird and up-and-down journey that is my health.
HHR – Happy Hippie Rose
PS: Just because I share what I go through, please don’t think that my porphyria is all I am or all that I focus on. I’m a real, breathing, dynamic person. And since my health is something people who know me worry about… and by being open and posting about it publicly I can help add to the available points of view out there on porphyria (since there aren’t many), reducing stigmas and encouraging others to talk about it, learn more, and so on… I do tend to mention it more often online than I probably do in real life. But it’s just like anything that’s in a persons focus – real, but only one part of a whole, multifaceted life.
Disclaimer: So I drafted this one a while ago. And because of all the gun-related drama that’s been going on, I’ve been a little shy of publishing. Is that lame? Maybe. But after careful thought and consideration, I’m okay with posting this and being who I am. So, take it or leave it. If you’d like to read about the philosophy of a self-titled “hippie hunter,” well then, read on. And if you want to hear more about me twiddling my thumbs, read this. Now, without further ado…
I Killed A Deer, And I Liked It.
Yes, I went hunting this past fall. And yes, I killed a deer. And when I killed the deer, I liked it.
I was proud of myself (still am), and I was – for lack of a better word – happy about it. And well, if you happen to know about some of my personal beliefs on animal testing, captivity, factory farming and how much I LOVE animals in general… this new hobby of mine probably seems a bit on the conflict-of-interest side. But hear me out, I can explain… Continue reading
So. I know I’ve been silent for a while. A long while.
I drafted a post months ago… in early December, actually. It’s well-written, it contains a message, and it’s very very me. But I have not pressed publish. Why? Well, lots of reasons. I was sick for a while in December, porphyria attack. And then again in January with the flu… the remnants of which seem to not want to truly leave me be.
Work. The Holidays. We’re buying a house.
Reasons… kinda, but really they’ve become my excuses. These are excuses.
You see, this post I wanted to share was about hunting season. It’s drafted title is, in fact, I killed a Deer and I liked It. (get it?)
You’d have to be living under a rock to not be in the midst of the gun-control melodrama that’s taken over our collective conscience lately. The issues, outcries, politicizing, rallying, fear-mongering, paranoia, anger, and all the rest of it have just been a lot to deal with. As a responsible gun owner, a legally licensed hunter and skilled shooting enthusiast – am I ready for what could happen if I publicly declare that I am okay with guns? I wasn’t sure.
I’m still not totally sure about how to deal with any potential fallout that could occur. And I know that’s likely. I have friends and loved ones deeply entrenched on both sides of every proverbial line in the sand. And while I’m pretty durn open and honest about who I am, and what I believe. (I mean, my Fb has plenty of pics of me holding and shooting guns… and not just hunting guns, but handguns, and yes – even an AR-15).
In the online blogging silence that ensued, my own internal voice grew stronger. I do know who I am, and I love who I am.
And I, take it or leave it, am a gal with a gun. I killed a deer, and I liked it. I am not irreverent, malicious, cruel or casual in my approach to hunting, killing an animal, taking the meat from his body, and preparing it to be my own food. In fact, I’m in awe of such power; I’m full of respect and admiration for the processes of life and the insight unto them that I have gained when looking down the barrel of a gun and feeling my finger on the trigger.
This is NOT a battlecry for gun rights. This is NOT about Newtown or the CIA or our gun laws.
This is just a blog about me. And at times, I am a hunter. A happy hippie hunter. Don’t think it’s possible? Give my post a read and hear me out.
I’m pushing publish on it now. I’m ready to be okay being me.
I’m not really sure how to even explain this – but I’ll give it a shot.
I’m kind of ambidextrous. It’s just a weird quirk I’ve had all my life. I surf and skate goofy footed, and start in a track position the way a left-handed person would. I can paint, shave and do makeup as easily with my left hand as I can with my right. Without thinking, I usually just use whichever hand is closer by for performing rudimentary tasks.
The biggest point of differentiation is my handwriting though. While I can chicken scratch legibly with the left, I almost exclusively write with my right hand. Personally, I believe that I could have been a left-handed writer, but just chose the right out of ease and conformity when learning. And for years and years, it’s not better practiced.
Sometimes, I get into these weird phases where I practice my left-hand writing.
I think it’s probably some facet of my OCD, or maybe just some weird tangent of my mind… but I get really into it. So lately, when I watch TV in the evening, I’ve been doing sudoku puzzles exclusively using my left hand to write the numbers. And then in the margins I’ve been practicing some writing. In my defense – I’ve been feeling crummy lately, having a bit of a porphyria flare, so I haven’t really felt up to doing a whole lot.
Anyways. The left hand stuff, is amazing and well, REALLY FUNNY.
It looks like a second grader’s sudoku book, with rough messages saying “Merry Christmas” and my name. It actually cracks me up.
Out of boredom writing the same things over and over again, and wanting to practice every letter – I naturally began using the ole “the quick brown fox jumps over the lazy dog.”
I’m sure you’re familiar with it. It’s a succinct sentence that uses every letter of the alphabet. It’s an easy way to display a font or style of writing so you can see an example of every letter. After scrawling it out a few times, I got bored with it.
So here’s where things get weird…
I started trying to write my own every-letter sentences, and soon discovered it was kind of a challenge and more fun than I would have thought. Trying to cram in every letter and come up with unique and colorful words, it’s like solving a puzzle. (Ohh, “solving” and “puzzle” are both good words for this kind of thing, getting in those Zs and Vs, and Xs and Qs, often present the challenge). Edited to add: this should go without saying, but I do all my writing withOUT an aide of any sort – no dictionaries, or thesaurus, that’s so cheating!
At first the sentences started out utilitarian, just getting the job done. But as I kept going… well, you’ll see, a sort of style emerged, as well as a need for coherent sense to be made of the words as well.
I love quietly watching birds zip by, making an exit from trees to sky.
The sexy queen’s chicken wings do jump with flavor, taste buds zing.
Six wily elk did jump and climb, to graze on a bluff quite very high.
Next week’s quail hunt could provide a zesty meal, just forget buying a turkey!
(here’s where the philosophy starts…)
Quarrel not, but exact good and make peace: with a zephyr of justice, a soul ever feasts.
Always excel on the hard quiz of life by just taking up lessons from every strife.
A quick fix to obtain zen: remove darkness, placing joy within.
Gladly embark on a quest, prepare to joust with zeal, affix your eyes on pride, and victory you shall steal.
Pretty weird, huh?
Anyways, thanks for reading my strange ramblings. Can you write with your “opposite” hand? Have you ever tried. Show me some pics and help to not feel so bad!
It’s that time of year again, ALREADY. Thanksgiving has somehow come and gone, and Christmas is right around the corner. My childhood BFF Mary just celebrated her birthday on December 1st (a chronological landmark I remember every year) and now the third is here…
It’s my EIGHT YEAR CANCER-VERSARY!
Can you believe it? It’s been eight happy, wonderful, blessed bonus years that I’ve been gifted since beating Stage III Hodgkin’s Lymphoma back in college.
The funny part about this commemorative occasion is that for the last several years, we’ve been celebrating it on December 5th. In writing a post for this very blog, I uncovered some old photos, and actually found my radiation completion certificate – and lo and behold, it was dated the 3rd. So the third of December it is.
This morning when I woke up to some texts and emails from family, I kinda found myself reflecting for a bit. My moods ranged from full of awe and reverence to downright giddy. On Facebook, I posted an image of my cancer-beating certificate, and I’ve gotten an obscene amount of likes on it, like in the 160s and climbing. And my dear pal and former-roomie and current co-worker Sasha “Salsa” Freeman Gray has been quite lovely in uploading some of the sillier pics from those crazy cancer days.
I was in college, had already gone through some really crazy health issues (a mis-diagnosis of Crohn’s Disease led me down the garden path of insane meds and eventually a full bowel obstruction which required a surgical resection), when my neck started to look like a sock full of golf balls – at least that’s the easiest way I’ve come to describe it. I was tired, running slower than usual (literally, I ran a 5k and noted that my time was really slow, even for me), and I was having terrible night sweats. Eventually I developed a non-producing cough, and around the holidays I just assumed I had some kind of supercold that my immuno-suppressed body couldn’t really fight so well. It wouldn’t be until February of 2004 that I’d begin the process of diagnostic testing, and actually April when we found out for sure that it was Stage III-BS Hodgkin’s Lymphoma that had taken my collegiate body hostage.
I’ve gotten some interesting questions today – people wanting to know what it was like, how I’ve made the most of my time since, how I’m doing now… so without boring you all to death, I’ll try and give some tidbits:
What is it like to know you have cancer?
Cancer was wacky crazy and very surreal for most of the experience, with one grindingly serious memory that jumps forward in which I finally absorbed the fact that I indeed had fecking CANCER and that it was hardcore. Most of the time though, when you have cancer and you’re all chemo-bald, people know what your deal is and they’re very nice to you. In my ongoing health issues with “Crohn’s Disease” and what we now know to be Acute Porphyria – it’s different.
The serious realization came about very randomly. I was driving home, and I was getting on Hodges from JTB (Jax ppl know what I mean), and it just hit me: I HAVE CANCER. THIS IS SERIOUS. And it kind of quietly overwhelmed me for a few moments, but by the time I got home I felt “normal” again.
How old were you?
I was 20 when I was diagnosed, and celebrated my 21st birthday between chemo sessions. I remember going to the Pepsi 400 (because that’s what it was called back then) on my actual birthday (July 3rd) and when a freak rainstorm came through I was freezing. My then-boyfriend, Rick Neidringhaus, went and bought me some sweats and a windbreaker for my two favorite drivers: Darrell Waltrip and Dale Earnhardt Jr, respectively. I still have the pants and actually wear them often!
What got you through?
This one is easy: God, faith, family, friends, the entire UNF family, the Greek system, and my incredible team of doctors, nurses, pharmacists and techs – all the good people of Mayo Clinic in Jacksonville who efficiently and effectively saved my life. I had top notch doctors – I was already a patient at Mayo because of my aggressive “Crohn’s Disease” (since I really didn’t have Crohn’s, my body would never respond to the treatment – rendering me a medical outlier with an extreme case and therefore in need of the best doctors in the land. Luckily for me, I lived in Jax, FL at the time and had Mayo access just a few miles from home).
I kept a really awesome attitude the entire time. I bore everyone to death with the stories I tell again and again – but the one that I must tell when I saw a mother and her wheelchair-bound small child park next to me at Publix the day I was officially diagnosed. Seeing that kid who has likely never walked and likely never will, I refused to feel sorry for myself. It changed my entire perspective on the situation. The first 19 years of my life were spent in excellent health, as I lead a life of privilege, freedom and one full of lovely memories and special experiences. Had I died the day I was diagnosed, I wouldn’t have had a regret or a single sad feeling for myself. Having cancer is what it is – once that tough lump is swallowed, all that’s left is making the best of it. So I fought hard, kept my chin up, and did what I always do: plow my way through with some jokes and a lot of laughs, and a firm anchor to God and faith in the ultimate plan He has for my life.
Have these eight years been well-lived?
I mean, according to me – YES. Heck, yes! I’ve done some pretty amazing things and I believe I’ve chocked eight years full of an awful lot of life. I’ve traveled, I’ve helped others, I’ve tried new things, I’ve experienced love, loss, happiness, and pain, full spectrum human experience. I’ve created art, made others smile, formed friendships in the strangest and most normal of places – and every now and then I hear the “I word,” that I’ve inspired someone else into doing something good or at least having a good attitude about whatever it is he or she has going on.
Knowing that I can actually inspire others is very humbling.
Knowing that I’ve literally been granted 2,992 extra days of this life (heck yes I counted Leap Years) is humbling.
So what’s it like now?
It’s both far-removed and ever-present. The scars have faded, but they’re still there; and I still have my very first tattoos – the radiation dots that they marked me with to make sure they hit the same spot every day. (As far as scars go, I had a couple stitches in my neck from a biopsy, another incision on the left side of my neck from having a lymph node removed, and I have a scar on my chest when I had my port-a-cath taken in and out). I don’t obsess or worry about relapsing like I once did, and I don’t have to do the often check-ups and scans as I did in those first crucial years of remission. I passed the five-year milestone three years ago, and that was a BIG ONE. That’s the “you’re cured” milestone.
I don’t ever want to lose touch with that experience though. After all, having been through cancer is a huge definer of who I am as a person. It shaped me into a MUCH nicer person in general, and a tougher person in many ways. It gave me a glimpse of my own frailty and left me with a profound appreciation for life and every breath I take. And with that comes a responsibility to carry out a life well-lived and to do good in this world – and I find myself still trying to grasp at the best ways to keep that promise.
From this experience, what still impacts you today?
I forever live with inexplicable gratitude in my heart. For every nurse who held my hand, every doctor who took the time to make sure I received exemplary care… to my loved ones who came with me to chemo, prayed for me around the clock, and supported me in so many ways that words can never express… to the friends, classmates, and total strangers who came together to raise funds to help cover the costs of my treatment, to my Dad for working hard and having a good job that provided excellent insurance for me and money still to cover the costs that even excellent insurance didn’t take care of.
I carry with me a legacy of the hopes, dreams, and the honor of so many people who aren’t as lucky, of those who came before me and the technology that saved my life, of those in circumstances that don’t allow for early detection or top-notch medical care, of those who just don’t win the fight. And that’s something that’s very real with me, a part of who I am. We stand on the shoulders of so many giants, and I can’t ever forget that.
Mostly though, I just feel like me: Rose. A happy wacky tie-dye loving slightly-redneck weirdo who often smiles and laughs everyday, and who is truly loved. And I’m happy to be me, and I feel blessed to be me – each and every day.
I suppose if there was ever a profound take-away from an experience like mine – it is knowing in every ounce of my being that I am loved. By my God, my family, those around me then and now, my husband, my friends, my sister, and even strangers – yes. I am loved. And being able to come face to face with such colossal concepts as life, death, and love is an honor that I am humbled to have experienced and lived through to write about now.
This post is dedicated to all of the many, many people who saved my life. And to the many more lives that are forever changed by cancer, in all manner of ways – both happy and sad.
Thank you for reading and for your support.
If you were to ask Staten Island native Mike “Loco” Hoffman about his contributions to the ongoing Sandy Relief efforts, he’d tell you he’s just doing his part to help, that he’s nothing special. But to the thousands of affected residents of New Dorp and Midland, this gentle giant is nothing less than a hero.
I met Mike a couple weeks ago while I was downstate volunteering as a Sandy relief worker. Here was this big imposing tough guy, smiling and giving hugs as he orchestrated volunteers and comforted storm survivors. What really impressed me was the way he went about things. Mike saw to it that everything was prioritized based on need and circumstance; a family with a seriously ill child would be higher on the list for generator access than a house of healthy young adults. Working tirelessly since the superstorm came ashore, he’s a relief leader and morale coach for some of the island’s hardest hit neighborhoods. Corralling labor volunteers, running area shelters, repairing homes, delivering supplies… Mike Hoffman ensures that no need – no matter how great or how small – goes unmet on his watch.
It’s Just Who He Is:
Known as “Loco” to his friends, Hoffman first made a name for himself as a high school football star at both Port Richmond and Curtis. Destined for collegiate D-1 greatness, Mike’s dreams were cut short when his mother was diagnosed with brain cancer. Choosing to care for her while placing his own ambition on hold wasn’t a choice for Mike, it was an instinct. Putting the needs of others far before his own is just who he is.
On the surface he seems like a normal guy: he and wife Amaury have been happily married for more than a decade, they have four beautiful children. ”Coach Hoffman,” as he’s known to many, has volunteered for the last seven years with Staten Island youth football and baseball teams.
But normal as we know it is long gone in the post-Sandy world of Staten Island. Putting down a team roster and picking up a volunteer contact sheet, Mike does what he’s best at: stepping up to the plate to help those around him.
Rolling Up His Sleeves
Every single day he’s out there working hard. Digging out homes in areas where flood waters reached heights of twelve feet, delivering donated generators to families in need, demo, ripouts, cleaning up the mud and muck left behind from the storm surge, collecting and distributing donated supplies – if it needs to be done, he’ll pitch in and make it happen. He’s even gotten his whole family involved. All of his kids have been out to volunteer with him, even his youngest, who made a huge impact on Midland residents. He’s been on the news and in the streets educating others of the many abounding risks, including: electrocution hazards, structurally unsound homes, debris and dust inhalation, infectious illness from unsanitary conditions, growing mold in waterlogged buildings, hypothermia, muscle-strain, violent looters, and even the ever-increasing issue of disaster-scams.
I so admire the work Mike has been doing, I wanted to get involved in any way I could. Before I left Staten Island on my last day there, I made him an offer: ”when I get back home and I have Internet access, power, a fully charged cell phone – I’ll help you in anyway I can. “
In His Own Words:
This evening, I asked Mike what the biggest need is now:
“As of now, the biggest need is getting the word out. It’s not a hot topic anymore, people have gotten tired of hearing about it. The news coverage has dropped off and people are already forgetting about us, they’ve moved on. Everyone came out and pitched in for a week or two – and while that was great, this thing is far from over for us. We need volunteers, we need donations, we need help! And this goes for people here too, if your house got worked on, go help your neighbors out. There’s still so much work to do, we all need to rally now and keep going.”
Reflecting on how people are coping:
“A lot of people didn’t know what their neighbors’ names were before this thing happened, and now they’re checking in on each other. I’ve heard plenty of stories about that, people didn’t even know who lived across the street, and now they’re checking in with one another all the time – ‘Hey Mr. Jenkins, I’m going down to get some hot food. Do you need anything?’ – they’re working together now, we’re all in this thing together.”
Why he does what he does:
“When the landlord calls me, I’m disheartened. When I see the bills piling up, it’s discouraging. But then, I look around and I’m motivated. I won’t let my personal problems get in the way of what my heart is telling me to do.”
“I just want to lead by example. My kids look up to me, I’m their role model, and I know they’re going to grow up to be good people – and that’s all I need. All of my kids have been out there and pitched in, and that means so much to me. My little nine year old came out and he was a saint – I was worried about his little lungs, so I had him all decked out in the mask and everything – and he was just a firecracker he had so much energy. He was asking people what they needed, and he was so excited to get it. He swept the whole street, it was amazing. It made me feel good as a father. And then when he wrote that message on the generator it just broke me down, I got emotional.”
If you want to get to know Mike for yourself, and keep up with all the great work he does, check him out on Facebook (Mike Loco Hoffman) and Twitter (@TheMikeLoco). You can also contact him directly: 917.548.0523 or email@example.com to see what his needs are on any given day. Right now volunteers, specifically for labor, tools, and any supplies/gear that can help out labor crews are in big demand. Hard hats, goggles, work gloves, dust masks, sledge hammers, axes, shovels, wheelbarrows, crowbars, pry bars – any of those items would be a huge help.
Acquiring tools is really very hard and hanging on to them seems to be even harder. They’re expensive to pay for, so it takes a lot of money to get just a few things. Luckily, donations of great tools have come in and Mike’s been able to get access to some. They just don’t seem to last long, though. Of course, many items are one-use only or get worn out quickly. As far as the big and pricey tools, they’re constantly getting stolen. Mike hasn’t been able to transport them all to his home every night where he can safeguard them – so this has been an ongoing problem.
Some donations have been rounded up, and we’ve been able to rent a truck for Mike! It’s a U-Haul type truck that he can safely store the tools in and keep locked. As of now, there were enough donations to cover the cost of the truck for a week. We’re looking for help keeping it rented – or funding of some kind of storage container that securely locks.
Even if you just wish Mike well and give him some positivity and encouragement – that would be great!
As always, I want to thank you for reading! I know it’s been a lot of Sandy talk lately, and that for some people hearing about the topic so much is tiresome. For far too many people there is no escaping this topic though – they’re living it. And it’s for them that I keep talking about it, and it’s for them that I ask you keep listening, reading, and spreading the word. The more we all pitch in, the faster affected people can get their lives back in order.
I’m back in Western New York now. And while I have so many stories to tell about what I’ve seen and experienced down state in the hardhit areas of Hurricane-Superstorm Sandy – I’m also super busy with work and real life. I know I’ll carve out some time to publish some well-worded stories about my time there. And I’d also love to report on the everyday heroics I witnessed, the amazing people I met, and I want to express to others around the nation and world just how serious the situation is there.
So much work is yet to be done. So much help is still greatly needed.
I’m going to run for now. But should you be interested in checking out my photos from Staten Island and Long Beach, I’ll post the links to the public albums.
Thanks for reading – and please keep the folks of NY and NJ in your hearts and prayers. They need all the love and assistance we can muster.
I’ve been here all week working and helping and it’s been a lot of things: crazy, intense, and amazing to see the strength and resilience of those who have been hit the hardest. I don’t have time for a full-fledged update right now, but I wanted to make sure to get the word out about a few things.
Check out this post I published on Snoo.ws to read about what I’ve been doing. (I work for ICUC, and Snoo.ws is ICUC’s blog – it’s part of my job!). Also, look for me on social media (www.facebook.com/rose.m.duggan and @RadRoseDuggan) to see pics!
If you want to help now, the needs have shifted from what originally was asked for. Canned foods and clothing have rolled into NY and NJ in surplus amounts. So hang on to your winter coat, there are other ways to help.
People still do NOT have power. Their needs are: generators, gas, extension cords, batteries of ALL sizes, flashlights, candles, lighters, head lamps. Portable stoves or ways to cook without power is rad as well. And can openers! Cans everywhere and yet… no way to open them without making a mess.
Homes that have been flooded MUST be gutted, stripped and re-built. Any TOOLS are needed, work gloves – I cannot stress enough the importance of work gloves and dust masks / respirators. Shovels of all kinds, axes, sledge hammers, crowbars, the suits you can wear over your clothes to protect your skin from insulation fibers – WORK GLOVES, DUST MASKS.
The air is full of debris and dust from all the demo – it’s crazy.
Clean up: In homes where the storm surged flooded the entire basement and first floor, there is this black mucky mud everywhere you can see. BLEACH is a needed item. BLEACH, please send BLEACH!!! There is also a profound need for cleaners of all kinds, rubber gloves, mops, brooms, scrub brushes, sponges, rags, towels, paper towels or shop towels. Buckets, mops, mops, mops. and BLEACH!
Moving stuff around: If it has wheels, it can be used. Bags, backpacks, luggage – anything that people without access to cars and gas can use to get around and get supplies around. Wagons and wheelbarrows, bikes, etc. have become necessary entities.
Of course groups like The Red Cross and other big names have been helping.
If you’re looking for smaller, more direct organizations to get involved with, I would suggest looking for grass roots agents. The people-driven, community based groups are having a profound impact. Local restaurants have been donating food and coffee – you could call a locally owned coffee shop in a hardhit area and offer to sponsor coffee for a day to relief workers.
My favorites are:
192 Ebbitts Street, Staten Island NY. You could send Home Depot, Walmart, K-mart, or Visa/Mastercard gift cards to this address, with “care of Gina” or “care of Frank” on the envelope, and people who can help will be able to get in touch. Another great contact point for grassroots work is a man named Mike “Loco” Hoffman – find him on Fb or on Twitter @TheMikeLoco.
The Unitarian Church of Staten Island: 312 Fillmore Street New York, NY 10301; (718) 447-2204 has also been amazing. Check them out on Fb: https://www.facebook.com/uucsi?fref=ts
Occupy Sandy has been an incredible force in organizing people and dispatching volunteers to where it’s most needed.
And of course, FDNY and NYPD have been helping around the clock. This Fb group, FDNY Incidents, has been helping people meet needs as well: https://www.facebook.com/FdnyIncidents?fref=ts
And finally… THE HOLIDAYS
I’ll be working on a grassroots project we’ve dubbed “Sandy Claus” working to bring Christmas, Hanukkah and the holidays to kids/families who’ve been affected by Sandy. We’ll be working out ways to connect donors to those who could use some cheer. Stand by in the next week or so for info on that idea to develop! I will let everyone know.
THANK YOU so much to all who’ve shown support, interest, love… all your kind thoughts, prayers, donations and LOVE have gone so far down here.
I’ll check back in soon with more pics and with stories I’ve been hearing all week.
It’s official. Any grown man who kindly chuckles when you refer to the industrial strength push brooms inside a Home Depot as, “elephant toothbrushes,” should probably be nominated for sainthood. Or at least get some kind of Newbery Medal or something. (Oh calm down, I know what the Newbery Medal is… and seriously, I believe that push-broom humor is way better than Across Five Aprils – just sayin’).
What the HECK am I rambling on about? The final hours of prep are behind me and I’m all but ready to hit the road and head down to NYC and pitch in where I can to help with any Sandy Relief efforts. I’m a little bit loopy (last night’s all-nighter is catching up with me, yes) and a lot excited. The past week has been a really amazing time for me… and for humankind. In just a few short days my idea to help a little with the Sandy Relief efforts going on downstate have evolved into a full out movement, with support coming in from so many directions. Strangers and loved ones alike have been digging deep to give all that they can, trusting me to make wise choices and do as much good as possible, the most humanitarian bang for their buck. And here we are… it’s just about go time, and I’m simply dazzled by the goodness of people and the love all over this.
I mean, I know it’s not all rainbows and puppies, of course. I have kept in mind why on earth I’m doing all this in the first place. Hurricane Sandy was a whopper. And while she was slamming the coast, and in her aftermath, there’s been the entire gamut of human emotion left in her wake. We’ve heard some stories in the news, on social media, and through the grapevine about people being pretty nasty to one another (and well, it’s election day tomorrow – so we’ve been hearing about the worst of humanity in smear campaigns for months now)… but right now I want to pay attention to the shinier side of that coin.
Tonight friends, this is a story about hope.
(And even if it’s kinda wordy and long, I think it’s really a good read.)
This is a story about the kindness and heart of people who want to help, and who mean well, and who are willing to do good.
I really had NO idea what I was getting myself into when I volunteered to start pooling together donations. Truth be told, I thought I’d be shipping some boxes downstate and that would be that. But now as I know I have a car chock full of love, a new friend for the journey, plenty more to meet before it’s all said and done, and a race against time and mother nature to do as much good as we can – I’m just honored to be a part of this.
Skip is the man I was talking about up top. He’s a saint. He just so happened to be working his usual post in our local Fredonia Home Depot tonight when I came in with a long list of ideas and very little clue about the specifics of what I needed. When I was on the phone asking silly questions about the kinds of masks and what type of broom, Skip decided I needed some help. He grabbed a cart, did all the heavy lifting, and walked back and forth across that Home Depot with me so many times. And when I made my ridiculous jokes, he had the wonderful decency to laugh. He downright chuckled a couple times, like when I suggested splurging on the hot pink duct tape and letting the homeowners deal with it. Heh.
After Skip helped me to find the best deals, and explained to me the subtle differences between hand cleaners and crow bars, and plastic vs wood handles on tools – I had to sprint out to the parking lot.
Because, simultaneously, as I was getting goods at Home Depot to help in the hard labor (all covered through donations, mind you) – out in the parking lot I was meeting up with an Angel. Kathy, from a local Catholic church in town, went so far out of her way to help me. I called around to churched today to see if any places had stores of clothing or blankets, and while mane did not – a lady who happened to be working at one such place offered to do me one better. ”I can clean out my house when I get out of work tonight.” She brought EIGHT GARBAGE BAGS… yes, EIGHT full bags of winter clothing, boots, and more. Kids sizes of all kinds, and stuff for teenagers and adults too.
Yup. Kathy and her family are going down for Sainthood as well.
And this, she explained to me, was her just getting started! She said she could do more with some extra time… (speaking of which, hold that thought, we have some ideas in the works for long-term projects to keep taking care of those hardest hit long after the media circus dies down and their lives are still left in pieces).
Skip and Kathy are just two of the amazing people who are making this journey possible. The kind and generous owners, Edward W. Pagano, Jr. and his wife, of our Fredonia Sears hometown store – they’re sending me to Staten Island with 50 pairs of work gloves, and at least 30 dust masks, water bottles, and more. Sears as a company already donated to Sandy, this is from two small-business owners in the community, just wanting to do their part to help. The folks at Smith’s True Value in Irving donated a lot as well, gloves and masks too, plastic sheeting, and other supplies.
My friends have been putting money into my paypal account, offering to help in any way they can.
IT TAKES A VILLAGE, Y’ALL.
And just being at the epicenter of so much love, hope, teamwork, and true humanity is honestly one of the most inspiring things I’ve ever experienced.
I’m meeting a brand new friend tomorrow morning at about 6:00am. Her name is Kate, and she’s going on this adventure with me! About forty miles from here she’s been experiencing the good of her own “village,” getting donations and all kinds of items ready to go as well. She’s keeping me company on the ride down and then we’re rolling up our sleeves and getting to work.
Others have called to talk about rides if I go again, or more items I can bring back next time. I’ve been asked where to send things to, and people have just been WANTING to help. It’s all so… AMAZING.
Don’t get me wrong. Hurricane Sandy and the destruction she’s brought to this state, the coastline, and our nation is just jaw-droppingly devastating. We didn’t stumble upon a gold mine of warm fuzzy feelings unprovoked; I’m sure that tomorrow as I set eyes on the aftermath for myself, it’s going to take all this positive energy that’s been percolating to keep me going. I’m sure there will be tough times to come, and for so many of our fellow brothers and sisters living in the thick of it all right now – they are in some of their darkest days.
All together though, we’ll help brighten things up.
With the thoughtfulness of the Skip, and the encouragement of Eddie (another Home Depot worker who was really kind and helpful, wishing us the best), with the love and nurturing of Kathy, and the warmth from Mary (a local church lady who’s donated some gorgeous handmade blankets for me to bring down)… the resourcefulness of Edward Pagano, Jr., his wife, and the folks at Smith’s True Value for finding so many items they could afford to spare, with the planning of my pal MJ who’s organizing street teams in Staten Island to get the work done… with all these efforts combined, and added to the countless other acts of love, giving, help, thoughtfulness, support, and hard work we are able to create our own force of nature.
We’re leaving very early in the morning, so I’ll just end things on a fabulous and inspiring note for now.
To everyone who has pitched in: THANK YOU, it means so much to me, and I KNOW it will mean so much to the countless lives we’re going to help as best as we can once we’re down there. If you’ve been hard hit by the storm and you’re at your wit’s end… know that we love you, we’re thinking of you, and there are so many people – people you’ll never know and will never meet – that are doing all they can for you, and will keep at it until your needs are met and life as it should be, is restored.
Still interested? We haven’t even left yet – gas and other costs are certain to come up. Just simply wire me some funds via paypal using firstname.lastname@example.org. Any donations are appreciated, and I’ll make sure to post about how the money is spent and how much we’re able to do once we get into the hardest-hit areas.
Good night, God Bless, and tune back in to find out more about how this project all plays out! I’ll post better pictures of what we’re brining when it’s light out tmrw, and of course you can always track me down on Fb or Twitter!