December LinkUp Party – Holidays and Chronic Illness

It’s a new(ish) month, and that means it’s time for a new Linkup Party from A Chronic Voice.  This month’s linkup is all about the holidays and chronic illness, a topic near and dear to my heart. This month’s prompts are:          (Note: some of these are spelled the way that everyone but the U.S. spells them. I kept them that way – it’s how they were originally posted, and also it makes me feel fancy).

De-StressingD

Holiday stress is different for everyone. For some, it’s family dynamics.  For others, it’s the intense socializing and people-ing, which can be incredibly exhausting both mentally and physically, especially when you battle chronic illness. For others, it’s the expectation – it’s a season for joy and happiness and merriness, and those who are ill, especially those living with depression, often don’t feel this way. It can feel incredibly lonely and isolating, especially when you feel this way in a room full of people. For me, it’s a combination of all of these. 

This year, I’m lucky that because of some… ahem… simplifying in my life (at least in my external commitments), I have fewer networking events, party obligations, etc. That’s helping considerably. There’s significantly less “Go to this party/event and feel super socially anxious and awkward and alone and depressed but smile and pretend everything’s fine because who wants to be the downer at the holiday party.” Additionally, I’ve been spending a lot of my previously free time in yoga teacher training and yoga classes (as part of teacher training), so while my schedule isn’t really any less busy, it’s filled with activities that, while intense, focus a lot on mindfulness, reconnecting to oneself, focusing on the present, and lowering stress levels. It’s also letting me surround myself with others who want to focus on these things, which can be a huge help. I feel emotions – mine and others’ – strongly and tend to absorb a lot of what’s around me. I find more and more, the company I keep and the atmosphere I’m in greatly affects me, and I have to keep this in mind, especially during super stress-induced, emotionally charged times like the holidays.

Savouring

I’m somehow both an old soul, and a kid at heart, and the kid at heart comes out big time during the holidays. Christmas is literally my favorite day of the year. Growing up, holidays were a big deal in my family. We’d have Christmas morning at our house, but usually the next day or so we would drive up to my Grandma’s in Buffalo, NY and that entire side of the family would spend the week between Christmas and New Year’s Day together. Three generations of family, all celebrating, enjoying the same yearly traditions, laughing, and joking and singing (my grandma loved to sing), doing Chistmasy things, ringing in the New Year together.  I remember walking with my grandma to get hot chocolate on the main street that ran through town. I remember all of the Italian Christmas cookies (some that we later found out were fruit cake made to look like cookies.. that was disappointing!).  I remember making ridiculous family videos for New Year’s eve and doing family “talent shows” at the insistence of my Grandma. There was so much love and fun and silliness – LOTS of silliness – and togetherness. We didn’t have lots of money and it wasn’t some big formal affair. We just got together and enjoyed each other and the season. And even though my grandma passed away ten years ago, and only one great-aunt from that generation is still alive, and even though we haven’t gone up to Buffalo for the holiday in years, that all still stays with me. I savour all of those traditions. The cookie baking, the Christmas carols, the lights, the tree-decorating, the laughing, the singing, the togetherness.

Simplifying

Simplifying is a huge goal for me for 2019. A lot has changed for me in the past couple of years. I got married. I went from running a business full time to running it part time and working at a regular job part time, to running it on the side and working at a regular job full time. I increased my advocacy efforts and founded Spread Hope Project. I started yoga teacher training, which I’m still currently undertaking. I went back to church and am slowly beginning to understand my own spirituality more. A lot has been going on, and it’s left me feeling a little all over the place – like I’m constantly in numerous transitions and trying to navigate them all simultaneously.

So in terms of simplifying, I’m focusing on two aspects:

1.) Looking at what in my life still serves me, and what has run its course. Everything from clothes to organizations to that friend that you continually try desperately to hang on to only to realize that it’s been one-sided for a while, and really, they haven’t really been in your life for quite some time. (Note, I didn’t say that with anyone specific in mind, and I don’t plan on friend-dumping anyone, but I don’t need to chase ghosts either). It doesn’t mean that there’s anything wrong with the organizations or the clothes or the friend. But not everything that served you at one point will continue to for eternity. And when you try to make it so, you often get stuck.

2. I’m looking to simplify my inner life. Yoga teacher training and getting back in touch with my spirituality have been a big help. I’m focusing on trying to be more present, to focus on the small moments, to focus on joy and life and hope, and being a good, loving, giving, kind human being in the day to day, instead of feeling insignificant or inferior because the grand scheme of my life isn’t where I hoped it would be. This of course doesn’t eliminate my anxiety and depression because they’re illnesses with no cure, but it helps me feel less overwhelmed at times, and that’s a good start. 

Resting

Resting is huge for me. If I don’t get enough sleep and rest, my moods cycle more, and I become more ill. It affects my IBS and migraines as well.  I’ve been working on trying to schedule things more in advance if possible, so that I can also schedule rest time. Whether it’s getting to bed early or an afternoon/evening of walking Hallmark movies and letting my brain relax, I aim to actively plan rest time. And I try as much as I can to stick to these boundaries. I’m no good to anyone if I haven’t slept, am depressed and anxious, if I’m in pain from IBS and am having trouble seeing straight from a migraine.

Finalising

This prompt is an interesting one, because it’s one I’m actually backing off on a little bit. In part because some of my main focuses are not the type of things that are finalized in the calendar year. For example, my yoga teacher training continues right on through the spring. The end of the calendar year only means we get a couple of weekends off to celebrate the holidays. But apart from that, the training continues on just like it would when transitioning between any other months of the year. 

It doesn’t mean I don’t have goals for 2019, and I’m especially going to work on some goals for Spread Hope Project. I have ideas that I’d like to put into place, or at least work towards, and want to start to plan those steps out.  But mostly, what I’m trying to “finalize” is to get myself into a better place personally, meaning internally, to start the new year, and I’m doing so by focusing on the above – the simplifying, the resting, the savouring, the de-stressing. I’m trying to take some of the self-imposed pressure off of myself, reset a bit, and be ready to start with a bit of a fresh perspective in 2019.

As always, thanks to Sheryl of  A Chronic Voice for hosting the LinkUp Party! Check out her site, as well as the December posts for other chronic illness bloggers here!

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As I Close In On The Last Days of My 38th Year

This was originally posted on my personal blog, Lilies and Elephants. But it seemed relevant here, so wanted to share!

If you aren’t aware, I love birthdays. My birthday, your birthday, my dog’s birthday, your dog’s birthday. If it’s a birthday, I love it.  Why? Well first off, it celebrates life, and as someone that so passionately advocates for life in my suicide prevention efforts, I think making it through another trip around the sun and still being here, even with all you’ve had to endure, is a pretty damn good reason to celebrate. Also, here’s the thing: unless you’re a twin/triplet/other multiple birth, or share a birthday with someone you’re likely to celebrate with, your birthday is the only day of the year that’s ALL ABOUT YOU!! I mean granted, it’s not only about you because somewhere in the world there are others who also have their birthday the same day (looking at you, Bruce Springsteen, who shares my birthday). But in your sphere,  your day is about you. It’s not about your clients or your boss or your friend, or your dog or your cousin (OK my cousin and I have a birthday a day apart, so this is actually a bad example, but you get my point). It’s about you.  And often, because you don’t get to celebrate with everyone at once, you get to stretch it to a couple of days – birthday weekend, birthday week, etc. Hell, DSW sent me something in August that said “your birthday is almost here!” That’s what I’m talking about! And the beauty of it being all about you is that if you want to spend your birthday/weekend/celebration time going to yoga or going out to dinner (if you can afford it) or gardening or sitting around picking your nose, that’s totally your right. We spend so much of our time trying to accommodate everyone and everything, trying to meet those deadlines and get that work done and do those chores and tasks and do whatever else we have to do that we all deserve this time.You get to be Queen (or King) for a Day! (Fun fact: My Grandma Northen was actually on the show Queen for a Day years ago, which is what made me think of this phrase). 

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I hope I enjoy my birthday as much as Grace when she realized there were fries in this bag.

But in addition to being a birthday celebration advocate, there’s another purpose to this post. As I like to do each year, I wanted to take a look at my past 12 months.  Especially as we get older/have increased gravitational pull towards the earth especially in the curvy parts/forget why we just walked into the room or why we’re not wearing pants add few more candles to the cake, I think it’s easy to think of all the things we haven’t yet accomplished, or where we hoped/thought we might be that we aren’t yet. This can be especially true if chronic illness has prevented you from being and doing some of the things that you hoped to have been/done at this stage of life. But so much can change in a year,  that I think it sometimes helps to look at those things we did accomplish, or those positive changes that have happened in the last year, to give us a bit of hope that just because we haven’t gotten there yet, doesn’t mean we won’t.

In this past year, I have: 

  • Gone on my honeymoon (it was a few weeks after our wedding, so technically, I was married in my last age year).

 

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Overlooking Keuka Lake in the Finger Lakes, where we honeymooned.

 

  • We’ve gotten three new cars (clarification: we got two new to us cars, one of which was totaled by someone who didn’t stop behind me, and subsequently, I got an actual new car because it was actually cheaper with the Hyundai sale than getting a used one).
  • I left my part time job of four years, started with a new company, and then transferred sites with that same company. So my job has, essentially, changed twice in the last year.
  • Traveled to Greece (Athens, Santorini, Crete).

 

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My husband and I in Crete

 

  • Traveled twice to Spain – once with my cousin to Barcelona, Madrid, Cordoba, and Ronda; once with my parents, and all of us siblings and our families, to Catalonia.

 

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Hiking in Ronda, Spain

 

 

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From the house we rented in Catalonia. So ridiculously peaceful.

 

  • Signed up and been accepted to Yoga Teacher Training (I start Sept 28th!).
  • Celebrated my first Wedding Anniversary.

 

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Actually got cappuccino on our anniversary by chance.

  • Had to titrate completely off all medications temporarily for private, personal reasons. And you might say “this is something to celebrate?” No, but the fact that I’m still here while being off all meds is. Honestly, other than celebrating my wedding anniversary, of all of my accomplishments this year, this was the biggest. It was by far the most difficult (I mean, traveling through Greece and Spain in luxury was tough, but….).

 

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Actual photo of me off meds.

 

 In the Health Advocacy/Writing world, I:

  • Completed my fifth Out of the Darkness Overnight Walk for Suicide Prevention.

 

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Finish of the 2018 Overnight Walk in Philadelphia.

 

  • Had my advocacy work published on numerous sites, including The Mighty, where I officially became a contributor – a huge goal of mine.
  • Had my advocacy work published on numerous sites, including The Mighty, where I officially became a contributor – a huge goal of mine.
  •  Became a Pioneer Member of the Savvy Coop, and was chosen to do an Instagram takeover for them.
  • Completed No Stigmas Ally Training, and submitted work to be published there.
  • Had the first chapter of my novel (or one day novel) published in Wordgathering Magazine.  Putting my novel out there for everyone (or the 10 people obligated by blood relation, whatever) to see was super nerve wracking, as I never show anyone my fiction work.
  • Been steadily working on getting over my fear of rejection and failure in submitting work and participating in advocacy projects.  But for the Overnight Walk, as I’ve done that before and it’s not a “work to be judged” so to speak, every one of the above took huge amounts of courage to pursue. My goal in the past few months has been “go for it”. I’ve had to tell myself, “The worst thing they do is say no.” I’ve made an increased effort to ‘raise my hand’ when people ask for submissions, participants, and the like. This is huge for me, and something I am hoping to continue to become better at with time.

There were so many literal ups and downs this year – I have a rapid cycling mood disorder, and had to come off meds, after all. But I made it through, and I accomplished quite a bit. And building on that momentum, I have some pretty big hopes and goals for next year, which I’ll be sharing in an upcoming post.

Thanks for all of the memories, 38! Looking forward to seeing what 39 has in store!

Philadelphia: Living With Chronic Illness (Invisible Cities LinkUp)

I recently participated in my first LinkUp for A Chronic Voice, and I loved the writing prompts and getting to meet fellow advocates through it. I also love talking about my home city of Philadelphia, so when she posted an Invisible Cities Linkup, focusing on what it’s like to have Chronic Illness in our home cities, I couldn’t resist. Without further adieu…

Best thing about your city for living with chronic illness?

Philly is a pretty tight-knit city – we like to say it’s the biggest small town in the country – and we are a pretty passionate, socially active, and entrepreneurial bunch. Which means that people are not shy about advocating what they stand for, and it’s pretty likely that you’ll be able to find a group that focuses on supporting your illness. And if you cannot, it’s pretty likely that you’d be able to start something and find others who are interested. We love entrepreneurs in Philly, so we’re big on supporting people’s causes, organizations, startups, and the like. For someone looking for resources, support, and/or opportunities to make their voice heard, Philly is a pretty good place to do that.

 

Worst thing about your city for living with chronic illness?

It’s a big, old city, which means crowds, close quarters, smog/pollution, and noise, none of which are far away because of the narrowness of the streets. So if you have sensory issues, like myself, respiratory issues, or crowds make it difficult for you, these could cause you some difficulty. Also, see number three!

 

How accessible do you think your city is in general?

I’ll be honest:  because we were built in the days of horse and carriage transportation, many of our streets are narrow and we have a lot of cobblestoned streets/areas. Also, because we’re so old, we have a lot of historic buildings that are “grandfathered in” when it comes to accessibility guidelines.  So if a building is “historic enough” and elevators weren’t around or prevalent when it was built, it may not be required to add one, even if it technically meets the requirements for having to do so. In other cases, certain doorways may not be large enough for larger wheelchairs or accessibility devices, because quite frankly these things weren’t considered when the buildings were built. These are just a few basic examples, but I’d say that Philly has a ways to go in terms of accessibility across the board. I think we like the idea of being more accessible, we want to be, we just aren’t really sure how to go about it, especially in terms of the historic guidelines.

 

How educated is the public on chronic illnesses there?

I can’t speak for all illnesses certainly, but I can speak from my point of view as someone with a mental health condition. Because of our hospital and university system, there is a lot of public outreach about health and chronic illness, and several of our area universities have student networks that are particularly active in chronic illness and mental health awareness.  Being a large city, a lot of major illness-focused organizations have local chapters in the area, and just about every weekend I see numerous walks, awareness events, and the like for all types of chronic illness.  So I think this helps with the education, or at least the awareness aspect.

From the mental health standpoint, the local chapter of the American Foundation for Suicide Prevention (AFSP) is very active – we’ve hosted the Out of the Darkness Overnight Walk here in Philly twice in the last five years (it’s only held in two cities across the country each year, so hosting it is a pretty big deal). The local chapter also hosts events throughout the year, and they even helped paint a large mural related to suicide prevention in the city  (murals are a HUGE thing in Philly).  NAMI also has numerous chapters in the area, and their chapters frequently are involved in outreach and awareness campaigns, plus they offer a wide variety of resources.  In addition, having a large number of universities in the area, we there’s a large student voice, and I’ve noticed an increasing number of university-related/student group programs, awareness campaigns, events, and so forth.  So I think the public is becoming more educated, and I think people are wanting to be more involved and active in these causes, or at least more knowledgeable about them.  That said, there’s going to be ignorance about chronic and mental illness anywhere, but at least from my own point of view, I usually find that more on an individual level (i.e. a person here or there) as opposed to a pervasive attitude in the city.

 

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Mile 9 of this past year’s Overnight Walk.

 

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The finish of this year’s Overnight Walk in Philadelphia, on the steps of our Art Museum.

If you could pass one new law in your country, what would that be?

Not sure about a law, but I would certainly make affordable, quality healthcare and medication more accessible. Nobody should have to choose between going un/under-treated and going into debt.

 

Which is your favourite city or country (other than your own) and why?

For Chronic Illness, or in general? I haven’t lived outside of the US since being diagnosed (I studied in Australia in college and wasn’t diagnosed until age 29), so I can’t speak to it from a chronic illness standpoint. But my favorite city to visit is Paris. I just love everything about it. That said, it’s tough to find a major European city I don’t love!

 

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On top of Montnarpasse Tower in Paris

 

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I mean, how can you argue with that? The owners also eat here!

 

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Paris street.

 

Where in the world would you visit, if disability, illness or level of fitness weren’t an issue?

I’m kind of cheating on this one because in addition to advocacy, I run a travel planning company, so I’ve had the opportunity to travel all over, and I actually often feel more at home when traveling than in daily life – I’m an incredibly restless spirit and a wandering soul. My absolute favorite places to visit have been in Southern and Eastern Africa (Botswana, Kenya, Tanzania), with the caveat that we went the very luxurious route. So probably, I’d go back there, on a similar type of trip. The advantage of my travel there was that all of my travel was private (i.e. no big groups for social anxiety), there were more animals than people (basically my dream environment as a socially anxious introvert), everything felt incredibly open and spacious (physical openness and space helps me feel more mentally/emotionally open and free), and I had everything pre-arranged, so it took the “thinking” out of it once there, so to speak.  I didn’t have to come up with plans for each day, worry how to get from here to there, etc. It was all done in advance, and I had local experts to help us navigate. That was a huge mental freedom for me.

 

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You can see we really roughed it at the Sarova Mara Camp in the Masai Mara… 🙂

What sort of alternative treatments or therapies wouldn’t raise any eyebrows there? (Perhaps it’s ingrained in the culture, totally legal, etc).

Nothing outside of the norm that I can think of, but we are a pretty culturally diverse city, so I’d say that probably, you’re less likely to encounter raised eyebrows here than some places.

 

Which are the most and least affordable therapies there? How much do they cost in general?

In terms of alternative therapies, I’m not really sure. But I will say that we have a lot of studios that are starting to combine various mind/body activities and treatments – i.e. yoga studios with flotation therapy, access to massages, tissue work, and the like. Often, these studios/companies offer discounts for people who are new, package deals, and other discounts that help the cost.

 

How expensive is it to live with a chronic illness there? Any stats you’d like to share to give a clearer picture?

I’d say that like anywhere in the U.S, it’s expensive to live with a chronic illness, and it all depends on your insurance. I’m lucky that my husband works in healthcare and has fantastic insurance, but before we were married, I paid about $440 a month for basic insurance, and that covered very little, so I ended up paying out of pocket for a ton. I also could only be on generics, because otherwise I’d pay 50% of all medication costs, which would have probably been about $1000 a month. I have no issue with generics, but thre were times I had to not take a medication because it was only name brand and I could no longer afford it. And honestly, none of this considered particularly expensive or unusual for the self-insured around here. I know people paying a lot more. I think this is a U.S. issue in general.

 

What are the hospitals like in terms of service, quality of care, emergency room protocols, etc?

We’re lucky here in Philly, as we have some of the best hospitals in the country. Plus because many of them are connected to Universities, there’s a big focus on research, which also means we tend to be in the forefront with new trials, treatments, procedures, etc.   Honestly, if I had to move away from the Philly area, losing the hospital system would be a huge negative. It’s one of the city’s biggest benefits, in my opinion, for those living with chronic illness.

 

What should foreigners be aware of in regards to healthcare, if they want to visit or work in your city?

I think that for anyone coming from a country where healthcare is free/universal, there would be  a good amount of “sticker shock” in the U.S.  On two occasions, I’ve had to take relatives to the emergency room (albeit for accidents/incidents, not illness) while on vacation in another country, and we’ve paid less for the whole ER visit than I would for a nice dinner out in Philadelphia. Here in the U.S., bills could easily add up to thousands. That said, I’m not sure how this works in terms of those who are visiting and not part of the healthcare system here, but I’d imagine it could be even worse. To me, one of the most startling aspects is that they often can’t tell you even remotely how much your hospital visit/test/procedure/specialist/etc is going to cost. You go in and pay your copay, and then sometimes, often months later, you get a bill for whatever your insurance didn’t cover. This could be $100, $5000, or anything in between, and you often have no idea until you get the bill.

 

Where are you from? What is living with Chronic Illness like in your city? I’d love to hear!

 

The Great Outdoors

I hope some of my readers are old enough to get this blog title, so that I don’t feel too terribly old.

I am a person that, by nature, loves the fresh air and sunlight. I liken myself to a dog with it’s head out sticking out the car window. Sun on my face, wind in my hair, and copious amounts fresh air is my happy place. Add in exploring, and it’s basically my perfect day.

My mood has been particularly topsy turvy lately, and so I’m making a concerted effort to be outside as much as possible (when the weather cooperates).  The days are getting colder and darker, which I don’t love, but I’m trying to take as much advantage of the daylight hours as I can when I’m not working.

This past weekend, I decided to take a solo hike in nearby Wissahickon Park. The park is quite expansive, but parts of it are 15 to 20 minutes drive from my house, which makes it pretty convenient for an early morning hike. When I arrived, there were three other cars in the particular parking area I’d chosen, which meant that, unless people were just crammed into other parking areas, other hikers would be few and far between for the time being. Perfect. I spent about two hours hiking, all in all. I’ve hiked this area before, or at least some of it, so I experimented with trails I hadn’t taken before. I did know that there was a mini waterfall (I love waterfalls, and anything water-related!) that I hadn’t gotten to visit on prior trips, so I was determined to find it, and find it I did.

 

 

I arrived home before 11AM, several miles hiked, daily step goal for the already achieved, and renewed hope.  Being out in the peacefulness and relative solitude of nature, spending time among the changing leaves, with only the sound of running water, squirrels rustling through the trees, and the occasional fellow hiker is exactly what I needed.

 

Life with a mood disorder and chronic illnesses is never easy.  And sometimes, I’m not able to be as active as I’d like to be. But I’m vowing to spend as much time as I can in the great outdoors going forward. I may have to get creative in the colder months, because the cold and my body do not get along, but I will do what I can.

 

50 States of Hope

Every day, I read about different community projects happening in my home city of Philadelphia and the surrounding areas. It truly inspires me, and I think of the hope that these people are bringing – to those that they’re helping specifically, to the community, and to each other (being surrounding by others wanting to make positive change is certainly hopeful). And hopefully, pun kind of intended, to themselves. I know that for me, the fact that there are good people in the world, nearby even, and that we can bring about positive changes together gives me hope.

And yet I realize how few of these projects I participate in. Not because I don’t want to, but because I learn about them and think, “Oh I should look into that”, and then life happens and I remember about it too late, or there’s a scheduling conflict, or I get overwhelmed and need to take a step back from involvement. Or perhaps, I don’t hear about these at all. Maybe it’s a small, local project that I’m unaware of until it’s too late to participate. Or I hear about it after the fact somehow.

So I decided I needed to do something about this. I want to be more involved in these efforts, to bring awareness to some that may not get as much notice, and to participate in more of those that I keep saying “next time” to.  With that, I’ve started the the 50 States of Hope goal. I would like to be involved in at least one project that helps at least one person in all 50 states. Now of course, I could pick one large event for a cause that affects people in every state. And I might well participate in this simply because I think it worthy. But I’d also like to participate in those that are more local. Perhaps it’s simply a locally organized event of a larger organization. Or maybe it’s writing an anonymous letter of hope to someone struggling. Or a toy or book drive for children who are in the hospital.  It could be participating in something to help local community arts. Maybe it’s a local community garden project, or something to help local school children. What I want is to really feel my contribution is helping people, and that perhaps I’m bringing awareness to a worthy project or cause that may not have enough awareness on it.

But I of course don’t regularly frequent all 50 states to know exactly what local events and projects are going on. So that’s where you all come in. I’m looking for suggestions. What’s going on in your area? Do you have a project, perhaps one that helps your community, or one nearby, that you’re passionate about? Do you know someone, or know of someone, who could use a letter of hope. Do you know someone who runs a local project or campaign for a cause?  I’d love to learn more about it.

Now please keep in mind that I have a day job and am not independently wealthy so, while I’d truly love to one day do so, I cannot currently travel the country full time offering hope, and may need to get a little creative with some. And I’d rather it not be strictly a monetary donation, not only because I’m not independently wealthy but because I’d like to get my hands dirty a bit. To feel more actively involved, even if it’s simply collecting toys or books or games or school supplies or food or whatever it is. So please, send your suggestions my way either here, on social media, or via email at thespreadhopeproject@gmail.com.  If I am able to participate in the project you suggest, I promise to give it a shout out on social media, the blog, wherever I can, and if you’d like, to give you one too for making the suggestion (this part isn’t mandatory if you’d prefer to stay anonymous).

Thanks in advance! I look forward to hearing your suggestions!

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What Is Hope?

Since starting Spread Hope Project, I’ve been asked this question several times. It’s a completely valid question, being that my goal is to spread hope.  And yet, it somehow trips me up. Hope has always been to me one of those things that just is.  It’s difficult to describe without using the word itself. And yet, to each of us, it most likely looks a little different.

In terms of spreading hope itself, my goal is to help people that are struggling to feel that something good, positive, or at least better than how they currently feel, is possible. When used in the context or mental health, it could mean that their depression can improve with proper treatment, or that they’ll find a way to work through their anxiety, able to manage it better, or simply that the anxiety attack or bout of depression won’t last forever.  For others, it could mean learning confidence and improving their self-esteem when depression knocks it so low. For some it could have a broader reach – it could be feeling less lost in life, or less alone in their illness. It could be feeling like they and their life matter. It could be connecting with others who understand, who can offer support when needed, or who can help motivate and inspire them.

Hope is surprisingly tricky to describe in and of itself, I’ve found upon trying. It isn’t even, at least to me, a determined belief or strongly held conviction. It’s a possibility. A possibility that things could improve, that there’s something to look forward to. It doesn’t have to be based in fact or knowledge.  It can come from a feeling, even a flicker of one.  It can come from knowing that there’s even one other person who may understand, or one instance of feeling like you matter. It doesn’t require evidence or proof.  You don’t have to know that something will happen to have hope. You just have to feel that their may be the possibility. At least that’s how it seems to me.

And so, in my efforts to spread hope, I try to work with both the details and the general feeling. At times, I speak specifically to mental health and chronic illness. Other times, I try to focus more on confidence or self esteem. Other times still, I try to simply let people know that, however they are feeling, they aren’t alone, and that they matter.

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365 Days of Hope Starts Tomorrow

June 1st is the day, all! The day that we start our 365 Days of Hope campaign.  We are off to a good start: 107 items, places, and activities so far for us to take photos with/of in our Hope gear.  We have everything from sitting in a new coffee shop to being on top of a human pyramid, so don’t be shy about your suggestions! (Note:  it’s a family friendly project, and we would like to keep out of jail or the hospital, and keep our day job! :-). 

Why? Because we want to reach people in all places of all ages who enjoy all different types of things.  Chronic illness can feel isolating, and we want to let these people know that, whoever they are, wherever they are, whatever they like to do, they are not alone, even when it feels like it. And maybe we’ll even make them smile a little.

So fire away! Have a favorite outdoor activity? A favorite historic site, landmark, or city? Maybe you want to see us do something silly, or relive our childhood? We’ll be running through sprinklers and swinging on a swing set, so feel free to add more! We don’t mind being a little goofy in order to spread a little hope to those who need it. In fact, we’re pretty much kids at heart!

We don’t have an endless supply of money, so we may need to improvise on some suggestions, but we’ll do our best to make them happen!

Can’t wait to see your ideas!

Much love and hope to you all!