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.

 

mile9

Mile 9 of this past year’s Overnight Walk.

 

philly overnight

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!

 

montnarpasse

On top of Montnarpasse Tower in Paris

 

paris restaurant

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

 

paris street

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.

 

mara tent

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!

 

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It’s My First LinkUP Party! Thanks to A Chronic Voice

ReconnectingConfessing RelaxingRomanticizingSharing

Happy September, slightly belated! Recently, I learned of something pretty cool – LinkUp Parties hosted by A Chronic Voice (shameless plug, go check out her site and learn more about these!). The idea is, she posts writing prompts, we write about them, we share our posts, and we read and comment on others’ (there are more specific guidelines, this is generalizing it). I love writing, prompts, sharing, and connecting, so it seemed like a must do. This is the first time I’m participating in this LinkUp Party, and the writer-geek in me is pretty excited. The prompts for this month are:

  • Reconnecting
  • Confessing
  • Relaxing
  • Romanticizing
  • Sharing

I’ve decided to write a little on all five of the prompts because… well, why not!

Reconnecting

This one is super timely for me. This past weekend, my family suffered a tragedy.  It’s not my place to give details, as it wasn’t directly related to me, but my family members are dealing with an unfathomable loss. As tragedy tends to, it’s drawn us together, which has in turn made me realize how unconnected I’ve been to much of my extended family. I have cousins that I used to spend every holiday with that I haven’t seen in years. If it weren’t for social media, I am not sure I’d know what to half of my family is up to these days. I used to send birthday cards to even the most widely extended family members, and yet this past couple of years I’ve become increasingly bad at doing this. And so I’m actively working on reconnecting with family. Friends too, as I’ve been a bit of a social hermit lately, but family especially. Even if it’s a card, or a text, or a quick email to say hi or check in – we all live scattered throughout the country, many with families of their own, so in-person visits aren’t always feasible logistically. But even in this, I want to improve. I like road trips, I have airline miles. I should take the time and make the effort to see family more – time is our most valuable asset. It’s the one thing we can’t ever get back, and I need to be more cognizant of this and use more of my time reconnecting.

Confessing

Confession: I’ve been big time procrastinating and unintentionally self-sabotaging. Not in an obvious sort of way. Not the “oh yeah I’ll do the laundry tomorrow” and end up with no clean clothes type of thing. Instead, I’ve been procrastinating by continually brainstorming – subconsciously up until this point at least, but now that I’ve realized it the gig’s up. The thing is (confession part 2): I have a pretty serious fear of failure and rejection. Depression makes me convinced that I’m basically always going to fail and be rejected. And this fear often stops me in my tracks. So instead of actually writing pieces to be submitted, or starting on an advocacy project, I brainstorm about them… continually. I make lists. Lists of lists. I do everything but actually get started.  Now don’t get me wrong, brainstorming and list making can be incredibly useful and important tools… when they’re actually needed. But I’m realizing that I’m basically repeating lists and brainstorms over and over again in slightly different ways. I’m getting nothing new out of them. They’re just stalling me from actually beginning. But I just can’t make myself start. It’s like I sit down, ready to go, and poof, there goes every thought I ever had, gone from my brain, and I literally sit there staring. I know that deep down somewhere, it’s fear. And so, I’m trying to work through that. Even if at first I keep most of my articles or posts or projects or whatever it is to myself, I’m trying to get started on them. Even if what I end up with is a bunch of super rough drafts that I’d be embarrassed to show anyone in their current state, at least that gives me a starting point. Because true, the more I do, and the more I eventually, hopefully, put “out there” for others to see, the more chances I have of being rejected, or of failing. But also, the more chances I have of being successful as well.  And I also know that a sure fire way for me to stay afraid of something is to continually avoid it – because often, at least in my anxious brain, the anticipation is way more frightening than the actual situation itself. So I’m working on getting past that.

 

Relaxing

I am decent at relaxing physically, but relaxing my brain is a whole other story. Most frequently, I get engrossed in books, as a way of kind of “tuning out” the difficult thoughts and worries and fears in my head. But I also realize that relying solely on others’ worlds (via books) to escape doesn’t necessarily help me when I need my brain to relax and cannot simply pick up a book and read for an hour(s). So I’ve been making a conscious effort to meditate on a regular basis. While “the spirit is willing”, my physical commitment to doing this ebbs and flows – I’ll go a week meditating every night, and then miss several before I get back in the swing of it again. I’m working on making it more of a daily habit. I’m hoping that the more I meditate, that it’ll become easier for me to use my meditation techniques throughout the day, without having to stop, get out my meditation cushion, and do a full on guided meditation.

 

dog meditation

Sometimes my dog, Grace, “helps” me meditate.

Romanticizing

In my daydreams, my life has endless possibilities. I romanticize about how I’m going to grow my Spread Hope Project into an important organization and one day I’m going to run this successful nonprofit. I daydream about how I’m going to live on a farm and be more sustainable and have goats and a scottish highland cow (legit dream of mine!) despite the fact that I’ve never farmed anything in my life, am currently struggling to save my houseplants, and don’t know the slightest about raising farm animals. I daydream about traveling around the world – hiking in every country in Europe (not across Europe mind you, but some place in every country).  In the daydreams in my head, my life potential is pretty incredible. And in reality, I’m doing little things to help this along. But I also realize that reality probably lies somewhere between these ideal daydreams and the rut I’m stuck in now, feeling lost and like I’ll never get anywhere. Hence, my confession above, and my effort to actually take action, instead of just thinking and writing about them.

 

Mcow

Cow selfie in the Catskills

Sharing

I’m actually really good at sharing my thoughts, my emotions, what I’m going through. Becoming a mental health and chronic illness advocate and blogger has helped me tremendously in this regard. But what I’m not great with is sharing my time, or those I’m close to. Despite being an introvert that loves having a decent amount of alone time, when I want to spend time with people, I want to spend time with them. I’m not good at sharing in that regard. If I want to hang out or do something with you, I want to hang out or do something with you. Not you and your other friend and her cousin and her cousin’s sister. Just you. Despite my not having been great at connecting with people lately, once I’ve decided that I want to spend that time, I know that I’m demanding in it. Someone wanting to spend quality time with me is, above all else, how I feel cared for and valued and loved. I need to find a better balance in this for several reasons. First, not everyone is as quality time focused as I am,, and I have to respect that. We all feel cared for in different ways, and I need to be amenable to theirs like I ask them to be amenable to my need for time. Secondly, as an introvert with social anxiety, it’s rather unfair to say “much of the time I want to do my own thing and not be social, but when I want to be, you better be available and want to spend time together” So I’m working on trying to strike a more healthy balance, trying to share my time, and to share my loved ones.

So there you have it – my five prompts and my first Linkup Party! Definitely check out the other submissions for this month’s post over on A Chronic Voice!

The Bigger Picture

I was thinking about hope, as I of course tend to do often, and I realized that it’s been awhile since I really sat down and thought about the things in my life, right now, that make me hopeful. There are the everyday inspirations, of course – a beautiful sunset, a warm spring day, flowers in bloom, a positive conversation with a friend. And those things all keep me going in the day to day. They’re the pictures I post on Instagram in my #365DaysofHope campaign. They’re crucial for getting through the rough days, and I’m lucky to experience them. But I sometimes, ironically, forget to take stock of the bigger things that offer me hope. 

It’s not that I’m not grateful, or don’t appreciate these “big picture” pieces of life – I am, and I do. It’s that they sometimes get lost in the day to day. And I find that, when I sit down and list them out, when I truly focus on those hopes, it surprises me just how much is on that list. My brain can play so many tricks on me, making me depressed and anxious, bringing tears out of the blue, telling me I’m worthless and hopeless and incapable, that it becomes easy to spend my days just trying to get out of that, just to not feel so bad.  I often am so exhausted – mentally, emotionally, physically –  from that struggle, that I lack the energy to look beyond them. To look beyond “well today isn’t so bad” or “Ok I got through that” to “Wow, these other things offer so much hope.” And while it’s incredibly important to find hope in these moments of getting through, of not feeling so bad – because they often comprise much of our day and carry us through those rough times, I wanted to also voice those really positive, exciting, hopeful “bigger things”, for lack of a more eloquent phrase.

  • Family and loved ones. I am so incredibly lucky. I have a large family, a loving husband, and some best friends that have been by my side for forever, even when they’re not physically by my side.  I know that, even on my darkest day, I am surrounded by love. It may not always feel that way. I may feel terribly alone, because depression often makes us feel isolated. But I know, deep down, that I have so many people who love me. That offers me hope. (This includes my dog, Grace, who is the absolute epitome of hope personified… or dogsonified….)

 

IMG_1415

Gracie, the epitome of hope, finding pure joy in a discarded paper towel roll.

 

augelli fam

Yep, we’re those people. Our dog announced our engagement.

  • I have a new job that I enjoy, and I am learning more and more each day. It’s not a sector I’ve ever worked in before, and it gives me hope not only of my ability to grow and learn, but to expand my horizons. It’s not a path I’d previously considered, and I now feel that the opportunities for my future are broader.

 

  • If I haven’t mentioned it 1000 times, I’m going to GREECE! And then in June our whole immediate family (all 20 of us) are going to Spain. It’ll be my second time in Spain in 7 months. I’m so lucky to be able to see the world like this, and to spend quality time with my loved ones doing so. Travel always makes me feel hopeful. It helps me view the world on a larger scale, and it feels incredibly freeing. Often, I find that a literal change of scenery does me a world of good (no pun intended – Ok, maybe a little).  Not to mention that as a travel planner, blogger, and someone that wants to spread hope around the world, it makes me feel hopeful for ways that I can expand my work.

 

travel collage

Some of my many travels. Clockwise from top left: Amsterdam, Paris, Jordan (Petra), Olympic Rings in Barcelona, Ngorogoro Crater in Tanzania. 

 

  • This Spread Hope Project. I have no idea where it might take me. But I see possibilities. It offers me a purpose, a way to help others, which is something I crave. I have  big dreams for it, and even if those adjust, or are ultimately not realized to their full extent (I’m a big scale dreamer), it shows me that I do have the ability to help people and make a difference, even if on the smallest scale for now. And I have met, and continue to meet, some amazing people on this journey.

 

  • The future. My husband and I want to own a farm one day. We want to grow fruits and vegetables. He wants goats and chickens for milk and eggs, and I want a Scottish Highland Cow because they’re adorable and I’ve always wanted one (you now see why I’m the dreamer and he’s the realist in our marriage).  He has generously said that we can have up to three dogs one day, which I feel is a fair compromise since he’s fine with the one we have and I want to rescue every dog ever on the planet. Big emphasis on one day for the dogs, maybe when Grace gets older and doesn’t take the strength of the World’s Strongest Man to walk her. Even though these goals will take a lot of time and energy and funds to accomplish, we have them. Having dreams like this, together, for the future makes me so hopeful.

 

Mcow

Being silly with Scottish Highland Cows at a B&B in the Catskills. (Note the HOPE shirt!).

 

MB cow

More silliness at the B&B. 

 

I found that, just writing these down, I began smiling. My mind starts to fill with ideas that give me further hope. Ideas for my travel business and blog. Ideas for Spread Hope Project. Excitement about our future farm (and cow! and dogs!), and all the things we could do with it. Yes, a lot of it is my mind wandering, as it does so… err….well? But they give me something to reach for. Some “one day”s. And when you have “one day”s, you have hope. Because it means that, even if it seems so far off, almost impossible perhaps, you still can see the possibility, or at least consider that there could be the possibility, of a brighter time. 

 

Spread Hope This Spring

It doesn’t feel like it here today, but it’s finally SPRING! Which means the days are getting longer, and eventually, I’m sure, it’ll get warmer. Spring is nature’s hopeful season. Animals come out of hibernation, flowers bloom and trees bud, people seem to come out of virtual hibernation – out from behind heavy jackets and hats and scarves and the warmth of their houses – to enjoy the outdoors and interact with each other once again. So it seems the perfect time to focus on spreading hope – both to others, as well as to ourselves. Not sure how? Here are a few ideas:

  • Plant something – a flower, a vegetable plant, a tree (local organizations often hold tree-planting days).

 

plants2

 

  • Purchase something from a local farm/orchard/nursery/etc.Their livelihood often depends on seasonal business, and may be beholden to things outside of their control – like the weather – and each purchase can help offer hope of a season that allows them to support themselves/their families.

 

  • Smile at people you pass when walking outdoors. Not creepily, but a pleasant smile, wave, good morning, etc. Doesn’t have to be everyone, but just do it occasionally. I say outdoors because I notice this seems to feel less weird to people. We have no issue waving at the other lone morning jogger we pass, or the person walking the dog down the street. But most of us are significantly less likely to walk through the mall or grocery store randomly smiling or waving at people, and I get that 100 percent.

 

  • Donate goods or services. Go through your closet. Donate already read books to a local library, mobile library, or used book store. Bake for charity. Whatever it is you can offer.

 

  • Send a card or a note. Not an email or text or tweet. Write a “thinking of you card” to someone going through a tough time. Or a thank you note to someone who’s done something nice. Or a “just because” to a friend. This isn’t spring specific, but let’s face it – most of us are feeling more generous in spirit when it’s not 20 degrees and bomb-cycloning outside.

 

  • Let out your inner 1980s (or earlier) child. Remember when playing outside was the reward you got for a job well done/being well-behaved/etc? Put down the electronics, go outside – on your own, with friends and family, with your dog, whoever! – and do something fun/silly.  How does this offer hope? It takes us away from our daily routine, it takes our mind, even if momentarily, off of whatever it is that we’re struggling with, and it reminds us, and anyone else involved that we can find small moments of joy in life.

 

What are your favorite ways to spread hope, or stay hopeful, during the spring?

 

Pardon the Interruption

Sorry, I couldn’t help myself. In addition to loving hope, I also love puns and cheesy word play. So, pardon the interruption in my blogging. It’s been a minute, as I’ve had a lot of exciting things going on. Namely, I got a new jobby job, which has been keeping me pretty busy. And my travel work has simultaneously ramped up (good things come to those who wait, right?), keeping me busy in my spare time.

But I haven’t forgotten about Spread Hope Project. Far from it. I still have my dream of spreading hope as far and wide as possible, and my more  feasible goal of one day turning SHP into a real, living and breathing organization (with more people breathing in it than just myself).  I’m working on giving my mission and vision for SHP a more solid description, because it’s tough to explain what you do with “I just want to help everyone and give them hope.”  The basic idea is, in addition to my photo taking and individual participation in, and organization of, events,  I want to partner with local and hyper-local organizations to help get the word about their work and events as well. A collaboration of sorts.  I want to serve as a resource, a liaison, between local organizations doing charitable work, and people who want to participate in those activities. Because I know first hand that it’s tough as a solo person or small organization with a big dream to compete with the “big guys” (or ladies) when it comes to marking, promotion, and resources. And while social media certainly makes it easier, the more people you have helping you out, the easier it becomes.

So there’s that.  As for myself and Spread Hope Project, here’s a few things that I’ll be personally participating in/doing:

  • I signed up for my 5th Out of Darkness Overnight Walk for Suicide Prevention. This cause is very personal and incredibly important to me. I’ll be walking 16-18 miles, overnight, this coming June, in no other than my home city of Philadelphia! I have to raise $1000 to walk. So far I’ve raised $315. If anyone’s so inclined, donation link is here.  You can also help in ways that do not include monetary donation, so feel free to reach out to if you’re interested in that.

 

  • I *may* be walking the Get Your Rear in Gear Philadelphia walk for Colon Cancer.  Potentially more coming on that soon. Anyone else in the area planning to walk? Let me know!

 

  • I’m going to Greece in just over a month! I’m attending a conference in Athens, and then heading to Santorini and Crete. Greece has been on my travel bucket list for a long time.  Keep an eye out for copious Spread Hope in Greece photos in the next month or so.

 

  • My family is doing a full fam (20 of us) trip to Stiges, outside of Barcelona, this summer. Just booked the flights for that. I love Barcelona and Spain. It’ll be my second time in six months. I’m super lucky. Again, lots of Spread Hope in Spain pics on the way in the next few months.

 

  • #SpreadHopeAmbassadors program is still happening. If you’re interested, reach out to me! And don’t forget to hashtag those photos!

There’s probably more, but this is running long, so I’ll stop for now.  Don’t forget to like us on Facebook, and follow us on Instagram, where we post each day as part of the #365DaysofHope Campaign!

Peace, love, and HOPE!

~My

Accountability, Fear, Anxiety, and Hope

Happy Sunday! I hope you’ve all had a good week. Before I continue, I have to give some gratitude:

THANK YOU to all who have signed up to be Spread Hope Ambassadors.

If you haven’t yet, but are interested, reach out!

Today, I want to write a bit about accountability. To ourselves. It wasn’t a 2018 goal of mine per se, but more of an evolution of my life goal. I’m pretty good at holding myself accountable to others. It’s rare that I tell someone I’m going to do something, and then intentionally don’t. Sure, life happens at times, or you forget here and there. But it’s a rare day that someone can’t count on me.

But the person I do often break promises to is myself. Not intentionally, of course. But fear and anxiety often get in the way. Or the fact that I don’t feel it’s making a difference. Or lack of self-confidence. Or hypomania 1000-things-in-my-brain-at-once creeps in. The number of times I want to do something and then manage to talk myself out of it by thinking “I’ll just be rejected. I won’t be good at that. It’ll cost too much (even when the cost isn’t all that high.” Or “I tried this instagram campaign/hashtag/blog series and nobody cared.”  Or “I want to organize this community project but nobody would come.”

And true, you have to be reasonable. I’m a very small (one-person), self-funded organization right now. I can’t spend $1000 on a community project that I don’t reasonably think anyone will come to.  Honestly, I probably couldn’t spend $1000 if I thought everyone would come.  But there’s logic, and then there’s fear and anxiety that you can spin to sound a whole lot like logic if you want it to. Because sure, I know people that could help me do something similar that wouldn’t cost $1000. Or I could find a local business to partner with. Or some other option, I’m sure.  And sometimes, even when there is logic behind a reason, you have to weigh the short term logic for the long term – i.e. someone going back to school might take time and funds now, but the benefits of getting this new degree/certification/training may be worth it long term, for any number of reasons.

And so I’m determined for this year to be the year I hold myself accountable to myself. Not in exchange for being accountable to others, but in addition. This is the year that I’m going to find a way to things, or at least do my utmost to try. And sometimes, it might not work out. I might have to throw in the towel and say, “I really wanted to hold this community event, but I’ve looked at it from every single angle and it just isn’t feasible.” But then I will also make myself look at other options: can I do something else instead? Can I plan ahead and do it next year? What do I need to make this, or something like this, happen – if not now, then within a certain time frame?

When I was young, there was a sign hanging in our gymnastics gym (bonus info: I was a highly competitive gymnast for 14 years) that said,“Whether you believe you can or believe you can’t, either way you’re right.”  As a kid, I didn’t really get it. In fact, the “if you believe you can’t you’re right’ sounded kind of harsh. And as much as I honestly really dislike someone throwing an inspirational quote at me when I’m battling severe depression or anxiety, thinking it will fix it, occasionally, there are a few that I need to remind myself of. Because lately, I’ve noticed that my biggest roadblock is often myself. Not always, of course (I’m 5’0, I’ll probably never dunk a basketball), but often. Knowing that is both a little disconcerting, and also quite freeing. Because while it makes me feel significantly more accountable, it also gives me significantly more control. And I certainly have plenty of times when my brain is not 100% in my control – anxiety, depression, hypomania lie, often. But at least I know where to start. With myself. I have this ability. And that makes me pretty hopeful.

 

To Family, Old Memories, and Making New Ones

To clarify, I mean new memories, not making new family members. Though more babies are born in September than any other month (note: that’s approximately nine months from now), so I guess ’tis the season. But nobody involved in this story is planning on that immediately, so we’ll stick with new memories.

First off, happy holidays, everyone! I hope you had/are having/will have a great one!  This post was inspired by our family Christmas yesterday.

There’s some family history here, so bear with me. My grandfather, my mom’s dad, got a bottle of Galliano liqueur from his boss during his first year of working as an accountant, when he was 22. He would have been in his 90s today, so we’re going back 70ish years. It remained unopened – why I’m not sure, but probably for the same reason people frame the first dollar they made in their business, instead of spend it. Approximately 39 years ago, as he was dying from ALS, he gave it to my mom. I was 10 months old at the time, so needless to say, I do not remember this or him. I have a great memory,  (I can remember back to when I was about 2 1/2), but not that great. So this story is all passed down via my mom.

The Galliano, still in its original box, has made – and surprisingly, survived intact – every move with my mom since then. Buffalo to California. California to Georgia. Another move in Georgia. Georgia to New Jersey. And finally, to the house in New Jersey where I grew up and my parents still live. She’s been saving it for a special occasion. In this time, her kids and stepkids (there are 5 siblings total) have all gotten married, and there are now eight grandchildren. So I feel like the clock has been ticking on the Galliano. A bit of a “if not now, when?”.

Yesterday, as myself and my husband, my brother, his wife, and their two kids sat in my parents’ kitchen, my mom declared, “Let’s open the Galliano tonight!”. Apparently, its time had come. Let me pause here to say that we actually had to google what exactly Galliano was, other than generally knowing it was a liqueur.  Also, at least three of us were nearly certain that the bottle would contain, as my brother called it, some of the best vinegar in existence. I mean, it’s in a glass bottle and, while it has sat in a box all of these years, is over 70 years old. The chances of it not being skunked were pretty slim, in our opinions. But this bottle had survived two owners and at least six houses, probably seven (I’m not sure if my grandfather received it while living in the house my mom grew up in, or the one before). We owed it the dignity of a fair chance.

So, we opened it. Low and behold, it was perfectly fine. I can’t really compare the taste to anything else I’ve had – it’s called an herbal liqueur, which I anticipated to taste, honestly, pretty rough even if not skunked. It conjured up images of liqueur made from parsley, oregano, and other questionable ingredients. For the record, it didn’t. At least not to me. The closest thing I could compare it to is limoncello, but it isn’t nearly as, well, lemony, and has a different finish. I’m about to make it sound disgusting, which it is not, but it almost has a finish akin to when you’ve just had a throat lozenge. Not the taste, but the airy, passageways cleared out, feeling.

As we toasted each other and family and Christmas, it felt like the passing of a torch somehow. A nod to the memories of the past, and a commitment to those of the future.  A lot has happened in those 70-odd years since my grandfather got that bottle, and the almost 40 years since he gave it to my mom. My grandma (my mom’s mom), who survived her husband by 30 years, passed away in 2008. She had nine grandchildren, and I believe three great grandchildren, two of which were only 3 or 4 years old at the time, and may not remember her. Were my grandparents still alive today, they’d have 9 grandchildren and 10 great-grandchildren. Their own three children have traveled the country and the world. They’ve made countless memories over the years, some together, and some with their own individual families. In these years, the remainder of my grandmother’s’ siblings have all passed away, and as my grandfather was the youngest of his siblings by something like 15 years, I’m guessing his have too, though we aren’t in contact with them so I can’t be sure.

The Galliano opening was, in a way, the end of an era. Of the nine of us grandchildren, only two have any memories of my grandfather, and even those are probably a bit hazy, though I can’t speak for them. We are now the ones getting bottles of wine or bourbon or other presents as a thank you. Who possibly have a gift still in its packaging years after the fact, that we haven’t yet brought ourselves to open and will one day pass down to generation that follows, still in tact. And if we are all lucky, we are the ones that, years from now, when the current children in our family are all grown and perhaps have children of their own, will sit around recounting stories and memories together one holiday and say, “Remember that Christmas when we finally opened the Galliano?”.

 

gallian

The Galliano, post sampling, on my parents’ kitchen counter. 

 

 

Nostalgia and Hope

To preface this, I have to explain a bit about my background, career wise. For the first five years of my adult working life, I worked in corporate fitness (I have a B.S. in Kinesiology). After getting my Masters in International Marketing, I started my own travel planning company, Chimera Travel, that I ran full time for eight years (shameless plug, you can visit my newly brought back to life travel blog here). But life happens, and with changes in technology and the economy and numerous other factors, I needed some extra help financially. So I took a part time position at a front desk, which has grown into an almost full time position, while still running my travel business. In the midst of all this, I became a significantly more active mental health and chronic illness advocate which is currently out of the goodness of my heart – i.e. I make zero money and sometimes spend money doing this. And believe me, I don’t do this for the (hypothetical) money but I can’t do full time, or even significantly part time, and still have a roof over my head and eat. So, I have my numerous jobs/would be jobs.

Yesterday, between my job job and yoga, I sat and wrote/blogged and had coffee at my favorite cafe. When I previously lived in Old City Philadelphia, I my apartment was literally around the corner from this cafe. I was there probably three times a week on average. I worked solely for myself at that time, and I’d meet friends there for coffee or breakfast, spend my days enjoying free refills and snacks while planning client trips, blogging, working on business marketing. I knew all of the staff, and many of the other frequent customers. I’d run into neighborhood friends there almost every time I went. It was like my Cheers, but with coffee (I also had my “Cheers” bar/restaurant, which was two doors down from my apartment, but that’s a different story).

So yesterday, I sat down at the cafe, ordered a coffee, and took out my notebook and computer to start working. I had some blogging and journaling planned. And I found myself almost in tears with nostalgia. I can’t really call them sad almost-tears, nor were they happy. They were nostalgic ones. I can’t explain it any other way.  I sat there with my coffee, hoping my face didn’t betray how I was feeling. And I began to understand that the way I remember feeling in those days was how I was meant to feel. I had felt a purpose. I felt motivated and inspired. I felt control over my life, at least pieces of it. No, I couldn’t control when a client’s flight was cancelled, or when someone had a last minute request on a day I’d planned to take as a wellness day. But there’s always going to be something like that, in any job. Or volunteer opportunity. Or life. And if it’s not your job or client or organization, it’ll be your child waking up sick on a day that you planned to be out and about and getting things done. Or your car breaking down when you absolutely had to get to an important meeting. Or something else.

 

coffee

From my favorite cafe. I love their mugs – and free refills! 

 

My point is, there’s always going to be something out of our control, as much as I dislike this (I need to work on my letting go). But those days in which I worked for myself, I had control over so many important factors: the company as a whole – the direction it went (or ideally went), the mission and vision, the goals, the values it all embodied. I had control of the marketing, both in print and online – not only the content, but what I chose to do/not. The target market. Not to mention that, client emergencies aside, I got to make the schedule. I chose when to start and end work. If I needed a personal or wellness or sick day, I took it. If I had to make it up later by working longer other days, I did. I made those decisions.  For someone with chronic illness, that’s particularly important. And possibly, most importantly, I felt like I was working toward something and for something. I had goals for my company, and for my life involving it.  I felt like a made a difference – not necessarily in the world at large, but to my clients. I felt important to my little piece of life. Because without me, the business wouldn’t run, and the clients wouldn’t get their travel planned by my company.

So I sat there remembering this feeling. Being reminded of what it felt like to really feel feel connected to my life’s work, like what I did 40+ hours a week mattered, not only to me, but to others too. I helped people experience the world. They explored new cultures and traditions. They had their first experience ziplining or swimming with dolphins or hiking a mountain they always hoped to hike.  They had exciting honeymoons and destination weddings. They had family reunion trips.  I had clients who came to me never having owned a passport and, after their first trip overseas, decided to take one every year.

And when I think about being able to help others, to Spread Hope to others, and to potentially be able to combine my love of helping people with my love of helping people travel (and naturally, traveling myself), I think about how amazing that would be.  To get back to that feeling of purpose, that I’m doing what I’m supposed to be. That ability to feel happiness at how I’m spending my days. To feel like I’m making a difference in my little corner of the world, both to others and to myself.  And thinking about it, while a bit sad at not being there, makes me hopeful. I begin gathering ideas, almost involuntarily (though certainly welcomed). I don’t try to, they just fly into my head. I get inspired and motivated.

Now if I could only stop the doubt from creeping in. The doubt that says that, once again, this won’t work well enough. That something – the economy, life, etc – will throw me off and I won’t be able to push through it to ultimately be successful. The doubt that says it’s too risky, that I’m being rash and careless. The doubt that says others will be disappointed me, will doubt me themselves.

And if I could only get some help. Not financially, but in the form of support. If I had friends that would be willing to help me create and run projects for Spread Hope. Or who would help me by participating – whether it’s hashtagging their instagram photos for a photo campaign, or volunteering with a community project I organize, or just sitting and helping me brainstorm ideas. And I know it’s a big ask. I know everyone’s time is so valuable. But we all need help sometimes, and I’m really terrible at asking for it. I’m strong and I want to be able to do it all on my own. And often I think it’s too forward to say, “Hey I want to do xyz will you help?”, despite the fact that if someone came to me and said something similar, I’d probably be super excited (assuming it wasn’t some sort of selling thing). Or I always think, “nobody will say yes. Or they’ll ‘like’ the status but not volunteer”, so what’s the point.

But I need to get over that fear. I need to reach out and ask for help. I may not get tons of help by doing so, but I certainly won’t if I don’t.  So I’m starting 2018 with some opportunities, and call outs, for help with Spread Hope Project… projects. Stay tuned!

And on this shortest day of the year, I hope it helps to remember that it literally only gets brighter from here – and I’ll do the same.

Happy Solstice, and Happy Holidays!

 

 

2017: A Year in Review

So, 2017 was a huge year for the Spread Hope Project! Here’s a brief recap:

  • We got our blog underway (this was slightly before 2017, but we’ll count it!)
  • We gained over 200 followers on Instagram
  • We started our Facebook page
  • We started #365DaysofHope
  • We completed our fourth Overnight Walk for Suicide Prevention
  • We took Spread Hope photos on three different continents and numerous states
  • We debuted a bunch of Spread Hope Gear, including shirts (for all types of weather), mugs, pet apparel, and more!
  • Met so, so many awesome advocates, and truly amazing people in our first full year!

Oh, and I got married. There’s that!

 

collage

Just a bit of what I we were up to in 2017!

So what’s in store for 2018?

Well, we’ll I’ll be continuing the 365 Days of Hope posts through May 31st, as this year’s started on June 1. Plus, we’ll be announcing our Ambassador program and some new community based projects.  Oh, did I mention we’ll be headed to Greece, and back to Spain?

Of course, we’re always looking for new local partners, so if you’re interested in a dual awareness project, we’d love to chat with you!

 

 

 

Giving Thanks

Last night I watched the local news, and saw something miraculous – every single story was positive. The news was filled with groups donating food to those in need, Thanksgiving drives held by local organizations, individuals giving of their time, money, resources to help others. It was the only time I can remember, and certainly in recent history, that there was not one negative, sad, alarming, concerning news story. (There were plenty in the national news, but let’s not focus on that for a moment). It was all about giving. And this, for that half hour, filled me with hope. Because it proved to me that good still is all around us. It may at times be tougher to find. We may need to look deeper, to squint a bit to see it through to jumble of negativity, but it’s there.

And so, I wanted to give thanks for some pieces of my life that I feel most grateful for.

  • My husband
  • My family
  • My closest friends who have been with me through everything
  • My dog Grace
  • Having had 10.5 happy years with my old dog Cinn before she passed.
  • A home, that I own.
  • Plenty of food
  • The means and opportunity to travel often
  • My creativity and imagination
  • My dreams and my ability to maintain hope (if sometimes only a sliver of it) even in the darkest times
  • A strong mental health and chronic illness support network
  • My therapist and my meds (completely serious)
  • Having health insurance, without which my meds would bankrupt me (really).
  • The many experiences in my past and present that have made me who I am today.