Letting The Light In (Weekly Roundup)

This week brought ups and downs (as life with a rapid mood cycling disorder is likely to do). I had some really amazing advocacy opportunities that I’m super excited to be a part of, which I’ll be sharing shortly, and I also had a couple of pretty difficult days.

One thing I noticed, as I was posting my daily “Hope Is” pictures on Instagram, is that a good number of them involved light in some way. This isn’t a novelty in the context of hope – we often hear phrases like “the light at the end of the tunnel”, which illustrate hope as a light that leads us from the darkness or a difficult time. Still, I loved seeing that in looking for my daily images of hope, I was literally drawn to the light as a visual representation. I hope that if you, too, are struggling this week, perhaps these thoughts will help give a tiny bright spot in your day as well. I’ve also changed up the format of this one because, well, I really love these photos, these visual representations of hope, and I wanted to make them slightly larger.

Yogi Tea Wisdom

Hope Is living by your inner knowledge and strength. I love the inspiration I get from my Yogi Tea bags. Sometimes, we just need these simple reminders. Even when we struggle to see it in the depths of depression or anxiety, we have so much strength within us. Even just getting through the day sometimes takes so much strength. Never forget how strong you are (or at least try to remind yourself repeatedly!).

Be silly, be honest, be kind

Hope Is reminders like this that make me smile. We were at a friend’s house over the weekend and I saw this, and asked if I could snap a picture of it. If some asked me to give a brief directive on how to live, this might about just some it up. And of course, be hopeful.

Sunrise over Collingswood, NJ – post early morning yoga class

Hope Is a gorgeous sunrise literally brightening your commute to work on a cold, January Monday morning. I take an 6AM morning yoga class at least one day a week as part of my yoga teacher training. While getting up in the 4 o’clock hour to get ready for the day (since I leave for work right from yoga) isn’t my favorite thing to do, I love coming out of yoga to see the sun rising over the main street.

Orchid that my parents got me for Christmas

Hope Is the gift of a beautiful orchid in full bloom. I love orchids. I’m not sure how it started, but a while back, each time I was going through a rough time, I got an orchid from… someone… it varied who the giver was, or how the orchid came into my life. But each time, it seemed as if I was on the precipice of something, I would get an orchid, and I would, amazingly, manage to keep it alive, to keep it blooming and beautiful, and this somehow restored my belief that I’d come out on the other side of whatever I was going through and be OK. So the orchid came to symbolize a sort of hope during life transitions. My parents got me this orchid for Christmas, and so far, so good on the keeping it alive front. And as even my not so green thumb knows, orchids need the light to thrive.

Sign-making party goodies!

Hope Is getting ready for a Spread Hope Project Sign Making “Party”! A while back, I wrote a blog post asking the question “If I Made You A Hopeful Sign, What Would It Say?” I subsequently posted this question on my social media outlets, with the acknowledgement that answers may, unless specifically requested, actually wind up on a sign that I made, and be posted on social media. I got some amazing responses, and now, I’m keeping good on my promise. This coming Sunday, a few friends and I are getting together to make signs old school arts and crafts style. It’s not to late to request a sign, so if you have a something hopeful you’d like to see on a sign, let us know!

Luminaries at the finish line of the Overnight Walk for Suicide Prevention 2018

Hope Is thousands of people walking 16-18 miles overnight for suicide prevention and awareness. These luminaries lit up the finish line of last year’s walk in my home city of Philadelphia, and how amazing that they spell out the word HOPE!

I just signed up for my 6th Out of the Darkness Overnight Walk for Suicide Prevention. This is an absolutely incredible event that, despite the sadness of loss that brings so many to participate, offers hope that with each step we take, we’re raising awareness, eroding the stigma, and offering hope to those who struggle, so that they know they’re not alone. Shameless plug here – I need to raise $1000 to participate each year. If you’re inclined and able to donate, the link to my page is here. No amount is too small, as there’s no minimum, so you can literally donate $1.

The light catching the trees in my neighborhood just right to welcome me home from work.

Hope Is the light catching the trees just right, so that even the stark, barren trees of winter look radiant against the lit up sky. I love the idea that even in the cold, dark days of winter, where there’s little blooming (except my orchid!) and life just seems to be stalling, that we can be reminded that if we look at it from the right angle, it can still look beautiful, even in its starkness. I find this can be applied to my life as well. Of course just “looking at it differently” doesn’t magically make my anxiety or depression vanish – they’re illnesses, and you can’t cure an illness by changing your attitude or viewpoint. But sometimes, when I’m really struggling with the way that I’m feeling about myself, it helps to remind me that there may be another way I can look at the situation to get a slightly different view of it. I’ve found that in my advocacy work – there’s nothing good about having a chronic illness, but having my illness has led me to some amazing communities and people, to my work with Spread Hope Project and my other advocacy efforts, and but for my illness, I likely would not have been part of any of that.

If you have pictures of light (literal or figurative) that’s inspired you, I’d love to see them!

With Hope (and light!),

Maya

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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!