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!

 

A Note to Those Experiencing Thoughts of Suicide

September is National Suicide Prevention Month, and September 10th is World Suicide Prevention Day.  Suicide Prevention is a cause near and dear to my heart. A family member (my mom’s cousin, who was my second cousin) died by suicide approximately eight years ago. I have friends who have struggled with suicidal thoughts and have attempted. A family friend died by suicide this past year. I have struggled with suicidal thoughts myself, and have battled a rapid mood cycling disorder my entire life. Being a suicide prevention and mental health advocate is, for me, one of the absolute most important task I have undertaken in my life.  It can literally save lives.

I’ve previously addressed the myths about mental illness suicide, the ones that create such a stigma and make the topic still so taboo to many. And addressing those myths is extremely important. But today, I would like to “speak’ directly to those who may be experiencing suicidal thoughts, or bad depression, or are struggling in some other way.  Here’s what I want to say:

I know you feel alone. Having a mental health condition can feel incredibly isolating.  Depression often makes it feel like nobody will ever understand you. I know it’s dark. That right now, it’s impossible to see any light, any hope. I know you may even at times blame yourself for how you feel.  Feeling guilty about your illness, the way it affects your life, and others in it. I’ve been there. Being ill, and then taking the burden of that illness on yourself, blaming yourself, can make the pain feel inescapable. I’ve felt that. I know.

But I am here to tell you that it is not your fault. You have an illness, and  you are not alone. One in five people in the U.S. has a mental health condition. Twenty percent of our population is with you. Not perhaps experiencing exactly what you’re experiencing – we are all unique, as are our situations and illnesses. But we, too, struggle. We too, know the lies that depression can tell us, and how convincing those lies can be. We too know what it’s like to feel utterly alone in this world. To feel like you don’t matter, to feel like you aren’t enough.

And I bet you could look at so many of us and think, “Look, they still manage to ‘have it together’. They aren’t alone. They matter.” Or maybe you look at us and think, “They don’t have it all together, but they’re still doing so much better than I am. They’re strong, and capable and getting through this.”  Well I’ll tell you something:  we’re looking at you and thinking the same thing. We’re thinking how strong you must be to go through everything you do.  We’re thinking how much you inspire us, motivate us, experiencing all you do and still fighting each and every day.  Because you’ve made it through every day so far, and that’s incredible. Or maybe we’re looking at you and thinking how much you matter. How “enough” you are.

So please, if you are this person, sitting there in the dark, not feeling like there’s anyone who understands, who you can reach out to, reach out to me. Because I’ve sat there in the dark feeling that same way, possibly by your side, in reality or virtually, near you and so many others, but feeling so hopeless and isolated.  And I’m here for you. Because you do matter. You are enough. And you are not alone. 

 

You are not alone.

 

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!

Self-Care Isn’t Silly, But I Am

Did you know that we’re swiftly approaching National Self-Care month? That’s right – it’s September (which is also Suicide Prevention Month, more on that in another post). Self-care is incredibly important when you have a chronic illness or mental health condition, and I love that there’s a month to specifically hone in on it.

 

National Self-Care Month

 

To honor this, I’m going to be doing a #30DaysofSelfCare campaign throughout the month of September. Each day, I’ll be IGing, tweeting, posting, otherwise sharing a different form of self-care. My goals of this campaign are three-fold:

1.  Illustrate the importance of self-care, and that it’s perfectly OK, even vital at times, to take a little time self-care every day.

2.  Offer ideas, and get suggestions, for ways that you can self care – both conventional and less so. I am hoping that my “less traditional” methods may help to show that self-care doesn’t have to be daunting – you don’t need to meditate for an hour or run 5 miles. It can be quick, simple, and even goofy/fun (more on that in a minute).

3. Kick my own butt (figuratively) into gear, and make sure I hold myself accountable for my own self care. I know this is something that I need to focus on more, and this is a perfect opportunity.

So what do I mean by self-care can be silly or goofy? First off, I let me state that I don’t mean the idea of self-care. I mean the actual actions. Sometimes, especially if we’ve been feeling particularly depressed or anxious, a good laugh, getting in touch with our inner child can greatly help. Often, it helps to take a break from focusing on “real life” concerns for a minute – like work/career, school, household chores/tasks, finances, etc – and bring ourselves back to a time when we didn’t have to worry about those issues as much. Or maybe it helps us to take a break from all the bings and beeps and stimulation of our electronics, and get outside, or in nature, or spend time “playing” (I mean this in a PC way, for the record – like actually playing games or building pillow forts or whatever silly, fun thing you want to do). Perhaps it’s putting our most ridiculously comfy, oversized PJs and snuggling up, when we don’t have the energy to do anything else.

I find that, for as much as I worry about… everything… I’m really a kid at heart. I love returning to my inner child, and to just letting go and being innately me. Depression and anxiety make me often feel so old , so to speak – it can be tough to have fun when you’re constantly anxious and fearful, or when your brain is continually telling you how awful you are. So I intend to take full advantage of self care month, and of my #30daysofselfcare campaign, to encourage my natural (when depression and anxiety aren’t forefront) youthful curiosity and free-spiritedness.

 

30daysofselfcare

 

What about you? What fun, silly things do you do for self-care? I’m always looking for more ideas, so I’d love to hear yours (warning: I might use these ideas in my campaign, and I’m happy to give you credit if I can tag you!) And of course, you’re all invited to take part in the #30DaysofSelfCare challenge! I’ll be posting updates on this blog, but to follow along or join in the challenge, follow Spread Hope Project on Instagram.

 

Guest Post! Journey to Hope

Back again with another amazing guest post, from a friend, who wanted to share their story. As always, I offer people the option to post under a pseudonym or anonymously. For these purposes, we’ll call the author of this post Inner Peer Supporter. Without further adieu, I’ll let our guest poster take over from here!

 

JOURNEY TO HOPE: MY STORY

Fall 2016

I was sitting in a peaceful room giving peer support to a wonderful person who had seen so much horrific suffering in her life. I listened quietly and felt emotional, empathy and concern for her being. The interesting thing was when I went home that day some how I didn’t allow her suffering to eat away at me and I knew for the first time that I was beginning to get stronger.

So how did I get to this place from my own suffering? This is my journey.

Underlining Reasons For Life Long  Anxiety:

Fall 1980: I was in the first Grade ready for the first recess of the day. I walked out the door and found myself being shoved around by fellow students. This marked the beginning of always running into some people from time to time who showed their resentment to me for being just me.

I was a shy meek kid who wasn’t perfect, but was good hearted and sensitive to the point that I always absorbed how I was treated and at young age defined myself as less then others. I recognise now that I had anxiety then. I always sat at the back of the class afraid to be ridiculed. Words have the power to harm and when I formed the opinion of myself as being less then others that view stayed with me until I was an adult.

My anxiety and fears had shaped me too, preventing myself from properly progressing. I remember one teacher I was scared of in a regular grade 5 class who ridiculed me for being in remedial for math. Kids in special education classes were labeled as retards then. Students in regular classes and some teachers were biased in their treatment as a result.

I remember an Olympic day in grade 4 where all the students go around the school competing in sport competitions. I was intimidated by my bullies and didn’t do well. At the end of the day the teachers gave out gold, silver, and bronze badges for participation and my teacher instead gave me a nil certificate for failure. Everyone and the teacher laughed.

I could go on with examples, but I think you get the picture that my childhood was filled with adversity that shaped my perception of myself. One side note of mention is that If I ever said something wrong or stumbled I rejected myself even more as a child.

My family was oblivious to my plight, because I never told them anything. Everything was buried within. That is how I dealt with it.

I went through high school never really fitting in and skipped my prom night as a result.

By the time I was in my 20’s I was glad to leave high school behind. I was in university studying history part time and working the rest of the time.

It began with a depression and increasing disillusionment that set in and I left University. Over the next eight years I would move in and out battling the perception I had of myself with anxiety; never dating, not having friends, never truly venturing out in life; I felt less then others; unworthy and ugly.

Down the road I would go to college instead. One program stuck in my mind. A leadership course. I knew then some how I wanted to help others, but didn’t know in what capacity. I found a best selling book there after by Dale Carnegie called, ‘How to Win Friends and Influence People.’ It floored me and I enrolled in one of their training programs. I remained on for 2 years as a volunteer coach working with other people.

Carnegie was influential in my life, but try as I did then, I never conquered that battle inside of me.

Over the years some of the depression and disillusionment returned. No matter what I tried it persisted for years and my anxiety began to get worse.

Finally in 2014 I was in total crisis. My anxiety evolved into a terrible disorder with powerful panic attacks and I turned to help at the hospital. That phase was the most grueling phase of my life.

At one point I sat across from a therapist who with compassion said, “can you do me a favour and throw away the rope.” I had revealed to her that I was suicidal. I had previously almost went through with it.

The compassion I received from her, my doctor, and a social worker, had an impact on me. Once again that urge to help others set in. My life was reignited.

I finally found a non-profit mental health organization; a cause bigger then my self to devote my life to.

I went from having no hope, no purpose to finding it again. I faced my anxiety head on and became a facilitator for wellness programs and trained volunteer peer supporter and even a board member. Our organization employs peer support workers in hospital settings. This was my calling to pursue.

Like every plateau in life, I did run into a few people who devalued my self worth, but was able to rise out of that. I found myself face to face with myself and this kick started the road to healing.

In January 2018 I took an online anxiety course with coach Leigha Benson that added to my recovery journey. It helped me to embrace myself and open the path to recovery even wider. I see now that repeated moments of self doubt in my youth and how I was treated kept me in a compartment for much of life.

I never had any animosity towards others for how I was treated for I knew God was always with me and them too. I first found him in grade one when I was being social isolated in play ground. I sat under these peaceful trees on a June day looked up and felt his presence in the breeze if the trees.

I credit spirituality as a constant in my life. For God taught me the value of unconditional love and forgiveness for people no matter what.

Anxiety will be something to always manage, but my life is gradually getting better step by step. There is more work to be done, but I can now do it with a rented strength and hope.

Here’s My Story. What’s Yours?

When I was two years old, I began having “episodes”. I’m quite sure now they were hypomanic episodes, but that wasn’t really talked about as much back then. And it especially wasn’t diagnosed in two year olds living on dirt roads in rural Georgia in the early 1980s. I was told I was allergic to red food dye and that it made me hyper. I am not sure why they thought this, other than I’d had some cereal with marshmallows that were red as a treat (a rare occurrence, my parents made a lot of our food from scratch), shortly before the symptoms began.

 

Throughout my youth, I experienced what my gymnastics team affectionately called “Maya Moments” – situations in which I’d get so upset, anxious, worked up that I’d have to leave practice (or whatever situation I was in). It wasn’t a tantrum, or simply being frustrated, it was a feeling that welled up deep inside of me, making me feel like I was about to emotionally burst. Letting it out was the only way to quel that. But there was no explanation. Since there was no red food dye consumed at gymnastics practice, I had to assume it was “just me.” That I was just temperamental and got upset easily, that I was “dramatic” and over-reacted. A lot.

 

Beginning my freshman year of college, other feelings crept in. Self-criticism and doubt, lack of confidence, feelings of being extremely low or anxious. I tried to control these by controlling my food intake. It seemed one of the only things in my life  I felt total control over. It resulted, eventually, in disordered eating. By my sophomore year of college, I began seeing a counselor. She was a grad student in Psychology, and she helped. I wasn’t diagnosed, but I felt comfortable with her, and it offered me an outlet to discuss feelings I couldn’t understand.

 

By the time I was 29, I had been to at least four or five counselors. During my first marriage, there were points at which I used to actually instruct my then-husband to pick me up from behind and hold me up so that I could punch and kick my arms in the air (away from him, to clarify), to release the overwhelming anxious energy that felt like it was going to explode from me if I didn’t get it out. Despite this, I was given every “reason” for the way I was feeling, except for a diagnosis. I was told it was pre-wedding jitters, then “newlywed jitters”, then stress from then my mother-in-law and I not being best friends. I was given the old Freudian “mommy and daddy issues” routine, despite my clearly explaining over and over that I had a happy childhood, and that my family was where I felt happiest and safest. No matter how often I insisted it was something inside of me, I got push back.

 

Finally, just before my 30th birthday, I went to the ER with what I thought were non-stop panic attacks. Long story short, but I ended up being voluntarily committed for several days. To clarify, it wasn’t really voluntary. I was in the ER and they asked me, in the middle of horrendous attack,  if I wanted to stay overnight. I said yes. They did not mention that overnight meant being transferred to a psychiatric inpatient hospital, where I wasn’t allowed to leave for 48 hours, couldn’t have my phone or my purse with me, and that my loved ones would only be able to see me at visiting hours. When I objected, they told me I could go back to the ER and have an assessment, but then I chanced getting committed involuntarily, in which I would have no say over when I left.  I chose not to risk it, which was the right decision. I found out later that I had been labeled a suicide risk because of how I answered a particular question. I was not suicidal, but their assumption that I was would surely have resulted in an involuntary commital.

 

Because I had been labeled as such, they insisted on increasing the mild dose of antidepressants that my primary care had put me on a couple of months back. I insisted that this was a bad idea. I felt the opposite of depressed – anxious, jittery, brain running a mile a minute. I felt worse with the increase. I told them so. I wasn’t listened to.

 

I’d like to add an insert here: I don’t want to discourage people from getting help. I was at a not ideal hospital and did not really understand what was going on.  As I was admitted at 11PM, I clearly got the short-staffed overnight team. I learned a lot at the hospital. Almost everyone there was “just like me”. I.E. they were functioning adults with jobs and families and talents, who held interesting conversations and seemed to be genuinely nice people. It wasn’t the “mental hospital’ image shown in Hollywood.  It was a place for healing and understanding, not a place people were filed away. We did group work, which I felt beneficial. I met a nurse who was wonderful and helpful and truly cared about the people there. It was the process I did not like, and some of the individuals I dealt with. But ultimately, it led to me getting the help I needed (read on).

 

I called the therapist that I’d seen after my divorce, and during some other relationship issues. I explained my situation. She told me to hold tight, get through the two days after which they had to let me leave, and then come make an appointment with her. I followed her instructions. That appointment with her proved to literally be a lifesaver. She diagnosed me with rapid cycling cyclothymia, a mood disorder similar to, but not as “intense” as, bipolar disorder. She explained that the panic attacks were actually hypomania, and that the antidepressants had made it worse. She weaned me down off of them and started me on a mood stabilizer, which made me horrendously ill (physically), until it didn’t, and I started to finally feel ok again, mentally and physically. We started discussing my treatment plan. I began to learn as much as I could about my illness. I felt that finally someone was listening to me. I had been telling doctors and therapists for years that something was happening inside of my head, that I wasn’t just down or stressed, but that something was really going on. I was finally being heard.

 

Eventually, I decided that I had to make the best of the diagnosis. I started blogging, openly, about mental health and my experiences. I started a closed Facebook group for people with mood disorders. I began actively advocating via other social media outlets. I learned I was very far from alone. While cyclothymia is rare, there are so many others who struggle with mental health. I learned that just by sharing my stories, I could help others. I could show them that they, too, are not alone. I could help inspire people to speak up about their illnesses, whether in the form of social media or a blog, or simply to talk to me about it if they needed.

 

Eventually, I decided that I wanted to take my efforts to the next level. I started Spread Hope Project, to attempt to formalize what I do. I am still weeding through it. I haven’t quite pinpointed the exact trajectory of what I plan to do, but I’m working on it. Hope can still be difficult some days. My illness is still, as one would imagine, full of ups and downs, and therefore so is my life. But I know at my core that I can make a difference. More than my blogging and social media, but on a larger level. I have the passion for it, the personal experience, the longing to do so. I just need to figure out how.

 

This is my story of mental illness. My story of how it has changed my life, and how I got to the point where I am today. I hope that in it, you can find some hope, or at least some solace in knowing that you are far from alone.

 

What’s your story?

May Is Mental Health Month

Happy May! It’s sunny and getting warmer here in Philly, which is amazing. It’s incredible how much difference a little sun and warmth make, at least to me. While I can certainly battle depression on the brightest, warmest days (because it’s an illness, which doesn’t care about the weather forecast), I usually feel significantly worse in the short, cold days of winter when it’s difficult to even go outside for fresh air. So I’m super excited for the weather to finally be turning.

I haven’t blogged in a little while. I’ve been trying to get my sh*t together, reorganize my thoughts, plus I’ve been traveling in Greece. Side note: if you ever get the chance to go to Greece, go. It’s a gorgeous place, the people are the friendliest, the food is the freshest, and …. just everything about it. You can check out pics on our Instagram.

But I digress. May is Mental Health Month. A cause near and dear to my heart, as most of you know.  Every day my brain wages a battle against me, and every day I win, even if sometimes just barely. I am the one in five adults in the US that has a mental illness. Specifically, I am one of the 0.4-1% of the US population with cyclothymia. There is little known about written disorder, and it’s difficult to find others who have it. It also tends to be pushed aside as “not as big a deal”, which anyone who’s dealt with the rapid cycling nature of the mood cycles knows is inaccurate. The lack of information and difficulty finding others who have it has driven me to do two things – 1.) start my personal  blog over at Lilies and Elephants. 2.) Help others whose causes and/or organizations need exposure. Because nobody should feel like what they’re going through or fighting for is “not a big deal”.

This month, I’ll be focusing on mental health causes and organizations, as well as those causes that can be associated. Here’s what we’re looking for:

  • Local organizations or projects raising funds or awareness for mental health.
  • Local business partnering with an organization to raise funds or awareness
  • Local, orgs, businesses, or even individual advocates looking to be more involved in mental health and related causes

We want to know about you, and help others to know about you! Zero cost, I promise. It’s just what we do here at SHP.

Questions you may have:

  • Does local mean Philly area where SHP is based? Nope. Just means not a big global or national  company. In other words, we’re a small org helping other small orgs/businesses.
  • Does it really cost nothing? Yep. Our thing is promoting your thing. Or you. Or your cause. That’s how we spread hope. Or at least one of the ways.
  • My cause/project could be related, but I’m not sure. How do I know if my cause/organization/business qualifies? Ask us! You can hit us up on email, Instagram, FB (we’re less frequent on there), or my personal account on twitter.
  • How can you help my cause/project/etc? We can help you tweet, post, and share. We also can add you under our Projects tab on the website, and if you’re interested, we can “interview” you for a blog post. We can also help you with additional ideas specific to your cause/project/event.
  • I know I/my company/my organization want to do something, but I’m not sure what. Can you help? We can. Or at least we can try. Reach out to us at the above.

Mental Health is important. It affects 20 percent of the US adult population, so the chances are, we all know someone affected – even if we don’t know it.  Let’s help erase the stigma and raise awareness together.

 

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

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.

 

Tiny Hopes Every Day

I’ve not blogged in awhile. I’ve been going through a particularly rough patch, and quite frankly, been struggling with my own hope. It happens to all of us, it seems. So I’ve been focusing on trying to get myself healthy and hopeful, because if I’m not, I’m unable to truly help others.

Sometimes, in the bleakest moments, hope seems dim indeed. In these moments, I’m forced to look for hopes in the tiniest things. The way my dog greets me when I arrive home. Every day. Like it’s the best moment she’s ever experienced.  She has infallible hope, and I think, “Man, I wish I could be like her. She’s literally always convinced something great is about to happen.  I can’t unfortunately. I say can’t, because I really mean I can’t. I battle depression, and when it flares badly, I physically, mentally cannot think life is roses, no matter how badly I want to.

So lately, I’ve had to get back to basics. I’ve had to focus on those tiny moments in life that bring some brightness – the smell of rain, a colorful sunrise, a much needed hug, an unexpected moment of laughter, spending time in the fresh air. These brief moments of brightness tell me that I can, after all, be hopeful. It might not be earth shattering hope, but there is a brightness. The world, and I, am not full of darkness.

So I resolve to live these moments more completely. To enjoy the fresh air more. To see more sunrises (morning insomnia makes this pretty easy). To hug more, when my physical closeness meters allow it. To spend more time, in person or virtually, with people who make me laugh. To focus more on living, and less on the “have to”s. And somewhere in there, I aim to offer hope, to myself and to others. Because sometimes, it’s in offering to others that we find the greatest hope in ourselves.

 

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My dog Grace finding complete delight in a paper towel roll.