Healing from 2018’s Pain

It’s after Christmas which means a flood of “New Year, New Me” statements and annual resolutions that we each hold dear for a few following weeks only to abandon them for any number of reasons.

For the first time ever, my first resolution is that in 2019, I will prioritize my emotional wellness. Perhaps it’s because I’m growing as a person, perhaps because my Ehlers-Danlos Syndrome doesn’t really allow me to make ambitious physical goals, but primarily think it’s because I’ve grown into a place where I’m allowing myself to heal for the first time in a long time.

I’m a slow healer physically by nature of my chronic condition but often, I think the emotional wounds dealt to each of us are harder to recover from than anything we could have happen to our external self.

Maybe you’re like me, having had lingering relationship trauma send shockwaves through the rest of your year. Healing, be it physical, emotional, or spiritual, takes a great deal of time; something we generally don’t have much of and something we’d rather put towards distracting ourselves from the pain instead. It can be much easier to focus on something or someone else rather than put concentrated effort on healing.

This year let me encourage you to give even just a few minutes of your precious moments alone to think about some of the more painful incidents of 2018. For me, I had to walk away from a spiritual fellowship of individuals that was no longer staying true to the mission they claimed to have. In the process, I lost my best friend which sent me reeling for awhile until I confronted myself about why it hurt so much.

In order for a wound to stop hurting, it must be cleaned first—the most painful part of being injured. I was forced to soul search, asking myself hard questions like “Why did this relationship loss hurt more than others I’ve experienced?”, “How did I contribute to this relationship loss?”, “What can I do to learn from this?”, among other hard-hitting questions. I had to keep asking myself these frequently since the hardest task of all is being honest with ourselves.

Once the questions had been answered in my heart, I was able to bandage my emotional hurt by dealing with the physical remnants of the relationships I lost. There were photos that had to be put away; some items needed to be placed in boxes and put in a different part of my home to allow myself time to heal more before they returned to the places on the shelves they had originally kept for so long. One of the most painful parts of the bandaging stage required me to unfollow and/or block other influences that haven’t allowed me to move forward.

Finally, the last part of the healing phase has entailed me embodying a phrase by LaLa Deliah, a wellness educator and author, that I stumbled across during the hardest months of the trauma, “She remembered who she was, and the game changed.” The greatest healing takes place when we allow ourselves to prioritize healthier relationships, take part in exciting experiences, and by learning from the mistakes of the past.  It will be a long time before I am fully healed, and this too is something I’ve had to make peace with.

There are still triggering moments where I recall conversations or experiences that still anger and sadden me, and I will have to keep soul-searching through those moments. However, I’m healthier emotionally than I ever have been, and I’ll keep on growing to the best of my ability.

Here’s to 2019, a year of healing and growth for each of us.

Self-Acceptance – An Uphill Battle That’s Oh-So-Worth-It

Hey, there. I’m Dani, and I like control.

I’ve always been one to make sure I know at least a little of what’s going on schedule-wise in my life. I like knowing what the day holds for me and being aware of what’s coming up in the near future. I pride myself on balancing my personal calendar as well as my family’s. We may be a family of three adults, but you’d be surprised what a color-coded masterpiece each month can look like once we all get our events added to the collective calendar.

If it wasn’t already painfully obvious, I’m at the very least a tad type-A. Comes from being raised by a Ravenclaw and a driven Gryffindor, what can I say? Since my diagnosis of Ehlers-Danlos Syndrome, I’ve had to come to grips with the fact that I simply no longer have the ultimate say-so in my daily life.

My EDS 3 doesn’t exactly clue me in when it comes to flares. The gall, honestly, I know. It can be mind-bogglingly frustrating to roll out of bed in the morning only to find that the day’s plans are either changed or completely nullified simply because a rib (ribs plural most of the time for me) or clavicle or literally any other joint in my body decides to subluxate or even dislocate. Each subluxation brings with it a host of different physical chain reactions if not appropriately taken care of; some of these reactions are more serious than others which requires me to sometimes play triage if the “damage” is worse in some joints over others.

My mental processes usually go as follows upon such a discovery:

1. Denial – “Surely this isn’t happening. I can just do a few shoulder rolls and get everything situated in nicely.” Hahaha. Yeah, we all know how this will go.
2. Painful Wake-Up Call – Usually this call comes tearing in as some kind of sharp nerve pain while I’m still hanging out in the denial phase.
   For example, ” *sharp pain is felt* Yep, okay. This is a real thing that’s happening.”
3. Prevent Downward Spiral  – I have a bend toward putting myself into a downward mental spiral (I’m working on it, I promise.) and often these EDS not-so-nice surprises can help set off one of these spirals. I have to remind myself that this is simply the nature of my illness and move forward from that point. It’s an uphill battle some days, but I’m learning to treasure my inner strength.
4. Breathing – Seems simple enough, but I have to remind myself to get centered, do a body scan through meditation and figure out exactly what and how many things aren’t in their proper place. Usually when I do this, I find more than one area that needs some T.L.C.
5. Self-Adjustment – This isn’t always recommended depending on your personal stage of EDS 3, so I can’t recommend this step for everyone. Personally, this can look like anything from gentle yoga stretching to literally grabbing my clavicle and moving it over, back into its proper place. Either way, I do my best to self-adjust as gently as possible though occasionally force is necessary regardless of the pain being experienced.
6. Letting Someone Help – Sometimes I simply can’t adjust myself. Sometimes the bone or joint won’t cooperate, or things are just too far “gone” for me to amend on my own. It’s at this point that I have to invite someone else’s help – be it massage therapist or chiropractor – to get to those hard-to-reach places or work on that Uber-tight muscle.

At this point, I’m still actively receiving weekly chiropractic care regardless of what goes awry (think of it as a weekly vehicle tune-up) as well as a gentle-style massage treatment once a month. Both of these particular specialist treatments have taken me awhile to mentally accept.

When one is 23, one feels as though they should be resilient enough to take care of themselves and not necessitate monthly massages in order to live functionally, but such is my life at the present moment. Daily self-acceptance is difficult, but entirely doable with practice–like a great many other things in life.

Maybe you’re like me. Maybe you fight for control in your life, only to watch it slip through your subluxate-d fingers. I’m no quitter, but if you’ll allow me to speak frankly…just give up. Just buckle in for the ride, accept the help you need along the way, and do your best to adapt. And on those days where self-acceptance seems the most impossible task, remember you’re not alone. We’re all fighting uphill together.

Growing Wings.

Ever since I have been small, I’ve made it my personal endeavor to pull some kind of wisdom from each day. This wisdom doesn’t necessarily have to be that of intellectual nature, oftentimes I learn something about myself, about my belief system, or even something about the world at large.

The past few years I felt as though I was stagnating in my life. Shortly before I graduated with my Associate degree from Savannah Tech in Savannah, Georgia, I began having bizarre physical symptoms. Sparing much detail, these symptoms added together to a diagnosis of Ehlers Danlos Syndrome, Type Three from the MAYO Jacksonville clinic.

EDS is a complicated chronic illness that can affect multiple body parts, joints, nerves, etc. It’s also extremely rare, affecting roughly a very small percent of the world’s population at large. Having no cure except for pain management, one can imagine how an illness like this affects an individual at any age, particularly that of an active and engaged college student.

Awaiting a med procedure!

It was at the nine-month mark post-diagnosis that I transferred my credits to Savannah State University, a local university which would allow me to live at home while still getting the degree I want. Through the treatments I was receiving from my team of health care professionals, family support, as well as personal strength, I plowed my way through a fantastic semester and made higher grades than I anticipated.

Before SSU, I had dreamed often of studying abroad, even for a short period, since I was born with the travel bug. Since my diagnosis, I had shelved most of my goals temporarily, hoping that one day I would accomplish everything I wanted to get done since at the time of my diagnosis I was barely able to walk or do the basics required for daily life by myself—drive, shower, clean house, play my instruments, etc. At the counsel of several SSU faculty members and through the tentative blessing of my parents, I went forward with plans to join the team leaving for Panama in May.  The plan for the trip was to visit Panama City, Panama and local areas, reporting on current events, attending a viewing party of Panama’s last futbol match against Norway before their first ever World Cup game. I fell in love with the online journalism major offered at my school earlier in the year, so as soon as I heard about the short-term study abroad opportunity, I began exploring my options.

While in country I had a fantastic time. The trip was been full of so many first experiences I barely know where to start:

I flew internationally without my parents and sat with people I didn’t know.

I tried chicken wings for the first time. Probably not going to happen again,
but hey, I did try. 

I went 2 weeks without needing the assistance of a medical professional to manage my pain, though I did take my usual pain medication and followed through with the self-care routine I already established before leaving the U.S.

Taken by Jessica Sparks, JMC professor at SSU.

I went salsa dancing and had an AMAZING time and refused to allow my brain to get me all concerned with how people thought I was dancing.

 

I went out with friends to a reggaetón club and had a blast.

 

Taken by Jessica Sparks, JMC professor at SSU.

I rode a horse on a beach along the Pacific Ocean…slowly, of course.

 

 

 

 

I got EXTREMELY close to two of my most favorite species—iguanas & two and three-toed sloths.

I tried Peruvian food…and lots of Panamanian foods.

I spoke a language A LOT that I’ve been embarrassed to speak for a long time because I’ve been afraid of being judged by native speakers.

Yours truly with a small friend I made at the hostel 😉

In short, I lived.

After two years of staying in the same place, doing the same things, just trying to function from day to day…I finally lived.

Leaving the U.S. was arguably the largest leap of faith I’ve ever made independently. As I packed my bags, I was acutely aware of how my health issues controlled so many aspects of my life and what a real gamble it was to even leave the United States, much less travel internationally, sleep in a strange bed, eat strange food, and have no doctors nearby that I trust. I was concerned I’d be sent home for medical reasons and have to face the embarrassment of returning home to recover, forced to walk away from an experience of a lifetime and dropping a class I love.

 

Taken last year during an ER trip.

It would have been easy for me to get caught up in my personal limitations, therefore denying myself the opportunity of a lifetime. For those of us with a chronic illness, we spend so much of our lives managing pain and making needed accommodations for ourselves that we often forget to branch out and lean into things that may take us outside our comfort zone. As William Young once wrote, “Pain has a way of clipping our wings & keeping us from being able to fly, & if left unresolved you can almost forget that you were ever created to fly in the first place.” We are all meant to fly.

 

 

 

 

Taken by Jessica Sparks, JMC professor at SSU in Casco Viejo, Panama City, Panama.

While on my trip, I surprised myself in more than one way. I wasn’t sent home from the trip, in fact, I flourished while I was out of country. I’ve now come home having had thrilling experiences I wouldn’t have had any other way, having pushed myself outside my comfort zone and having tested my body’s physical limitations in a variety of different capacities. I also experienced a culture that, though I had experienced it previously in high school during an extended trip to Bolivia, was a completely different kind of exposure since I was traveling with peers under the guidance of professors while working on my columns and projects while in country.

I would encourage anyone, especially if you’re a student, to study or travel abroad; when I was told that studying abroad changes you, I truly didn’t understand how much until returning home. While in Panama, I had the opportunity to fully immerse myself in most aspects of Panamanian life, speak a language that I was somewhat comfortable with but still have a lot to learn in, and walk in my chosen career path as a journalist. I expanded my horizons every day, essentially all we as humans can ever hope to do. There’s an infinite much of the world, and we’re here for a reason.

Thanks to my trip to Panama and the many life lessons I gleaned from its daily offerings and experiences, I believe I’m slowly growing my wings back, and I couldn’t be more excited to use them again.

In the words of poet C. JoyBell C., “…it is only when we are suspended in mid-air with no landing in sight, that we force our wings to unravel and alas begin our flight. And as we fly, we still may not know where we are going to. But the miracle is in the unfolding of the wings. You may not know where you’re going, but you know that so long as you spread your wings, the winds will carry you.”

STAB 2018 Panama Crew from L to R – Emmalee, Jakia, Jasmine, Naomi, Ashia, Isaiah, Professor Sparks, hostel host John, Jepera, Briana, Carmen, yours truly, and Professor Martin

The importance of compassionate education + its potential for world change

Today, I returned to PT (and obviously to writing once again – apologies for the break.). I had the tremendous privilege of meeting my physical therapist’s mentee, C. C is a twenty-something who has a keen eye and interest in physical therapy, so she’s shadowing my current practitioner to gain experience. In the past, I have had tremendous difficulty retaining physical therapists, primarily because my diagnosis is bizarre. Most PTs have no idea what to do with me structurally, as my body seems to refuse to respond to traditional therapy styles.

Aside: The fact that I found the physical therapist I currently have is a sheer miracle, considering she is actually a pediatric therapist who, having heard my story, decided to accept me in her practice!  I’m her tallest patient I think, towering at 22 yrs old, 5’11”! 😉

I was so pleased to be barraged with questions by C. As she asked me questions such as how does my body react to the cold, when did I notice these symptoms, how do I process it all day by day, etc., she validated my experiences in expressing compassion through body posturing, facial expressions, as well as saying things like “Wow this must be so frustrating for you.” and “You’re taking this so positively!” As we were speaking, I was confident that C would be successful in the medical world. Why? Because the medical field needs more compassion. Patients like me need more nurses, doctors, physical therapists, radiologists, etc. to hear our stories and VALIDATE our experiences.

As someone who collects doctors like some kids collect Pokemon cards, almost all of my doctors have been either dismissive, indifferent to my pain during certain testing procedures, disrespectful to my caregivers, and/or have not listened to me as I described my symptoms which has caused wrong medications to be doled out and wrong diagnosis to be assigned. (One day I’ll write the story of when I was told I was having a panic attack when in reality, I was experiencing an asthma attack which I had never had. I now carry an inhaler I use rather infrequently.)

Education with regards to chronic illness is CRUCIAL. Excluding the doctors who diagnosed me with EDS 3 at the MAYO, all of my healthcare providers have been totally ignorant of my condition, requiring me to educate them. Is this frustrating? Yes. But do I understand why? Yes. As someone who is chronically ill with a tremendously rare syndrome, I consider it my duty to educate those around me (when appropriate) about my illness. I don’t consider something that affects every part of me to be something I need to hide, besides the fact that it is almost impossible to hide!

If you happen to have a chronic illness, I encourage you to educate others about your chronic illness. It raises awareness, explains why you may or may not be able to perform certain tasks, saves you from looking flaky when you cancel plans because you just can’t do it that day, as well as makes the world a better place. In today’s climate, everyone has something they’re standing for. If the chronic illness & disability community were to band more tightly together, resolving to education the common abled public, I truly believe that we would have more advocates speaking out to government officials, communities, churches, and schools on our behalf.  We have few advocates because few people know or understand our condition(s). So it’s your and my job to teach them.

If you are abled, please listen and do your research. I realize that syndromes and illnesses are scary and not for the faint of stomach; however, your fellow brothers and sisters who are at less of an advantage NEED your help. If you listen to us and speak out with us, this world could swiftly become a more accessible, more compassionate, and more educated place. After all, who doesn’t want to change the world?

As Annie Elainey says, “The future is accessible.” And it will be, if we all work together.

Failures & Feelings.

Fail. We use the term as a slang word to describe how stupid we were when we did a certain action (i.e. we trip in front of our crush and tell others what an “epic fail” it was) and we watch fails for LOL’s on YouTube and TV. 

I’m here to issue you a challenge. What if we had a radically different view of what failing means?

We’ve all heard the sing-song phrase, “If at first you don’t succeed, try try again.” But do we actually believe it?  We give up too easily. If we don’t figure something out the first time, we quit. If we fail at a test, we label ourselves failures in the class and walk around depressed (shout out to my fellow perfectionists). We have a very focused, driven mindset that wants it all now and done perfectly. This mindset makes living with others incredibly difficult as well as loving ourselves. 

Why change our “fail” mindset?

1. Failure can be a gateway to success. We all have heard of Thomas Edison’s thoughts on failure, “I have not failed. I’ve just found 10,000 ways that won’t work.” (in reference to the 1,000 different materials and objects he tried to use to create a decent filament in a light-bulb) Failure is its own practice for perfection; the more times you fail, the closer you are to success.
2. Simultaneously, however, failure may not be practice for perfection on that exact item/mindset/project you’re working on. Your failure may be something that the Universe is using to show you something totally different, something you actually should be going for instead. If you can’t seem to do the thing you’re working so hard at doing, maybe you’re not supposed to be doing it.
3. Maybe try looking at it from a different angle. Failure can be a way of forcing you to try to do something differently than you’ve ever done before. Sometimes that different angle is all you need to get started on a totally new, spectacular project that may change your life…or someone else’s!

Honestly, as many times as I fail, I have to constantly remind myself that I’m bigger than my shortcomings.

We’re all recovering from something–loss, mental illness, eating disorders, suicidal thoughts, acute illness, chronic illness, etc. Any and all kinds of grief, loss, pain, mental or physical illness can make us feel like complete failures. The failure mindset is a vortex–sucking us in, pulling in other areas of our lives, & suddenly thrusting us to the bottom of a self-designed pit. 

How can we get out?

By remembering that just because you’re fighting a battle doesn’t mean you’re a failure. We trip up and start thinking that  if we’re not competing on the same playing field with everyone else in the world…somehow we are lesser. Somehow we aren’t as important as they are. Somehow we should be doing more, trying harder, push ourselves more. But that’s the thing. Life was not meant to be lived like a competition.

Join me in fighting against the comparison, competition mindset that we help put ourselves in. Start recognizing the little things that we all have to be thankful for. Look for the small things in life that you’ve been given throughout the day. Remember the joys of the past, look for them in the present, and get excited about the joys of the future. Just because you may feel like a failure now doesn’t mean that you actually are. 

In fact, I promise you that you’re not. Feelings do lie, but they too are a gift. Feelings are the push we need to make a change in the world. Change your mindset, change the world. h ourselves and our own mental health.

Why change our mindset when it comes to what failure means?

1Failure can be a gateway to success. We all have heard of Thomas Edison’s thoughts on failure, “I have not failed. I’ve just found 10,000 ways that won’t work.” (in reference to the 1,000 different materials and objects he tried to use to create a decent filament in a light-bulb) Failure is its own practice for perfection; the more times you fail, the closer you are to success.

2Simultaneously, however, failure may not be practice for perfection on that exact item/mindset/project you’re working on. Your failure may be something that the Universe is using to show you something totally different, something you actually should be going for instead. If you can’t seem to do the thing you’re working so hard at doing, maybe you’re not supposed to be doing it.

3Maybe try looking at it from a different angle. Failure can be a way of forcing you to try to do something differently than you’ve ever done before. Sometimes that different angle is all you need to get started on a totally new, spectacular project that may change your life…or someone else’s!

Honestly, as many times as I fail, I have to constantly remind myself that I’m bigger than my shortcomings.

We’re all recovering from something–loss of family, friends, pets, loss of that ideal grade, mental illness, eating disorders, suicidal thoughts, acute illness, chronic illness, etc. Any and all kinds of grief, loss, pain, mental or physical illness can make us feel like complete failures. The failure mindset is a vortex–sucking us in, pulling in other areas of our lives, & suddenly thrusting us to the bottom of a self-designed pit. 

How do we escape this toxic mindset? We fight against the comparison, competition mindset that we help put ourselves in. After all, it’s that toxicity that pits us against our fellow women instead of respecting each other and having each other’s backs like we should be. Life was not meant to be lived like a competition.

Build up the women in your life; support a sister! Get excited about the future. Just because you may feel like a failure now doesn’t mean that you actually are. 

In fact, I promise you that you’re not. Sometimes feelings and failures are the push we need to make a change in the world. Change your mindset, change the world.

How to Express What You Need (or Don’t) Mid-Conversation When You’re Chronically Ill (without coming across as being a jerk)

Communicating with others when one is sick is difficult. Stuffy nose = clogged communications and generally if you’re contagious, no one really wants to be around you.  However, when you’re chronically ill, there’s no fear of contaminating others, and so you can find yourself easily in situations where the average sick person doesn’t go.

There are a lot of similarities between regular illness and chronic illness.  They both are an inconvenience, make you feel generally *blech*, and are extremely exhausting. What’s the difference?  You’ll actually recover from one of them.

Being chronically ill, I have found (and will continue to find) myself in conversational or communicative situations where I am very close to being drained (i.e. needing a nap, need time alone, need time to stretch, need an adjustment). The unfortunate reality is that regardless of whether I feel drained or not, there are times where I have to just “power through.”  So far I have a 10/10 survival rate, so I feel at least some qualified to share my tips with you on how to I “power through” conversations/social situations even though I feel like a limp noodle.

A) Be aware of your body’s posturing in the situation. Oftentimes when I’m talking with someone I’ll become acutely aware of how exhausted I am. You and I may be talking, and a metaphysical Mack truck may hit me mid-conversation, totally unbeknownst to you. When this happens, I do a mental physical assessment–thinking about my main areas of subluxation that act up, check in on my ribs, and massage my wrists. If that doesn’t alleviate some discomfort, I’ll physically adjust my posture. I’ll stand up, cross my legs, sit Indian style, stretch out one side of my leg, etc. Pulling my shoulders back can be a gamble for me because my shoulders are so loose, but I’ll even give that a whirl sometimes. Postural adjustments are so fascinating I may write a follow-up post about them.

B) I’ll stop talking. And I’ll listen even more intently. There is a gift to feeling exhausted in conversations. I try to use those opportunities to tune-in my ears to the conversation. As silly as this may sound to some of you, talking is exhausting!  I’m an INFJ so that could be part of it, to a certain extent. None of us can listen well if our mouth is moving anyway, so if I don’t want to talk I don’t!  I’ll just let you do all the talking, and that’s perfectly fine for me.

C) Ask if we can go for a walk OR lay down on a bed (if I know them well enough). Sometimes I just need to move. My chiropractor is ALWAYS saying that our bodies weren’t made for sitting, and maybe the other person might just be down for a walk. Go ahead and move around!

D) Time to bow out. If you can’t manage the pain appropriately, and it’s physically causing your body’s too much distress…it’s time to wrap up the conversation.  Hopefully your friend will be understanding, but at the end of the day, you have to do what’s healthy for you.

Hopefully these tips have been helpful for all my fellow chronics and spoonies!

Why Star Wars Will Always Be Relevant to My Life

I know it’s not “hip” or “cool” to be a geek, although I do think the culture is changing some to where engaging in geek culture is a positive thing.  My parents had me later in life, so I mean, there’s a pretty solid age gap here.  They can remember going to theaters to see when the original Star Wars movies came out.

My first exposure to the films was one of the many memories that I treasure to this day. It was a Saturday afternoon, my parents prepared me that it happened in “space”, and that I was more than likely going to love it (they knew me pretty well).  Cue music and BAM! Instant fan.

To this day, I’m an admin of a small cosplay group, have some Star Wars memorabilia, and there’s not just 1 but 2 window decals on my car. My car is called Rogue, so I mean, you know.

I think a lot of people don’t really understand why geek culture is something that has become increasingly popular in recent years. Is it because Disney is mass producing Star Wars and MARVEL merch and it’s helping pop up the market?  Possibly.  But I’d like to think that, in this media saturated culture, my generation has grabbed the bull by the horns and realized that there are life long lessons to be learned out of geeky films–Lord of the Rings, the Avengers, Justice League, Jurassic Park, etc. I was raised on the “unpopular stuff” like Broadway musicals, the classic Disney movies (how many of you have you seen Fun and Fancy Free? Yeah, that’s what I thought.), and to top it all of, I LOVED Lawrence Welk! There were so many family-friendly, positive, light-hearted but simultaneously, deep messages found within those movies & TV shows. Some of the geek-ier movies I didn’t see until I got older, but honestly, that made them even more memorable.

Star Wars has a very special place in my heart. Why? Well, I am glad you asked.

#1 – Strong female characters. There’s not a lot of films that portray women having not only an active, but vital (as well as positive) role in government.  Princess Leia and her occasionally less-than-diplomatic diplomacy inspired me to make a difference in my world and to always stand up for truth.

#2 – Trust your gut.  Although we don’t have the Force, and what a serious bummer, am I right?  Our gut instinct and if you’re a Christian, the Holy Spirit, helps to guide our mind and heart to doing the right thing, choosing to serve others, and treat them the way they should be treated.

#3 – Families can be messy. Star Wars taught me that families stick together, and if your family is split up for whatever reason, the people you choose to travel through life with are also your family.  Treat your family with respect and work as a team; you’ll see it through to the end.

#4 – Be patient.  The battles you’re fighting aren’t going to be solved in just one day. Take some time to breathe and endure what you’re going through. The Dark Side won’t last forever.

#5 – Everyone has something to bring to the table. There’s all kinds of species that work together in Star Wars.  Some serve on the government panel, some serve in the military, some work as vigilante justice, etc. We’ll accomplish the most by working together among our own people–white, black, brown, Native American, etc.

“The longing you seek is not behind you. It is in front of you.” – Maz Kanata

Why you shouldn’t care what people think…for the most part.

We’re humans. And with our humanity comes this innate disease of comparatitis. *winks*  Oh, come now, you know what I mean. We *love* comparing ourselves to others. Partly, it’s the media which fuels our inner disease; it twists our insecurities and makes them into demons which haunt our soul always whispering to us to try to be more, to do more, to be skinnier, to be more pretty/handsome, to be more like this elusive “him” or “her.”

The most interesting thing is that we know that these insecurities are lies about ourselves and we listen to them anyway!  We know those models are airbrushed, we know those stores are playing on our emotions with their advertisements, we know there’s no possible way we could ever be like the people we compare ourselves to (mostly because no one is more you-er than you)!

This is not going to be a big fancy post that tells you, “Oh just stop caring and you’ll immediately be self-loving and healthy in your relationships and mind!” Because that literally never works at ANY time.

You have to TRAIN yourself not to care what others think, and with that comes a balance. There are times were you should care, like when you know the individual speaking into your life has your best interest in mind (and of course you should always care about the Lord’s)…but there are a few serious times when you should not care.

First, to my fellow chronically ill folks – we have learned that only we know our bodies the best. No doctor, nurse, or otherwise knows your body the way that you do. Consider this encouragement that you have a right to fight for your needs and it’s perfectly fine to let medical professionals know what you need regardless of whether or not they think it’s weird or you’re being too dramatic…God forbid they say you’re faking it. If they don’t respect your illness, find someone else who will.  Choose to respect yourself and your body enough to do what you need to do to be okay–be it using mobility aids, braces or compression socks, cancelling plans, or using that disability parking spot (provided you have a tag/sticker/etc).

Second, to my able-bodied audience – this same mentality goes for you. If someone doesn’t respect you for you–lumps, bumps, stretch marks, mental hangups, weight, etc.–then you don’t need to be listening to what they have to say about you.  Partly, you have to respect yourself enough to know what you need relationally, mentally, and physically. Once you know what respecting yourself looks like for you, you can begin to look outward and experience relationships in a healthy way.  If you don’t make that choice to stop listening to the wrong voices, those voices will never cease to scream their opinions of you at you. Eventually you’ll become burned out.

At the end of day, your value only comes from 2 key places. If you have spiritual beliefs you hold dear (as I do), then God’s opinion about you is what matters above anything else. You were created for a purpose.  Only you can accomplish that divine purpose.  Your value should also stem from the thoughts of anyone that has proven themselves enough to show you that they have your best interest in mind. Now, this doesn’t mean that they’re going to say everything you want to hear–just that they give you a swift kick when you need it, give you a shoulder to cry on when you need it, and make you laugh when you need it.  If you’re lucky enough to find a friend like that, do the same for them. Relationships are a 2 way street.

You must learn to value yourself. In the spiritual sense, God expects you to believe that you are of value. Because you are!  I’m not saying become an egotist, don’t get me wrong. However, there is a sense of health in knowing who you are and understanding that every individual has certain needs that need fulfilling, and you are no different. It is okay to love yourself in a healthy way–acknowledging your faults but simultaneously realizing that you are allowed to make them.  In the words of Emma (Anne Hathaway’s character) from the film Bride Wars, “You’re only human. You don’t have to have it together every minute of every day.” (Rabbit Trail: gosh, I just enjoy that movie so much! Several good messages are built into it…you should watch it.)

Most of us have a desire to release our little inner rebel…particularly if you’re a millennial. Our society encourages us to hate ourselves. Now’s your big chance to be a rebel and choose to see yourself as creations that, although not perfect, have the capacity for greatness that no one else can imagine…sometimes not even ourselves.  Silence the voices. Respect yourself and in doing so respect others. Love big and stand strong.

The Sweet Syrup Dip of Nostalgia.

Alright, let ya girl be real for a second here.

In my various trips to Disney…and believe me there have been several…I’ve watched as kids have traded pins with cast members and other park visitors.  I’ve always wondered if those little ones (sometimes big people too) have gone about pin trading with the same kind of mentality that I have. Let me explain.

I first started my journey into the world of pin-trading thanks to my grandparents, Gerry and Carl. They made a visit to Walt Disney World when I was about nine years old and brought me back an AARP lanyard with the DOPEST pin of Mickey Mouse & Pluto in a car (at least I thought so at that time). A year or so later, my dad brought me home a golfing Minnie Mouse pin, and from then on, I’ve been more or less hooked.

^first pin, courtesy of AARP & my fantastic grandparents^

You’re probably asking, “Dani, why exactly am I supposed to care about your pins?”

I’ve come to realize through my pins that I am an avid consumer of the syrupy dip of nostalgia. Some people get warm fuzzies through pictures (shout out to my bestie Kristin), others get tingles by going through pieces of artwork that their kids created when they were little. My sources of greatest nostalgia always have been from the little things. I have this box in my closet in the far back shelf that is choc full of little things, literally just random things that matter to me but wouldn’t to anyone else. There’s woodshavings from Dollywood (collected when I was 6), a turtle toy no bigger than my finger nail (collected from the library’s summer reading program treasure box when I was 7), and a pair of Chiquita banana clip-on earrings (don’t ask)–just to name a few.

Specifically, my Disney pins are displayed on a cork board on the front of one of my 3 bookcases in my room. (Hey! I like big books and I cannot lie!) Because my memory is like a sieve when it comes to math but retains all of the most unusual details (I slay at Trivial Pursuit and Disney Scene-It for this very reason), I can look at each of those pins on that board and be able to tell you exactly why I have them, the memory or individual they’re kept in honor of, and where I traded for them in the parks (or bought elsewhere).

All this to say that I would encourage you to find things that mean the most to you in your life and spend a few minutes basking in the redolent glows of past memories. Why?  Because it’s good for the soul to remember where you’ve come from, what you’ve seen, who you’ve met, and then press ahead, using those memories (both good and bad) for inspiration energy. For me, my Disney pins inspire me to make even more treasured memories with family and also reminds me to continue to wear them attached to my shirts and vests to go places where I’ll make even more memories wearing them. While living in the here and now, I’m simultaneously honoring the past.

Memories create a legacy we are blessed enough to give our future selves. This gives us the permission to no longer hole up in the past but be able to savor it as we press on into the future.

Preface.

Hi!  Honestly, you can read about me in the “About Me” section, so I don’t want to bore you to death.  Suffice to say though…my name is Danielle but please do call me Dani. It’s easier on everyone that way.

Why the domain name Chronic Kindness? Well first, I was inspired by the 2015 live-action Cinderella film quote: “When there is kindness, there is goodness. When there is goodness, there is magic.” Also, I’ve found in my various encounters with individuals like myself who struggle with a chronic/invisible illness that, generally these individuals are exceptionally positive, compassionate, and kind.

Oh. That’s one thing.

I have this thing called Ehlers-Danlos Syndrome. It keeps me humble and on my toes constantly, like an aunt that points out all your flaws at Thanksgiving dinner. I really don’t want to make this blog solely focused on my syndrome…because I’m learning how much more I am than my diagnosis. Sometimes I need to prove that even to myself, and that’s part of the reason for this blog. Everyone has a thing. Everyone has a nagging “aunt” on the inside.  Maybe your “aunt” is depression…or anxiety…or maybe it’s just that you’re a big procrastinator and can’t stay on top of life. My “thing” just happens to be EDS; I’m learning to be okay with that.

If you want to know more about EDS, have a brief synopsis written by the Ehlers-Danlos Foundation:

“The Ehlers-Danlos syndromes are a group of connective tissue disorders that can be inherited and are varied both in how affect the body and in their genetic causes. They are generally characterized by joint hypermobility (joints that stretch further than normal), skin hyperextensibility (skin that can be stretched further than normal), and tissue fragility. The Ehlers-Danlos syndromes (EDS) are currently classified into thirteen subtypes. Each EDS subtype has a set of clinical criteria that help guide diagnosis; a patient’s physical signs and symptoms will be matched up to the major and minor criteria to identify the subtype that is the most complete fit. There is substantial symptom overlap between the EDS subtypes and the other connective tissue disorders including hypermobility spectrum disorders, as well as a lot of variability, so a definitive diagnosis for all the EDS subtypes when the gene mutation is known—all but hypermobile EDS (hEDS)—also calls for confirmation by testing to identify the responsible variant for the gene affected in each subtype.”

Direct link here for more information: https://www.ehlers-danlos.com/what-is-eds/

Even though this all sounds very scary and intimidating (and it really is in some ways): My chronic illness does NOT have to change who I am on the inside. I can choose to view it as a tool to make me into a more compassionate, loving person, or I can allow it to twist me on the inside, making me bitter and cynical. Honestly, I am a bit more cynical now that I’ve been sick for over a year. Pain does awful things to the brain–I’ll be the first to admit that along with hordes of others who struggle as I do to make it through the day just existing, much less accomplishing a great deal of anything. But I’ve come to realize…my illness doesn’t define me. It does define what I can and cannot do, but even then, what I do really doesn’t define me either.

I’ve chosen for myself that my greatest mark on the earth will be the lives I’ve touched by my consistently positive attitude, my encouragement of others in the pursuit of their dreams, and how obedient I am to a Higher Power and the plans for my life.

Oh. That’s the other thing.

I’m a spiritual kind of person, so you can expect that to pop up in my posts.

But yeah. I’m Dani. And I’m excited to share my journey of doing life with my chronic illness NOT defining me…with you.