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.