Disability, Super Powers, and Idina Menzel

As I was getting ready for the gym this morning, like any normal person, I was listening to show tunes. What, you don’t do that? Well, why not? Quick everyone! Let’s point fingers and laugh at the person who doesn’t have a daily ritual of listening to show tunes! What do you mean “I don’t do that either?” I guess it’s only awesome people who do that. ūüėÖ

Anyway, as I was listening to my show tunes this morning I had a realization, one that probably everyone before me has already come to, but I am not fast:

The wonderful Idina Menzel is the embodiment of the empowered disabled person. Oh, she’s not disabled, but she lends her beautiful voice to give a voice to the broken. I have two basic evidences. Plug in your earbuds and listen along, you won’t regret it. Spoiler warning, but that shouldn’t be necessary.

First, Elsa from Frozen. The symbolism is pretty clear, and I think it was deliberate: Elsa has a hidden disability, so well hidden that even her sister is unaware of its existence, but in an effort to hide the disability, she distances herself from everyone around her. Worse, she’s so terrified that everyone will hate her because of her disability, that she makes sure everyone hates her despite it (a classic self fulfilling prophesy). The secondary plot of the movie is Elsa finally coming to accept herself as she is, and realizing that everyone around her loves her despite he strangeness.

This song changed the intended writing of Elsa as an antagonist to being a protagonist, because no bad guy could rock this much.

Second ¬†is Elphaba from Wicked. While I can’t necessarily recommend the play, and definitely can’t recommend the book (something something, sentient animal orgies, anyone?) Elphaba was born with the blatantly visible, though not particularly restrictive disability of having ¬†green skin. This deformity has caused her to be shunned her whole life, leaving her a bitter, awkward¬†introvert. She is, however, powerfully intelligent and magical. Going away to college she meets the snobbish and popular Glinda. Despite being roommates, share a mutual dislike for each other (the word loathing may come up…)¬†Yada, yada, yada, the become friends and Glinda teaches Elphaba how to become popular. Everything looks like it will work out swimmingly for Elphaba, all she needs to do is surrender her identity and betray her morality… Which she decides that she cannot do. As she comes to accept not only her disabilities but her extraordinary powers, she is demonized by the fraudulent Wizard of Oz: being the malformed person that she is, it isn’t difficult for the people to believe that she is in fact wicked. But she declares her own empowerment, defying the societal rules that keep her from her potential.

This song makes me cry every time… Wait, did I just say that? Strike that from the record please.

So what do we learn today?

  1. Idina Menzel is incredible
  2. The music from Wicked, while not being all good, has some awesome and powerful songs disproportionate to the story
  3. Every parent has, or should watch Frozen
  4. Coming to accept disability is the first step to being free of the societal bondage
  5. Jared’s a sissy
  6. Wait, what?
  7. I mean, not so much a sissy as… Emotionally secure? Do you buy that?

And I’m still waiting on my super powers

Image belongs to If-eazyworld РI stole it.

Phobias vs Fears: Unreason vs Reason

I’m sitting in church right now. I should be paying attention, but I’m struggling to keep from breaking down into tears like a little child who’s toy was took (bad grammar is intentional).

So I thought I would share my thoughts on the difference in fears and phobias.

You see, in my Church, congregations are defined by geographical boundaries rather than preference, not unlike Catholic congregations. When an LDS congregation, called a ward, is too large, it is often split into multiple congregations or wards. When one is too small, it may be added to by redefining the surrounding ward boundaries. When you have two very small wards next to each other, they simply join them together.

Well, this week they unexpectedly dissolved our ward, dividing it into the three surrounding wards. My big sister (figuratively not physically) who lives across the street is now in a different congregation. And while my meeting time is the same, I now meet in a new building, with new people and new responsibilities (oh, we also have lay leadership, so every adult member in good standing holds positions of responsibility ranging from congregational leader to nursery cat herder).

But with the new congregation comes new social anxiety and new agoraphobia. Hence, the fetal position that threatens to overcome me at any moment.

So what is the difference between fear and phobia?

Well, I’m afraid of snakes. Growing up in the high deserts of the Rocky Mountains, we had 3 main kinds of snakes: garden snakes; small, harmless and common. Bull snakes; large, predatorial against other snakes, but harmless against humans. And finally diamondback rattle snakes: aggressive, intimidating, and one of the most poisonous snakes in North America. One who wandered the deserts like I did had to be constantly wary, aware, and armed (usually a .22 pistol, a small shotgun, or at least a rock). I am scared of being bitten by one of these dangerous creatures without the ability to reach proper care. But, despite my fear, I have never hesitated to wander the desert given the chance. Why? Because the fear is both reasonable and capable of being overcome with proper preparation.

On the other hand, I’ve a phobia of spiders. Seeing even the littlest folder spiders, small, harmless and the color of a file folder, these little monsters live in my house by the dozens. And every time I see one my heart races and my palms sweat. The internet is full of jokes about burning down a house because of a scary spider…. but I’ve legitimately considered it for even these inoffensive things. The difference? No preparation can help me overcome my crippling phobia of the eight legged demons.

Fear is both reasonable and overcome-able – phobias…. well, not so much.

So this is a long way of saying…. I’ve a phobia of groups of people. It gets a little better if I can remain anonymous. It gets a lot better when I’m no longer anonymous. We’ll be gathering after our first meeting for the bane of introverts: the meet and greet. I’m not looking forward to that. As I’ve mentioned before, the cane acts like a magnet to the curious. I’ll no doubt be surrounded in just minutes.

So, I’m having some anxiety.

But I’m here. And that’s an important step.


Despair and Hope

I find the relationship linking despair and hope to be fascinating. I just left the doctor for my monthly checkup. I’m on a very high dose of a very powerful drug (I won’t say which), but it provides little relief from my pain.

As I’ve said before, multiple doctors have confirmed that there is no solution for the causes of my pain: no surgery, no injections that we haven’t tried, no therapies, no magic pills. In short, my brokenness cannot be solved. I’ve come to peace with that fact, but it is nonetheless an unpleasant one. For me, the only long term plan is short term pain management.

I participate in some varied online forums. One is a forum dedicated to those of us with fibromyalgia. We call ourselves fibromites, and men being such an anomaly in the fibromyalgia world, I coined the term fibromates to describe those of us with the XY chromosomes. That forum is great. It gives us a group of peers that understand the struggles. It gives us a place to vent, complain, gripe, and moan. But more importantly, it gives us a positive environment for gentle hugs (figuratively). The community is one of uplifting and realistic optimism. We can seek advice and feedback from those who will be more helpful than the ol’ “pick yourself up by the bootstraps” feedback that is all too common toward the disabled communities.

Another forum is dedicated to those of us who struggle with chronic pain in general. A larger community gives us a greater spectrum of feedback and opinion. There are some who deal with neurological conditions, like fibromyalgia, and others with skeletal, muscular, or other conditions, including depression and anxiety. As you can imagine, at least on the surface, this is a more appropriate community for one like me: one who has neurological disorders, as well as muscular and skeletal disabilities, topped off with psychological or emotional disorders; in short, one who is in constant, chronic pain.

The sad truth truth concerning this second forum, however, is that the atmosphere is greatly different than the first. While the fibromyalgia forum is one of positive reinforcement and uplifting optimism, the chronic pain forum is negatively reinforcing. As you can imagine, for those who struggle constantly with the basic tasks of life, depression can set in pretty quickly, and even more powerfully. There, optimistic and hopeful comments are scoffed at and scorned. Weekly I see posts by people who literally are throwing in the proverbial towel: declaring in one open form or another “I can’t handle this pain anymore, I want to and am planning to die.” I mean that there is no equivocation and I’m not reading between the lines, there are literally people declaring the desire and/or plan for suicide. And worse, the community, in its complete understanding, supports the poster with morbid empathy, telling them that their decision is not only understandable, but perhaps even wise.

Empathetically, I understand the desire for death in the lowest of the lows. While these circumstances have never brought me to a suicidal point, I do understand. Even this morning, talking with Jeff, my exceptional pain specialist, I felt¬†near despairing¬†for that sentiment. The cold truth is that, as strong as my medications are, the best I can ever expect from them is about a %50 reduction in pain (and that’s just for my back, as these medications don’t and can’t address the fibromyalgia). I don’t get that much relief; I’m closer to %26-%30 reduction in pain… and that’s about as good as it gets. This truth is discouraging. Even if I make the (incorrect) assumption that my back will never worsen, my pain levels are about as low as they will ever be.

So I understand the desire for the pain to end at any cost… But I can’t agree with it. As Lehi said:

¬†“For it must needs be, that there is an opposition in all things. If not so… righteousness could not be brought to pass, neither wickedness, neither holiness nor misery, neither good nor bad. Wherefore, all things must needs be a compound in one; wherefore, if it should be one body it must needs remain as dead, having no life neither death, nor corruption nor incorruption, happiness nor misery, neither sense nor insensibility. Wherefore, it must needs have been created for a thing of naught; wherefore there would have been no purpose in the end of its creation. Wherefore, this thing must needs destroy the wisdom of God and his eternal purposes, and also the power, and the mercy, and the justice of God.”

In other words, without misery, there can be no joy. Without despair, there can be no hope. So we finally come to the fascinating relationship: there must be ‘opposition in all things.”

God doesn’t give us trials, pain, and misery; rather, he allows those things and turns them to our benefit if we turn to Him. Another prophet of God also empathized with despair:

“O God, where art thou? And where is the pavilion that covereth thy hiding place?… ¬†O Lord God Almighty, maker of heaven, earth, and seas, and of all things that in them are, and who controllest and subjectest the devil, and the dark and benighted dominion of Sheol–stretch forth thy hand; let thine eye pierce; let thy pavilion be taken up; let thy hiding place no longer be covered; let thine ear be inclined; let thine heart be softened, and thy bowels moved with compassion toward [me].”

But in His wisdom, God replied:

“My son, peace be unto thy soul; thine adversity and thine afflictions shall be but a small moment; And then, if thou endure it well, God shall exalt thee on high; thou shalt triumph over all thy foes. Thy friends do stand by thee, and they shall hail thee… with warm hearts and friendly hands.”

So we see in His great Plan of Happiness that trial, tribulation, pain, misery, suffering and even the lowest despair are all allowed to exist in order to provide contrast to the joy, happiness, peace, comfort, salvation and hope that are to be found by the redeeming atonement of the Great Son of God.

I wish I could share this hope with those of my fellow sufferers on the chronic pain forum, but the voice of hope is regrettably not a welcome one. So I write instead here, where I dictatorially control what voices are allowed ūüėČ.

I worry that the topic is heavy, but so is the burden that we all carry, whether you deal with physical pain or not, we all have burdens, trials, and pain. And all of us feel overwhelmed by it sometimes – that’s why understanding the relationship between pain and relief, between sadness and happiness, between despair and hope, is so important. That’s why we have hope: so that we can know the contrast between what we feel and experience now and what we can obtain through the promise of Him who took our burdens upon Himself.

Hope exists, not because we want it to, but because it is the very law of Nature: there must be opposition in all things.

So, my friends, don’t despair. There is hope for relief, even for those of us with the promise of none: after the time of trial, comes the reward of the faithful. Jesus Christ lives. He carried our burdens, so that we might be free of them eventually.