This Very Simple Life We Live

I know we haven’t really used this in a while, because we’ve become more involved with YouTube, but I (Tim) just wanted to give an update.

Following our YouTube shows a bit of us, but the truth is we’re always facing trails in our lives. Be it health (both mental and physical), money, feeling safe, or even being able to function, Emily and I are in a constant battle to maintain a normal life. Emily fights harder than I do, and my fight takes a deeper toll on me than her’s does.

The problem isn’t that we’re unhappy together, far from it, the problem is together we’re fighting in a world that seems unaccepting. Her father doesn’t really believe that Emily is sick. More or less, he believes she’s just becoming like her mother: something of a hypochondriac. I swear to you, with ever fiber of my being, I hate him for feeling this way.

Emily’s step-mother is worse though. Her step-mother is something of a ‘social-alcoholic’, and by that I mean she’s an obnoxious wino/drunk who lashes out verbally at Emily’s father and all of his ties to Emily (including Emily’s sister). From my side, I think of her as a blemish on the world, an ugly spot, that radiates sadness, anger, and negativity around her general vicinity.

That being said, I have a constant twinge of anger when I think of her father and step-mother, but I try to contain it, because I’m not helping by being so angry at them. Emily is so sweet, so idealistic, that she only feels sorry for them for not being able to be happy. I am so negative, that sometimes I can’t fathom how she doesn’t hate her father and step-mother.

I love Emily. I want to (and will) spend my life with her. But, going back to what I initially was saying, we’re in a constant battle.

Emily recently upped her Lyrica (a medicine for fibromyalgia) and it helps, but she’s still very weak, and unable to function. She told me yesterday something along the lines of she needs to space out her days with people other than me, because even talking to others leaves her with fatigue and pain.

I wish I could take her pain away, take her away from here, and give her the life she deserves. Sadly, I face every day knowing that we’ll live paycheck to paycheck in order to maintain this very simple life we live.

 

~Tim

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2 thoughts on “This Very Simple Life We Live

  1. I just discovered your youtube channel and blog today, and I really enjoy the sincerity of the work you do. I really am compelled to let you know that y’all aren’t alone, and at this point there is in fact a chronic pain social movement moving slowly, but with a great deal of emotional, empirical, and moral support behind it. I started a nonprofit with a few people from reddit, and we have several highly motivated, experts in research and and law, and there are a number of other groups just like mine. I’ve been considering starting a youtube page, podcast, and blog for some time, but have been sending letters to legislators, which is of course exhausting. But where are my manners, I’m a chronic pain patient, as I have EDS hypermobility type, so I dislocate bones on a daily basis, and consequently experience large quantities of pain, and I’ve dealt with highly unsupportive family who simply don’t understand, who are mentally ill, and as a consequence cannot understand due to their limited ability to empathize, and I would say this: I understand the righteous indignance behind your feelings toward those who say it is all in one’s head. I typically respond by explaining the underlying pathophysiology, but because people who make such insensitive claims tend to have compromised reasoning abilities (from what I’ve noticed in my limited experience of life, so this does of course, not apply to all), I find that simply pointing out how horrific a thing to say it is to state that one’s pain is all in a person’s head, which is a flawed argument on empirical, moral, and communicative grounds, and then making boundaries clear is a helpful thing to do. Hate is a poison. It is like taking a poison and waiting for the other person to die from the poison you just drank. I don’t recall where I heard this from, but it rings true in such an unfortunate situation, and I understand.

    I also understand your difficult financial situation, though mine is one of having no income, and drowning in student loan debt so that I may conduct research on chronic pain in order to establish the causes of pain in various conditions, and that will hopefully enable other researchers to come up with a cure, because I am painfully aware of the abysmal nature of treatments available, and the gross undertreatment of chronic pain, which is lethal if left untreated and/or inadequately treated (especially when the time scale is around 10-12 years). I would love to speak with you more about what can be done to advocate for Emily specifically, and what can be done on a larger scale.
    You can contact me at tylerdurden497@gmail.com

    This is an important movement, and it will undoubtedly have huge, and long-lasting consequences for society as a whole, because chronic pain patients in my belief exemplify the phrase, “May your life be a work of art.” which is something I have reflected upon frequently throughout my life, and I find that the videos Emily makes are works of art. I was struck by one in particular: https://www.youtube.com/watch?v=zJ-fAu8ZtK0 in this one, the way in which the music matched the sincerity and purity of emotion, well it made me double take and make sure this was not beautiful performance art, but then I realized that it was art, art created by the reality of the life Emily lives, and I thought I would share with you the profound beauty I saw in that video, as a work of art. I believe chronic pain will popularize living life as a work of art, being genuine, and simultaneously creating art in the emotions and way of communication expressed.
    I find that pain (which I think is profoundly fascinating, have round-the-clock severe pain, that is often as debilitating as dislocating my collar bones because I reached for water incorrectly), especially when it is chronic enables humans to communicate to others (who have the capacity for empathy) in a far more genuine, nuanced way that is simultaneously more direct, and has more impact than any other form of communication, and once the chronic pain rights movement gains mainstream media traction, this form of communication will, without a doubt, become one of the most powerful tools the chronic pain rights movement has at its disposal.

    Liked by 1 person

    1. I sincerely apologize for not responding sooner, as I’m sure you can understand, my body has not been the kindest to me lately. That can include hand pain which makes it hard to respond to comments at times, but thank you for being patient. Your comments here and on our YouTube fills me with so much hope, it’s hard to describe! I’m working on responding to you through email, so hopefully I can connect more with you and this idea you have. I think it’s such a fantastic idea to try to change the system, and I want to help any way I can. I’m so glad you like my videos, and hearing that you consider them art makes me tearfully happy. You are such a light in this world, I hope you know that! Soft hugs, and thank you from the bottom of my heart for your kind words Xoxo Emily

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