Sunday, May 29, 2016

My Thoughts: "Me Before You"

I was first introduced to JoJo Moyes book "Me Before You" after watching the preview for the film adaptation, which is being widely released on June 3. After being immediately drawn to Emilia Clarke's and Sam Claflin's engaging performances, I sent away for a copy of the book. While reading the book at breakneck pace (It was the first book I had read in a few months that I simply could not put down) I was made aware of the controversy surrounding the book and the film. Now that I have finished the book and watched every available trailer and clip available of the film, I feel I can share my thoughts on these works in an informed way.

It is difficult to explain the nature of the controversy surrounding "Me Before You" without subjecting you all to spoilers. However, I can safely say that many disabled individuals and disability rights activists are deeply concerned that "Me Before You" presents disability in a negative light and undermines the resilient nature of many disabled individuals. The thing that strikes me most about the criticism I have read so far (including basically every article I could get my hands on in regards to the subject) is that many of the most vocal critics admit that they are reacting to a synopsis of the work. I can assure you that after reading the book in its entirety, the work (in my opinion) reflects neither of these primary criticisms. In fact, the struggles that the characters face, both internally and externally, speak to the dynamic experience of living with disability and uplifts the reality that disabled individuals (like all individuals) grapple with the challenges of life in the ways that best reflect their individual identities and experiences.

It is important to note that both of the main characters have experienced serious trauma. Will has experienced disability-inducing physical trauma and the emotional trauma which accompanies that experience. Louisa has experienced a temporary physical trauma and the emotional trauma which accompanies that experience.

One of the most popular articles criticizing "Me Before You" (And is, coincidentally, one that a respected disabled friend of mine agrees with and supports) asserts that the story "clearly sets up the idea that people can and should be expected to come to terms with certain kinds of trauma but not others." I feel that the story highlights the complex reality that some individuals can and some individuals ultimately cannot or (assuming ability) will not come to terms with whatever trauma they have experienced.

That Louisa can and/or allows herself to open to the idea of moving "beyond" her trauma-related defense mechanisms/manifestations/emotional choices/realities and Will cannot/will not (at least for some portion of the film... no spoilers about how either character's ability/allowance, refusal/inability unfolds over time) seems to be no more than the dynamic nature of human experience, not a judgment on how anyone else copes, fails to cope or cannot cope with their personal traumas and/or disabilities.

***Side note, it no longer fits with the structure of this piece to include them, but if you are interested in hearing my thoughts about how this overall conundrum relates to my views on Sirius Black, Remus Lupin and Severus Snape in the "Harry Potter" series, just let me know. (Wink!)***

This issue is a complex one for me personally, as I have been affected by a biological parent's severe Vietnam-related total disability due to PTSD and a parental figure's total physical disability due to a neurological condition sustained at birth. My physically disabled "parent" has been able to come to terms with that disability while my mentally disabled biological parent (assuming ability) will not or cannot come to terms with that disability. I have struggled my entire life to understand why some individuals can ultimately "rebound" (in terms of a very narrowly-focused or broad identity, positive or negative view of life and/or ultimately whether one opts to embrace or reject a full and/or lengthy life experience) from their trauma and my biological parent (assuming ability) will not or cannot.

In addition, I am "temporarily disabled" (in both the legal and medical senses of that phrase) due to my autoimmune disorder and have grappled with the same kind of trauma that Louisa experiences. While I have been able to come to terms with that trauma, I am still in the throws of my physical "temporary disability" and I can only say that I am currently dealing with the physical and emotional trauma of my autoimmune disorder very positively. However, things may not always be so positive... I am not stubborn enough to insist that my future self will continue to cope positively with my experiences as they unfold, given that I cannot see the future, future diagnosis and future experiences. I may evolve in ways that are not so life-affirming. I hope that I will be able to remain optimistic and present, but I cannot guarantee that outcome at the age of 33. That "guarantee" strikes me as foolish when I have (God willing) so many more experiences ahead of me that will need to be processed as they occur.

EVERYONE has a right to their opinions and has a right to react to this story in whatever ways they please. I will not judge anyone for their reaction to this work. Period. What I will do is explain that due to my experiences noted above, I believe I am in a unique position to say that as someone who has been compelled to grapple with the issue of "trauma-related processing and identity matters," I wholeheartedly support this film, its message, its writer, its characters and the actors who play them.

I will also say that I believe that this story is uniquely important. Longtime readers of my blog will certainly agree that I almost never make recommendations, but I encourage anyone reading this post to see this film, read the book (or... even better... read the book and THEN see the film). In whatever format you would prefer to explore the story of Will and Louisa, I encourage you to dive into it. Whether you ultimately love, like, dislike or outright hate the material, it will make you think and will make you feel. It will compel you to explore your own emotional limits and your views on the reality of processing trauma. I LOVED it (I already have my tickets to an early showing this Thursday and I am insisting that Samantha read the book) and I hope you will too, but even if you don't, "Me Before You" is a story worth the time it will take you to experience it.

Thursday, May 26, 2016

The Bright Side of Rock Bottom

I almost never drink. There are about a dozen good reasons why I drink so rarely... and one of them is the "in-between-ies." The in-between-ies is a super weird state I find myself in when I drink a certain amount. When I drink very little, I am perfectly fine. When I drink enough to be truly tipsy, I am funny, loud and fine. But when I drink more than a little and less than a lot, I get the in-between-ies. No one else I know deals with this, but it happens to me without fail after I have imbibed a certain amount (more than one glass of wine, generally... although it can happen at the bottom of one glass too). The in-between-ies causes my shoulders, upper back and lower neck to hurt like I have been struck with a major case of whiplash. I writhe around in pain until I drink enough additional alcohol to make the stupid, nonsensical pain stop. The in-between-ies are obnoxious.

I can now see that my last post ("Bootstraps and an Uncharacteristic Rant") is the emotional equivalent of the in-between-ies. I had just enough crap going down in my life that the emotional (and physical... sigh) pain had become obnoxiously unbearable for a few days. Thankfully (???? It would have been nice if it could have lessened instead of increased, but still...) I had even more serious crap dumped on me in the four days following my last post and I have regained perspective. I am at that "drunken" stage of life falling apart in which I am laughing about it and have found a way to be happy and grounded again. Sometimes, life gives you more than you can handle and you writhe around in the pain as a result. However, when life gives you too much to bear, you can sink into the ground for awhile (I completely respect that course of action... and I have done it myself before) or you can regain your balance, laugh at the ABSOLUTE ABSURDITY of how much you are dealing with and move forward in the best way you possibly can.

***In addition, I had an incredibly, incredibly positive experience since my last post as well. While talking to one of my two best friends about my inability to put my head on pillows (and sleep, as a result) she insisted that I borrow one of her two super comfy recliners so that I could have a place to sit relatively comfortably during the day and sleep at night. She got straight to work hauling the thing to my house and I now have a place to ***BE***. (Sometimes Lupus can make existence a pain... thank God for recliners!) Someday, I shall be able to afford my own recliner. But until then, I have one on loan and I could not be more grateful. (Plus, now that I have the recliner, Samantha gets the good spot on the couch, so she is happy too!)***

Thanks to everyone who has been reaching out. And thank you for being patient while I was battling a migraine from Hell itself earlier this week. I'll be getting back to everyone very soon. If you are praying or sending good thoughts/vibes/energy my way... THANK YOU. I believe in the power of these things and I am so grateful for your time and affection.

Sunday, May 22, 2016

Bootstraps and an Uncharacteristic Rant

There is nothing quite like the feeling that is inspired by the words, "I can't pick up your medication because your insurance coverage has been temporarily cut off. Can I buy you three or four pills at full price to get you through the next few days?" Gah. Poor Mark. I am not sure if I felt worse hearing those words come out of his mouth tonight or worse seeing how much it hurt him to have to say them to me.

The long and short is that because of paperwork hoops (and more hoops... oh, the hoops), I have yet to get paid any of my short-term disability compensation for my medical leave. This means that I have not received a paycheck since February. We have made it through until now because I am ridiculously (and I do mean ridiculously) responsible with money. But the money has just recently run out. I do not exaggerate when I say that I am OUT. This is a particularly challenging reality given that right now I am expected to pay Samantha's health insurance premium and my own premium out of my pocket (Lupus pajamas do not have pockets full of money, kids), as these expenses cannot be taken out of my non-existent paycheck. I have no money to pay these premiums, so my insurance has been temporarily suspended. (Lupus patients and a lack of healthcare coverage do not mix.) Therefore, my prescription meds are now so expensive that I can no longer refill them. As of tonight, I am out of my statin (used to keep my insanely dangerous cholesterol levels from spiking even higher... my doctor still cannot explain how on Earth my cholesterol is so freakishly high despite my age, weight and diet) and I am out of the medication that controls my Fibromyalgia pain. My other necessary meds will be due for refills soon.

(Writing this post sucks. I hate this stupid topic.)

I should eventually receive back pay at a rate of 80% (it would have been 100% if I had been able to wait one more week to leave, as my five year work anniversary kicked in at the beginning of March... but I was too sick to wait another week... so, that's fun). However, I have no idea at this point when that back pay will actually come through. Governments, insurance companies and employers do not generally like to make anything about getting paid benefits when one is unwell simple. And until I get paid... well... there is no more medical care or medications in my future until that point. Feeding, clothing and providing for Samantha comes first and I cannot touch the funds I have budgeted in order to make sure that her needs are met. I just can't. And I won't.

When I was pregnant with Samantha, I remember feeling genuinely frustrated when adults would look at me with disgust. After all, these same judgmental adults would probably have condemned me to hell if I hadn't decided to keep Samantha. From the moment that my pregnancy test came back positive, I have been responsible. I have been completely financially and physically independent from the age of 18, save for some WIC assistance, a brief period of a few months on food stamps and some child care assistance money from the county. I worked full-time (or close to full-time) and went to school full-time for seven years while attending a prestigious college and a top-tier law school, all while raising an incredible kiddo. I found my way through passing the bar and securing a job despite the fact that the Great Recession began only a few months after I graduated from law school. I have pulled my bootstraps UP. TO. MY. NECK. I am living the "American Dream" and have never once shied from taking full responsibility for myself and my sweet Samantha.

And yet, 11 years out of college and 8 years out of law school, I am saddled with student loan debt that is so crushing that I can't even talk about it. I tried to type out all the consequences of having three very, very large student loan payments due every single month, but I started crying, so fuck it. (Yep... just wrote the words fuck it. Which is so not like me. Man, I must be hitting my limit.) In addition, I am likely going to lose my job, despite seven years of devoted service to the same company because I haven't been magically healed during the 12 weeks that FMLA protection grants within a single rolling 12 month period.

Even if I don't lose my job, I have lost my healthcare coverage because I simply cannot pay for it with no paycheck coming in for three solid months. And no healthcare means no necessary treatments and no necessary medications. And it means no trip to the high-risk OB so that Mark and I can try to take advantage of the single window of time available to us. (Yes, it is not the world's best decision to have a kiddo when you are going through a period of financial instability... BELIEVE ME, I know. But this is the ONLY SHOT WE HAVE during the ONLY LIVES WE HAVE TO LEAD in order to have a child together. Please don't judge me. And please don't ask me to justify myself, apologize or back down from wanting a child despite this period of financial instability... especially when I spent nearly 10 years of my beloved Samantha's life having to parent her from nearly 3,000 miles away. Please, please don't judge).

I have been a responsible member of society. An incredibly responsible one. I have cared for my child on my own while going to school in order to better my chances of finding stable, gainful and productive employment. I have (this is worth repeating) pulled my bootstraps up to my neck. I have done everything that both liberal and conservative lawmakers could have possibly asked of me. And yet, I am sitting here likely to lose my job and too financially strapped to pay for my own NECESSARY medical care all because I had the audacity to get really, really sick.

There is nothing wrong with the American Dream. But there is something wrong with the state of things that I am finding myself in this position under the circumstances. I feel betrayed by my bootstraps. And betrayed by the messages that lawmakers and society have sent me all these years. I have done what anyone could possibly have asked of me. So, why can't I afford necessary medication and medical services? Not cool, Universe. Not cool.

***This bummed out, uncharacteristic rant has been brought to you by the letter F and the number 11. Today's reality is a production of the "Lupus patient in 2016 America" television workshop. Thank you.***

Sunday, May 15, 2016

Writing Vulnerable Truths

I recently posted a piece that I have since taken down. I honestly do not know if I did the right thing by taking it down, for reasons I will explain, but out of love for my sisters, I have decided to remove it at this point in time.

In this piece, I discussed a fraction of the challenges I experienced while I was younger. I used a single story (in which I was berated severely by one of my step-parents) to illustrate a larger point. I prefaced my post by noting that I had written and erased virtually a dozen drafts of the piece before posting it because my larger point is such an emotionally raw and vulnerable topic for me to write about. I wrote the piece primarily because I blog about my life... and the challenges inherent within my relationship to myself are central to the unfolding of my life and the management of my disease. I believe that sharing one's vulnerable emotional self with the world is brave and strong. I believe that facing the challenges in one's life and sharing one's experience with others is important. I really do.

I suspected that my piece would be controversial, because no expression of one's most vulnerable self is ever an easy task. Nor is any truly vulnerable creative work well received by everyone. But I absolutely did not expect the responses I received. Within the past 20 hours or so, I have received messages of support, love, admiration and praise. I did not seek these things, but they were kindly offered and gratefully noted. However, I also received brutal, brutal comments that cut me down to the quick.

***It is important to note that I WAS INDEED short-sighted when I posted this piece because I did not consider how one of my sisters in particular would react to it. I take full responsibility for that short-sightedness and I sincerely apologize for that.*** However, the post was not written with an angry heart or out of meanness. It was simply expressed as an important, vulnerable part of my experience. I thought I was being brave by sharing this piece of me with you all. Some others did not receive my message as such.

Today I have been called by one person: "selfish to the bone," a "mean jerk," someone who believes that the "world revolves around" me, that I have attempted to "make (myself) more 'special' by torturing others," and that my piece was "completely unnecessary, cruel and self-obsessed." Finally, I was told to "see someone about (my) narcissism" as it is "eating (me) alive and poisoning others around (me)." All because I posted (within a much larger post with a larger point) one story about a single challenge I faced in relation to one of my step-parents.

Writing is a vulnerable thing for me. The most vulnerable thing I do, actually. Every word I write could be looked down upon, criticized or used against me. I honestly do not know how authors who address issues of abuse in their memoirs live with the fallout. And I don't know how I will again write something that is so personal or vulnerable due to this situation.

Dear readers, I need you to know that I always write with positive intention. I have never intentionally tried to hurt another individual or even make another individual uncomfortable by my words. If anything, I hope that my words will comfort others who may have had similar experiences or perhaps even inspire individuals in some way. I have taken down my latest post because I have unintentionally hurt someone in the process of attempting to be vulnerable with my readers. I do not know if it was the right move to make in the larger context of being a brave and open writer. But, I do feel it is important to right any wrong I have committed, even if it was unintentionally done.

Wednesday, May 4, 2016

In Dreams

When I was a little girl, I had horrible nightmares on a regular basis. I dreaded going to sleep because I knew what was coming. But it wasn't until I was 13 years old that I started really paying attention to my dreams as a source of inspiration and self-understanding. At 13, my friends and I learned that dreams occur as a processing mechanism for one's experience. My dear friends Olivia, Allie, Lia and I would dissect each other's dreams with some sort of dream "dictionary" in hand.

At the age of 13, I also began to test a theory put forth by Clarissa Pinkola Estes in the book "Women Who Run With the Wolves." (Wolf metaphors seem to follow me... hell, even "lupus" is Latin for "wolf") This theory essentially insists that women experience "dark man" dreams when their creative instincts are being restricted, hidden, rejected or neglected. As I have been very, very creatively driven since I was small, I felt that this theory might serve as an interesting test for whether it made sense or not for me to put much stock in the hidden meanings of my dreams.

I don't know about anyone else, but dark man dreams follow me to this day whenever I am neglecting my creative drive. They haunt me until I am compelled to acknowledge them. I cannot hide from my dreams. And this reality, in and of itself, is both a blessing and a curse. After all, it is important not to hide from one's innermost truths. However, if I am hiding those truths, there is usually a pretty damn good reason for me to do so.

For example, for the past four or five years especially, I have been struggling with a phenomenon that initially made me really ashamed and embarrassed. I have deeply and profoundly loved three men in my life. Mark is one of those men. However, it is rare that I ever dream about Mark. He and I have such a ridiculously honest and open relationship that I seem to be able to process whatever we are dealing with during daylight hours. However, in addition to being wonderful and inspirational, I had very complex and sometimes challenging relationships with the other two loves of my life. And I dream about them both in either supremely lovely or completely devastating ways at very, very specific times in my personal spiritual journey. I dream about one of these individuals when I have swallowed a great deal of anger or frustration at myself and I dream about the other individual when I have swallowed a great deal of anger and frustration at the world/God/life in general.

These dreams used to make me embarrassed and ashamed for two reasons: One, I felt guilty for dreaming about other individuals while in a loving relationship with Mark. Two, I felt embarrassed and ungrateful for being angry with myself or the world/God/life in general. I strive so hard to be a positive, optimistic person that swallowing ungrateful, angry or frustrated feelings felt only correct. I thought that in order to move forward in a positive way, I needed to neglect, deny or squash any feelings of inadequacy, failure, anger, sadness or frustration.

Thankfully, when I finally admitted this phenomenon to Mark roughly 18 months ago, he was so incredibly supportive and insightful that my first reason for embarrassment and shame melted away. Mark is secure in my love for him (thank God) and actually gave me some valuable insight into this situation when I finally admitted it to him. In addition, I have come to understand that I cannot neglect, deny or squash my challenging emotions related to myself, the world, God and life in general. I must process them and allow them to flow through me in order to let them go in a healthy way. So, whenever either of my lost loves shows up in my dreams (in lovely or challenging ways, it doesn't matter which) I wake up with a sigh in the understanding that I have been swallowing emotions I need to process and that this process needs to take priority in my emotional and spiritual life during that day.

From nightmares to dark man dreams, indescribably lovely dreams to ones in which my teeth all fall out (yes, these tend to coincide with freaking out about money), my dreams now serve as a solid inspiration for my life's direction. Even when I wish I could, I cannot hide from the realities that my dreams alert me to. All I can do is allow them to guide me and to remind me of the emotional and spiritual work that has yet to be done.