Just A Little Red

Back Again: Returning To That “Never Again” Place

Posted on April 7, 2016 by DMW

You can never go home again. I think nearly everyone has heard a version of that statement. Well, this place wasn’t home to me, but I lived there for years and it represented the future, potential, dreams, freedom and so much more. That place being LA.

Of course, before three full years there it had chewed me up so thoroughly, I decided enough was enough. I left. And I never looked back. All right, that last bit was a load of crap. After leaving, I did nothing but look back for nearly a year before I died. Yes, I actually died. Sounds fun, right? I don’t recommend it.

Then I spent the next few years fighting to stay alive (chemo, dialysis, autoimmune disease, seizures, strokes, skull fracture… you know the usual) so I rarely looked back. And whenever I did I thought, “Well if this happened and I was still in California, I’d be dead.”

And then I met my husband a short time after my health started to improve. And we dated, moved to Colorado, bought a house, got engaged, got married, traveled the world (okay Italy and the Bahamas, but I like what I said better) and have settled into a domestic routine. Since he (my husband) entered my life, I honestly haven’t thought about any what if’s because I know if I had stayed, we would have never met. So I’m good.

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Posted in Family, home, Journal, Life, Personal, Relationships, Thoughts, travel | Tagged closure, college, contentment, friends, going home, graduate school, LA, Los Angeles, past, peace, reconnecting, reflection, regret, what if | Leave a comment

FIRED: It’s Always A Patient’s Right To Say No

Posted on April 4, 2016 by DMW

Every time you go see a new doctor you are usually given some notices. These most often include a form/list of patient’s rights and responsibilities as well as a HIPPA form regarding patient privacy. Sometimes I wonder if people ever read these things. I skim them, just to make sure they’re standard, but I have already memorized all of them. I know my rights. I know my responsibilities. And I understand what is and is not acceptable under the HIPPA law. I’m good.

I have a lot of medical stuff, it’s this ridiculously long medical resume in a way. Basically, I shouldn’t be here, but I am. It is “statistically impossible” for me to have everything that I do, and yet here I am. (A former neurosurgeon said this before trying to figure out if something else was going on genetically.)

So when I say that I have had hundreds of doctors, I’m not actually exaggerating. I typically have eight to twelve doctors at one time. Now take into account that pediatric doctors don’t stick around once you become of age or the fact that I have moved for college or in adulthood four times and had to get all new doctors, to doctors retiring or moving themselves, and it’s clear as to why that number is so high (I’m 31).

But out of all of the doctors I have had, I have only fired three. Think about it, three out of 100+ is not so bad. The first was my cardiologist – I was thirteen. He came into my post-op appointment without reading anything regarding my surgery. If this was a regular appointment, I would have let it go. But as my official post-op appointment, it was unacceptable. There had been complications in surgery and they could not complete the desired surgery, instead opting for plan B. Plan B meant different expectations, symptoms and post-op complications. Basically, we waited on him in the office for over an hour and when he came in, he had no idea how to conduct the appointment because he didn’t know the most basic of information that is used to frame the entire appointment. I said goodbye – politely of course.

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Posted in Health, History, Journal, Life, Medical, Personal, Thoughts | Tagged deaf, doctor, expert, fired, know your body, let go, medical resume, medical team, patient, responsibilities, rights | Leave a comment

Another Chance: AWP 2016-Los Angeles

Posted on March 31, 2016 by DMW

Last year was my first experience with AWP (Association of Writers and Writing Programs) and its annual conference. In some ways it was wonderful, but in all of those ways – it really didn’t have anything to do with the conference or the institution. When it came to the conference itself, nearly every experience (90%) was fairly negative to very negative.

Why? Well there was the fact that the conference was not accessible to many people with different disabilities. As someone who is disabled and profoundly deaf, this was very troubling. Sometimes it was just that the organization did not have accommodations available that they should have (and are legally obligated to). Other experiences were more extreme, like the speaker on one panel who flat-out refused to use a device necessary for me to hear the panel. He actually jumped away from it like it was a bomb and said, “I’m not touching that!” There was another incident with someone who attended the conference who was sitting in the seat reserved for those with accessibility needs, who had no such needs, and got mad because of the noise coming out my hearing aids. She actually wanted me to apologize to her, on behalf of my deafness.

While I tried to focus on the positive I took away from the experience (which was really seeing old friends, and the collective creative energy that filled the spaces) I couldn’t stop thinking about the bad. Not from a dwelling standpoint, but from one of not wanting them to happen again. I knew I wasn’t going to go back. It wasn’t worth the cost. But then after the organization’s panel selection (not a single disability panel was accepted out of more than 550 accepted events) there was an explosion of controversy (nicely summed up here) that accused the organization of bullying and intimidation tactics as well as Kate Gale writing a horrid piece for the Huffington Post, telling many different minorities to shut-up and let the majority speak for them. After some backlash she took down her piece, but feel free to read it here.

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Posted in Editing, Events, Thoughts, Writers, Writing | Tagged “second chance”, access, ada, americans with disabilities act, Association of Writers and Writing Programs, AWP, bullying, conference, disabilities, discrimination, equality, inclusion, Kate Gale, open letter, open mind, progress | Leave a comment

LA – Here We Come!

Posted on March 29, 2016 by DMW

I am so excited! And nervous, but mostly excited. I left Los Angeles almost eight years ago. And I never thought I would ever go back, with good reason. But now there is a conference and to be honest the main reason I’m even going is because it is in Los Angeles. So I can see old friends and visit old places and perhaps even get a little closure on the place (I am way past closure on the reason for leaving).

Every time we take a trip, I am always nervous and this trip is no exception. I love traveling as in going to other places, but I hate the act of actually traveling. Flying makes me nervous and isn’t the most comfortable because of a few medical conditions I have. Then there is all the normal airport crap. Rental car places, money, etc. I wish teleportation was a thing, even if it was pricey, because it would be so worth it. I’m excited for when we actually arrive in LA and our time there, but the going there and coming back – eh, not so much.

But for once it seemed like we were actually prepared. Like every trip we take we’ll say we’re prepared, but we’re really not. This time, we were 90% packed by Sunday night. The house was clean; I made a list so as not to forget anything. We were good. Which is definitely a good thing since we have to leave at three in the morning! So early, EARLY to bed and all that. I can’t sleep on planes (my husband is lucky, he usually can) but I plan to sleep in the car once we pick up our rental.

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Posted in Family, home, Journal, Life, Personal, Relationships, Thoughts, travel | Tagged closure, college, friends, going home, graduate school, Los Angeles, past, reconnecting | Leave a comment

Easter 2016 – Another Cheesy “With Child” Practice Run

Posted on March 28, 2016 by DMW

I’ll admit it, I can be a little cheesy. All right, sometimes I might just be the Queen of Cheesetown. When it comes to the holidays I tend to be less about old traditions and more about making traditions that are probably odd for a married couple without kids. For me, I want a big family. Children has always been on the menu, it’s just about the right time (yes, go ahead and laugh) and being able to afford them in the first place (we can afford kids once they’re here, but the cost of having one via surrogate is the same as a six-figure mortgage while adoption is more than all of my undergrad student loans combined – that’s a lot of money). But I have all of these ideas and things I want to do with our future children, and well, why wait?

Easter 2014 is when I kind of surprised my husband with my special blend of Easter crazy-cheese. But then last year we were traveling, on the way to a conference in Minneapolis so my husband was spared the sequel to the 2014 Easter festivities. This year – he wasn’t so lucky! 😛 Last Friday, he cornered me and asked, “So, I think we should talk about Easter.”

Easter Baskets 2014

I tried to play coy, “What do you mean?”

But he knew better. “Are you planning anything for Easter?”

I didn’t respond, but I guess my face betrayed me. “That’s a yes,” he laughed. “Okay, I will too.”

I was actually kind of half-surprised that he remembered. Not because he is thoughtless, but because we both are SO busy, and SO tired and trying to get ready for a trip to Los Angeles (we leave tomorrow, at three in the morning!) that it would have been easy to forget. And my husband will be the first to admit he doesn’t have the world’s greatest memory to begin with.
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