The Servant Duchess of Whitcomb

The Servant Duchess of Whitcomb
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Monday, June 13, 2016

As The World Slept



As The World Slept

On June 12th, 2016 many people woke thinking it was going to be just another Sunday. To those in the LGBTQIA community of Orlando, they were enduring a nightmare.
Sirens filled the air, bullets ricocheted, screams echoed, and cries and pleas for mercy sounded as those who had gone to Pulse in Orlando, Florida for Latin Night to be themselves, to embrace their truth, to kick off Pride Week, to dance, to love freely, were gunned down in hatred. In fear. In anger.
While the rest of the world slept and was unaware, brothers and sisters, sons and daughters, partners, husbands and wives, lovers, fathers and mothers, friends, family members, colleagues, mentors, were fighting for their lives. Running for safety. Struggling to escape.

Many of them called for help. Alerted family members, local law enforcement, friends on social media, of what was occurring, in a desperate attempt for help. For safety. While a madman calmly hunted them, shooting them. Killing them. Wounding them. Injuring them.
The shooter, for he is not worthy of being named in this post, was “cool and calm” during negotiations, according to various news outlets. He had no regard for the lives of the people he was attacking. He cared not about the couples he was splitting up, the sons and daughters he was taking away from their parents, the fathers and mothers he was taking away from their children, the brothers and sisters he was taking away from their siblings, the friends he was taking away from their support system.
While the rest of the world slumbered, or started their day, the victims of Pulse, tried to get to safety. They barricaded themselves in bathrooms, they ran out the back door, climbed over the fence, helped complete strangers to freedom, tried to patch up the wounded as they ran; all while a shooter intent on taking their lives continued his assault. Many of them escaped. Many of them did not.
The shooter’s father apologized to the victims’ families and to the city of Orlando, while in the same breath offered an explanation for the mass shooting, stating that it was seeing “two men kiss” that led to the hate crime and terrorist attack—because yes, this was both. However, the absurd notion, this bigoted ideology that “gay panic” can lead someone to commit a heinous violent act is nauseating. The very fact that anyone tries to use it to justify their actions is horrible. What about “black panic” or “Hispanic panic” or “white panic” or “women panic” or anything else? When just seeing someone who represents something you don’t like, or don’t agree with sends you into a rage, or a “panic” is suddenly justification for you to attack them or murder them. Will there suddenly be people shooting heterosexual couples? Cisgender, all white couples? What about cisgender, all white, Republican, wealthy, extreme right-wing couples? What if that causes a “panic” in someone? Will that be justification for them to walk into a country club and start shooting? Will the media and news outlets report that it was a mass shooting in a city, as they reported the shooting in Orlando—erasing the fact that it was in a gay nightclub, on Latin night with POC with trans headliners, or will they report that it was a mass shooting in an “affluent, known Republican, extreme right-wing, country club”?
Too long the gay community has been vilified, oppressed, and attacked in public, and now, in our safe haven, our nightclubs, we have another reason to look over our shoulder. To be on alert. To be watchful. While it will not prevent the dance, nor stop our expression of PRIDE, while we still believe (in the words of Lin-Manuel Miranda) “that love is love is love is love is love, and love cannot be killed or swept aside,” the fear that we live with outside in public, as we hold hands with our partners, our lovers, our boyfriends, our girlfriends, our spouses, our significant others, has now followed us inside the very places where we used to let go of those concerns.
As soon as the world awoke, we all watched and listened in horror as details were given. Those who knew someone, who had family, friends, loved ones, etc. in Orlando, around Pulse, or whom they knew were in Pulse at the time, began calling, texting, checking Facebook, hoping for word that they were okay. Hearts in our throats, tears in our eyes, fear clawing away at us. Terror had gripped the LGBTQIA community, our families, our friends, our loved ones, and the city of Orlando. Video after video was played of family members weeping, their tears and sobs burying deep inside those of us who were rooted to the unbelievable, unfolding story. Details unfolded slowly, and still we watched.
In denial.
In fear.
In horror.
Parents of LGBTQIA children reacted all over the world. Whether it was to call, text, or see their children, contact was made. Conversations were had, and parents who had accepted their sons and daughters coming out were having to deal with the very real fear, the reality, of what their children were dealing with, were facing, every day, simply for being who they were. For living their truth. Simply because someone didn’t agree with who they were.
Then, the names of the fallen began to be released, and those of us who were in denial, who thought—who hoped—that maybe, just maybe, this was all just some horrible nightmare gone wrong, something they just couldn’t wake up from, had to face facts that yes, yes, dear god, this actually. Happened.
Tears flowed. Bodies trembled. People clutched each other in sorrow. Some collapsed in grief.
Oh god. Oh god. How could this have happened. Again? And why?
49 people killed, at least 53 people seriously wounded, and that’s just the numbers that have been reported. Will the death toll rise? Will more of the wounded appear?

And as the world struggled to come to grips with this tragedy, controversy after controversy began to pop up. But then, what did we expect? This was both a hate crime and a terrorist attack on the LGBTQIA community in Orlando, Florida. From media outlets who refused to say “gay nightclub” or “hate crime” or “LGBT” in their broadcast whatsoever, thereby erasing the very real reason why the attack happened. Ignoring our fear, downplaying our suffering, brushing aside the agony of the families, and diminishing the lives of the fallen and the wounded. To politicians who used this tragedy to either push their agenda, or to speak hypocritical words of sympathy to a community they’d vilified, attacked, oppressed, and discriminated against, time and time again. Even to politicians who took the time to congratulate themselves on being “right” about “Muslims” and pushing more hateful, Islamaphobic speech and rhetoric, the same kind which led to the LGBTQIA community at Pulse in Orlando in the first place, only by a different party.
But then the love poured in. From celebrities. From countries around the world. From the Tonys. From strangers all over social media. From strangers all over the state who stood in line at blood banks for hours to donate blood and plasma, even arguing about the right for gay men to donate blood to gay men. The Tonys handed out silver ribbons. Google put up a black ribbon on their website. There were Pulse icons made. People changed their logos. Hashtags were made for Orlando, for Pulse, for the gay community. When word came that a man had been prevented from attacking the L.A. Pride Parade, though people were shaken, the community was still even more resolved.
We would not be deterred. We would not be moved. We would not be driven back into the closet. Forced to live our lives in the way that those with certain extreme religious or political beliefs thinks is “acceptable.” We would not cower. We would stand strong. We would stand tall. We would have spines of steel. Our brothers and sisters had not died in vain. We would and we will carry their names in our hearts with us forever, we would carry the weight of the wounded on our shoulders as we continued the march forward towards true equality, safety, and freedom.
This horrible event, no doubt concocted in the shooter’s mind in an effort to weaken the LGBTQIA’s community, did nothing but strengthen us. We ceased any in-fighting, put a halt to any grudges, and instead of separating into cliques, we joined arms, bracing each other up, becoming stronger, becoming one cohesive unit. We did not yield. We did not fall. We did not bend, nor did we break under the assault of the attacker’s weapons. Instead, we began to breathe in sync with one another, our pulse beat as one, strong, our skin became impenetrable, our backs unbreakable. We supported each other and knew that we would continue to do so. The outpouring of love continued on through the night, from James Corden’s opening monologue at the Tony’s through Lin-Manuel Miranda’s sonnet when he won for Best Original Score to Adele’s heartbreaking dedication as she sang during her concert, and much, much more. We, members of the LGBTQIA, community, knew that while we were often the ones on the front lines of this war, there were others, allies, who stood with us, behind us, to hold us up when we grew weary, and even to stand beside us. We did not have to fight alone.
And yes, this was a hate crime. A terrorist attack. Against us. The LGBTQIA community. On Latin Night. While trans POC were on the flyer advertising for the event. We are aware of what this means. We know what’s going on, even if the media wants to pretend that it’s not, but still we embraced our allies because their blood was welcomed at the blood banks, they donated, they offered up support, they held us as we cried, tweeted, retweeted, and marched with us. They stood on the sidelines with us when we needed them to. Pride may be for us, but we still appreciate them.
And then, the world slept again.
And as the world slept, the victims and the fallen, their families, their loved ones, friends, significant others, partners, etc. continued to suffer. When the news vans pulled away, they stayed, waiting to hear word, waiting for a glimpse of their family member, to see if they had made it, hands clutched around cell phones, tears streaming down their cheeks as fear sank deep into their bones. They waited at the hotel, pacing the floors, walking the sidewalks, smoking outside, walking the streets, checking the posted sheets of those who had been located and were in the hospital, receiving treatment, or in surgery, or waiting to be called by phone or by name by the authorities to be told that they’d lost someone that they loved.
As the world slept, 49 members of the LGBTQIA community were lost, and 1 homophobic person snuffed out their lights. 50 lives lost. Over 53 others in the hospital. As the world slept, 49 families had their world’s devastated, whether these were biological families or families by choice, their lives were changed forever.
As the world slept, their tears flowed like rain, never ceasing, their grief felt like a heavy cloud in the air here in Florida. As the world slept, more names were added to the list of the deceased. As the world slept, exhausted from the bickering, from the shock, from the politicizing, from the posturing, from the fighting, from the fear, from the anger, from the hatred, from stirring up the phobia, these families, these friends, these loved ones continued to mourn, to wait, to fear, to grieve.
And as the world awoke again, some of them returned to their lives, having brushed off the residual dust of the previous day’s explosions and returned to their regular lives. Others were once again plastered to their computers, spewing hate and vitriol at the LGBTQIA community, misquoting and mistranslating a Bible and a religion they claim to believe in. A God who represents love and forgives and hates judging, condemnation, murder, and those who misrepresent him. Others climbed online to offer support, financially, with their words, with their blood donations, or by hosting or attending candlelight vigils all over the country and the world.
People cried and wept with the families, mourning with them, mourning for their loss.
For while the LGBTQIA community had suffered an attack on a place that was considered a safe haven for us, while we had lost the innocence and belief that the hatred would not follow us into “our sanctuaries” we had to remember that there were others who lost more.
Parents who lost children. Children who lost parents. Spouses and couples who were separated. Friends who lost their support system, siblings who lost their brother or sister (or both) and their grief was palpable. It could be tasted on the air. It weighed down on us all.
So, let us all take a moment to remember those who lost their lives, and to remember and have a moment of silence for those who were wounded or injured. Let us remember and thank the first responders, the hospital staff, the staff at the blood bank, and the volunteers. Let us remember that we will not be silenced, we will not be broken, and we will not allow ourselves to be driven by fear. We will be strong and we will stand up and remember those who lost their lives in a nightclub on June 12, 2016 in Pulse Nightclub, Orlando, Florida, a LGBT club in a hate crime and a terrorist attack.

The Names of the Fallen:

Edward Sotomayor Jr., 34 years old

Stanley Almodovar III, 23 years old

Luis Omar Ocasio-Capo, 20 years old

Juan Ramon Guerrero, 22 years old

Eric Ivan Ortiz-Rivera, 36 years old

Peter O. Gonzalez-Cruz, 22 years old

Luis S. Vielma, 22 years old

Kimberly Morris, 37 years old

Eddie Jamoldroy Justice, 30 years old

Darryl Roman Burt II, 29 years old

Deonka Deidra Drayton, 32 years old

Alejandro Barrios Martinez, 21 years old

Anthony Luis Laureanodisla, 25 years old

Jean Carlos Mendez Perez, 35 years old

Franky Jimmy Dejesus Velazquez, 50 years old

Amanda Alvear, 25 years old

Martin Benitez Torres, 33 years old

Luis Daniel Wilson-Leon, 37 years old

Mercedez Marisol Flores, 26 years old

Xavier Emmanuel Serrano Rosado, 35 years old

Gilberto Ramon Silva Menendez, 25 years old

Simon Adrian Carrillo Fernandez, 31 years old

Oscar A Aracena-Montero, 26 years old

Enrique L. Rios, Jr., 25 years old

Miguel Angel Honorato, 30 years old

Javier Jorge-Reyes, 40 years old

Joel Rayon Paniagua, 32 years old

Jason Benjamin Josaphat, 19 years old

Cory James Connell, 21 years old

Juan P. Rivera Velazquez, 37 years old

Luis Daniel Conde, 39 years old

Shane Evan Tomlinson, 33 years old

Juan Chevez-Martinez, 25 years old

Jerald Arthur Wright, 31 years old

Leroy Valentin Fernandez, 25 years old

Tevin Eugene Crosby, 25 years old

Jonathan Antonio Camuy Vega, 24 years old

Jean C. Nives Rodriguez, 27 years old

Rodolfo Ayala-Ayala, 33 years old

Brenda Lee Marquez McCool, 49 years old

Yilmary Rodriguez Sulivan, 24 years old

Christopher Andrew Leinonen, 32 years old

Angel L. Candelario-Padro, 28 years old

Frank Hernandez, 27 years old

Paul Terrell Henry, 41 years old

Antonio Davon Brown, 29 years old

Christopher Joseph Sanfeliz 24 years old



Post words of condolences to the families of the fallen, their loved ones, and friends, as well as pictures of LGBT Pride (preferably two men/women of color, since this event happened on Latin Night), or of trans women/men of color in solidarity, and to show that we will not be frightened away, and we will not give into defeat or quit, bend or break. We will not give into fear.
And don’t forget the hashtags: #WeStandWithOrlando #WeStandWithYou #OrlandoStrong #Pride2016 #Pride #PulseOrlando #Pulse #PrayForOrlando #PrayForPulse #GoneButNotForgotten #LGBT #LoveWins #LoveIsLoveIsLoveIsLove




-Vicktor Bailey, out and proud
(aka. Author: Vicktor Alexander)

Tuesday, June 7, 2016

The Emotional Release Of Knowledge



This is a much more personal blog post than I usually post on my author blog and website. This is because of the fact that many of you have sent emails, Facebook messages, and even messages to my assistant, Melissa, asking about me, wondering where I was, and after finding out about the donation page and the FB auction that was started up for me, I decided to do something that makes me uncomfortable, and that I don’t do with people I don’t know well and don’t extremely trust—I’m going to share my personal business with you all.

First of all, thank you, to all of you who donated or who bid. The nurses at James A. Haley Tampa VA Hospital and I were all extremely touched by your generosity, as were my friends and family. I couldn’t believe the number of authors and artists who donated items, the people who bid, and the people who donated money on the other donation page. Though I wasn’t made aware of anything until much later, I was actually moved to tears—and anyone who knows me can tell you that is a very big thing. I feel extremely loved, and hearing the things that so many people said, well, it was very touching. While this is morbid, it was a bit like being at my own memorial service, and being privy to what might be said by those who would be able to attend. It was nice.

And if I’d said something like that at the hospital I’d be on suicide watch for 24 hours. LOL.

Anyway, so, to stop dawdling, here’s what’s happened. Let me give you background:

Four years ago, after having been in the Army and being injured, I was living in New York, and I starting to have pressure in my head. This wasn’t like a “headache-type of pressure”, whenever I described it to doctors starting with my doctor in NY, up until my doctor in Lakeland, FL, I described it as “an alien trying to pound its way out of my head.” It didn’t feel as if there was something crushing my head, it felt as if there was something trying to blow out. It was not a very good sensation. Whenever I would have one of these episodes, I would feel out of sorts after. I would have difficulty understanding people when they talked to me, or responding back, and soon after, I started to have vision problems. It started with my right eye and soon spread to my left. Through all of this I told my doctor in the VA Hospital in NY (Dr. S-as she will be referred to since there are forms filed which list her name regarding this matter) who blew me off. First I was told to “stand up slower” (seriously, that was her diagnosis), then I was told it was vertigo, prescribed new medicine that only made me sleepy but did not take care of the issue, and then my calls were basically ignored, until I had reached a point where the hospital had to assign me a new doctor.

I moved back to Florida soon after, my biological family had come to a “ignore it” tenuous-type of acceptance with my being a transgender gay man who wrote gay romance and wanted to help take care of me. I was back in the medical care of the doctor who had first taken care of me when I’d first been discharged from the Army, who knew that when I said my pain level was 3, for anyone else that was usually a 6 or a 7. When I went to see Dr. D (as I will refer to her) she asked me if I’d seen a neurologist, I told her I had (since I’d thought I had, or been told I had in NY), when she looked it up in the system, she told me I’d seen a neurosurgeon, not a neurologist. Having obtained the bulk of my medical knowledge from Grey’s Anatomy and Scrubs (and now shows like Chicago Med and The Late Shift) I said that they were the same thing. She assured me that they weren’t and scheduled me an appointment with a neurologist in Tampa, at James A Haley. When I got there I gave the neurologist the same list of symptoms, timeline, etc. as I’d given the doctor in NY. I was given an EEG, and afterwards the neurologist told me I had a seizure disorder that he thought may be the cause of everything. He, of course, told me not to quote him.

I was given new medication (of course) and things seemed to almost get better, though I still had these “episodes” of pressure, which were now termed “seizure episodes.” With the medication (if I took them when I was supposed to) they were mostly managed, but the pressure still occurred, the vision problems still occurred, and soon my body “turned” on me.

Some of the health issues I had weren’t in relation to the big issue, they were problems I had parallel to this, liver disease, kidney problems, neuropathy (no, I don’t have diabetes, though everyone keeps trying to tell me I “give” it to me. My dad has it, my grandmother has it, I have friends who have it, and I am extremely sympathetic to those who have it, but my doctor repeatedly assures me that I don’t have it: Vicktor, I know that it seems like you have everything under the sun, but you do not have diabetes), etc. but the doctors were focused on the big issue, especially since it had been going on for so long and I just seemed to be getting worse.

I want to stop here and point out something: I’m a fighter. I’m fiercely independent. I have been since I was a kid. I had to help my mother raise my younger siblings because my biological father was always on the ship, deployed, or off at work, then they divorced when I was 10 and I really stepped up to help her out. I didn’t have a childhood, and while there may be a sliver of me that regrets that, I wouldn’t change my actions. I did what I had to do. So, because of that, when all of this was going on, I was getting very little to no sleep, every night, learning how to be independent. Talking to people, walking hallways of unknown places late at night on my own, sitting in unknown places with my back in the corner, against the wall, because I needed some control in my life. There are a lot of things I did and still do that people don’t know about because there is a driving force inside of me that says I can’t be dependent upon anyone or ask anyone for help. And yes, I know, we all need to ask for help sometimes, but for me, this is an extremely tough thing to do.

Anyway, last year, I developed what I like to call “The Never-ending Sinus Infection” that went on for months. In April, I woke up with such an extreme pain in my left leg that it made me gasp (it felt as if someone had wrapped a rubber band around my thigh and pulled one strand as tight as they possibly could). I could barely walk on it. I started having a tingling sensation in my feet and hands, and for the first time since the pressure started in my years before, I was actually scared. I called my doctor and told her what was going on. Dr. D., knowing me, knew that if I was calling her, telling her that my pain level was at an 8 and I was scared, things were serious. She told me to go to the ER. I did, but not the VA one (which was my error). I was told that I’d just “twisted” my leg and sent home with a prescription for aspirin even though the doctor never ran any tests or touched my leg or anything.

In July, after attending Rainbow Con in Tampa (which I thoroughly enjoyed) I went to Jacksonville to spend time with my daughter until my apartment the VA was getting for me was ready. I was having dinner with my daughter, her girlfriend, their friend, and her two daughters, when I had a sharp pain in my chest. My left arm went numb and I had difficulty breathing. I gasped and told my daughter what was going on, but tried to tell my daughter I would be fine. I didn’t think it was a heart attack. It didn’t feel like what my father had described and there was the pressure thing in my head again. I thought I was just having a bad seizure episode, but when we got to the hospital, I couldn’t move my left arm and I had difficulty holding anything in my left hand. When they went to admit me into the hospital, they realized that my left leg was dragging slightly. After running tests, they came and told me that I had numerous white patches on my brain and that I’d had a stroke. I was stunned. I knew about my seizure disorder but now I was having to deal with the fact that I’d had a stroke and while they weren’t sure if the ”left side weakness” was permanent, it was something that I had to deal with in that moment.

Since the hospital I was admitted at was a civilian hospital, they wanted to transfer me to the VA hospital in Gainesville because the neurologist noticed something “odd” and he wanted me to have in-house physical therapy. They also wanted to run more tests. Knowing that the VA was only going to run the same tests over again that the civilian hospital had and not wanting to go to Gainesville to be in a hospital alone, I chose to leave AMA. I wasn’t back to full-capacity, but I had work to do, writing to complete, I wanted to be with my daughter… and I really, really hate hospitals.

When I moved into my apartment in September, I still wasn’t back to where I used to be and everyone who knew me well could tell. I slept a lot, I had trouble with speech, difficulty typing, I still had left side weakness, and all of a sudden I started having other problems as well. The pressure in my head started to come on all of the time, my service dog I had at the time (Isadora-I don’t have her anymore, I had to rehome her when I got sicker and she needed to go out, be fed, etc.) who was very sensitive to me, spent most of her time, curled up somewhere near me whining, trying to get me to take my meds, eat, reminding me to shower (oh yeah, me, the guy with OCD forgot to shower-OFTEN) and standing outside of the shower just in case I fell or got weak, pressing her body against the curtain so I could lean against her body. I was consistently going to the bathroom, having stomach pains, pain in my left leg, left arm, weakness in both of them, and having memory issues.

It all came to a head in December when I had a seizure and fell in my apartment alone. Isadora barked like crazy until one of my neighbors came by to find out what was going on. The apartment complex I live in is very close and my neighbors check in on me all the time, when the found me, they called 911 and I was rushed to the hospital, things went from bad to worse over the next five-six months.

I had seizures, mini-strokes, they ran tests, I had anxiety attacks, one of my kidneys had liver damage, I have liver disease, my heart was having issues, I was still having tingling in my feet and hands, ringing in my ears, nausea and vomiting that I’d been suffering from off and on for years as well as the acid reflux that I’d been treating by drinking ginger ale and Sprite; and through it all the doctors kept trying to figure out why I was suffering from these issues as well as why I had the pressure in my head, and what the mass on my frontal lobe and the “cluster of cells” at the top of my brain meant. I had numerous MRIs, MRAs, EEGs, EKGs, Echocardiagrams, and other tests done and while they did discover some things and started me on new medications, but still the pressure persisted.

Finally, I was given a spinal tap. The first time they attempted it, they weren’t able to do it because of the pain and my scoliosis. Finally, they had to take me down to the IR department rather than doing it in my room, and giving me a monitored dose of morphine (I spent time being sedated and given monitored doses of narcotics because of my wish to not have anything too strong that I can just give to myself) so they can do the test. Before they gave me the test, I talked to the guy doing the check in and he asked me about why I was there and I told him about how everything had started and for the first time since the medical issues had started, I didn’t describe the pressure in my head as “an alien trying to punch its way out of my skull” I said that it felt like “a pulsing pressure around or in my brain.” He asked me if anyone had talked to me about the possibility of me having: pseudotumor cerebri. I asked him what it was (ummm… hello? Neither Grey’s Anatomy, nor Scrubs, nor Chicago Med, or The Late Shift have ever covered a diagnosis like this before. I would know.), and he told me that it was “a brain tumor that’s not a brain tumor.”

Yeah. Right. Thanks.

So the spinal tap was run, and to make a long story even longer (hahaha) the head neurologist, Dr. G., whose like the best neurologist in VA Hospital or the area or something, came in with the resident who had been assigned to me, to let me know that yes, I had pseudotumor cerebri, and that if it hadn’t been for the IR tech nurse, then it was possible that they might not have been looking as closely for that.

I cried.

Like a bitch.

I sobbed.

Hard.

Not because I had something that is defined as: “False brain tumor”: Symptoms mimic a brain tumor, but no tumor is present (Because this condition causes symptoms of elevated pressure in the head – which is also seen with large brain tumors – but have normal scans, the condition has been called pseudotumor cerebri, meaning “false brain tumor”). But because finally, finally, FINALLY they knew what the fuck was wrong with me.



When Dr. G. started to recite the symptoms, I started laughing:
·         Moderate to severe headaches that may originate behind your eyes and worsen with eye movement
·         Elevated pressure in the head
·         Ringing in the ears that pulses in time with your heartbeat (pulsatile tinnitus)
·         Nausea, vomiting or dizziness
·         Blurred or dimmed vision which can increase over time
·         Brief episodes of blindness, lasting only a few seconds and affecting one or both eyes (visual obscurations)
·         Difficulty seeing to the side
·         Double vision (diplopia)
·         Seeing light flashes (photopsia)
·         Neck, shoulder or back pain
·         Prompt diagnosis and treatment of pseudotumor cerebri is important since it may lead to progressive (and possibly permanent) loss of vision.
·         Neck stiffness
·         Forgetfulness and/or depression
·         Often, pseudotumor cerebri headaches often occur at the back of the head and start as a dull pain, which tends to be worse at night or first thing in the morning.
·         Vision problems in pseudotumor cerebri evolve slowly over time, with temporary episodes of visual blurring that can start in the peripheral field of vision. If the pressure continues to build up, the nerves affecting eye movement can also be affected causing double vision.
·         The individual may not even notice until later in the clinical course of the disorder when the central field of vision is involved and the symptoms become constant. At this point there is a growing risk of blindness.
·         It is increasingly recognized that PTC can also affect memory and cognition.

All of the things he’d described, all of the things above I have gone to the VA hospital for. I’d been treated for, and each time I was told it was something else, something different, something related to something else. To know they were all connected gave me an extreme feeling of relief. So I had an emotional reaction… and I don’t cry.

I asked Dr. G. what was our next step. He told me that usually people were diagnosed and treated early enough that the medicine: acetazolamide can actually help to either hold off or reverse many of the symptoms above, however, with me, I’ve been suffering from this for over four years now and they just “aren’t sure” if the medicine was going to help me, but they wanted to try before they had to take more drastic measures (ie, surgical placement of shunt, or special tube, to redirect fluid from the brain and ease pressure, surgery to decompress increased CSF around the optic nerve, and/or placement of a stent in the draining venous sinuses if narrowed, to improve CSF absorption and reduce intracranial pressure.)

So I was sent home, with a skilled nurse (don’t ask me if she’s a LPN, or RN, or CN or whatever, because I don’t know, and I had one really rude nurse at the VA hospital who practically sneered at me when I called her a nurse and she told me that she was a RN: ex-squeeze the fuck out me, I love nurses don’t get me wrong, but your rudeness is uncalled for), a home-health aide, and a physical therapist, as well as a supervisory nurse to make sure everything runs well. The skilled nurse makes sure I take my meds twice a day (because if they aren’t put in my hand, and I’m constantly reminded to take them, I will forget to take them), the home-health aide comes to help out with the cooking, cleaning, laundry, to help remind me to eat, shower, to make sure I’m up and walking around, and then there’s my physical therapist, whom I call the sadist. He, of course, is the one who is trying to help me get full functionality back in my left side. However, since my first major stroke last year,
I’ve had two confirmed mini-strokes, and each time one of the nurses come they essentially are watching for the possibility of another stroke, a seizure, or the worsening of any of the PCT symptoms. So I receive vitals constantly, phone calls persistently from them, and every cough, sneeze, or twitch is catalogued. And for someone like me who hates asking for help, or telling people what’s going on with me, or can hardly remember it all, it sort of makes me feel violated.

At the same time, I’m grateful for them. Because I have way too much more to do. And these people, these nurses, physical therapists, aides, etc. are helping me to be able to get them done. They are keeping me around for my daughter, for my family, my friends, and for that I’m grateful.

And for those of you who talked to my friends Ryan and Angel, or who called to reassure, encourage, or offer comfort to my daughter, while I was sick, thank you. To the few staff members of Dreamspinner Press who knew what was going on and who wrote to me and kept me entertained, encouraged, or who gave me something to do when I felt like I was going to go crazy, who let me vent, who supported me and didn’t let me get down on myself when I said I was only writing about 150 words a day, thank you so much.

And again thank you to all of you for your support, your donations, your words of encouragement, support, and everything else. You have no idea what it means to me.

So, for those of you who have asked me when the next book for whatever series is coming, or when a book is going to be coming out on audio, or what I’m working on… well, I have one book that I’ve been working on for six months and I have two chapters left. That should let you know how hard things are for me as far as writing right now. But I’m still trying, it’s just taking me some time. The ideas are there, the storylines are there, but getting the connection from my brain to my fingers is taking a lot longer. This blog post, which is coming to an end, took me a week to write, and there might be some things which repeat, I don’t know.

Anyway, I wanted to let you all know what was going on, since you were all nice enough to donate and bid to help me, though I had no idea it was going on (-glares at Pat-) I figured I would share it with you. Thank you for your concern. I’m not back completely, and it will still take me a while to be 100% but I’m just happy to be out of the hospital and to know what’s going on with me.


And thank you to the authors whose books I was able to read (before my iPad died in a horrible toilet related incident), your words made my stay bearable: Amy Lane, Anya Byrne, Aiden Bates, Wolf Specter, Willa Okati, Haylee Wolf, Stormy Glenn, TJ Klune, Andrew Grey, Abigail Roux, Piper Vaughn & Kenzie Cade, Heidi Cullinan, Kellan Larkin, Elaine White, Grace R. Duncan, Hannah Walker, Roan Parrish, Marcy Jacks, Maggie Walsh, Cree Summer, Renae Kaye, Shannon West, Rebecca James, Jess Buffett, Giovanna Reaves, Terry Poole, T.C. Orton, Shae Connor, Jaime Samms (I read new stuff, but The Foster Family is my go-to comfort read of yours), Mary Calmes (I read your newest release but you know which books of yours are my favorites. I returned to Jin and Logan, and Rand and Stef), Tatum Throne, Antonia Aquilante, Lynn Stark, Erin M. Leaf, Morticia Knight, TJ Cross, A.E. Via, Tara Lain, Melanie Hansen, and Felice Stevens. As soon as I get another iPad I’ll be able to continue reading and enjoying your books and the works of others during those times when all I can do is lay in bed.

I hope you all have a wonderful week, and again, thank you so much.


Keep Reading, Keep Loving, &a Never Stop Fighting For A Better World,

-Vicktor Alexander