An open letter to my parents, in case anyone still in their orbits cares enough to ensure that it gets to them and that they read it:
Hi Dad, Hi Mom.
Off the bat let me address why I did this publicly: Neither of you will speak to me one on one and allow my voice to be heard - your track records prove that. Dad, we haven't talked in over a decade. Mom, you repeatedly shush me, constantly, when I say something you don't like or can't control. Frankly, I'm done trying to communicate with either of you through both barriers, and I can think of no other way to do this because I refuse to speak to either of you alone again without a person of my choosing there.
A fact, I would add, that most people I talk to find deeply upsetting when I mention it casually. We won't talk about the emotional labor required on my part to be able to do so, because it used to be that when I mentioned that it ripped me to shreds every time. I'm doing better, though.
It occurs to me, given the lack of communication between us, that you may not know your kid. Sure, you know the kid you raised and the image you have of me then and your dream of what you wanted me to be. Again, see how the word “you” is doing a lot of heavy lifting in that sentence.
Because the reality of it is at the end of the day, I am an entirely separate human being with different experiences and thoughts and values. I am not discounting the way you raised me, nor am I forgetting where I came from.
So, let me tell you a little bit about who I am today. I am happily married for over ten years now to my lifelong devoted partner, who no matter how much I “screw up” around, has yet to do anything but come at me from a place of love and compassion and support and wanting to understand. We have disagreements. We talk through them. Nothing we have encountered over the course of the last decade has changed our minds about who we married or how much we love them. It is a beautiful, healthy marriage.
We don't have human kids. Neither of us want them. We both have complex neurological conditions that require an immense amount of fortitude to navigate any given day through. Schatzi, Baelish, and Finn, our three cats, are our babies and we spoil them as such.
I am working as a Research and Instruction Librarian. I love the core of what I do, getting to teach students how to use the library to research and how to evaluate the material they do find. It's somewhat painfully ironic to me that I teach information literacy every day, and yet I can reach neither of you with the same message. But I pour my heart and soul into my work approaching everything I do, whether it be teaching in a classroom or writing informational guides, or brainstorming and creating new ways to reach my students, with clear intention and empathy and compassion and understanding. Because perhaps the failure, the need comes from a lack of communication or understanding, or perhaps they simply don't know what they need to know. Either way, I encourage help seeking behavior with no value judgement attached, other than to serve their own curiosity in whichever way they will. I don't ask the political affiliation or religious thoughts of my students, I don't judge when they tell me what topics they are looking for information on. I simply help them find it, and let them make their own conclusions.
Personally and professionally, I try to live by a very simple set of tenets: learning is paramount, asking questions is necessary and never to be judged, communication is essential, curiosity is beautiful and healthy, and tolerance is a cornerstone. Because I have traveled across the world and I promise you, all humans are the same with the same wishes and worries and problems, and at the end of the day if we treat everyone the way we'd like to be treated life turns out a lot better.
Monday, January 26, 2026
Pain of the Daughter: Jan 2026
I went to hug you. To reach out, to offer comfort in a moment when you were clearly overwhelmed. We were there to go through what precious things we have left of our grandparents, your parents, because I couldn't bear the thought of them sitting in a box in a back room of a home they poured their lives and heart into. A home that is now an echo of the decades of life that passed in it before.
It wasn't going to be an easy or emotionless task for any of us. I'd made my peace with our work for the day and was as ready to face it as I could possibly be, but you were really struggling. So I reached out: “Hey, mom, I know this is really hard but I'm here -” but before I could even take half a step towards you with my arms outstretched, you put a hand out in my direction to stop me. It wasn't directly in my face, but it may as well have been.
A critical, pivotal moment. I retreated, and set to whatever box was closest. But it was the last time I'd retreat from your control over the situation. It will be the last time.
Normal people don't lie awake at night questioning their parents' love for them. They don't doubt that because of the way they choose to identify or the company they keep that their parents will outright reject them and refuse to engage with them in anything other than arguments and criticism. They don't fear even talking to their parents because they already know the response is going to hurt. I love you but I can't accept who you are or what you do. I love you but we're not going to talk about that. I love you but. But. But. But. Normal people don't have to fight anxiety spirals and breathe through tears just to go to sleep. Normal people don't see love as conditional - they don't ostracize or criticize.
It wasn't going to be an easy or emotionless task for any of us. I'd made my peace with our work for the day and was as ready to face it as I could possibly be, but you were really struggling. So I reached out: “Hey, mom, I know this is really hard but I'm here -” but before I could even take half a step towards you with my arms outstretched, you put a hand out in my direction to stop me. It wasn't directly in my face, but it may as well have been.
A critical, pivotal moment. I retreated, and set to whatever box was closest. But it was the last time I'd retreat from your control over the situation. It will be the last time.
Normal people don't lie awake at night questioning their parents' love for them. They don't doubt that because of the way they choose to identify or the company they keep that their parents will outright reject them and refuse to engage with them in anything other than arguments and criticism. They don't fear even talking to their parents because they already know the response is going to hurt. I love you but I can't accept who you are or what you do. I love you but we're not going to talk about that. I love you but. But. But. But. Normal people don't have to fight anxiety spirals and breathe through tears just to go to sleep. Normal people don't see love as conditional - they don't ostracize or criticize.
Sunday, January 25, 2026
On Growth and Finding a Voice: Jan 2026
You ever really sit down and have that moment where you realize you're undergoing a major existential identity shift that requires a re-arranging and re-framing of thought and beliefs you held to be air tight?
The number of things I believe in that have utterly blown up in my face is staggering. Things that we're told are rock solid, foundational truths, aren't so black and white when the isht hits the fan and reality sets in. Because no matter how you try to ignore it and shelter in place and remain in your bubble, evil still can and does happen daily. By choosing to not acknowledge and face it and name it, we let it grow. Fester in the dark, slowly amassing its power. And then, once it does come to light, what do we do?
I was raised in the South, surrounded by evangelical Christians. The heart of MAGA land, practically, in the Bible belt. I had multiple copies of the Bible and Bible study books given to me that I did read and work through. Diligently, because I was nothing if not a hard working child who strove to succeed and meet or exceed expectations of those around me. I went to Sunday school. I went to vacation Bible school.
Granted, these weren't regular things for me because I did primarily live in a household that didn't make religion a priority. Instead it made human values a priority: kindness, tolerance, forgiveness, patience, curiosity, learning, and love. Endless, bottomless love.
I have the fondest memories of my grandparents going all in on my interests. My grandmother would attend school awards events and cheer me on, no matter how many times I won. She loved to celebrate and share my work. She baked for EVERYONE and gave from the bottom of her heart everywhere she could. Mr Rogers tells us to look for the helpers. Oma was a shining example.
My grandfather, my rock and north star, also loved cheering on his girls. I have so many memories of being read to in the hammock or at bedtime - wonderful stories full of excitement and adventure and all of the things he prized as most important. Even after I was well on my way to reading aloud myself, I would beg him to read me a story. He always would.
He loved coming to my gifted class every year to talk about his homeland and educate us on the beauty of Germany. He kept doing that long after I left too, because he loved getting to see and talk to the new crops of bright young kids. And most importantly, he loved to read. And learn. Even in the most difficult years of his later life, when he would struggle with it, he would always say he'd be okay as long as he could read his stories. He was terrified of losing that and his mind - his greatest asset.
Both of them would always tell me they wanted me to write. They enjoyed reading whatever I wrote, even if they didn't fully get it or understand it. I guess I have a unique way of looking at the world and a singular talent for expressing things in words (that is not a brag - I am the least self assured person you know). They wanted to read and know and learn and understand.
For the last couple of years, I haven't been able to. Trapped in an endless well of grief and confusion, I lost my voice and myself somewhere along the way. And then, stuck in traffic on the 101 yesterday evening, I felt a gentle little spiritual bonk that somehow unlocked something critical - kind of like when Aang gets slammed into a rock and his Chakra suddenly opens (those who know, know). They wanted me to *write*. They didn't care about what or how. They wanted me to write because they knew how much I needed it. And they knew I wrote best from the heart.
Sorry it took me so long Ops - I'm a little slow these days, but I'm here, and I'm doing it.
The number of things I believe in that have utterly blown up in my face is staggering. Things that we're told are rock solid, foundational truths, aren't so black and white when the isht hits the fan and reality sets in. Because no matter how you try to ignore it and shelter in place and remain in your bubble, evil still can and does happen daily. By choosing to not acknowledge and face it and name it, we let it grow. Fester in the dark, slowly amassing its power. And then, once it does come to light, what do we do?
I was raised in the South, surrounded by evangelical Christians. The heart of MAGA land, practically, in the Bible belt. I had multiple copies of the Bible and Bible study books given to me that I did read and work through. Diligently, because I was nothing if not a hard working child who strove to succeed and meet or exceed expectations of those around me. I went to Sunday school. I went to vacation Bible school.
Granted, these weren't regular things for me because I did primarily live in a household that didn't make religion a priority. Instead it made human values a priority: kindness, tolerance, forgiveness, patience, curiosity, learning, and love. Endless, bottomless love.
I have the fondest memories of my grandparents going all in on my interests. My grandmother would attend school awards events and cheer me on, no matter how many times I won. She loved to celebrate and share my work. She baked for EVERYONE and gave from the bottom of her heart everywhere she could. Mr Rogers tells us to look for the helpers. Oma was a shining example.
My grandfather, my rock and north star, also loved cheering on his girls. I have so many memories of being read to in the hammock or at bedtime - wonderful stories full of excitement and adventure and all of the things he prized as most important. Even after I was well on my way to reading aloud myself, I would beg him to read me a story. He always would.
He loved coming to my gifted class every year to talk about his homeland and educate us on the beauty of Germany. He kept doing that long after I left too, because he loved getting to see and talk to the new crops of bright young kids. And most importantly, he loved to read. And learn. Even in the most difficult years of his later life, when he would struggle with it, he would always say he'd be okay as long as he could read his stories. He was terrified of losing that and his mind - his greatest asset.
Both of them would always tell me they wanted me to write. They enjoyed reading whatever I wrote, even if they didn't fully get it or understand it. I guess I have a unique way of looking at the world and a singular talent for expressing things in words (that is not a brag - I am the least self assured person you know). They wanted to read and know and learn and understand.
For the last couple of years, I haven't been able to. Trapped in an endless well of grief and confusion, I lost my voice and myself somewhere along the way. And then, stuck in traffic on the 101 yesterday evening, I felt a gentle little spiritual bonk that somehow unlocked something critical - kind of like when Aang gets slammed into a rock and his Chakra suddenly opens (those who know, know). They wanted me to *write*. They didn't care about what or how. They wanted me to write because they knew how much I needed it. And they knew I wrote best from the heart.
Sorry it took me so long Ops - I'm a little slow these days, but I'm here, and I'm doing it.
On Renee Good: Jan 2026
I'm just going to get real for a moment and speak my own mind and truth instead of sharing posts that get buried by the algorithm. Maybe someone will see it. Maybe they won't. Either way, the catharsis of writing it gets it out of my head and keeps me from another sleepless night.
The thing that struck me the most about Renee Good, besides the blatant fascism and indisputable extrajudicial cold blooded murder, is that it could've been me. She was 37 years old, she'd gone out to protect her friends and neighbors. Something Jon and I would do in a heartbeat, and something we did when the jack booted thugs came to our city. We never encountered any in person, but what if we had?
I would've done the same thing. Nonviolent resistance. Looking at someone who is armed and violent and choosing love, saying "I'm not mad at you" is an act of bravery. It is the heart of a hero. When masked thugs reach for my door handle and tell me to get out of the car, I am also driving away.
That's important to keep in mind here. Masked thugs refusing to identify themselves, with no legal basis for stopping an American citizen.
A lot of people have said "if she had just complied." Did you hear the venom in his voice as he called her a fucking bitch after he shot her? If she had complied, what would've happened?
Any woman who has been abused or experienced violence at the hands of a man with no moral compass knows that tone of voice. Knows that venom, knows the danger, and knows the smart thing to do is to disengage. Get away. Of course, they've also already done the math of what happens when they do disobey - will the reaction be worse?
Turns out, it was. He shot her. Three times. What law enforcement triple taps an unarmed woman?
But back to the heart of the post. Because it doesn't end there. It continues with a government regime who immediately gaslights an entire nation about what happened and whisks the offender away into hiding so they don't face consequences.
As a woman also harassed and taken advantage of by men who experienced no repercussions, no change to their lives while the victims were left picking up the pieces of their actions and the trauma, watching this unfold in real time on a national scale is triggering.
Even more triggering is when you see yourself in the victim, and then you go looking for comfort or wanting to reach out just to see if this was maybe a breaking point for the people you love but keep at arms length and hope that one day they come to their senses through that love. And then you find your father posting how this woman you see yourself in deserved to die because she'd been brainwashed by the queer agenda and didn't obey. Strike one.
I have nothing but love for my father, but I'm done. I finally blocked the profile so I couldn't go searching again for another heartbreak. I can't keep believing in a redemption that clearly isn't coming.
I'm patently afraid to reach out to any of my maternal family, those who grew up with and alongside me, because I know their predispositions for MAGA Christianity. The ones who share it openly have already made their allegiances clear. I am all the identies they hate, I am the outlier. They've already ostracized me. And frankly, I am too scared of how much it would hurt to know the ones I do think highly of still would say the same things if I confronted them to their face.
These children of immigrants who came to the United States over six decades ago themselves to make a better life in a country that wasn't recovering from the horrors of facism.
That includes my mother, who vehemently shushed my sister for trying to make a political joke around her last time. Who my husband and I walked on eggshells with to make sure that nothing got brought up that would start a fight so we could all just have a decent time in each other's company. Do you know how exhausting that is? Do you know how many sleepless nights I have had replaying going to give my mother a hug and her putting her hand up towards my face to stop me and tell me to back off?
Tell me what's left for a scared soon-to-be 37 year old woman who dares to love women and has a car covered in bumper stickers and would take to the streets tomorrow to do the very same thing Renee was shot for?
Saturday, January 24, 2026
Untitled Poetry: Sept 2018
your name falls from my lips like a prayer
whispered into the darkness
hands caress skin, stroking my soul
riding the crests and troughs of ecstasy
sweet nectar flowing from within
your bright eyes shine through the blackness
I open mine to meet them
to greet them
to mirror the want and the need and the lust
I open my eyes and it is dark again
the hands are my own
and the nectar nothing but tears.
whispered into the darkness
hands caress skin, stroking my soul
riding the crests and troughs of ecstasy
sweet nectar flowing from within
your bright eyes shine through the blackness
I open mine to meet them
to greet them
to mirror the want and the need and the lust
I open my eyes and it is dark again
the hands are my own
and the nectar nothing but tears.
My Love, My Hero: Februrary 2019
You guys, story time.
MS and the craziness surrounding it doesn't just affect me. It's not just a strain on MY physical, mental, and emotional health. It affects my family and my household too. It affects my husband. Can you imagine having to suddenly send an email saying you're going to miss a meeting because you have to pack up and take your wife to the ER, because she can't feel or use her left arm well and her legs are buckling? Can you imagine watching her, for a week, struggle to even function halfway normally because she is being pumped full of steroids that cause her to have constant panic attacks, mood swings, nausea, all while trying to deal with the fact that suddenly her body will not listen to what she's trying to tell it to do?
All this, all you can do is watch. Fetch an ice pack. Offer a gentle hug. Listen to her cry. Then, suddenly, a few days after treatment, she's watching a commercial for some sort of egg scramble and she becomes HUNGRY for the first time in days, and at 9:30 in the evening you get up and fry her up a few eggs for a sandwich because hey, she's eating something other than a cracker.
And then the next day, when she finally feels like maybe she can eat a whole meal for dinner and she has a really random craving for a homemade burger and some fries - when she wakes up from an evening nap, there is is, a homemade burger and fries.
This man right here is my world. My rock. He has gone above and beyond for me everyday and I can't even begin to describe what it means to me.
MS and the craziness surrounding it doesn't just affect me. It's not just a strain on MY physical, mental, and emotional health. It affects my family and my household too. It affects my husband. Can you imagine having to suddenly send an email saying you're going to miss a meeting because you have to pack up and take your wife to the ER, because she can't feel or use her left arm well and her legs are buckling? Can you imagine watching her, for a week, struggle to even function halfway normally because she is being pumped full of steroids that cause her to have constant panic attacks, mood swings, nausea, all while trying to deal with the fact that suddenly her body will not listen to what she's trying to tell it to do?
All this, all you can do is watch. Fetch an ice pack. Offer a gentle hug. Listen to her cry. Then, suddenly, a few days after treatment, she's watching a commercial for some sort of egg scramble and she becomes HUNGRY for the first time in days, and at 9:30 in the evening you get up and fry her up a few eggs for a sandwich because hey, she's eating something other than a cracker.
And then the next day, when she finally feels like maybe she can eat a whole meal for dinner and she has a really random craving for a homemade burger and some fries - when she wakes up from an evening nap, there is is, a homemade burger and fries.
This man right here is my world. My rock. He has gone above and beyond for me everyday and I can't even begin to describe what it means to me.
The Men We Trust: February 2017
It was a hot Florida summer, the last before my senior year of high school. I, an overdeveloped girl of 17 was in my typical summertime outfit of short shorts and a strappy tank, sitting on the couch, trying to cool off and watching TV. He came into the room, handed me a note. “I’m going to go take a shower and masturbate. If you want to come watch, act like you’re getting clothes out of the closet.”
I recoiled in shock. He apologized like he’d made a mistake. The conversation we had an hour later when he finally managed to coerce me into being alone with him again was completely one-sided. I knew exactly what I had been doing. We had been playing a game, teasing eachother, and I had been a willing participant. He’d been watching so long.
I was 17. He’d been my stepfather for 15 years of my life.
Fast forward a few years later. I’d been dating a really nice guy a few years older than me. Gentle giant type, worked in medical. Sweetest person ever. Except one weekend, we were going away together to a convention. I stayed the night with him the night before we were to leave because it was an early departure. We wound up going to his friend’s party, and had a bit to drink. I passed out and he woke me up later and raped me. I cried. I went to the convention with him, we argued constantly. I ended the relationship when we got back home – never telling a soul the reason we’d had the “big breakup argument.”
I was 19. He’d been my boyfriend for months.
Fast forward again. College now, living on my own, meeting new people and having a good time. One night after a few hours bar hopping, hanging out with friends, I get a little too drunk to drive home. No problem, as I knew most of the bouncers really well, and one offered to drive me back to my place and make sure my car didn’t get towed. I knew his wife. I did the sensible, responsible thing.
Only when we got back to my place, I was dropped off, and then told that I “owed” him for the favor. Too intoxicated to fight back, to protest more than “this is wrong,” he raped me.
I was 21. His wife was my best friend at the time. She found a compromising photo of me on his phone a few weeks later, and blamed me for trying to wreck her home. It was my word against his. I cut all ties, and told no one else.
If you’re thinking there’s a common thread here, and that it’s that I should be blamed for being intoxicated in several cases, you’re dead wrong. Instead why not assign the blame where it’s really due, to these men who had earned my trust and then took advantage of that privilege in the worst way. It’s not like these people were strangers I met once, twice. Not like they were just people who snatched me off the street. They were people I trusted, people with power who chose to abuse their positions.
Why has it taken me so long, so many years of silence to speak up? Fear, anger, regret, remorse, self-loathing. In every case, I heard at least once that it was MY fault, that I had caused this to happen to me, that I was to blame for acting a certain way and inviting this behavior. The thing is, I’m not sure the outcomes would’ve been any different if I had acted any other way, and in any case, it’s irrelevant because it HAPPENED, and I will never get those moments or the aftermath back.
Yet I refuse to carry the shame any longer.
I recoiled in shock. He apologized like he’d made a mistake. The conversation we had an hour later when he finally managed to coerce me into being alone with him again was completely one-sided. I knew exactly what I had been doing. We had been playing a game, teasing eachother, and I had been a willing participant. He’d been watching so long.
I was 17. He’d been my stepfather for 15 years of my life.
Fast forward a few years later. I’d been dating a really nice guy a few years older than me. Gentle giant type, worked in medical. Sweetest person ever. Except one weekend, we were going away together to a convention. I stayed the night with him the night before we were to leave because it was an early departure. We wound up going to his friend’s party, and had a bit to drink. I passed out and he woke me up later and raped me. I cried. I went to the convention with him, we argued constantly. I ended the relationship when we got back home – never telling a soul the reason we’d had the “big breakup argument.”
I was 19. He’d been my boyfriend for months.
Fast forward again. College now, living on my own, meeting new people and having a good time. One night after a few hours bar hopping, hanging out with friends, I get a little too drunk to drive home. No problem, as I knew most of the bouncers really well, and one offered to drive me back to my place and make sure my car didn’t get towed. I knew his wife. I did the sensible, responsible thing.
Only when we got back to my place, I was dropped off, and then told that I “owed” him for the favor. Too intoxicated to fight back, to protest more than “this is wrong,” he raped me.
I was 21. His wife was my best friend at the time. She found a compromising photo of me on his phone a few weeks later, and blamed me for trying to wreck her home. It was my word against his. I cut all ties, and told no one else.
If you’re thinking there’s a common thread here, and that it’s that I should be blamed for being intoxicated in several cases, you’re dead wrong. Instead why not assign the blame where it’s really due, to these men who had earned my trust and then took advantage of that privilege in the worst way. It’s not like these people were strangers I met once, twice. Not like they were just people who snatched me off the street. They were people I trusted, people with power who chose to abuse their positions.
Why has it taken me so long, so many years of silence to speak up? Fear, anger, regret, remorse, self-loathing. In every case, I heard at least once that it was MY fault, that I had caused this to happen to me, that I was to blame for acting a certain way and inviting this behavior. The thing is, I’m not sure the outcomes would’ve been any different if I had acted any other way, and in any case, it’s irrelevant because it HAPPENED, and I will never get those moments or the aftermath back.
Yet I refuse to carry the shame any longer.
Letter from a Disabled Twenty-Something: July 2016
An open letter to the gate agent who judged too quickly:
Look, I get it. I look like a perfectly healthy, if somewhat overweight, 27 year old with crazy blue hair. On top of that, I'm a lazy American. However, I assure you that what you didn't see, the fact that my body is under constant assault from itself every single day thanks to Multiple Sclerosis, is what matters.
I had 45 minutes to make a connection. So, knowing that my body most likely didn't have the energy to rush all the way across an airport to an unknown gate, I asked the flight attendant if they would kindly let the gate know I'd be needing assistance. Do you have any idea how embarrassed, how mortified I was to even have to ask if they'd have a cart or a wheelchair ready as a 27 year old? I wrestled with the decision for a good 30 minutes before I decided to do what I knew was the right thing for my exhausted legs. Not only for my sake, to save my energy and conserve for the next 8+ hours of travel, but also for my husband, who'd have to worry about both making it to the next gate on time and a wife who couldn't keep up. The flight attendant was kind accommodating, and understanding, and asked that assistance be ordered to the gate. She made me feel so much better about what I asked that I was okay with it by the time the plane parked.
Of course, being delayed, we had to deplane with stairs instead of parking with a gate. I sucked it up and toted my carry on down, since I can still walk well enough, and boarded the bus to the terminal, knowing I'd be okay when I got inside.
I was not. Airport assistance had no knowledge of my name. When I asked if there was a cart or a chair I could take to my next connection, it wasn't possible, but I was shown the lift upstairs instead of the escalator or stairs. Fine. I made it up and ran into you. You were asking other passenger about connecting flights and I overheard, so I came to ask you about ours. You told me there was no way we'd make our connection so you had already rebooked us on a route that required a stop, but we would need of hurry to make the gate because that flight was leaving soon anyway. When I expressed dismay and then stated that I was physically unable to run, you looked surprised and said that oh, we didn't need to run anyway, the gate was right around the corner and we could make it. Handed us the info and sent us on our merry way.
Your definition of "right around the corner" is not the same as mine. Thinking it was a gate we were close to, I decided to just stop arguing and make the trip so we could make it in time to board this flight, scheduled to leave 15 minutes after our original departure time. Mustering my reserves, we sat off and I discovered right around the corner was the next terminal over, and while connected, it was a fair distance away. When we made it to the gate, it was closed. The agents didn't want to let us on the flight at first. They were shocked we'd been rerouted to this flight when it was also scheduled to depart rapidly. After some back and forth and explaining the situation, they held the plane and allowed us to board. We went down and out to another bus, and boarded the new flight with stairs.
By the time I made it into the cabin, I was greeted by a very concerned attendant who kept asking me if I was okay and ushered me to my seat, helping with bags. I'm sure I looked nothing short of a disaster at this point. After sitting and water, I was okay again, enough to explain what had happened and enough to finally let my feelings about it catch up with me. I was angry, frustrated, embarrassed, and overly exhausted, but decided to let it go and focus my energy on getting home.
We did in fact eventually make it to Abu Dhabi. Our 5 bags didn't make the transfer, even though bags technically make it through airports faster than people. There wasn't enough time. Hopefully we'll see them again soon. I have slept constantly since we've been home, thanks to the combination of jet lag and chronic illness fatigue, but I am thankfully home and mostly well.
I'd let it go. I was okay with just not mentioning any of what happened at all (after all I still burned with a degree of embarrassment), but then I thought about how lucky I was that even though it was a trial on my body that I will likely pay for for days, I was still able to do it, and how my fellow comrades with invisible illnesses who might be much worse off than I am would still be sitting, stuck without help in an airport several thousand miles away from home. So I decided to pen this letter not just for me, but also for the rest of us with MS or other diseases that limit our ability to function normally. We don't have visible handicaps, but we still deal with an incredible amount of pain and exhaustion in doing even the smallest things. I humbly ask that maybe next time someone expresses a limitation to you, you don't judge them on appearance alone and instead listen to what they're saying. Help them. Your kindness will not only be welcomed and appreciated, but come back to you as well.
Sincerely,
An MS warrior.
Stream of Consciousness at Midnight: April 2017
Most people get to wait until mid life to undergo an identity crisis. I don't get that luxury.
Who are you, in the twilight, when you're all alone with your thoughts? Who am I?
Not easy questions to answer. Not easy questions to ask.
I am a dreamer. A seeker of knowledge. A soul lost in a vast ocean, miles from any land. Thrown into the waves of upheaval by forces I cannot control. A creative who lost touch with a spirit that drove her. A spirit she now seeks to touch again, needs to touch again, to sustain her. Grasping for a life raft, for something, anything, when it feels like nothing surrounds but emptiness.
So we go back to the beginning. We start again. Find solace in the far away lands and fantasies we were always able to escape to. Where we could be strong, powerful women in our own right, where we were no longer tiny and ignored. Where passion drove us to assert ourselves and demand a place in the universe that was uncompromising, untouched by the pain. Where we twisted loneliness into strength and painted masterpieces with sorrow. Where we were understood without words, where we needed say nothing to open ourselves to others and show the wonder and beauty we held so close.
To dream in color, untouched by shrouded nightmare of reality. A pure place, a safe place.
Start again. Slowly unfurl like a cat stretching in the morning rays of an awakening sun. Shine light in the dark, dusty cabinets and brush away the cobwebs.
When the right words fail, make do with the ones we have. The visions are so much richer, so much realize in our minds that to try to touch them, describe them, share them is an exercise in futility all its own. To not see the forest for the trees, yet oh, the trees.
When nothing makes sense and logic fails, stop trying to force order and control. Embrace the waves. Splash, swim, relish in the weightlessness. Float, flow. Allow yourself to be swept away by the tides. Stop struggling and let go.
Who are you, in the twilight, when you're all alone with your thoughts? Who am I?
Not easy questions to answer. Not easy questions to ask.
I am a dreamer. A seeker of knowledge. A soul lost in a vast ocean, miles from any land. Thrown into the waves of upheaval by forces I cannot control. A creative who lost touch with a spirit that drove her. A spirit she now seeks to touch again, needs to touch again, to sustain her. Grasping for a life raft, for something, anything, when it feels like nothing surrounds but emptiness.
So we go back to the beginning. We start again. Find solace in the far away lands and fantasies we were always able to escape to. Where we could be strong, powerful women in our own right, where we were no longer tiny and ignored. Where passion drove us to assert ourselves and demand a place in the universe that was uncompromising, untouched by the pain. Where we twisted loneliness into strength and painted masterpieces with sorrow. Where we were understood without words, where we needed say nothing to open ourselves to others and show the wonder and beauty we held so close.
To dream in color, untouched by shrouded nightmare of reality. A pure place, a safe place.
Start again. Slowly unfurl like a cat stretching in the morning rays of an awakening sun. Shine light in the dark, dusty cabinets and brush away the cobwebs.
When the right words fail, make do with the ones we have. The visions are so much richer, so much realize in our minds that to try to touch them, describe them, share them is an exercise in futility all its own. To not see the forest for the trees, yet oh, the trees.
When nothing makes sense and logic fails, stop trying to force order and control. Embrace the waves. Splash, swim, relish in the weightlessness. Float, flow. Allow yourself to be swept away by the tides. Stop struggling and let go.
Why The Bear: May 2024
I love that people seem incredulous that the answer to the man vs bear debate (if you haven’t been keeping up, a simple question was posed: “Would you rather your daughter be alone in a room with a man or a bear?”) would be the bear, without hesitation. It’s simple, really:
The bear didn’t stand in front of a 17 year old girl it was supposed to protect and bring her entire life crashing down. It didn’t sneak into her bedroom at night, pretending to be drunk and confused when caught. It didn’t repeatedly expose itself to her. It didn’t stand there, facing her, telling her it was her fault, she provoked it, even invited it, when it decided the shadow game it had been playing was enough and invited her to actively join. It didn’t call her a liar. It didn’t threaten her. It didn’t tell her it owed it. It didn’t send her into a tailspin of trauma and depression that would require years of therapy, countless medications, and an anxiety disorder. The bear didn’t cause her to doubt her own memory or wonder what else she repressed and missed. It didn’t cause her to blame herself for a family falling apart, to give up a dream and settle for more time in a small town so she could help and support, putting her dreams of graduating high school and going to a prestigious university on hold. It didn’t get to walk away scot free, continuing its life with no contemplation that what it had done was wrong and facing no consequences.
It didn’t force her to stay quiet years later when other bears became aggressive, because after all, it was her fault and she had put herself in that situation/asked for it/owed the bear.
The bear didn’t cause her to sit in traffic on a morning commute nearly two decades later and relive every terrible moment, crying for a broken inner child, as she was forced to contemplate why, unequivocally, she’d take her chances with a bear every single time.
#ichoosethebear
The bear didn’t stand in front of a 17 year old girl it was supposed to protect and bring her entire life crashing down. It didn’t sneak into her bedroom at night, pretending to be drunk and confused when caught. It didn’t repeatedly expose itself to her. It didn’t stand there, facing her, telling her it was her fault, she provoked it, even invited it, when it decided the shadow game it had been playing was enough and invited her to actively join. It didn’t call her a liar. It didn’t threaten her. It didn’t tell her it owed it. It didn’t send her into a tailspin of trauma and depression that would require years of therapy, countless medications, and an anxiety disorder. The bear didn’t cause her to doubt her own memory or wonder what else she repressed and missed. It didn’t cause her to blame herself for a family falling apart, to give up a dream and settle for more time in a small town so she could help and support, putting her dreams of graduating high school and going to a prestigious university on hold. It didn’t get to walk away scot free, continuing its life with no contemplation that what it had done was wrong and facing no consequences.
It didn’t force her to stay quiet years later when other bears became aggressive, because after all, it was her fault and she had put herself in that situation/asked for it/owed the bear.
The bear didn’t cause her to sit in traffic on a morning commute nearly two decades later and relive every terrible moment, crying for a broken inner child, as she was forced to contemplate why, unequivocally, she’d take her chances with a bear every single time.
#ichoosethebear
Father Figure Part 2: Oct 2025
When I saw Opa declining and lost, on his own without Oma and struggling, I made a vow that I wouldn't abandon the only father figure that had been there for me. My fragile peace and psyche had lost so much and the only foundation I had left needed me.
I ran home to dedicate my life to giving back and being there for him like he always had for me. It was the absolute least I could do, and how I felt I could actually be helpful and do something positive and impactful and make a difference that could give back to the precious few family I had left.
I know I'm not perfect, nor am I the amazing and tireless housewife Oma was. But every single thing I did I did from a place of bottomless, deep love and gratitude filled with the years and lessons he gave me. And I do not regret one single minute of it despite everything I went through.
I'll never forget the last time I left him, seemingly settled on his own. “You know I'll always love you.” There was something in the way he said it, a finality, like he knew he wouldn't see me like that again. And by the time I made it back to him, he couldn't speak. But I knew.
That loss, the loss of the final, perfect father figure, undid me. And I still struggle, but I wake up every day wrapped in his love and hopes and wishes for me, and I try to live my life in his image.
I ran home to dedicate my life to giving back and being there for him like he always had for me. It was the absolute least I could do, and how I felt I could actually be helpful and do something positive and impactful and make a difference that could give back to the precious few family I had left.
I know I'm not perfect, nor am I the amazing and tireless housewife Oma was. But every single thing I did I did from a place of bottomless, deep love and gratitude filled with the years and lessons he gave me. And I do not regret one single minute of it despite everything I went through.
I'll never forget the last time I left him, seemingly settled on his own. “You know I'll always love you.” There was something in the way he said it, a finality, like he knew he wouldn't see me like that again. And by the time I made it back to him, he couldn't speak. But I knew.
That loss, the loss of the final, perfect father figure, undid me. And I still struggle, but I wake up every day wrapped in his love and hopes and wishes for me, and I try to live my life in his image.
Father Figure: An Essay: October 2025
The phrase leaves a bitter film in my mouth - it's not one I have positive associations with. The hurt and betrayal, the righteousness of a daughter wronged, turning the tables and taking back her power and her voice that Taylor sings with such conviction - that I can feel, viscerally in my body.
But you had fathers! Multiple! They were there your whole life!
They were. I have fond memories of growing up and spending summers in Georgia with my bio dad, living the small town Southern dream, slow and simple and sweet. My dad taught me self-reliance and resilience. He never shied away from teaching his daughter about the mechanics of cars or how to DIY just about anything. He let her help build his house. I learned how to make a cobbler from fresh berries, I picked and shelled pecans, peas, corn. All while being taught about a loving, forgiving, and patient Christ.
I had a step-dad I adored and called dad. I was a baby when my parents divorced, and he was my father growing up. I grew to love rock music, science fiction, comics, and fantasy and we shared those interests. We went to conventions, played games together, cranked Metallica like it was going out of style.
The shift happened like a tidal wave for one, and a slow moving but persistent deluge for another. When I was seventeen, my step-dad cornered me in the summer and gave me a note asking if I wanted to watch him shower and get ready for work. Shocked, I refused, and sat frozen in dead panic while he got ready to leave. Conveniently he forgot his jacket inside and asked me to bring it out to him. I did, and he cornered me again, alone, and began talking about how we'd been playing a game and I could never tell anyone and as he spoke, several events clicked: I'd woken up to find him in my bedroom one night, climbing into bed; that feeling of being watched when showering or changing wasn't a lie; all those things my brain told me I hadn't seen, I had.
He left, and to the credit of my mother who immediately believed me, I never saw his face again. The trauma ran deep, though, and it would take several years of therapy before I even felt comfortable divulging the full truth of what happened. The man who raised me as a daughter, who was my protector, who I never had to fear, was the source of my nightmares and my shame. The first betrayal of the father figure.
My bio dad and I grew apart as I grew older and got a job and wasn't able to make as many trips to visit as I had as a kid, but that wasn't the only reason. I was growing and maturing and learning in college, coming into my own as an individual. Meeting new people, experiencing new ideas, learning that there was more than one way to love another and more than one path to humanity and morality. My dad, raised heavily in the Southern Baptist tradition, didn't care for these ideas. We disagreed, but it was for the most part amicable - I couldn't lose another father.
And then I met the man I would marry, the love of my life, and began planning a wedding. When anyone asked me who'd walk me down the aisle, I panicked. The main father figure I'd had my entire life was a long gone memory by that point. I loved my bio dad, but knew we didn't share similar ideals - ideals that my future husband also held as true and were core to my beliefs, ideals that would shape our wedding and our future.
I took Jon to meet my bio dad, and after the first night of dinner he was so deeply uncomfortable with things that had been said and the way my father presented himself that I knew this wouldn't work, and it was time to make a choice. Before I could even call my dad to talk, he called me. The conversation got heated and ended in a hang up.
I got married to my best friend when my grandfather gave me away - solid, steady, and wise, he was the father figure that had never disappeared or abandoned his girl over her beliefs or who she was.
I've tried to repair my relationship with my dad, but it never seems to work. I checked his Facebook before I wrote this post, hoping beyond hope for some glimmer of the loving and gentle and compassionate man who raised me. What I saw was a wall of hate and vitriol that made me cry for what I'd lost, and knew, deep down, I'd never get back. The father figure that protected and nurtured the daughter through so many storms, including the worst one - the first father figure betrayal - is long gone, replaced by the zealot who sees her as just another “other,” an indoctrinated heathen whose very soul is already lost.
Hurt and betrayal, a beloved daughter wronged. That's what I was rewarded with for believing in the father figure, and that's the heart of the track. And while both men continue to live their lives without consequences, I protected my family by ensuring they never entered our orbit to become a problem again.
But you had fathers! Multiple! They were there your whole life!
They were. I have fond memories of growing up and spending summers in Georgia with my bio dad, living the small town Southern dream, slow and simple and sweet. My dad taught me self-reliance and resilience. He never shied away from teaching his daughter about the mechanics of cars or how to DIY just about anything. He let her help build his house. I learned how to make a cobbler from fresh berries, I picked and shelled pecans, peas, corn. All while being taught about a loving, forgiving, and patient Christ.
I had a step-dad I adored and called dad. I was a baby when my parents divorced, and he was my father growing up. I grew to love rock music, science fiction, comics, and fantasy and we shared those interests. We went to conventions, played games together, cranked Metallica like it was going out of style.
The shift happened like a tidal wave for one, and a slow moving but persistent deluge for another. When I was seventeen, my step-dad cornered me in the summer and gave me a note asking if I wanted to watch him shower and get ready for work. Shocked, I refused, and sat frozen in dead panic while he got ready to leave. Conveniently he forgot his jacket inside and asked me to bring it out to him. I did, and he cornered me again, alone, and began talking about how we'd been playing a game and I could never tell anyone and as he spoke, several events clicked: I'd woken up to find him in my bedroom one night, climbing into bed; that feeling of being watched when showering or changing wasn't a lie; all those things my brain told me I hadn't seen, I had.
He left, and to the credit of my mother who immediately believed me, I never saw his face again. The trauma ran deep, though, and it would take several years of therapy before I even felt comfortable divulging the full truth of what happened. The man who raised me as a daughter, who was my protector, who I never had to fear, was the source of my nightmares and my shame. The first betrayal of the father figure.
My bio dad and I grew apart as I grew older and got a job and wasn't able to make as many trips to visit as I had as a kid, but that wasn't the only reason. I was growing and maturing and learning in college, coming into my own as an individual. Meeting new people, experiencing new ideas, learning that there was more than one way to love another and more than one path to humanity and morality. My dad, raised heavily in the Southern Baptist tradition, didn't care for these ideas. We disagreed, but it was for the most part amicable - I couldn't lose another father.
And then I met the man I would marry, the love of my life, and began planning a wedding. When anyone asked me who'd walk me down the aisle, I panicked. The main father figure I'd had my entire life was a long gone memory by that point. I loved my bio dad, but knew we didn't share similar ideals - ideals that my future husband also held as true and were core to my beliefs, ideals that would shape our wedding and our future.
I took Jon to meet my bio dad, and after the first night of dinner he was so deeply uncomfortable with things that had been said and the way my father presented himself that I knew this wouldn't work, and it was time to make a choice. Before I could even call my dad to talk, he called me. The conversation got heated and ended in a hang up.
I got married to my best friend when my grandfather gave me away - solid, steady, and wise, he was the father figure that had never disappeared or abandoned his girl over her beliefs or who she was.
I've tried to repair my relationship with my dad, but it never seems to work. I checked his Facebook before I wrote this post, hoping beyond hope for some glimmer of the loving and gentle and compassionate man who raised me. What I saw was a wall of hate and vitriol that made me cry for what I'd lost, and knew, deep down, I'd never get back. The father figure that protected and nurtured the daughter through so many storms, including the worst one - the first father figure betrayal - is long gone, replaced by the zealot who sees her as just another “other,” an indoctrinated heathen whose very soul is already lost.
Hurt and betrayal, a beloved daughter wronged. That's what I was rewarded with for believing in the father figure, and that's the heart of the track. And while both men continue to live their lives without consequences, I protected my family by ensuring they never entered our orbit to become a problem again.
Too Long: April 2017
When was the last time someone took care of you?
Too long, I whispered breathless into the dark.
Too long, my soul cried, screaming out from the darkness and the fear and the tears and the pain.
Too long, stifling my own needs, my own voice.
Too long, ignoring the helpless, faint calls from abyss.
Too long, with logic and reason, power of the mind over matter.
Too long, the accumulation of matter into clutter in my inner spaces.
Too long, pouring from a cup so empty it echos while another fills to the brim, overwhelming.
Too long, ignoring the connection between body and spirit, the ecstatic transcendence of their union as one.
Too long, I whispered into the dark. Too long.
Too long, I whispered breathless into the dark.
Too long, my soul cried, screaming out from the darkness and the fear and the tears and the pain.
Too long, stifling my own needs, my own voice.
Too long, ignoring the helpless, faint calls from abyss.
Too long, with logic and reason, power of the mind over matter.
Too long, the accumulation of matter into clutter in my inner spaces.
Too long, pouring from a cup so empty it echos while another fills to the brim, overwhelming.
Too long, ignoring the connection between body and spirit, the ecstatic transcendence of their union as one.
Too long, I whispered into the dark. Too long.
MS Diagnosis Story: Nov 2015
Hello, can you hear me? I'm calling from the outside.
I honestly don't even know where to start this entry. But often, starting is the hardest part, isn't it? I do it a lot as a person. Starting something, doing well, and then just stopping. I'm not sure what exactly happens every time, but there comes a point where I leave something off and then I think, oh, I can't go back to that. Time to start over.
In fact, I've got a half written post about Heidelberg sitting in the drafts section here I totally forgot about, and I never got around to writing about Toulouse either. I'm sure there's a ton of "stuff that only happens in the UAE" posts I've wanted to share and forgotten about. And now, it may be a good long while before I write about Siena.
Siena was lovely. Siena was beautiful, relaxing, serene. Siena was also where all of this started.
The day I was out on a sightseeing tour of the Chianti region by myself, there came a point where I started to feel like I had something in my eye. Figuring I just had an eyelash or something, I washed it out. Everything was fine. Then, the next day, while walking around with Jon who'd finally gotten a break from his experiments, I finally -saw- something in my eye. I told him about it, but it was never more than a minor annoyance. We flew home the next day, on an overnight. The pain in my eye was there again, steady but never intense. I figured I'd have it looked at when we got home. The next day, both being exhausted, we pretty much just slept. I wasn't really concerned with the eye at that time because I knew it would be something I'd get checked out. And I did, the next day.
Well, sort of. Monday, November 16th, I had an orthopedist appointment at 10am. I'd been having some sort of weird sensation loss in my feet, and my GP recommended before I left for Siena that I see the ortho. Pinched nerve, probably. I sent my GP an email that morning about the eye, and she recommended I just see another GP while I was at the hospital so I wouldn't have to go back and forth. I agreed and scheduled an appointment with the GP on that day at Harley Street, where my ortho is. Ortho gave me more muscle cream and patches, said it was probably overwork and stress because I have messed up feet and that if it didn't clear in a few weeks we'd reassess. I filled my scripts and had some time before my next appointment at 1p, so I went to the mall that's right next door.
I should interject here that I had, at this point, done something silly and stubborn. My vision was starting to cloud a little more in my right eye, but I could still see fairly well, so I drove myself to the doctor that morning. I didn't want my husband to have to take me since he had work, and I didn't feel like grabbing a cab, and as I've said about forty times before, this was minor. It wasn't until I was talking to the GP that I really noticed a -blind- spot. She told me she thought I needed to be seen by an ophthalmologist immediately, but she thought it was just a scratch (AGAIN WITH THE SCRATCH), and handed me a referral letter. She also told me not to drive, so I called Jon, updated him on the situation, and then called Cleveland Clinic because I knew they'd just opened a new Eye Institute.
I talked to the appointment people on the phone, explained the situation and that I really needed to be seen today, and then after much back and forth they put a nurse on the phone, so that I'd be sure to get to the right place. She talked to me for a few minutes, and then said "I'm going to give you some advice, and you need to follow it, okay?" and then she told me I needed to come into the ED immediately instead of going to the Eye Clinic. I called Jon, who took a cab to come pick up the car, and I took the cab over to Cleveland.
It took not even five minutes after I walked in to be seen by an ER doctor, who was very kind, and began running all of the tests he knew, examining my eye. After exhausting his options and calling to consult with the ophthalmologist, he convinced them to see me in the eye clinic even though they were done for the day. I went across the hospital to the clinic, where we ran the tests and that's when I got the news that I wouldn't be going home that night after all. Of course by this point, I'd all but lost functional sight in my right eye. I could see things on the periphery, but there was a big white spot where sight should have been.
As another aside, I can't rave enough about my experiences at Cleveland Clinic, and I do well plan on doing that, but not in this post because I want to be able to give each and every person who gave me such excellent care the attention they deserve, and that will just make this too long because I still have too much to say.
The doctor, his nurse, and the imaging tech all came in at once to the room. They told me I might want to call my husband, and that was the first point where I really realized that something was badly wrong here. Besides the near total blindness, which I hadn't actually had the chance to sit down and notice because I'd been so busy and my other eye had kicked into high gear to compensate. They told me that I had a condition called optic neuritis which required hospitalization for treatment, and that they'd be admitting me. After the initial shock, I was in total disbelief. I'd been told once today that this was nothing big, I thought it was minor, and here I was going into the hospital? I hadn't been back from vacation for two days. This was crazy.
He explained that he'd consulted with a neurologist and that they were admitting me, and I just needed to wait for them to have a room ready and they'd get me settled in to the hospital. And then I finally heard it for the first time. "You should know this is often a first symptom in multiple sclerosis."
Um, what? I had a scratch. My eye is going to be fine. I don't have MS. Okay, so my eye is not okay, but that doesn't mean I have MS. I don't even know exactly what MS is. Sure, I'd heard about multiple sclerosis before, and I knew people who had it, but it's not like I was familiar with the disease myself.
I finally got admitted and settled into a room on the 10th floor, the neuro ward, and Jon finally caught up with me. The neuro on call came in to explain that my consulting physician would be in in the morning, but that he'd given the orders to go ahead and start the IV steroid treatment right away, and we'd begin the testing and MRI battery the next day to identify the cause, which was okay, because by this point it was late in the evening and we were in the hospital unexpectedly and I was tired and just wanted to sleep. I had to call my mom and let her know I was in the hospital, so I did, and I and the nurse assured her that I was in good hands and that everything was going to be okay and that there was no need to rush over because it could just be a random ON flair up and that it happened for things other than MS, and that we would all know and feel better after the tests.
So the next day I had my MRIs, and then at about 8 that night, my doctor walked in and told me it was pretty well confirmed by the scans that I did in fact have MS. So much so that he didn't feel the need to do the spinal tap. It was just a complete and total shock.
I'm not ready to put the rest of this experience out there just yet, and this is long enough, so we probably have a good stopping place. I should explain my title: I just recently heard the new Adele song, and love it so much, and thought it fit so well because that's what this whole thing has totally felt like. Calling myself from the outside. I'm not sure if anyone has answered yet or not.
I honestly don't even know where to start this entry. But often, starting is the hardest part, isn't it? I do it a lot as a person. Starting something, doing well, and then just stopping. I'm not sure what exactly happens every time, but there comes a point where I leave something off and then I think, oh, I can't go back to that. Time to start over.
In fact, I've got a half written post about Heidelberg sitting in the drafts section here I totally forgot about, and I never got around to writing about Toulouse either. I'm sure there's a ton of "stuff that only happens in the UAE" posts I've wanted to share and forgotten about. And now, it may be a good long while before I write about Siena.
Siena was lovely. Siena was beautiful, relaxing, serene. Siena was also where all of this started.
The day I was out on a sightseeing tour of the Chianti region by myself, there came a point where I started to feel like I had something in my eye. Figuring I just had an eyelash or something, I washed it out. Everything was fine. Then, the next day, while walking around with Jon who'd finally gotten a break from his experiments, I finally -saw- something in my eye. I told him about it, but it was never more than a minor annoyance. We flew home the next day, on an overnight. The pain in my eye was there again, steady but never intense. I figured I'd have it looked at when we got home. The next day, both being exhausted, we pretty much just slept. I wasn't really concerned with the eye at that time because I knew it would be something I'd get checked out. And I did, the next day.
Well, sort of. Monday, November 16th, I had an orthopedist appointment at 10am. I'd been having some sort of weird sensation loss in my feet, and my GP recommended before I left for Siena that I see the ortho. Pinched nerve, probably. I sent my GP an email that morning about the eye, and she recommended I just see another GP while I was at the hospital so I wouldn't have to go back and forth. I agreed and scheduled an appointment with the GP on that day at Harley Street, where my ortho is. Ortho gave me more muscle cream and patches, said it was probably overwork and stress because I have messed up feet and that if it didn't clear in a few weeks we'd reassess. I filled my scripts and had some time before my next appointment at 1p, so I went to the mall that's right next door.
I should interject here that I had, at this point, done something silly and stubborn. My vision was starting to cloud a little more in my right eye, but I could still see fairly well, so I drove myself to the doctor that morning. I didn't want my husband to have to take me since he had work, and I didn't feel like grabbing a cab, and as I've said about forty times before, this was minor. It wasn't until I was talking to the GP that I really noticed a -blind- spot. She told me she thought I needed to be seen by an ophthalmologist immediately, but she thought it was just a scratch (AGAIN WITH THE SCRATCH), and handed me a referral letter. She also told me not to drive, so I called Jon, updated him on the situation, and then called Cleveland Clinic because I knew they'd just opened a new Eye Institute.
I talked to the appointment people on the phone, explained the situation and that I really needed to be seen today, and then after much back and forth they put a nurse on the phone, so that I'd be sure to get to the right place. She talked to me for a few minutes, and then said "I'm going to give you some advice, and you need to follow it, okay?" and then she told me I needed to come into the ED immediately instead of going to the Eye Clinic. I called Jon, who took a cab to come pick up the car, and I took the cab over to Cleveland.
It took not even five minutes after I walked in to be seen by an ER doctor, who was very kind, and began running all of the tests he knew, examining my eye. After exhausting his options and calling to consult with the ophthalmologist, he convinced them to see me in the eye clinic even though they were done for the day. I went across the hospital to the clinic, where we ran the tests and that's when I got the news that I wouldn't be going home that night after all. Of course by this point, I'd all but lost functional sight in my right eye. I could see things on the periphery, but there was a big white spot where sight should have been.
As another aside, I can't rave enough about my experiences at Cleveland Clinic, and I do well plan on doing that, but not in this post because I want to be able to give each and every person who gave me such excellent care the attention they deserve, and that will just make this too long because I still have too much to say.
The doctor, his nurse, and the imaging tech all came in at once to the room. They told me I might want to call my husband, and that was the first point where I really realized that something was badly wrong here. Besides the near total blindness, which I hadn't actually had the chance to sit down and notice because I'd been so busy and my other eye had kicked into high gear to compensate. They told me that I had a condition called optic neuritis which required hospitalization for treatment, and that they'd be admitting me. After the initial shock, I was in total disbelief. I'd been told once today that this was nothing big, I thought it was minor, and here I was going into the hospital? I hadn't been back from vacation for two days. This was crazy.
He explained that he'd consulted with a neurologist and that they were admitting me, and I just needed to wait for them to have a room ready and they'd get me settled in to the hospital. And then I finally heard it for the first time. "You should know this is often a first symptom in multiple sclerosis."
Um, what? I had a scratch. My eye is going to be fine. I don't have MS. Okay, so my eye is not okay, but that doesn't mean I have MS. I don't even know exactly what MS is. Sure, I'd heard about multiple sclerosis before, and I knew people who had it, but it's not like I was familiar with the disease myself.
I finally got admitted and settled into a room on the 10th floor, the neuro ward, and Jon finally caught up with me. The neuro on call came in to explain that my consulting physician would be in in the morning, but that he'd given the orders to go ahead and start the IV steroid treatment right away, and we'd begin the testing and MRI battery the next day to identify the cause, which was okay, because by this point it was late in the evening and we were in the hospital unexpectedly and I was tired and just wanted to sleep. I had to call my mom and let her know I was in the hospital, so I did, and I and the nurse assured her that I was in good hands and that everything was going to be okay and that there was no need to rush over because it could just be a random ON flair up and that it happened for things other than MS, and that we would all know and feel better after the tests.
So the next day I had my MRIs, and then at about 8 that night, my doctor walked in and told me it was pretty well confirmed by the scans that I did in fact have MS. So much so that he didn't feel the need to do the spinal tap. It was just a complete and total shock.
I'm not ready to put the rest of this experience out there just yet, and this is long enough, so we probably have a good stopping place. I should explain my title: I just recently heard the new Adele song, and love it so much, and thought it fit so well because that's what this whole thing has totally felt like. Calling myself from the outside. I'm not sure if anyone has answered yet or not.
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