Please share this around – we are none of us alone; we are all connected. You never know who’s lives you’ll change with your words.
Last week (or was it 2 weeks ago – I’m not being coy – I honestly don’t remember) my dad called me, which is about as rare as me saying “I heart mayo” because I loathe mayo with the energy of a thousand suns. It’s not that we’re “not okay” or something, we just don’t have much to say to each other – he’s in California, I’m not. But, being alive in the Great Pandemic means you’re generally reaching out to people who you don’t normally talk to.
I’d expected him to say that either he or my mom had gotten The ‘VID because they’re old and they have multiple comorbidities.
I didn’t expect the words that spilled out of his mouth next: “we think Ben either has The Flu or CoVID-19.” I got the details, sparse as they were from them and tried, again, to reach my kid, but because he is a teenager, his phone is often off, which actually makes zero sense now that I’m typing it out, but that’s just the way it is.
ANYWAY.
That made his phone being off all the more concerning. But, I’m a good (wo)man in a storm and I’m all about fact-gathering rather than fear mongering or falling prostrate at someone’s… feet? Prostate? I’m not sure where I was going with that.
He’s in the same state, but not the same county, so I called that county’s health department and after I got through about 46 minute message telling me all the shit I already knew about The ‘VID (and pathogens in general), I was asked to leave a message. My guess is that that recorded seminar makes most people hang up, but I was in the car and had literally nothing else whatsoever to do.
I left my message and expected a return call about… let’s say NEVER? I figured they’d be hammered by everyone in the county to dispel some of the more outlandish things that Trump has said, so imagine my surprise when I got a callback.
Without having spoken with The Kid, I couldn’t really speak to what the symptoms he was facing were. His fever. His cough. But I did explain that he was safe and self-quarantined, and being a hermit and a teenager, had no thermometer OR desire to leave his hidey-hole. She sounded relieved.
When she was asked when he should get tested (this was when we all believed that we’d be able to get tested), she informed me – not unkindly – that “they’re not doing tests for “normal” people.”
Which is, I guess how another – WAY WAY WAY QUEEN OF BLOGS – blogger got herself tested twice (because two is better than one!!) and every asymptomatic celebrity who wants one can be tested in multiples. Me? I’m an OG blogger who’s been radio silent for years now – and my spawn aren’t special enough for a test.
But whatever. Only mildly bitter.
(lies)
The other nurse confirmed what I’d thought: stay in quarantine for 3 days after the fever broke (he doesn’t have a thermometer, I was thinking, but okay). Don’t go out until the cough is gone. All the other infection control protocols were in place, so yay. Oh, and the county hadn’t had a SINGLE confirmed case yet.
I wanted to yell “BECAUSE THERE ARE NO CELEBS AROUND THERE, ASSHOLE,” but it’s not her fault so I kept my grousing to myself. And, I guess, now to you.
Because I was unable to access The Kid for a couple of more days, my dad and I spoke daily – The Kid was on an upswing, then downswing, then up, then down. Finally, The Kid, Himself, called me. I told him what I’d learned from the health department (nothing I didn’t know EXCEPT that you have to have a platinum vagina to get tested). He said he’d called the hospital at one point a couple of days before, because he was coughing so hard he’d pass out.
Awesome.
The gist of it was “suck it up buttercup, you can’t come to the hospital with a cough,” which threw me through a loop.
AWEsome.
I’ve been texting with The Kid and he’s still got the cough and is doing a sleep-eat-play (video games before he passes out again) – cycle, which I’d been doing the week before. Whelp, without the video games.
He has his piano keyboard so he’s keeping busy, but he’s now, like the rest of us, falling pretty depressed. Like him (and I’d be guessing a good number of you as well), I’ve been struggling to even get off the couch. Today marks my first day back on the computer doing something other than watching the dwindling amount of traffic on the road and all of the incantations of My 90 Day Fiance – FOR THE SECOND TIME – which is just absurd enough to keep me from becoming a total slug.
(most days)
TL;DR
My kid sounds like he had CoVID-19 but was to normal, per the health department (who also stated that there were no confirmed cases in that county) he was too normal to be tested.
The hospital told him that if he had a cough – one of the dangerous-this-may-kill-you hallmarks of CoVID-19 – he couldn’t come into the hospital.
So my kid likely had CoVID-19, but it’s unlikely we’ll ever know,
He’s depressed now, I’m depressed, hell, everyone I know is depressed.
But, I dragged my ass to the computer to give you a taste of what it’s like in my world.
Now we need to hear yours: we are none of us alone; we are all connected.
Please share this around – we are none of us alone; we are all connected. You never know who’s lives you’ll change with your words.
Funerals are not for the dead; they are for the living.
If we are to believe in the afterlife, we believe that they are already in a better place, A place where the beauty of the flowers, the churches, and the songs pale by comparison. The love they feel far outweighs the love they feel from those in attendance of their comital.
Funerals are not for the dead; they are for the living.
If we are to believe that there is no afterlife, then they are already gone. The end. Fin. They will not feel the love, appreciate the flowers, or hear the songs. Those in attendance will tell stories, feel the sweet release of a good cry, and maybe – just maybe – gain some semblance of closure. But those who have died will reap nothing.
Funerals are not for the dead; they are for the living.
Today, we gather to celebrate their contributions to the enrichment of our lives. We are there to comfort each other; to try to make sense of the loss of their light in our world. We fortify ourselves against the pain of their passing with hugs and sweet words of our loved ones, and words of our faiths.
Funerals are not for the dead; they are for the living.
My aunt passed away today and amidst the concerns for the containment of CoVID-19, we are not permitted to attend the funeral. We want everyone to be safe.
Funerals are not for the dead; they are for the living.
I love you, Aunt Netta, and I will always miss your light.
My therapist has asked me to write down a list of my emotional traumas.
A list of all the emotionally and physically traumatic experiences that have happened to me in my life, that have contributed to my Bipolar Disorder and PTSD.
Right now, my therapist doesn’t feel as though I’m ready for the therapy called Eye Movement Desensitization and Reprocessing (EMDR). As far as I understand, I have to relive physical and emotional traumatic experiences, have the proper emotional response, get over it, then have Cognitive Behavioral Therapy (CBT) so I can develop some sort of coping mechanism for the future.
But until my medications are adjusted and I’m in a better place, I have to wait.
So, here is my list:
Sexual abuse around age 3 by a family member. I repressed this memory until it slapped me in the face at age 12, causing an intense anxiety attack.
Constant arguing between my parents, thanks to my father’s alcoholism, gambling and pain issues due to needing a hip replacement. The pain issue turned into an anger issue; turned into a power tool being thrown at my mother, missing, and going through the window and landing at my feet; followed by an argument on a holiday with my father resulting in me taking a heavy duty power torch to the head.
As a “gifted child,” I was bullied a lot in primary school and high school. I still carry some of those emotional scars with me.
Funnily enough, my brain is currently trying to stop me from accessing more memories. Suck it, brain; stop being a whiny bitch and let me write this shit out.
When I was 16, my mother – being severely depressed – attempted suicide several times. The last time she tried, she had an argument with my father (now a better man, nothing like his days in my earlier life), and downed a ton of pills. I found her and her suicide note. I actively suppress the things written on that note thanks to the emotional trauma but I know how it began.
That sentence haunts me in my dreams. She is fine now, thankfully, but I refused to talk about it with anyone and pretended it never happened.
I was diagnosed with severe anxiety disorder when I had a panic attack at high school so bad my heart rate was 180, and I had to be rushed to hospital for fear of doing damage to my heart.
Since that day, I regularly have heart palpitations.
I had a psychotic episode at 17, when voices told me to stab my mother. I became paralyzed in my own bed while lights shone down from the ceiling, and I was convinced aliens were coming for me, despite my logical brain telling me I was being stupid.
I was diagnosed with endometriosis and told I should probably have children before 25. I’m currently a week away from my 24th birthday. Talk about another emotional trauma.
I dated a Muslim man for eight months. Toward the end of the relationship, I was emotionally abused, when he called me a dog. I went running into the arms of a male friend.
I decided I was the worst person in the world and went off screwing any guy who looked my way, drinking myself into oblivion, and eating pills like candy, just to numb the pain. I wanted to be used. I asked my male friend – now my fuck buddy – if he was using me for sex. He replied yes. I cried and said, “good.
” Turned out he wasn’t using me: he was in love with me; as a result of my promiscuity, and his inability to tell me how he felt, he quit university, broken-hearted.
I started dating my current partner, whom I have been with for five years now. We lived with his sister, her fiancé, and their daughter. His sister is a lazy bully who cannot look after herself, let alone children (currently a total of three). Her fiancé is a violent, alcoholic gambler. After being made a prisoner in my own bedroom, we got our own place.
My diagnosis of fibromyalgia explained my constant pain and tiredness. Yay for inheriting every single shitty illness my parents have.
Recently, I have started to have feelings for a close friend, who also has a partner. While drunk, we have made twice. I have feelings for him, but he is just attracted to me. I have immense guilt over betraying my partner, who is emotionally stunted. I think I’m just attracted to my friend because he has the social and emotional skills my partner lacks.
I was severely bullied at my last job until I began having daily panic attacks and getting into a screaming matches with a higher-up and former friend.
I decided to self-harm and contemplated suicide when the medication I was taking for five years stopped working. Unfortunately, while the medication stopped working, my now non-existant libido did not return.
Have also suffered dermatillomania (chronic skin-picking) for most of my life, particularly my feet. It is disgusting.
Currently, I am plagued by insomnia, headaches, anxiety, shame, severe depression, guilt, and every other horrible feeling imaginable. According to my therapist, I have feelings of low self-worth. According to my friends, I have a much lower opinion of myself than everyone else does of me.
I am both numb and emotionally unstable. I can’t cry, even though I really want to let it out. I think of myself as selfish and horrible, a terrible person who doesn’t deserve what I have. I theorize that I have some subconscious need to sabotage myself. Every time something is going well, just to add some drama in my life. Why I do this, I don’t know. And as I have written this list in such a cold, emotionless manner, I find it odd that I can be so numb and feel so many negative emotions at the same time. I feel like a robot.
I don’t want sympathy. At least, I don’t think I do. I am just tired. Tired of struggling through every day with these issues. I want the problems to just magically disappear because I’m tired of fighting.
I know it’s a long road ahead to my recovery. And as much as I don’t want to relive the aforementioned memories, I am also excited for the first time in ages because maybe, finally, with proper therapy…
Thursday I’m having lumbar epidural steroid injections in an attempt to decrease the all-encompassing back pain I’ve lived with for 9 years.
Like GOOD any member of Gen Y, I googled the procedures my pain management doctor offers before I saw her for the first time…and the results the internet gave me are less than stellar:
Only a whopping 60% of people see results, there is a possible vast increase in pain for a few days after the injection, I’ll only able to do this for a limited time, blah blah blah.
My doctor is feeding me a different story…along the lines of “two injections and you won’t ever have to see me or anyone else ever again.”
I don’t know how an anti-inflammatory will get rid of the bulging discs the MRI showed, but she didn’t seem concerned.
So, I’m torn, The Band.
Am I just a horrible cynic who’s been through 13 doctors and can’t see the light no matter how bright it is?
I really feel like I’m being sold the back pain version of a miracle weight loss drug. Not that I have a choice; at this point I’ll try anything to keep myself from jumping in front of a train.
It’s been a long time since I thought about those first few days with my daughter. Actually, that’s a lie. There’s not a day that goes by that I don’t think about the encephalocele, that pesky bit of brain matter growing out of the back of her head. The still-growing scar on her misshapen skull makes damn sure of that.
It’s always peeking out, just below her curls.
I wonder what she’ll think of that, someday, when she realizes that she’s not quite like the other kids. I know there will come a day when she hates it, another when she accepts it, and another when she realizes just how grave a situation it was… and what a miracle it is that she is still around today.
I know enough, thanks to my nursing background, to know what an absolute miracle it is that she’s walking around, talking, and demanding that I paint her bedroom pink. Not a day goes by that I don’t thank her for showing me the way, for helping me find my light, and for using that light to help others.
She’s the reason we, this Motley Band, are here. She’s the sole reason that this site, which has helped so many, exists. Without her, I’d just be some blogger with a blog that I use to pontificate about the underrepresentation of kumquats in today’s media. I’d still be Your Aunt Becky, but I wouldn’t have done this. Any of this.
In her short life, she has altered the path of so many. In her three small years, she has done so much more than I ever will.
While I could sit here, raging against her birth defect – which has given me a wicked case of PTSD – I don’t. I celebrate it. I celebrate that one tiny bit of brain that has changed the course of my life forever.
Today, I ask you to share your stories of birth defects, birth trauma and birth injury. There are so many of us out there in the shadows, waiting to share how their lives have been changed with a few small words, a diagnosis.
The greatest stories remain untold, of course, not from a desire to tell them, but from a lack of an understanding ear.
In here, in this cozy library, fire crackling in the background, as we sit on overstuffed leather chairs, we are ready to lend you our ears.
It’s one in the morning on New Year’s Day. I’m alone in my room savoring the last taste of mini-chocolate donuts before my medicine kicks in. Once it does, I get so nauseous that all I can do is lay still and hope that I can sleep.
When the clock hit midnight, I was lying in bed watching a documentary about obese people on my computer.
The only “Happy New Year” wishes I got were two texts. One was from a wrong number. The other was from one of my friends that I’m in the process of losing touch with; I suspect it was a mass message to everyone in her phone.
My mom and sister were downstairs, but they made no effort to come see me. I’d snapped at them earlier, so they left me alone. My boyfriend didn’t say anything either. I haven’t heard from him since seven, when he said he was sorry for not coming over because he was tired and in a meh mood. I’m guessing he fell asleep.
I’ve spent most of that time crying on and off.
You see, the problem is that I’ve spent the last three days with a pain in my left side, and while it fades in and out, it’s been getting worse. Normally this wouldn’t bother me too much, but in the last three weeks I’ve been in and out of doctors’ offices. I started off with a Urinary Tract Infection (my third since May), and after being off of those antibiotics for a day, I developed an ear infection. While I had my ear infection, my allergies ran amok, and I had to get a special nose spray to allow some sinus tube to open back up. I just finished the antibiotics for the ear infection yesterday morning.
All of this would be overwhelming enough by itself, but this happened after almost an entire year when I didn’t go one week without something happening to make me stop what I’m doing and curl up on the couch and wait for it to go away.
All of this has happened because I have fibromyalgia.
I’d explain what fibromyalgia is to you, but I don’t even know myself – my doctors don’t either. They THINK it’s nerves over-reacting and sending out false pain signals. But if that were all there was, it wouldn’t be associated with so many other things. If you stop by any fibromyalgia website, you can click on a page and find a long list of associated diseases and ailments. All of them aren’t even listed.
As if the pain and stiffness weren’t enough, now I have Irritable Bowel Syndrome, chronic fatigue and insomnia, sensitivity to temperature and certain chemical smells, loss of concentration, and worse, anxiety. I hope that my reproductive organs function properly, because I want children one day (Even though I already know this might not be true. I’ve had one cyst and irregular periods so my doctor threw me on birth control a few years ago and that was that.)
So I have my pill cocktails for this thing and that thing, and I have patterns I need to follow or else something will flare up. There’s an even bigger problem with all of these things: I’m nineteen.
I was diagnosed with fibromyalgia at sixteen, and for a while it looked like it was being managed by medication. I was able to function and go to school and go out with friends. It would flare up every now again around my periods and during the winter, but it was still manageable…until January of this past year.
My doctor decided to switch me to a new drug for fibromyalgia. This drug was hardcore. It came in a trial in this little book container. I had to ease into it because it carried some potentially harsh side effects. It was hell from the beginning. I was nauseous from the second pill, but my mom and I decided to give it a chance.
By the middle of the trial, I was so nauseous and weak that it put my new part-time job into jeopardy. I sat through the orientation trying not to throw up. When I started having heart palpitations to the point where my heart stopped beating long enough for me to panic, we decided to take me off of the drug, but of course, I had to taper down because there was a chance of seizures from suddenly stopping.
Ever since, the problems haven’t stopped. I’m more than a semester behind in college because I’ve had to drop classes. This next semester, I will try for the third time to finish Composition 2 and Intro. to Sociology, and at this point, I’m not sure if I will be able to do it on this try.
I did online classes last semester, and this semester was supposed to be my attempt at real classes again. My anxiety has been right below the surface for weeks. I keep thinking, “If I can’t even make it more than a few days without something happening, how can I make it through classes? How can I live a normal life and have a job when I can barely function for more than a few days?”
I’m very aware of how much my parents spend on my doctor’s appointments and medications – it isn’t a small sum. My mom’s stack of doctor’s bills and reports is easily over six inches. I know my insurance runs out when I hit twenty-five, so I know I have a time limit to finish school and find a job, but I’m going to school to be a high-school English teacher. My starting salary will be somewhere in the mid thirty thousand dollar range.
I don’t want to have to admit that I will have to rely on someone to help take care of me, but honestly, on a teacher’s salary, I will be stuck at home until I pay off all of my student debts or I move in with a boyfriend. I refuse to live with friends because I don’t want them to have to take care of me when I get bad. I don’t want them to have to bring me things when I can’t get up. I don’t want them to have to sit with me when I’m curled up in bed sobbing because I don’t want to be sick anymore.
All I can do is hope that it will go back into remission or I can find a way to manage it because I don’t know how I can ever have a normal life with it as it is. I always have the fear that people are going to leave me because I’m such a mess. I tell my boyfriend that I’m a mess; that I’m falling apart, and he tries to reassure me that the rest of me makes up for it.
It angers me when people don’t take my illness seriously. My sister laughs at me if I tell her why I’m feeling bad. I’ve had people tell me it was all in my head or look suspiciously at me when I can’t give them an adequate explanation of fibromyalgia.
I know I don’t look sick, but I like it that way. If I looked sick every time I felt bad, I’d always look awful. I get mad when I see all this research money being thrown at all these other manageable diseases or anti-ageing products when fibromyalgia has the potential to systematically destroy people’s lives. It doesn’t matter that it’s not deadly: if a disease has a potential to confine you to bed, it deserves funding.
My plans for my future are very tentative. Even if I’m only planning a week in advance, I have to add “I think” to the end of it because I have no idea if I’ll be up to it. I’m sick of having to add “I think” to all of my plans.
I want to have a job. I want to go to school full-time. I to live on my own. I want all of the things people my age complain about. I want these things because they’re normal. I want to know that I can be normal. It hurts to hear people complain about this stuff – I want so badly to do it all.
My political views are becoming more liberal. I’m okay with universal healthcare when we can afford it. I need it. I’d gladly pay extra taxes if it means I don’t have to pay for outrageous doctor bills or ridiculously expensive mediation because I react badly to certain generics.
I support abortion because if I were to accidentally get pregnant, I’d have to choose whether to put my body through excruciating hell and lose all functionality for nine months, or abort. I’m not even fond of the idea of abortion, but I still want that option.
I recently started supporting medical marijuana because my body is being worn down by pain medications. I get upset when people try to oppose me on that one. My favorite argument is that America doesn’t need more high people because people with chronic pain are already high all the time. People in chronic pain take pain pills to function, not to relax. (Also, the people who actually would need medical marijuana hate the people who want to abuse it just as much as you do.) I’d gladly eat a pot brownie instead of taking a pain pill that’ll leave me nauseous and weak for six hours and for half a day afterward because my body is already worn down.
Do I need to repeat that I’m only nineteen?
And all I can do is just sit, wait, swallow some pills, try to exercise when my body lets me, try to eat healthy when my stomach lets me, and hope that I can get everything into a manageable state.
I’m starting to feel it’s too much to hope for it to just go away.
