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.
It’s 3AM right now.
Of course I can’t sleep, which isn’t really new for me, but it seems new right now. Now, the things that keep me up all night are the unknown, the terrifying, and the huge.
These are the scattered thoughts, flitting around my brain – I’ve got to get them out of I’ll explode. Well, maybe I won’t, but I know I need to talk with someone other than my wife. She’s so patient and loves me so much but she needs a break.
Maybe we all need a break, but here goes what I’m thinking about.
There are so many things.
Just. So. Much. Pandemic.
I have friends that I love dearly. DEARLY. They are in Manhattan right now (currently a hotbed for CoVID-19) & I’m so scared that I might lose them.
I have family that are immunocompromised and/or are in a higher risk age bracket. I’m terrified that I’ll lose them too.
I, myself, am immune compromised! OMG! CRAP!
People are talking about comparable periods in recent history so we have some sort of frame of reference for how to act. Some are talking about 9/11, others are talking about the Great Depression (which my parent’s lived through), but it’s really not like that. I briefly considered the Cuban Missile Crisis based on the major fear we’re all trying to live through.
But it dawns on me: the early 80’s and HIV/AIDS crisis – originally called GRID (gay-related immune deficiency) – we’ve been through this – the fear, the isolation of sick people in hospitals, not understanding what was going on, what to expect, who would be sick, and how they would become ill. The lack of available medical treatments. And the fear; all the fucking fear.
Maybe one way to get through all this is ask one of your gays who lived through this what it was like back then: we’ll tell you to stay fabulous, keep on loving, and protect you and your loved ones at all costs.
My son’s school wants us to do internet learning with him. Are they stinking crazy? I’m not going to do that with him! He’s scared too – if I’m up at 3AM with all these thoughts, I cannot imagine trying to teach my kid but I will help him to do is best and help him if he needs it. I cannot imagine doing any of this homeschooling stuff people are doing – my son’s got enough on his little plate. He’s 13 – I can’t even IMAGINE being his age and going through this. If you think for even one minute that these kids think this is some type of extended vacation, you’re wrong: these kids are as scared as we are.
Every night now, around 7PM, people around the world are going outside, clapping and shouting and making noise for all these healthcare – and other essential – workers right now. These brave people put each other in actual danger every single day that they go to work. They’re exhausted. They’re overworked. They don’t even have the proper equipment to do their jobs safely. I mean, people around the world are SEWING masks for them.
This is insane. Absolutely insane.
We don’t have enough toilet paper and we can’t find any. All of the stores are out they don’t know when they are getting more. I guess we are going to have to start sewing toilet paper too.
What are people without homes going to do?
How do they stay safe?
What about people in prisons?
\How do we keep them safe?
CoVID-19 sucks.
This is the most bizarre experience of my life. I alternate between denial and absolute terror 23 times a day.
I went grocery shopping earlier today & it’s clear that people are on their last nerve.
It took all of my mental energy to get through that.
I wore a mask and gloves when I went out, and as a woman passed me and saw my mask she said me, “You know, if you’re healthy, those masks aren’t going to do anything for you anyway.” I acted like I didn’t hear her. Maybe the mask isn’t going to help. But it isn’t hurting her.
People are scared. Let it go. Have some compassion for each other.
That’s what I say to her in my head.
Then, I realized she is under unimaginable stress too. I gave her compassion and I changed my mental response to her – I reminded myself that she’s scared too.
There’s world-wide uncertainty right now & we’re all grasping for a feeling of control. She is too; she’s scared like the rest of us.
Maybe the way she is navigating her fear is wanting to know more than other people; she needs that right now. And so I mentally forgave her because I totally understand where she is coming from.
There is a beautiful sense of solidarity happening too. I think that it’s appropriate for me to be positive and hopeful here now. People all over are jumping in and helping. Delivering food and meds to people who can’t get out. Delivering food to hospital workers who are not able to get breaks to go out and get food for themselves. People are giving out free lunches for families who depend on the schools for those meals.
It’s quite beautiful.
I am so fortunate too.
I have a roof over my head, and no threat of losing that (at least right now). I have an amazing wife that is on this journey with me, and who is solid when I need her to be.
I get to be solid when she needs me to be, and that helps me just as much. I have an amazing son who is challenging and fun and healthy. I have food in my belly and no threat of losing that.
I’m fortunate. I’m privileged. I am also grateful. I don’t take this for granted.
I do have hope. And I do believe that everyone around the world is doing their very best to take care of each other.
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.
We are enjoying a day off. It’s Easter weekend. Reflecting Christ’s sacrifice on the cross. He is cutting up vegetables. He cuts himself and is bleeding everywhere.
Why does he think his needs are more important than mine?
Now, I need to help him feel more comfortable.
Constantly complying. I am not a part of the equation. I have been SPEAKING for years, repeating myself constantly. I don’t ask anymore. I don’t ask for things. I don’t ask for affection. I am living in limbo. Boundless. Floating.
I am invisible.
I need to be released from this responsibility that I’ve been carrying for too long.
For the last eight years we’ve drifted apart, each of our roles were extremely different from the others.
I was primary care taker of the baby, he just worked to not be in pain. He was in and out of doctor’s offices, and in bed most of the time he was home.
He was cold to me. He couldn’t help it. I know.
To me, he had it easy: just relax, lay in bed, watch TV, take medicine, have another useless steroid injection.
Umm… when do I get the debilitating disease so I can sit on my ass all fucking day? I feel trapped, imprisoned.
I had grand expectations that he would complete me, complete my life and it would be this grand ball with dances and tea parties. Our roles are still tragically different, neither supporting one another, neither of us need each other. We are in different places, both have different goals.
We are in the same room, breathe the same air but we’re worlds apart.
The lack of trust and respect – it’s killing us. I cannot trust that he’ll be there. That he’s ALL IN. We’ve been having some good months lately… but soon, that chronic pain will take him and paralyze him again.
And… so here’s the state of our union. I’ve become accustomed to not including him in my day. He’s had so many limitations, so many special needs. He’s never been able to engage, so I forget that he’s there sometimes.
Somewhere between the chronic pain, taking days off for doctor appointments, disappointments, missed opportunities, we disappeared. I stopped trying to make the structure we live in a home. He was too busy or too sick to care. He didn’t want me. I got used to that.
I became hard, and cold. I worked so hard to leave my father’s house only to end up exactly where I started. I try. He tries. We both feel the unbecoming of us though. It was a slow fade to black.
I’ve veered on a divergent path and, if I’m being honest, I don’t care if he follows or goes in the opposite direction.
These days, the only real way I can relate to men is if they are anonymous, objectified, and made common.
Maybe if (they or) I become more anonymous, objectified, common, I don’t have to engage. I can pay to play. I can pay to heal in a way. I can acquit myself of the emotional debt.
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.
I was alone.
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.
The following post is from a series called ” A letter to someone who stopped talking to me.” The posts from this series will appear on Stigma Fighters and Bank Back Together.
Dear Mum.
It’s been a while since I wrote you. Six months. What was the last thing I sent you? A postcard, probably. Someone – one of your sisters, my aunts – told me a while back that my letters to you went unopened. Hence the postcards: nothing for you to open (or not open), a pretty picture for you to look at, and less aching white space for me to fill each week. It made it easier – for me at least. Nothing too heavy. News from up here in the north. Family. Friends. Work. Then best wishes for your well-being and family down there.
Phone calls from me ceased when you could no longer take them. When you could no longer remain awake at the phone or even, perhaps, know who I was. You used to love texting, before illness took its final hold, but the special large screen phone we got you so you could take and make calls from your room languished unused and uncharged.
I cherish the times I came to visit with you, on my own or with Pam. The time I took you to Washington Wildfowl Trust to see the ducks. Holding your hand. Sitting with you in your room while you slept. I remember the moment (not precisely when but how it felt) when the question “When will I go down next?” shifted into the knowledge I would not.
And then the phone call telling me you’d gone. A week or two of uncertainty, doubt, fear. Then plans to be made. Hotel rooms and a hire car. Routes. What to wear. That was okay. I’m good with that stuff.
And then there I was, back in Liverpool one last time. Squeezed in the back of the funeral car. Your face staring at me all the way to the church from the framed photo they’d propped at the back of the hearse. Carrying your coffin – no weight at all really – up the aisle of the church I remembered so well. The priest’s eulogy. “She was a saint. Literally, a saint. She always put others first.” And I wanted to scream.
YES SHE WAS. SHE DID. AND LOOK WHAT IT FUCKING DID TO HER.
I didn’t scream out, of course. I stayed quiet in my seat. I own my share of the blame. The depth of your need terrified me and I left you to get on with it all. I wasn’t there when you needed me to be. It was easier to pretend I didn’t notice. To visit occasionally and then not at all. To phone occasionally and then not at all. To write letters, and then postcards, that said very little and needed no reply. I’ve learned a lot about being there these past years but too late for you and me. There is no going back but I would do better by you now.
I don’t believe these words will find you now any more than the postcards did. You are gone. Not gone somewhere. Just – gone. But there are tears in my eyes and perhaps that stands for something.
