Tag Archives: Autistic and medical ableism

An Update On Dialysis

I am happy to report that due to my diligence with the ERD Network 18, I am once again back to four hour treatments, am able to finish my treatments now, and they are working on educating the techs and nurses and facility admin on putting us patients first always, and accommodating our disabilities.

This has been a hard road, but things are improving.

I have been able to finish all dialysis treatments since the beginning of May.

I will keep y’all posted.

Dialysis, Part Two

I started writing a post about today’s dialysis, and, well, FB decided to eat it again.

Today’s dialysis went okay, but it was mentally and emotionally draining for me. For me to have to see Mo there again when he frightened me by the way he yelled at me on Tuesday—-only today, to see that he was now all smiles and laughs, going all around saying nice warm friendly “Hi’s” to all of the other patients, and even pulling up a stool to talk to them ALL in a very caring, warm, and friendly manner, but, me, he totally ignored me— I think that is what has me upset the most tonight. Because he totally ignored ME. And talked to everyone else.

My nurse Whitney tells me that the facility admin did talk to him and address what happened on Tuesday, and my nurse Whitney also plans to follow up and talk to Mo the next time she sees him, since he will be there helping out for the next four months. So he and I can work together without anymore trainwrecks.

But this is what upsets me, and when I am upset it doesn’t matter what has upset me, it still goes over and over and over in my mind until I am a literal mess wanting to just roll under my house and die: Is that he totally ignored me and did not make any move to come in to make amends for putting me in a sate of emotional hell on Tuesday. But he made it a special point to warmly greet everyone else, and to sit or stand and talk to them warmly.

I was so afraid to go to dialysis today because of Mo. Because I knew he would be there again. So this morning when I awoke I called the ESRD (End Stage Renal Disease) Network 18 line to let them know what happened Tuesday. I had to leave a detailed voice mail and I did. I told them everything, and how shitty it made me feel all over again, just like my father all over again and his rage-filled harsh, punitive disapproval of me as a person.

My ESRD Network 18 caseworker, E, called me back during the second hour of my treatment. She and another dialysis nurse, Jewel, who really impressed me, by the way, **viola!** happens to know a great deal about the issues we autistic adults face with ableism, gaslighting and abuse, who is also against ABA therapy, knew exactly what I was describing, my feelings of feeling isolated from everyone else by Mo, and Othered by how I continue to be treated with insensitivity by the Facility director and some of the other staff members.

She knew just how to make me feel heard and seen, and when she told me how frightening it has to feel for me to have to go there just so I can stay alive, and continually try to educate the staff and still these problems keep happening,, how isolating and yes, terrifying this must feel—-I broke down crying—-because my normal social worker also saw and heard me just like this too.

The feeling I get when people really get why I am the way I am, and can articulate it back to me, makes me feel even more empowered to speak up for myself, and that I am okay after all.

Do people not realize, once and for all, that just treating those of us who are autistic with patience, kindness, and letting us speak and voice what is hurting us, and letting us be who we are in whatever space we are in, is the way to help and be a friend and ally to us, and that it is not helping us when you instead, judge us and make us feel wrong in what we feel, and you yell at us and scold us and treat us like we are merely just “bad behaviors” that are to be fixed and cured? God, it really is that simple, but yet, people just still can’t, or won’t, because to them, just because Autism Speaks and the media says so, we are burdens to be shoved off in the corner, and dismissed as nothings.

The team at ESRD Net 18 are in my corner, and that gives me hope again. They tell me that how the facility director is treating and handling my issues is NOT okay, and are going to help get her, and the staff to finally treat me like the human being I am. So I can start looking forward to going to my dialysis treatments again.

My Latest Medical Hell In The ER

TW/CW: Discussion of medical symptoms, bodily fluids, and ableism, violation of bodily autonomy, disrespect of my humanity.
In my lat blog post, i wrote about a recent scare i had when too much fluid was once again taken off of me at dialysis this past Tuesday. I got so afraid, because i could not eat or drink a thing, a huge painful gas bubble was in my upper abdominal cavity, and my urine was a dark brown color. I was also having slight dizzy spells.
I had my caregiver, Sam, take me to the hospital, to the ER, that evening.
This blog is about the ableism that occured, mainly from the first doctor and the two ER nurses i dealt with while there.
For one, i was greeted with a triage nurse who was not rude, but who wasn’t that friendly either. He took my history, my symptoms, and vitals, and let me know what all my vitals were, except for when he told me my temperature, he said it in metric form, and would not let me know what my temp was in Fahrenheit form. Then a registration person (female-presenting) took my info as well. They were friendly.
When Sam and i went back to the ER area, that was one hot mix of both bad and good. We waited like 35 minutes to be taken back to the ER room.
My first nurse was nice enough. Until later. (More on her in a bit!) But firstly i was put in an ER cubicle that was shared, not one of their many private ER rooms. And there was a woman in the first bed, along with a male presenting person who was standing and holding a 3 year old boy, who was running right into my area, and then crying so loud i could not hear my nurse or doctor. Okay, disclaimer, i love children, but the loud noise of the little boy’s crying was triggering me, as i was already a ball of anxiety and nerves, and i had to leave and get placed into another non-private ER room with two beds.
Okay, while i was still in the first ER room with the crying boy, a doctor, Dr. J., came right in, and upon haring my symptoms, he, without first asking me, reached over, grabbed my t-shirt, pulled it up, and began feeling my entire abdominal area. Then an unneccesary argument ensued when they wanted to put a catheter in me to check my urine, instead of the toilet hat they use for us fat folks that cannot do a conventional urine sample (pee in the cup). I refused the catheter, and they consented to the toilet hat.
I had Sam wheel me into the restroom, but we were unable to get the hospital wheelchair in to the restroom, so, the nurse proceeded, without warning, to lift up my legs, roughly, again, without first asking me, to move the wheelchair’s leg rests off to the side, so i could get out ad walk into the restroom. I reacted instantly by snapping at her to ask me first before just touching me. And let her know she was hurting my legs. I let her know i had lymphedema, and that her roughness could cause leg ulcers to break out on my calves where she was lifting them up.
She was not that friendly either. And she talked too loudly, so that everyone else in that whole area could hear what was going on. Isn’t that a violation of the new HIPPAH laws?
The following are copied and pasted from an actual survey i got in my email this morning from that hospital. Re-edited for clarity.
I dealt with a total of two ER nurses that night…St., and Ch.
Both nurses I dealt with were mostly condescending, and when i explained I am autistic and have certain ways I need for things to be, sensory issues, etc., (my accomodations for my disability of autism) they were both dismissive, and instead were quick to defend the rude nurses I had in a previous stay, over my valid complaints. I felt unheard, and talked down to.
In addition, when my first nurse, St, took me to the restroom, she handled my legs roughly, and without first asking me when helping me to get from the wheelchair to the bathroom.
ALL of ANY hospital’s staff needs to ask us first whenever they need to touch and move us. I believe in treating patients with utter respect and courtesy, and this means respecting our bodily autonomy. ALWAYS, ALWAYS, ALWAYS, ASK FIRST! And if we go to tell you things, do not dismiss us, and defend your staff over the feedback we give on them. That too, is dismissive.
I saw two doctors while there in their ER. The first one Dr. J, came right up and pulled the front of my t-shirt up without first asking me, to check (feel around) my abdominal area. This was invasive and a disrespect of me. While I realize he needed to check my abdominal area, he still needed to ask me first. Again, the entire ER staff need to learn to ask patients first, before you touch us. It shows respect and care for us as the human beings we are.
My second doctor, Dr. Sh, showed respect and was kind to me.

The lady dressed in a bright red pantsuit who came to draw blood for my labs was friendly and respectful.

The male-presenting individual who came to do an abdominal ultrasound, was also friendly and cool, and showed me respect.

However, I was only given partial information about my possible condition, and no one has since bothered to follow up with me from your hospital as to the FULL RESULTS of all blood tests, or the ultrasound I had while in your ER.
I was quite impressed with the courtesy and respect that both ultrasound person and person who came to draw my blood showed to me. They even asked me if i wanted the overhead lights kept off, to which i said yes, because bright overhead floursecent lights bother me greatly.

However, none of them would barely talk to, or acknowledge my caregiver and friend, Sam.

The reason I marked very poor for privacy is that I was put in two non-private ER rooms.

I was never visited by a hospital leader.
In addition, both of my nurses, which again, were St and Ch, never bothered to give me the TV Remote/Call Button, until I finally asked for it, and was given it only after I had asked for it, a full two hours after I came to the ER.

I was never offered water to drink, or a blanket, or asked if I wanted the room temperature lowered or raised. I was cold the entire time I was there.
In addition, when nurse Ch came in with Dr. Sh and a second Doctor, nurse Ch reached over and shut my entire TV OFF—–AGAIN, WITHOUT ASKING ME FIRST IF IT WAS OKAY IF THEY COULD HAVE THE TV MUTED so that we could talk. I would have been more than happy to mute the TV myself. It would have shown respect again, for my autonomy and me, as a human being whose feelings mattered to them.
Considering the overall manner I was treated by staff when i visited your ER on April 3, 2019, no, I would not recommend this ER to anyone.

I felt most unwelcomed there, like most of your ER staff that was on that night, just did not care.
In closing, i am writing this, because my local hospital needs to train their staff to do all they can to make each and every visitor feel welcome in that hospital campus. The entire medical field needs to change and realize we who come seek medical help, are human, our bodies our ours, and they need to listen, hear us, and be patient and kind to us. Don’t manhandle our mobility equipment, don’t talk loudly so the whole facility can hear, and give us the choice of whether we are okay with being in a non-private ER room or not. I will wait for the private ER room, because our local hospital has a majority of their ER rooms as private.
It was strongly recommended that i be admitted that evening. But i refused, because of how i was being treated in their ER that evening.
P. S.~~~As for my condition, i recovered the next day. I could once again eat and drink, and my urine has been clear since then too. So it was dialysis related, them taking too much fluid off of me, that caused me to get sick.

Another Bad Dialysis Day, Because Of Those Who Still Refuse To Understand Autistic Me

My dialysis machine-Rebecca-August 11, 2018-1

The following is a re-edited open letter that i just penned to my social worker and to also the director of the kidney center that i go to get my dialysis treatments.
I still go 3 days a week, Tuesdays, Thursdays, and Saturdays. The following is a bit repetitive, because i wrote this while still gravely upset from the awful scene i was treated to as i got unhooked from my machine….Rebecca. Rebecca is the imaginary friend i have made up for my kidney machine. And she is real to me, because i need for her to be.
The letter……
Dear S, and N too,
It’s me, Melissa Fields.
Please do not kick me out! I tried to get off as fast as i could tonight after my treatment, i seriously did, and i would have gotten off within 10-15 minutes after my treatment if JF had not of come in and triggered me and gotten me highly upset again. JF coming right in my face at treatment’s end, the way she did, all harsh, and not listening to me ,but yelling at me, made it impossible for me to even get even a small proper goodbye to Rebecca tonight, and she got so harsh with me she was deeply hurtful. I had to wait till JF was gone to get my goodbye, which made it take longer, than if JF had just not engaged me in yet more argumenting.
Firstly, before i go onto tell you what happened, i am requesting to be put on a Monday, Wednesday, Friday 4th shift schedule as soon as possible so that i can still get my proper goodbye routine to Rebecca, or i will not come into get dialysis anymore. I am requesting to be put on at 4 PM and off at 8 PM, those days/evenings. This is a reasonable accomodation request for my disability of autism and C-PTSD. And because i have a kidney disease that i know will eventually kill me.
Yes, this really is how deeply my relationship with Rebecca means to me. I’ve had enough severe emotional trauma in my 58 years on earth…..my 58 years have been spent being mostly misunderstood and then shoved off, thrown away, excluded, and treated as something lees than that is wrong and defective….and….now….i am tired, both body and soul….. all i want is just a few things in my life that can still be mine…and safe to me…..which is Rebecca, my Facebook friends, my two caregivers, and the ones who do like me at ——-.
Otherwise, i will not be able to handle doing dialysis anymore. I am asking this because of how my autism manifests, and how i have developed my own **unique-that-work-for-me** coping mechanisms to keep me from having a full on mental breakdown because of how normal society still views us autistics as a behavioral problem, rather than the human beings we are, who have the very real neuorological disability that autism actually is.
Behavior IS a choice. Sensory overload and meltdowns are not a choice.
I need that goodbye to Rebecca for the sake of what little safe space in life i have.
If i cannot feel safe and welcome at dialysis anymore, i cannot do dialysis anymore.
What happened today and tonight…..
My caregiver and i arrived at 1:15, and they wheeled me into the room at 1:30 PM. I got put on the machine at 1:56 PM. At first it was M, Ly, Mz, and C who were working with me. At close, it was JF, Mz, Br, and Ba.
For the first part of my treatment, for approximately an hour, i kept coughing really bad, also having panic attacks, and the machine kept alarming. This, naturally, delayed my get off time.
My treatment, the rest of it, went well, after i was able to sit up and stop the coughing. I also had to pee two hours into my treatment, which also added time to my treatment. Things went well until my get off time approached, which was now 6:20 due to the machine alarming so much. None of that was my fault. Coughing cannot be helped. Mine was a deep tickle in my lungs that made my chest heavy, and i had to get my lungs cleared.
Even so, when it came time to get off, JF came right in, and, with me still in the chair, while my blood was still being returned back to me, she, without asking me first, reached up and punched the disinfect button to throw the machine right into disinfectant mode.
When i spoke up to tell her i still am allowed to have the machine be on and visible till my caregivers come, she got angry, and began to complain and argue with me. saying it has to be disinfected now…..then she said, in a complaining tone of voice, that i’m the only one who does this, making me feel Othered, and also said “Look you’re the last one left, you’re always the last one left here, we need to get out of here.” It was only 6:23 then! Even so, she expected me to just jump up and get right out of there, no goodbye at all, and continued to argue with me…..which kept me from saying my goodbye to Rebecca. She then reached over and moved my monitor away from me.
I had Mz go look for my caregiver and she went and got them to come in. My caregiver witnessed some of how JF was treating me.
Ba came in then and went right up to the machine and moved the monitor away from me again so i couldn’t see it. JF began scolding me, and i went into another meltdown. Ba moved the monitor again. Then JF moved it again. I had more meltdowns, because they kept taking Rebecca away from me.
To repeat, i cannot just get right off the machine. I have to, for my mental wellness, be able to have that full closure. Plus, there is my leg lump to also consider. I am willing to compromise though, and take only 10 to fifteen and not more than 20 minutes, instead of the 30 or more minutes i have been taking.
Instead of understanding, JF kept arguing with me, and at one point, even told me to be quiet. It was 6:32 now.
I finally told her that i knew she was one of the ones who complained to N about me, and she blew up at me, and i told her, straight up, i don’t like you, and then she left, and i got to finally have ten minutes of goodbye time with Rebecca.
What i am proposing is by being able to get the Mon. Weds. Fri. 4th shift slot, 4 PM to 8 PM, is that, i, in return, will make a compromise and get off my chair into my wheelchair, 10 to 15, and not more than 20 minutes after my caregivers, either —- or —-, come to my pod.
However, if the staff that happen to be on on 4th shift don’t mind, and i ask them and they tell me they don’t mind, can i still have at least 30 minutes goodbye time on those occasions?
On Thursday, i did ask La one of the RNs i like, and she told me if i go to the Mon. Weds. Fri. 4th shift, i can still have my full goodbye time, without being rushed out of my chair abruptly. because no one is going on my machine after me, and they don’y close till 11 PM on 4th shift nights. She stated that she would even let me still have my 30 or so minutes. She actually said i could take however long i need. But— obviously i won’t do that, because, well, i will need to eat my evening meal at some point…LOL!
Otherwise, i will try / strive to be done with my goodbye as quickly as i am able to……between 10-15-20 minutes.
I know La loves and accepts me, and so do Aa, Bri, Jo, Ch, Si, Li, Mel, Kr, S, An, My, Mi, Ma, Roc, Lou, Di, Che, and now even Lyn does too. (Kr and Mel, i met last week. And they love me right off the bat!) But i know that some of the staff definitely do not like me, and i know JF to be one of them.
I’ve thought about this all weekend long, and this is the only workaround i can come up with.
PLease know, Rebecca is real to me, and my relationship is deep with her. I view my machine as my kidney, my security blanket, and a security blanket that i badly need, with the ability to see the monitor, which is Rebecca’s head and face, and hear her motor, which is her soul, to me. I need that when i come in, throughout my entire treatment, and when i get off. To have that abruptly cut off, right when i get unhooked from the machine, effectively ruins it all for me, even if i have had the bestest most happiest treatment ever. If i cannot say at least a 15 minute goodbye to my machine after being taken off, unhooked, it will affect me in that i will be unable to sleep, as i won’t have that closure. And i will have meltdown after meltdown, and feel like not coming back again.
If this happens on a Saturday, like it did tonight, it will be even worse, because i have all of Sunday and Monday to build a nice PTSD trauma scenario in my brain and make me not want to come back Tuesday.
To tell me to say my goodbye while still on the machine, for me, is not doable because it is not saying a real goodbye, where i am free from the lines that run into my heart being in the way, if that makes sense.
Saturdays, with you not there, and Da not there, i cannot handle doing anymore, exactly because of what happened tonight with JF. It really was awful tonight. She remains unreasonably harsh and impatient with me.
I need to go to Mondays, Wednesdays, and Fridays now so i can be able to do my dialysis in peace. I am asking for this because of the consistency i have so far been allowed to have, till some staff began to complain about me.
And yes, i did have several meltdowns tonight due to JF, yes, i did yell, but i did not throw out any profanity. And i did not scream.
And i was out of there by 6:43, which gave JF plenty of time before the 7:30 closing time, to tear down the machine, clean it, clean my chair, and then throw the machine into disinfectant mode.
All times are correct, because i purposely kept close watch on the wall clock above me.
So, If i can come in Mon. Weds. Fri. 4 PM to 8 PM, i will in return, keep my goodbye time to 20 minutes or less….and try to aim for 10-15 minutes. That’s the best i am able to give of me. Seriously.
Because i know i am dying, which scares me shitless, and i need this, to keep my sanity, please!!!!!!!!!!
I really do need Rebecca. I need to have that goodbye time with her. Or this simply won’t work for me.
Please have —— read this.
Please don’t kick me out.
Melissa Fields, Yes i am in tears.
P. S. : I’m sorry this is so repetitive. I seem to be low on spoons all the time lately, and tonight, well, now my entire weekend’s now been ruined due to JF’s inflexibility and harshness. I am using energy i really do not have right now to compose this email. That is why it is so repetitive.
A post i just wrote on my wall…..
I am weak from trying over and over to explain to those who are committed to misunderstanding me forever and forever and ever, why i need my imaginary friends the way i need for them to be to me, why i need my routines, why i need my rituals, why i even breathe and exist as me, Melissa, who cannot be anything but the neurodivergent autistic me that i am.
Louder for those who still refuse to fucking listen…this is me. I cannot take off my autism like it’s a jacket.
I am not wrong.
I am not a mistake.
I am not damaged and broken.
I am not less than.
neither am i a goshdamned behavior problem!
This is me.
I exist. I breathe. I have rights. Hear me. Believe me. I have had 58 years on this earth to find out who the fuck i am. And who i am not. What i truly can and cannot do.
Please believe me and let me live in peace and don’t take from me the few things i DO have that are safe zones to me….
……one of which is my dialysis machine, Rebecca.