on being disabled watching newborns be checked to ensure they are perfectly not disabled

Note: audism, discussion of medical treatment of hearing, and general ableism in medicine

I have been incredibly preoccupied and overwhelmed with school so despite starting many posts I am only now completing one to post. Also, sometimes I plan ahead for this and schedule posts I've completed to only publish a week or two later. This means that as a reminder, something that happened "today" or "yesterday" according to a post could have been months ago. 

Today I went with a newborn to observe their hearing test. After the test, assuming the baby shows no signs of deafness, parents receive a pamphlet. I decided to look through it.

The pamphlet tells the parents in a congratulatory fashion, "Your baby has passed the hearing screening". The idea of "passing" the screening immediately caused me to think about what the alternative is. I asked a classmate, if the baby is deaf do the parents get a pamphlet saying "Your baby has failed"?

Inside the pamphlet there is a paragraph I found interesting. There are so many tests done on newborns I don't  think I can keep track of them. A lot of them happen without the parents even realizing or without them understanding. However, this particular test not only has a pamphlet explaining what the test is but why it is important.

It explains to parents why the hearing was checked and why it is important. It does so by saying that hearing is incredibly important and necessary for the baby to function in the world. That hearing is necessary to learn about the world. It warns the parents that hearing is necessary to prevent their child from doing poorly in school when they are older.

I understand why part of assessing a newborn would mean checking their hearing. I see the logic behind checking everything. I however saw no such pamphlet or patient education regarding non-disability related screenings.

So, I have a lot of thoughts, especially after reading that. It  brought up the general topic of how strange it is for me engaging in these assessments of babies to check to make sure they aren't disabled. It is a very bizarre experience to watch nurses do a test or check something on a baby to ensure that the baby isn't like me. To actually see how they react and talk about making sure a certain sign isn't present because it could mean the baby has the same kind of body that I do. Hearing how they talk about doing extra tests to rule out the possibility that a baby has something wrong with them that I do.

Thinking about what that means about how they will tell the parents if the child "fails" and is like me.

I wanted to hold that baby before his MRI today. I wanted to tell him that if he does have that thing wrong with his spine they are worried he might have, that it is okay. That I have it too.

I often feel guilty because standing there in the nursery in pain (despite wearing my TENS and my lidocaine patches) and watching the babies be assessed there is often a split second before we know the outcome of a test when I hope that they will fail. Sometimes, I hope that they will be assessed and deemed imperfect like me. Partially because I want to feel less alone there but also because I wonder what it would be like for the parents to see a single face not sorry for them after hearing the news. To have someone still be congratulatory on their beautiful new human being. 

I think it is in those few seconds that I feel most alone. Feeling the nurse's relief that this baby is worthy of the shrine to perfection that is a newborn nursery. Knowing that I don't belong. 

pelvic floor dysfunction, pelvic floor PT, and pelvic pain

Spinal nerve issues can mess up a lot of stuff in your body. Depending on which nerve roots are involved different parts of the body are affected.

The sacral region of my spine (the area that starts basically right below your low back) was affected. So my neurosurgeon sent me to a urologist to be evaluated since there are lots of annoying to dangerous things that could have been going on without us knowing.

Long story short, some time after surgery I had to get a referral from her to pelvic floor physical therapy (also called women's health PT but that isn't trans* inclusive nor does it include all the cis men who are being helped by it as well).

I had urinary urgency, frequency, nocturia (needing to get up and pee at night), as well as bladder and pelvic pain. It was super unpleasant and so I started PT.

I have been in PT on and off for a while now. I am very open about my experience because it is rarely talked about but very important. I lost track of the number of people I've talked to about it because they were hoping for help with similar problems.


I have offered to people I know and I'm offering here now. You can comment here (or if you don't feel comfortable you can email me) with any question at all related to the subject of this post. Within reason (i.e. it isn't rude or mean) you can really ask ANYTHING. If I don't feel comfortable answering, I won't. I would like to write more posts about this topic so I can refer people back to them when the topic comes up but I also want to answer the questions that would be most useful for somebody who needs the answers.

Ask me anything about pelvic floor dysfunction, PT, and pain. 

How to be an Ally to Sick and/or Disabled People

Trigger warning: Quoted examples of ableist, patronizing, condescending, or hurtful speech (i.e. examples of what not to do)

The following was also posted yesterday on Autistic Hoya and was written by a mutual friend of ours. This friend gave both of us permission to post it and is also the author of Lydia's blog post "A Guide to Sighted Allyhood" found at the link http://www.autistichoya.com/2013/08/a-guide-to-sighted-allyhood.html.

How to be an Ally to Sick and/or Disabled People

By "Sick" here, I am talking about people who deal with chronic illnesses like fibromyalgia, lupus, arthritis, multiple chemical sensitivity syndrome, chronic fatigue syndrome, and other physical conditions that are not always immediately noticeable. Some people with more apparent disabilities (like wheelchair users) may also be dealing with similar symptoms, as part of their disability, that are less apparent. (For example people with muscular atrophy, spinal cord injury, etc. might also be dealing with fatigue, chronic pain, etc.)

This is just my opinion, one person's perspective, though I have run it by some other people too. Please don't take this as the gospel though. I welcome additions from anyone who is Sick or Disabled in an often unapparent way.

In each section, I start with the DON'Ts to help highlight the DOs. 

1. Being the Judge. The Judge says: "You were able to do that yesterday." "But you went on a hike with me once." "You don't look like you're in pain though."

Do not make yourself the judge of a person's level of pain, fatigue, etc. Everyone has good days, bad days, in-between days, and you don't know what price they pay to do the things they do. Maybe they went on that hike and spent a week in bed after because they really wanted to enjoy nature and decided it was worth it. This person's care team monitors their health much more closely than you can as a bystander. This person's (chosen) family has seen how their illness affects them much more intimately than you have. Leave it to their support team, and realize that a smile and vibrant look for 2 hours at a party doesn't mean that person isn't sighing or in tears when they go home. If you are not very close to this person, there might be a whole other side you never see. They might not feel like being on public display, and making themselves vulnerable.

An Ally says: "I'm sorry you're hurting so much more today." "I feel honored that you accepted the health risk just to spend time with me in nature." "Wow, you have impressive coping skills for hiding pain."

An Ally recognizes that they do not have the same experience as a Sick person--they do not understand the natural ups and downs and fluctuations. An Ally understands that often when a Sick person comes off as more abled than they are, it's out of a conscious choice to pass, or in other words, juggle perception and reality. An Ally recognizes someone's skills in passing as abled for survival, while only being a source of support when the Sick person lets the pain show, can't hide the fatigue anymore, and respects the person when they choose to be vulnerable and emotional.

2. Being the Doctor. The Doctor says: "You should eat less sweets." "You should stop drinking." "Have you tried acupuncture? Exercise? Raw food diet?" Etc.

This person has dealt with their symptoms far longer than you have. They know what options are best for their body and what options aren't. Their health is their personal business. They will ask you for advice if they want it. They also know when they have to make choices for their emotional health. Maybe some ice cream helps them deal with the shitty reality of being in sick. Maybe a beer helps reduce their pain, or makes it easier to deal with symptoms mentally. Respect that they are coping with the situation in the best way they know how, now, and with the support that they do/don't have. Try to be a source of support. Keep in mind that whatever you have to suggest that they didn't ask for, they have probably already heard it nine million times before. 

An Ally says: "I'm so glad you're engaging in self-care." "You deserve a break from the pain/fatigue/nausea/etc." "Would you like some suggestions? [in response to a "yes"] This is what has worked for me/someone I know." 

An Ally recognizes each body and mind is different. An Ally recognizes the mental, spiritual, and emotional needs that also need to be factored into living with chronic illness. An Ally aids in finding ways a Sick person can get some kind of relief (even if temporary or partial) from their symptoms. An Ally recognizes that medications, therapies, and remedies that may have worked for them or someone they know may not necessarily work for everyone. An Ally gives advice only when asked.

3. Being the Parent. "Are you sure you can take that many classes?" "Are you sure you can do that job?" "Should you really be staying out this late?" 

This person can make their own choices and figure out their own plans. They have figured out ways to do what they wanted in the past, and can figure it out for the future too. They already know better than you the price they will pay for their choices now. Don't take it upon yourself to parent them if that is not something they have indicated they want. If they ask, that's another story, but don't impose that role onto yourself (and the role of the helpless child onto them). No matter how well-intentioned you are, when the help is not requested, it's patronizing. 

An Ally says: "I support you in pursuing your dreams." "I know you can do it." "You can crash at my place if you need to." 

An Ally realizes that abled people do not always make the wisest choice for their bodies because sometimes they want to have social lives or have fun. Sick people are no different. An Ally recognizes that a Sick person has the same right to fun and community. An Ally is willing to take steps to help the Sick person live an enriching life and trusts Sick People will go through their own process of figuring out how much or how little they can take on career- and hobby-wise. 

4. Being the Martyr. "I always have to give you rides everywhere!" "Why do I always have to do the house chores?" "What would you do without me?" 

Caregiving is great when it is just that--giving. Giving with conditions in mind, with guilt-tripping, with threats of withholding the support if the Sick person doesn't do a) b) c) is not true caregiving. At best it's not nice, and at worst it's abusive. It is wielding privilege over the other person and creating an unbalanced power dynamic.

An Ally says: "I'll give you a ride"--without making themselves into the Savior for doing so. An Ally cherishes and values the ways in which a Sick person can contribute to a relationship, even if those ways are less tangible. An Ally recognizes that chores and practical every day living stuff is only one way of giving in a relationship and that a Sick person may have to find other ways to give back (such as through art, emotional support, expressing appreciation). An Ally recognizes that there is a power dynamic and that privilege needs to be carried with care and conscience. An Ally also respects their own boundaries and limits with giving so that resentment does not build up in the relationship.

5. Being the Complainer. The Complainer says: "It's exhausting hanging out with you." "You're always canceling plans last-minute." "I can't do this." 

Being in a caregiver role, or even just being a friend or acquaintance of a Sick person can be a lot to handle. Sometimes it seems like tough stuff and maybe more than you can handle. However remember that while this is hard for you, it's even harder for the Sick person. Imagine what it's like to be in their place.

An Ally says: "I love hanging out with XYZ but it can be exhausting"--to someone else they trust, not the Sick person. An Ally lets other abled people who are able to be emotionally supportive know: "XYZ may or may not show up to the party tonight"--without judgment. An Ally says "I can't do this alone"--to a person who is dealing with less hardship than themselves and seeks support OUTSIDE the relationship with the Sick person. An Ally reaches out to other people to vent and debrief about the hardship of being friends with a Sick person or in a caregiving role.

6. Being the Worshipper. The Worshipper says: "You are such an inspiration!" "Wow, if I were you, I would just kill myself." "You must have a special relationship with God/[insert spiritual figure here]."

A Sick Person does not exist to make you feel warm and fuzzy inside. Your sense of gratitude for your own health and circumstance should not be hinged upon their suffering. There is no correlation between being Sick and any sort of spiritual or religious status. Sick people, liked abled people, run the gamut in terms of religious and spiritual beliefs (or lack thereof). It is important not to view a Sick person's existence in terms of your own, or to impose shallow stereotypes onto Sick people. 

An Ally says: "Sometimes you stay strong, and sometimes you crumble, because you're human." An Ally says: "I respect your feelings about life and death." 

An Ally takes a Sick person's words about faith/spirituality/lack thereof at face value. An Ally gives a Sick person the space to be an individual, and realizes we all individuals yet all interconnected. A Sick person might teach you something, but you might teach them something. And yet, even if you have strong impacts on each other and learn from each other, your life purpose is not reduced to their education. You each live for your own sake first. 

7. The Over-Empathizer. The Over-Empathizer says: "Oh I know what you feel like--I hate when I get the 24-hour flu." "Oh yeah, I'm tired after a long day too!" "I pulled a back muscle once." 

Yes, we have all suffered to some extent. We've all dealt with some degree of sickness or injury. But it is important to remember that being temporarily sick, or in temporary pain, is not the same time as chronic illness or chronic pain. The intent to be compassionate is recognized, but it's important not to diminish a Sick person's experience. It's important to recognize abled privilege. If on the vast majority of days you aren't tired, aren't in pain, etc. then you do not understand being Sick. 

An Ally says: "I can't imagine what it is like to feel nauseous every day." "I have no idea what it feels like to be tired by 11 AM." "You're right, I don't know what it's like." 

An Ally recognizes their abled privilege. An Ally is compassionate but recognizes they do not fully understand. An Ally uses their experiences and draws parallels to try to get an idea, but recognizes that temporary pain/injury/discomfort is only a small taste of what Sick people go through. An Ally recognizes that pain/symptoms/sickness is a Sick person's baseline, their every day.

8. The Victim-Blamer. The Victim-Blamer says: "Why don't you stop focusing on it so much?" "Maybe you were evil in a past life and are dealing with this to fulfill karma." "Maybe if you listened to my advice you'd feel better." 

Different Sick people cope in different ways. Some Sick people find that thinking and talking about it helps. Some Sick people find that it doesn't. Sometimes shitty things happen to perfectly good people, and this is no exception. The underlying reason to victim-blaming is often some attempt at denying privilege or absolving guilt. Realize that the Sick person did not choose illness and you did not choose abledness. It's not their fault they're Sick (even if they made poor health choices at one point, so did a lot of people who never became Sick). And because you didn't choose to be abled, there's nothing to feel guilty about. Feeling guilty helps no one; if you recognize your privilege and feel stuck, think of ways you can use that privilege to practice allyship. 

An Ally says: "If you need someone to vent to, I'm here." "I don't need to insert my opinion into every discussion about chronic illness." "It doesn't matter what made you sick, how can I best be supportive now?" 

An Ally recognizes that Sick people are human and sometimes get overwhelmed by their situation. An Ally recognizes that at times a Sick person may want to vent among other people who understand first-hand what it's like. An Ally also recognizes that we all make mistakes or poor choices and that is a part of being human. An Ally recognizes for example that one person could text and drive and nothing happens, and the next could text and drive and get permanent brain damage. Even if an illness is connected to a poor choice, it still doesn't mean the Sick person deserves the illness.


Other comments that come from a place of privilege:
"Your outfit looks so tacky." Part of being Sick is that often when it comes to getting dressed, comfort comes first. If the only pants you can bear to have touch your skin today are the blue pineapple shorts, then that's what it's going to be. Note: many Sick/Disabled professionals wear the necessary attire and look forward to ripping it off and putting on PJs the second they get home. 

"You can't be an activist sitting at home on your couch. If you really care, you'll come to this protest/ rally/ march." Many Sick/Disabled activists have no other choice. Online activism is just as valid as in-person activism. Activism is about ideas and changing the way we think--it's not about how many hours you spent under the burning sun/ in the cold wind. 

"Your apartment is a mess." Doing chores takes energy that many Sick people don't have. It's not the same as laziness. Laziness is "I could do it if I wanted to, but don't feel like it." Being sick is literally being so drained of energy you wouldn't be able to do it even if you wanted to.

Sick folks, feel free to add! This is a live document--a work in progress--I look forward to having other perspectives added. If you need to see this in ASL or another format, let me know. Contributions in other formats are welcome (if you want to talk about it in PM and have me rephrase, or sign your thoughts to me in TASL, I welcome them.)


Updated based on some comments received.

Thanks so much for the comments! Here are a few additions.

9. Being the Ablesplainer. The Ablesplainer* says: "She was just trying to be nice." "But that's not how I meant it!" "You're too focused on how you feel."

Sick/Disabled people already know how that abled person meant it. We already know that they were just trying to be nice, or kind. Good intentions, good-heart, we get it. We spend our time thinking about "what they meant by that comment" or "their thinking behind that act" all the time. We are forced to think critically about the abled perspective because most people in our life who interact with us interact with us from that perspective.

An Ally says: "That was a dismissive comment to make." "I'm sorry you are frustrated." "That person didn't think about the impact their actions would have on you."

An Ally puts impact before intent. An Ally recognizes that even though someone means well, their words, thoughts, and actions can still have a harmful impact on Sick people. An Ally centers the Sick person's feelings in a discussion about their chronic illness and caregiving. If a Sick person vents about patronizing behavior, an Ally listens to the Sick person and values their feelings. An Ally doesn't make excuses for another abled person's behaviors.

*Ablesplainer (also ablesplanation): the act of an abled person trying to explain Disabled people's experiences to them. It comes from combining the terms abled and 'splaining, constructed parallel to terms like whitesplaining and mansplaining.

10. Being the Newscaster. The Newscaster says: "Oh, they had to get this test done and has that diagnosis and their doctor said this and that." The Newscaster answers all questions about a Sick person's health on the Sick person's behalf without express consent or discernment.

When some is Sick, particularly when they have to go to the hospital or get some kind of treatment, it's natural for people to be concerned. People want to know this Sick person is doing okay. They want to understand what's wrong and offer help in whatever way possible. The Newscaster is usually acting on this intent, but does not realize that they are not respecting the Sick person's boundaries. They also do not realize that they could be causing a lot of drama for the Sick person, particularly if they share sensitive medical information to people who could make harmful judgments based on this information (for example, an employer deciding to lay off an employee after finding out they're likely to be out for awhile.)

An Ally says: "They had this test done"--after the Sick person has given express permission to share this medical information. An Ally says: "He doesn't want to go into detail, but suffice it to say he is doing better." An Ally asks the Sick person how much to share, and who can know what information.

An Ally respects the Sick person's boundaries. An Ally respects the Sick person's choices in how much to disclose about their illness and to whom. An Ally prioritizes the Sick person's privacy over others' curiosity. An Ally understands the risk in sharing medical information and treats this information with the respect and care it deserves.

racism and other sadness of the soul

TW: racism, murder, US legal system, white supremacy, white privilege, and some ableism
 
*******
 
 
 
 
So, for those of you following the news/social media/the US anything recently you probably heard about the Trayvon Martin verdict. A lot of people have a lot of feelings about it and I have been reading some stuff and thinking a lot and decided to just put it into a post.
 
While this issue and the current news and feelings are not about me, as a white person, and don't revolve around me, one of the nice things about having a blog is that it does revolve around me. The blog is about me and how things affect me, not just how things are in the world.
 
 
 
In the past 12 hours something came back into my head which I hadn't thought about it years. Just now when I was trying to remember it, I was surprised that the name popped into my head so easily: Amadou Diallo.
 
For those who might not remember or who weren't alive/old enough to know, I will give the very brief summary and then link you to the wikipedia page. Amadou Diallo (wikipedia page link) was shot and killed by plain-clothed police on February 4th, 1999. He died at the age of 23 after four cops fired a total of 41 shots (19 of which hit him according to wikipedia) in the Bronx. Diallo was unarmed and outside his apartment building. Another black man at the time was armed and a serial rapist and the officers (remember, plain clothes) approached him. After a series of events (which I am unclear on and will not guess) Diallo pulled out his wallet and the officers who thought it was a gun began to shoot him to death.
 
The internal NYPD investigation ruled that they acted within policy (i.e. done nothing wrong). The Bronx grand jury indicted them on 2nd-degree murder and reckless endangerment. It was appealed and eventually the four police men were acquitted of all charges. In 2001 the Justice Department announced that it wouldn't charge the officers with a violation of Diallo's civil rights. In 2000 Diallo's mother and stepfather filed a lawsuit against the City of New York and the officers charging gross negligence, wrongful death, and racial profiling and other civil rights violations. They won (a lesser amount than they had filed for, but still a significant amount). Here is a link to some NY Times articles about the issue.
 
Apart from some of the obvious similarities of an unarmed black man being shot to death and the killer(s) being acquitted there is my own egocentric reason for writing about both of these.
 
The death of Amadou Diallo is the first significant memory I have of realizing that racism wasn't over. In my sheltered little bubble with my middle class friends of varying racial and ethnic backgrounds, I had been led to believe that we were past all that. I learned about racism and lynching and all of that in a historical sense. I learned that the civil rights movement happened and that Rosa Parks and MLK Jr. destroyed the white supremacists in their non-violent righteous battle and that now we were all equal.
 
Amadou Diallo's death was a startling wake up call for me. I was old enough to understand what was going on but not old enough to feel like my thoughts mattered or that I could do anything. I was helpless and confused. I had no idea how a wallet could look like a gun, even in a badly lit area. I also thought that cops were good and only hurt bad guys and that this was an isolated incident. I assumed that the men would be brought to justice since they were just bad cops, not representative of what cops were like (because cops protected us, all of us, because I was white and that's what I was raised to believe).
 
Diallo's death was still in the back of my memory when I was reading about the recent verdict. I have been hesitant to even type out his name and have only been saying "the recent verdict". However, like Diallo's name etched forever into my mind the name of Trayvon Martin should not be erased.
 
While Diallo's murder is the first one I remember being aware of, it was not the last. Like many people, most of the names of the murdered fade away and are forgotten. Trayvon Martin is the first name to stick since that time when I was a child. The first time I have heard the same name more than once, the first time I have heard people talking about it for more than a few days and angry about it to the point of action.
 
 
I am white. I do not try to hide the fact that I am white and when people meet me I am read as being white. I benefit from white privilege constantly and feeling guilty about that does shit to keep black men from being murdered. My guilt and discomfort with my privilege is useless to bring justice to the families of those people being murdered.
 
Instead of talking about white guilt I'm just going to share some of the articles I've been reading lately and tell you to read them. Go read something else or do something else. Ideas below.
 
----------------------------------------------------------------------------------------------------------------
 
I've heard that doing activism via social media only is "slacktivism" and that is some ableist bullshit. Some of us can't take to the streets. If you can, great, check out this link: http://peoplespowerassemblies.org/justice-for-trayvon-martin-actions/.
 
Sign a petition?
Those are usually pretty easy and not super spoon draining (I think it is acessible but if I am wrong please call me out): Petition (there is also a petition through NAACP but I can't seem to find the link at the moment)
 
 
Read up on racism?
I read Beverly Tatum my freshman year of college and, like the experience after the murder of Amadou Diallo, I began to completely rethink how I saw race. The whole class it was for but her stuff and her analogy in particular are useful.
A blogger's explanation of Tatum's analogies
If you haven't read Peggy McIntosh's "White Privilege: Unpacking the Invisible Knapsack" (of which there are mulitple lists created for other types of privilege) then I highly recommend reading it.
 

Read this:
"In the outpourings of grief and anger about the Zimmerman verdict, I’m asking myself and other white people: how are we reflecting on and actively transforming our own personal racism? And our collective racism? This is not about hating ourselves, it’s about loving ourselves so much that we commit to transforming ourselves and our communities. Because white people: we are ALL racist. It is impossible to have grown up in a white supremacy and not have taken on racist beliefs and actions"
Now read the rest of that article: http://sunnydrake.wordpress.com/2013/07/14/racism-is-to-white-people-as-wind-is-to-the-sky/ 
He mentions in the article and I'm going to agree that it is worth checking out this presentation.

 

1 Black Man Is Killed Every 28 Hours by Police orVigilantes: America Is Perpetually at War with Its Own People which is an article about Operation Ghetto Storm.

 

In other news: “Marissa Alexander of Jacksonville had said the state's "Stand Your Ground" law should apply to her because she was defending herself against her allegedly abusive husband when she fired warning shots inside her home in August 2010. She told police it was to escape a brutal beating by her husband, against whom she had already taken out a protective order.”

Intersectionality of current events?

 
   
And I will let bell hooks finish it off for me since I can't top anything she says:

"White supremacy has taught him that all people of color are threats irrespective of their behavior. Capitalism has taught him that, at all costs, his property can and must be protected. Patriarchy has taught him that his masculinity has to be proved by the willingness to conquer fear through aggression; that it would be unmanly to ask questions before taking action. Mass media then brings us the news of this in a newspeak manner that sounds almost jocular and celebratory, as though no tragedy has happened, as though the sacrifice of a young life was necessary to uphold property values and white patriarchal honor. Viewers are encouraged to feel sympathy for the white male home owner who made a mistake. The fact that this mistake led to the violent death of an innocent young man does not register; the narrative is worded in a manner that encourages viewers to identify with the one who made the mistake by doing what we are led to feel we might all do to 'protect our property at all costs from any sense of perceived threat.' This is what the worship of death looks like.”

 

 
 
 

My body falls apart and starts collecting doctors

Content warning: doctors, medical stuff, specialists, pain, medication, brief mention of grad school, and other related topics


Backstory: 
I have had chronic muscle (back) and nerve pain (leg) for the past 2 years. When it first started they didn't know what it was. They thought it was a herniated disc so after a few months of trying to get appointments and referrals and find a specialist covered by insurance, I finally had an appointment with someone. She sent me for an X-ray to get a better look at what she assumed was a herniation.

The MRI came back and we realized that it was not in fact a herniation. To totally over simplify, I was born with a spinal cord abnormality that was asymptomatic for most of my life until a few years ago. A few years ago out of nowhere the pain started. They don't know why it started when it did but after it started it only got worse and then began to spread. After we got the MRI and realized it wasn't a herniation (later that day) we saw a neurosurgeon and started the process of preparing for and scheduling surgery.

I might post more about some of this stuff later but basically I had surgery, spent 4 days in the hospital, and then came back home. Shortly after I started the fall semester at school and juggled post-op visits with my neurosurgeon, college workload, starting physical therapy (and going twice a week), finding time to see my partner (at a different school in the same city), and occasionally do things like cook and clean.


More recently: 
As a result of my spinal cord stuff I have to see my neurosurgeon every year for a checkup and any time there is any indication of a change in symptoms I need MRIs. I HATE MRIs! Anyway, recently he found out that the slight herniation I had when I first had an MRI is now a full blown herniated disc. So, he wanted to send me to a spine specialist to make sure that there was nothing to be worried about in terms of that. The spine guy agreed that since there hasn't been any noticeable change in symptoms correlating with the progression of the herniation it most likely hasn't really done much to me. Basically, I was in so much pain before it that if it caused any pain it was less than what I was already in .

I told my dad that I didn't want someone to just put me on narcotics. I know that for a lot of people they are totally necessary and I don't want to imply that those people aren't trying hard enough with other methods or anything. I just personally don't think I could take them regularly and don't want to. I also just don't like being prescribed stuff constantly when there are non-pharmaceutical options available. One of the main reasons I'm resistant to narcotics is that I'm on a number of medications already and I don't like compounding side effects and things. This is all how I personally feel and not AT ALL a judgment or statement about people who use opioid pain relief for their chronic pain. I trust that their decision is what is right for them and my personal decision is my own, just as theirs is. There have been specific times in my life where I have decided that pain meds were necessary but while in nursing school I want to have other options.

A few months ago my dad finally had me see a pain specialist. He reassured me that it would not just be someone trying to prescribe me pain meds without giving me options. At the appointment we discussed a number of things. He said that physical therapy was one of the least invasive options but since it didn't seem to be helping enough for me he wasn't going to force me to go back and do more. There are also non-opioid medications that can help with pain. He mentioned a few other options and said that as a LAST RESORT there is a procedure they can do which involves inserting something into my body for spinal cord stimulation but that he didn't want to try that unless everything else failed.

So, the anti-depressant I have been on for a few years already (Cymbalta) is commonly prescribed to help with neuralgia. Unfortunately, since it obviously wasn't helping much (as far as I know, I was on the Cymbalta years before the pain ever started) so I couldn't be put on Cymbalta for the pain. However, Neurontin (Gabapentin) which is an antiepileptic (i.e. medication for people with epilepsy) is also prescribed for pain. So he started me on that. It seemed to actually be helping. Until I started clinicals.

For those who know what nerve pain is like from personally experience, you understand, and I'm sorry that you do. Those of you who don't, I will try to explain. The types of words most people use to describe nerve pain, medically referred to as "neuralgia", are sharp, shocking,  stabbing, burning, sometimes icepick pain and lots of other really unpleasant words. Everyone has different experiences but the neuromuscular pain in my back that I get, while really bad and sometimes bad enough that I can't walk or get out of bed is still manageable to me. The nerve pain however fogs up my brain and unlike the back pain there is nothing I have found to make it easier at all.

I have done physical therapy, I take over the counter pain medication, I bought a lumbar support brace, and I put a prescription cream pain medication on. I was still in pain for clinicals. The program has also made it clear that if there is anything I can't do in clinicals due to disability, I still fail. That is a whole other post and I'm too upset about it to even try to start talking about it. Anyway, pain is bad and I was seeing the doctor again. 

The other day:
So the other day I had a follow-up appointment at 8:30am with a pain management specialist. 8:30 isn't so early for a lot of people but I'm really not a morning person. Also, I'm in a very rigorous program and I have classes most days starting at 8 or 9 and they go until after 7pm one night and I'm always exhausted. I never have time for work etc. so on my one day a week that I get to sleep later than 8pm having to leave the house at 7:30 is horrible.

We go there and the receptionist isn't even there yet. Finally she arrives and notices we are all there and signs us in. It takes a while and finally I go in to see him. The nurse comes in. In general, I really like nurses. Not surprising since I'm in nursing school. I however really don't like the nurse he works with. She messed up my history when she entered it into the computer last time around. I spelled stuff out for her and everything but she wrote down the wrong medications for which ones I am on (which is super dangerous to have the records wrong) and she wrote down the wrong surgeries for me as well and the wrong years and stuff. So, I wasn't the biggest fan.

Next I got to see a pain fellow. He did lots of things that were super obvious (as someone learning to do a head to toe physical at the moment) were him trying out what his clinical instructor just taught him recently. A lot of the tests were totally unnecessary and it was sort of like a "does this hurt? hmm, not yet. okay, what about this?" game to see what he could do to make it hurt. So yeah, not my favorite game. Then he suggested I get steroid injections. The last time I was there, my actual doctor had said that normally he'd suggest steroid injections to my spine but due to the surgical history and all the other shit going on in that area he didn't think it was the best idea.

HOWEVER! The doctor comes in and basically redoes half the tests and then suggests we do the invasive actual surgery that the time before he had suggested as a LAST RESORT. So yeah, I'm a little frustrated. Also, at this point from sitting around waiting for him all this time and being stressed and stuff I'm in pain and exhausted and have brain fog. Also, I really didn't have the spoons to be like "What are you talking about?!?! You are the person who thought we should leave my spine alone!!! Do you even read your own notes from previous visits?!?!". Also, a while back I actually read a study they did about chronic pain and the type of procedure he was suggesting and they said in the study that it was only indicated for people who had used TENS units for years and no longer found any relief with them. I have only used a TENS (transcutaneous electrical nerve stimulation, basically applying electrodes to your back and stimulating the nerves that way) in physical therapy a few times and really liked it. I mentioned that I was interested in getting a unit for home (you need a prescription and a session with someone to teach you to get insurance coverage and stuff) and he had just said to ask the rehab guy.

So despite the fact that I had been interested in getting a TENS unit and nobody has let me try it yet and a whole other list of things he seemed to forget everything he said and suggest I see a neurosurgeon to discuss whether cutting me open again and implanting stuff inside of me that will be remote control operated is a good idea. If I hadn't been so tired and in pain I might have been able to respond with anything other than wanting to cry. He is increasing my dose of the neurontin so hopefully that will help, but I have managed to avoid the side effect of being exhausted constantly and am worried that the higher dose will make that worse.

I am SOO sick of being sent to a bazillion specialists. To repeating the same information every time. To finding the time and money to go. It is just unbearable. I also don't want to do spinal cord stimulation. I don't want to be cut open, experimented on, or anything else. No. I'm sick of specialists and having specialists refer me to more specialists. This is me putting my foot down. I don't understand why I have to use up all my parents money if I want pain relief without being cut open or medicated. At a certain point you have to evaluate whether being shuffled around and spending all your money is worth the minimal amount of pain relief they might actually provide. So, while I feel like a two year old throwing a temper tantrum, I'm going to keep saying no because it is just not okay to think that people have the time, money, and energy to be sent to specialist after specialist.



My collection: 

So, in case you haven't been counting and to fill you in on the ones I haven't mentioned in this post, lets count all the medical professionals who I have seen over my life. I'm not counting multiples if they are for the same thing (i.e. pediatrician-->internist they aren't counted separately and I have had a bunch of different GYNs).
I am putting *s by people I (was supposed to) have seen in the past year

Before my spine released hell upon my life: 
1.* Internist
2. Gastroenterologist- GERD and IBS (acid reflux and irritable bowel)
3. * Dentist (doesn't really count since I'm way behind in going due to not having time with all my other doctors)
4. *Eye doctor- I've had glasses since I was in 2nd grade or so
5. *GYN- Most likely I have endometriosis (I've switched a bunch of times over the years and think I finally have one I like)
6. Hemotologist- I have a family thing which means I just clot a little slowly and bruise easily (only relevant if I'm having surgery)
7. Breast specialist person- I had a lump removed from my breast when I was in high school
8. Otolaryngologist (aka ENT, ears nose and throat) surgeon- I had my tonsils removed because they were super cryptic and horrible and I had a chronic bacterial infection from them
9. *Psychiatrist- Autism Spectrum ("Disorder"), depression, anxiety, OCD, and some other stuff (I've been seeing him fairly regularly for a few years and he deals with all my meds)

Since the pain started
10. Some type of specialist who had the MRI taken and then freaked out when she saw what was actually wrong (i.e. not a herniated disc)
11.* Neurosurgeon- who operated on me and who does the follow-up; technically the NPs who work with him do a lot of the follow-up but they keep changing
12.* Urologist- I'm writing another post on this experience, but spine stuff makes certain urological things problematic
13.*Physical therapist- I started up a few months after surgery with them (PT and PTA) to work on my back and leg stuff, on and off for about a year and a half
14.*Women's Health PT- (in the other post explained) for pelvic floor stuff, still going there (have seen 3 different people there)
15.* Pain specialist- to try to make the pain manageable
16. *Spine specialist- the guy my neurosurgeon sent me to in order to make sure the herniated disc was okay
17. * Rehab doctor- pain specialist referred me to him, supposed to get acupuncture to help with pain but it is so incredibly expensive (since acupuncture isn't covered by insurance) that I can't bring myself to do it. I might wind up going because my dad wants me to try it but I know that my parents can't afford it and I'm so tired of how much I cost to keep "healthy"
18. *The new neurosurgeon the pain specialist referred me to in order to evaluate the possibility of the spinal cord stimulator

Epilepsy Education

I know very little about epilepsy and seizures. Growing up the little I knew came from the media like the rest of the world I suppose. I thought seizures were things people got and they shook and vomited and you had to keep them from swallowing their tongue or some weird shit like that.

I never knew anyone with epilepsy growing up (that I knew of at least). The first time anyone I knew had a seizure was when my aunt had one. She had more than one and I didn't understand it and I forget how my parents tried to explain it, obviously not the memorable part (she wound up having brain cancer and died and I'm not going to get into that).

I learned that certain things could trigger seizures from their warning labels: video/computer games, strobe lights, etc. That was all I knew. I figured it must really suck being triggered to have seizures by all that stuff. I don't remember if I understood what epilepsy was even or just thought people magically got seizures from video games.

Anyway. I have since encountered the wonderful Neurodivergent K. Their frustration with the inaccessibility of the world has made me more aware of epilepsy and more knowledgeable about it. I still know very little. I still don't really understand it. I will presumably learn a lot more in nursing school, but still not enough. So, Neurodivergent K has offered to help me out and fill in the blanks of my epilepsy knowledge and to help me review some of the information I'm receiving throughout my education from the perspective of somebody who actually gets what epilepsy is like.

I hope to have many more posts on epilepsy education but for now I have a handful of links to their blog posts to share and then the first textbook critique of the semester.

Partial WHAT?
What epilepsy is
Anticonvulsants & me
First Responders & Me
My seizure first aid



Textbook Game!
So, the image below was taken from Taylor's Clinical Nursing Skills: A Nursing Process Approach (3rd edition) by Pamela Lynn. It says that this is for a patient known to have seizures and how to protect them. 

Neurodivergent K's response: That's standard for people with tonic clonic seizures. For people with partial complex, it could be anything from "eh whatever" to "they trip on the guard rail because they go for a walk", which is all kinds of exciting. The persistant ignoring of partial seizures baffles me, since they're by far the most common.

So, I was curious why this seemed to be only directed at tonic clonic seizures. I thought maybe it had previously specified that the "seizures" they refer to here are tonic clonic and that those were the dangerous ones to be addressed blah blah. So, since I have ebooks I did searches within them.

Total instances in the textbook of the following phrases:

partial complex seizure: 0

partial seizure: 0

tonic clonic: 0

seizure: 63

epilepsy: 6

Hmmm. I hope I will be learning something about epilepsy in nursing school...otherwise, Neurodivergent K supplementary education!!

Might update this post later or post more fun epilepsy related things. 

What's for dinner? Fat shaming with a side of ableism

NYU Prof to Obese PhD Applicants: Thanks, But No Fatties Allowed

The above article. Feel free to read it on your own before I comment on it or don't since I will cover the basics. 

Below is the image which is at the top of the page where the article is and directly below that image will be visual descriptions of it. 

[visual description]

The article has a rectangle above it in a blue color (I think? or it might be purple which would make more sense since the NYU color is purple. Within that rectangle are 2 main things. 

1) A black outline of a scale (the kind used at the doctor which is not digital) with a white NYU logo of a torch thing standing on it 

2) The tweet of Geoffrey Miller @matingmind with a photo presumably Geoffrey Miller next to his name [photo of a light skinned male presenting person with glasses and dark hair]. There is of course the little twitter icon in the right top corner of the tweet box thing. 

The text reads: "Dear obese PhD applicants: if you didn't have the willpower to stop eating carbs, you won't have the willpower to do a dissertation #truth" 

**As with any visual description I do or other accessibility attempt please feel free to let me know if it is incomplete or otherwise not fully accessible**

The article itself is written by Laura Beck who then tells us that Miller is an evolutionary psychologist and lecturer at NYU. She mocks his lack of willpower for not being able to hold back from sending this ill conceived text out into the world of the interwebs. After "the backlash" he deleted the tweet and then tweeted :

My sincere apologies to all for that idiotic, impulsive, and badly judged tweet. It does not reflect my true views, values, or standards.

— Geoffrey Miller (@matingmind) June 3, 2013

And...

Obviously my previous tweet does not represent the selection policies of any university, or my own selection criteria.

— Geoffrey Miller (@matingmind) June 3, 2013

Yeah, wow. So, he refers to himself as "idiotic" and "impulsive" but apparently he has the kind of impulsivity that still allows for excellent willpower, proven by his not being fat. 

The author continues:

The cruelty and inaccuracy of statements like Millers can't be emphasized enough, especially considering that many fat people read his tweet and it reinforced the societal message that our weight is our worth — not just physically, but mentally, as well.

Most depressing part? This man teaches a postgraduate level Human Emotions course. 

So, I am too much wanting to crush him by sitting on him right now to fully articulate what I want to say. However, a few things and then I might return to write about this later when I'm less enraged.

This is a psychologist who teaches a class on emotion. People wonder why some of us don't like psychologists?! Sort of like how Autistics lack empathy but psychologists calling Autistics void of emotion is totally empathetic. 

The idea that people are fat because they don't have "willpower" is hurtful, wrong, ableist, classist, and all other kinds of shitty. Not to mention that "willpower" is often related to things like "impulsivity". He obviously has the latter but magically it doesn't affect the former for him. However, being "impulsive" is often something that people who are ADHD and/or Autistic (and lots of other stuff I'm sure I just know those best) often struggle with. Not in the "oh no, poor baby lets pity them" struggle in a suffer way. I just mean that many of us have compulsions and can be overly impulsive in being able to hold back. I have a lot of trouble with getting myself to do things and it could be considered lack of "willpower". Often, it is just lack of spoons for me. These are all complicated things and my brain hurts but anyway...

To sum up important things.

1) This guy is horrible and makes me sad and want to give up on the entire field of psychology 

2) Being fat does NOT mean lack of willpower

3) We REALLY need to stop using "lack of willpower" as an insult. While impulsivity and lack of willpower are not exactly the same, the whole idea of psychological fortitude and mind over body because the mind can conquer all and do anything it wants to is super harmful and really hurts many of us psychologically and our self-esteem.