Interviews, American Ambulance Costs, and Medical Reception

I always get nervous, applying for a new job. I think most people do; reaching out to a stranger and asking them to see your worth as an employee from a single resume, cover letter, and maybe an interview, is intimidating.

With my chronic illness, it can sometimes be even more intimidating because, while my illness rarely affects my work, (I’m very lucky, I know) telling a new employer about it is always a bit nerve wracking. I’m never sure if I should or not, but usually decide it would be better to be upfront. Why? Because if something did happen, they would know how to handle it and everyone would be less nervous.

My biggest risk is fainting, either due to vasovegal syncope, or exhaustion. Either way, I have a tendency to go into postural seizures (there are different kinds of seizures) which is, in my case, due to lack of oxygen to my brain from a blood pressure drop. For someone who isn’t educated about it, or doesn’t know me, it can be horribly terrifying. Everyone has heard that fainting, especially with seizures, needs an ambulance. Except, no, mine doesn’t. I, in every time it’s happened, have always needed a big glass of water, an apple (I really don’t know why that helps but it does, where other foods don’t), and a nap that lasts several hours. A thousands of dollars ambulance ride and a pointless ER stay have never been required.

In America, regardless of who calls them, the patient pays for the medical transport service and the ER bill, even if they don’t want it. If you’re unable to verbally refuse service and your medical ID doesn’t say “no ambulance”, there’s no way around footing the bill. It’s extremely frustrating, and why many epileptics risk a fatal seizure to avoid paramedics. It’s also why, even though I have a medical ID, I don’t like to go places without a friend or family member. My ID doesn’t have the ambulance ban because I don’t faint enough to risk turning down lifesaving help if another emergency arises.

Anyway, back to jobs. Wednesday, I had an interview for a position as a part-time receptionist in a post-acute care facility. I told them about my illness and, to my relief, it didn’t phase them (HOORAY!!). I got a second interview on Friday and GOT THE JOB!!

I don’t have much experience in the field but I’m very passionate about being a medical receptionist and maybe ending up as a doctor’s personal secretary some day (I need to learn more about what that job entails before I know for certain). I want to be one of the people helping to connect patients and their care team in a way that makes them feel comfortable and like they’re a priority.

As Spoonies, we know how big a difference it can make when your receptionist is knowledgeable and helpful vs. when they’re not. One recent experience I’ve had was of calling into a facility, asking for a specific specialty department for an office visit, and instead being connected to a procedure office with a similar sounding (but very different) name. Not only did it slow me down, it slowed down the procedure scheduler, and if she hadn’t caught it I would’ve been extremely angry to find I’d scheduled a procedure, and not an office visit, and would have to start the scheduling process all over again.

I want to be that receptionist who makes a patient or their family say “Wow, that was quick!”, “This was so much easier than I thought”, or “This facility cares about us” because so many times I’ve spoken to someone who wasn’t certain what I was asking, which department I needed, or what health condition I was talking about (or its subsequent urgency) and it made me feel like I was just an annoying voice on the phone instead of a human looking for medical care. I’m educated in a lot of kinds of conditions and since my mom is a nurse I’ve learned a lot about levels of urgency. This can be helpful when relaying to a nurse or doc in a message the urgency of a patient’s call. Attention to detail can help a patient feel welcome and like they matter to their care team.

Receptionists are the first person you interact with in a hospital or care facility, and they have the ability to make your subsequent interactions just a little bit easier. I’m so excited to start, so that hopefully I can make the patients more comfortable and help their families to know they’re a priority and being cared for properly. I hope this step into this field leads to even more opportunities to help build communication between patients and facilities. I think I’m going to really enjoy the job and am looking forward to starting.

Time, Energy, and Changing Plans

Sometimes I forget that I have chronic illnesses. I’m incredibly lucky to be able to say that, but it can become a problem.

When I’ve put in the work, and planning, and gotten a good day (or few days if I’m lucky) with no health problems…. eating what I want without enzymes, doing what I want and not feeling tired, no dizziness or extreme fatigue, no stomach pains, no muscle or joint pain, no episodes of extreme hypersensitivity…. I forget. Being sick is my normal, so when it doesn’t happen my brain gets excited and forgets so that I can plan all of the wonderful things I want to do.

So I call/text friends and family and make plans. I offer to work extra days at my job; which is a highly physical job and fast paced so it takes a lot out of me while also keeping me healthy. I basically over-book myself. That’s what happened this past week.

Getting my YouTube channel started, making plans with friends, cleaning the apartment completely, all while it was a difficult week at work because the steam in the building was shut down and I work running a giant industrial washer sanitizing supplies like carts etc… proved to be too much.

The steam shut down took all of my extra spoons because I was working in freezing conditions and constantly covered in water or at least had soaked socks and shoes. Along with that, I misjudged the time needed to do some things and lost sleep.

Postponing and then, for another reason, having to reschedule plans with a friend was one consequence. I got lucky and another friend postponed plans which gave me time to rest. Even so, by the time I got to Saturday, a day to visit museums in Cleveland with my dad, I was feeling the week. It was a great day, I saw a lot, but not as much as I wanted. I had to head home early because my body was just done.

Luckily I have an understanding father who didn’t mind making plans to come back another time.

Something a lot of people respond to Spoonies postponing, canceling, or cutting short plans with is anger, or disappointment, or even questioning whether we really want to be there. It’s frustrating and can really make a person want to never make plans with anyone again just to avoid it.

The solution I’ve come up with is to just not give a damn. If I have to do something for my health, and I’ve been honest and upfront with my friend, family member, or boss about my inability to be there, then I have done what I can. There’s no sense in beating myself up when I’ve done nothing wrong.

As Spoonies it’s our job to advocate for ourselves because many times no one else will. It’s difficult, of course, because advocating takes energy. Sometimes the spoons to explain in detail that you don’t dislike a person, you’re just genuinely exhausted, just aren’t there. But here’s the cool thing: it’s a great way to find out who’s worth having in your life and who isn’t.

If someone doesn’t understand your needs, or isn’t compassionate towards you, then maybe they’re not someone who needs to be in your life. If you can’t cut them out for whatever reason then remember that you haven’t done anything wrong. Don’t apologize for doing what you need to be healthy. Apologize for any inconvenience, apologize for changing their plans or schedule, but don’t apologize or feel bad for making healthy choices.

We cannot expect, in a world full of people with no health problems, especially in a country that has a culture of “fix the symptom, take pills, postpone the bad feelings” instead of promoting true overall heath with lifestyle changes, that everyone is going to understand that you’re not jerking them around. That you genuinely need time off to sleep, even if it feels like all you do is sleep or sit.

No one can tell you what you need. You’re the only one living in your body and the only one who’s stuck with it for your whole life. You’re the only one who gets to make decisions about it.

Side note: If you are in a situation where you feel like someone has taken away your choices about your own body, please seek help. Hospitals are equipped with staff who are trained to handle that kind of thing. When they ask if you feel safe in the home or even if they don’t ask, in America it is a patient’s right to request a private meeting, without a family member present and that is a good time to say something. Police also can help and have access to other longterm resources.

Humanity, Not Machinery.

As a college student, I’m faced, every day, with the pressure to be perfect. I’ve talked about this before. As a person with chronic illness, I am simultaneously told by society (particularly American society) that I need to be the same as someone without an illness to overcome, and by medical personnel and other Spoonies that I need to rest and realize that I am human.

Being human, however, isn’t desired. Our society wants machines: be perfect, feel only what we say to feel, push forward.

Maybe that’s what our country lacks. We’re expecting machine-like qualities from humans. Machines are cold, unfeeling, and can easily be used to harm. If you hit someone with a car, the car doesn’t feel bad, the human does. If you fail to follow safety regulations and someone is hurt by a machine, the machine feels nothing, the human feels regret and guilt. If you shoot someone with a gun, the gun doesn’t know the difference, but the human shooting it knows they’re hurting someone else.

We are not machines. We are humans. When you try to block out humanity for perfection you lose the entire beauty of humanity. It’s beautiful because it’s imperfect. It’s beautiful because in spite of its imperfections it creates art, helps others, solves mathematical theorems….. humanity is not perfect. Humanity is messy.

Humanity is feeling a million conflicting things at once. Humanity is feeling apathy towards one person and loving another. Humanity is working painstakingly on a project, only to destroy it later. Humanity is crying over rejection while simultaneously checking out someone attractive. Humanity is doing your best and still failing. Humanity is getting a degree and then getting a job in a different field. Humanity is both hating and loving someone at the same time. Humanity is wanting to be alone but also not wanting to be. Humanity is wanting to sleep but not being able to. Humanity is uncertain. Humanity is calmness. Humanity is anger. Humanity is sheer panic. Humanity is knowing everything will work out just fine. Humanity is the acceptance of imperfection and the acceptance of our individuality.

What happens if you tell a young man, that his humanity is flawed? If you tell him every day that his feelings (except anger, you know… for sports) make him weak. If you tell him that he’s not allowed to fail in any way, that he has to have friends, enjoy only certain things, get all the girls, dislike only certain things, be anything other than human. What happens when that same boy is so privileged in our society that he usually gets what he wants either through his own privilege or his parent’s? What happens when that same boy comes across a moment in his life where his imperfections show through and he starts to feel something other than anger, like hurt?

Well, he fixes it the way he’s been told to. He stops, and erases his humanity. He kills the thing that causes him to feel empathy, towards himself and towards others. He kills his heart. He kills himself internally. Then he steps forward, weapon in hand, to show the world how well he did at killing his own humanity…

… by killing every classmate and teacher he can. By killing every theater-goer. By killing every cheering concert fan. By killing someone’s baby, someone’s best friend, someone’s uncle, brother, sister, mother, surgeon, teacher, crossing guard… by killing someone’s everything.

We have completely failed young kids, if we enact gun laws but fail to fix the systemic problem as well. Humanity is knowing there’s a short term solution and a long term (this also goes for systemic racial oppression). We cannot change the systemic destruction of an individual’s humanity in one night. But, we can put protections in place to make it harder for a young man, who has everything to prove and nothing to lose, to get ahold of a gun. Then, we can focus on the aspect that includes mental illness.

As Spoonies, we know well what it’s like to face the realities of humanity. Many of us also know what it’s like to face those realities with mental illness. However, mental illness is never an excuse to kill. The men who have stood up and decided that their pride, their pain, their lives, were more important than the lives of others, deserve to be punished for it. But as a society we also need to stop this idiotic bickering over which problem is really to blame.

Humanity is full of multiple problems acting in tandem. It’s looking at a situation like this and realizing it’s a gun problem AND a mental health problem. It’s a problem at home AND a problem with society as a whole. It’s a problem with failure to report AND with failure to realize that reporting isn’t as simple as the president makes it sound.

Humanity works in shades of greys. It rarely looks clean cut. It’s messy and difficult and filled with regret and pain but also of beauty. It’s filled with bitter arguments with cruel words, and then tears of remorse and embraces of forgiveness. It’s filled with acceptance of other’s imperfections even if they don’t accept your own. It’s filled with groaning because you have to wake up for work/school, while also marveling at the beauty of your sleeping child, the sunrise, your cute pet, or significant other. It’s waking up realizing, and possibly feeling disgust at, the fact that your loved one has shit the bed because of their illness, but lovingly helping them anyway. It’s long nights in hospital rooms, with occasional small moments of joy at a new visitor or a small amount of precious time gained. It’s dying a little inside every day watching a patient suffer, while you step forward to make their lives a bit easier instead of running away from that pain. It’s seeing the anxiety in the eyes of your students, and postponing an exam, or letting class out early. It’s taking the bad with the good and doing your best.

Humanity is all we have. Humanity gives us compassion. It gives us love, which can both create the highest euphoria and the greatest pain. If we could stop, for one moment and embrace humanity instead of trying to shut it out….maybe our world wouldn’t be so cold. It would still have pain, there’s no erasing that. But, it would be less cold and grey metal, and more warmth and color. It would be beautiful and exciting instead of dismal and soul crushing. Accepting our humanity lets us accept our failures with the ability to stand up and try again instead of giving up with “I’m no good at this”.

I know that my efforts to embrace my humanity will never be perfect. That’s the point. I will do my best to face the pain in my world. I will do my best to look at other’s pain and show them I care instead of turning away because it makes me uncomfortable. I will do my best to always have empathy. I will do my best. That’s all we can do.

Embrace humanity and stop expecting perfection from imperfect humans. We are not machines.