Posts Tagged ‘motility disorder’

Today, I was confronted by someone I am living with who was upset over me having fruit in a plastic bag out. She began to recollect everything I am doing or rather have done that differs from other people in the house. She continuously repeated in a harsh and violent tone, “You’re not special”. I began to space out as she began to become monstrous as I do not care to hear from people that have nothing unintelligible to say.

Further, I began to think about why she continued to say this to me and what message she was attempting to convey. This is when it occurred to me; though I do not perceive myself as special, I do have special needs. There is a distinct difference. For me, those difference present themselves in the following ways:

  • I need more space in kitchen cabinets because the items I need for my motility disorder take up lots of space, and are very expensive. However, if the items are bought in bulk, the price is often quite lower. So, at the moment, I have many items from bulk shipments.
  • I take more time getting ready, and have to wake up earlier.
  • connecting this to an earlier post, I often am allowed additional baggage to lug aboard a plane. I don’t feel particularly special and rather isolated when I have to spend an additional 30 minutes to one hour waiting in airport security lugging a piece of baggage that is generally quite heavy, full of liquids because I can’t walk into a convenience or grocery store whenever I’m feeling hungry to be satiated. These items are not carried in your everyday store.
  • I have to be very wary that the food I grind is pureed to be of a particular consistency so I can swallow easier. Preparing food to this standard takes at least two to three times as long as an average meal preparation.
  • I have to drink out of a very particular cup with a straw, and these cups are generally made for people aged 1-3 years old. Oh how I love carrying around a cup that is targeted to this age group. If I want to be identified, a bright green cup is sure the way to go. I hate this fact, and often don’t consume any liquids while I am in public view to ward off any chastising before it starts.
  • When I go places with friends, it isn’t uncommon for me to be left behind so they can do what they need to do in a set time frame-I walk too slowly for them. Once this occurs in a friendship, aside from a truly valid reason, I often do not consider most of these individuals friends thereafter.

Someone who is special tends to believe that others should conform to his or her own standards and often exhibits a sense of entitlement. Upon deviance from this standard, a monstrous attitude is generally displayed by the special individual. If one accepts this definition to be generally accurate, I believe I was the product of the good old defense mechanism of projection hours ago; this person’s hostility towards me is because she believes she deserves the same treatment as me. You know what? If I had the ability to generate Cerebral Palsy, an unknown motility disorder, narcolepsy, ADHD, bilateral exotropia, and a slew of other conditions upon her for one day, I’d be confounded if she didn’t request to have a few additional accommodations made for her in housing.

However, since I do not have that power (yet), and I would not knowingly cast sickness to someone else, I hereby declare that the world exudes greater understanding and empathy towards special needs, rather than look upon it as an unthinkable act, and admonishing circumstance.

If only it were that easy. I finally have a family I believe would understand what I’m going through. My host family cares about me more than my biological family can and ever will. Friends and mental health professionals have suggested I open up to them and tell them that I struggle with eating, well that I have an eating disorder. It’s not that I’m afraid they won’t get it. It’s that I know it hits too close to home for them. My host brother (who lives away from the house with his fiance and son) had a serious girlfriend a few years back who struggled with what sounds like anorexia. When my host mom began describing the situation a few months back, I felt her heartache for her son and this girl. Things didn’t work out between them, I believe because of her eating disorder.

When I began treatment this summer a few occurrences are necessary to mention. Days before entering my first treatment facility, I had an anaphylactic reaction. At the time, I didn’t panic; it was actually a nurse at the school health center who flipped out more than I did. I calmly reassured her as I swallowed allergy pills (of course that day they didn’t have Benadryl or the like).

A few days later, I was admitted inpatient for what was supposed to be a short (2-3 day stay) to make sure I was stable before heading to a residential facility for eating disorders connected with the hospital. About three days after the anaphylactic reaction and one day into treatment, the allergy resurfaced, my leg and throat swelled yet again. In my first eating disorder treatment, I was constantly utilizing liquids to meet my nutritional needs. I was given excessive amounts. If I finished any less than 100% of my meal, I was given one Ensure Plus (I’m sure if you’re reading this, you’re a pro on calorie content, and there’s no need to trigger someone even more). If I finished less than 50% of my meal, I could look forward to having to down 2 Ensure Pluses. It was certainly not a liquid calorie for solid calorie equivalent. It was unfair and I was often noted as “not-compliant” with the meals and told I’d stay longer because of this.

Insurance company wasn’t on the same page as the treatment center. I wound up remaining inpatient for 9 days which I know isn’t long but remember I was only supposed to be there 2-3 days and then transfer to a residential facility. Upon an immediate, abrupt and unexpected discharge, (thank you insurance), I went to an extended day program not connected with the facility (since insurance refused to cover residential at that point) and began my journey there. Liquid supplements occurred every so often for me.

My body seems to always have expressed itself more than I can express my emotions. Lo and behold, I developed a bizarre condition where it felt like food was getting stuck and backing up in my throat. Like any “decent” treatment facility, a group therapist prompted our group as to if anyone else has experienced such a phenomenon and if so, raise hands. Every hand in the room was raised. It was all I could do to not scream out, “this is different, I just know it”, and so I sat silently, knowing within me that it was.

After weeks of having most meals finished with a Boost or Ensure Plus (this facility does calorie for calorie exchange so that’s a relief), the directors prompted me to seek medical advice. Not knowing where to turn, I decided if the problem’s in my throat, let me go to an ENT (Ear Nose Throat) doctor.

Upon seeing the doctor, he noted inflammation in my esophagus which he could tell by bubbling forming in the back of my throat. He sent me for a liquid swallow study. After the results came back, the doctor said there didn’t appear to be anything acutely wrong, yet referred me to the gastroenterologist. I scheduled an appointment for the following week.

Things were progressing pretty well in treatment, I was bringing up traumas and feeling them a little bit emotionally. This occurred after weeks of narcoleptic fits or “seizures” after delving into something emotional (I now can attribute this to traumatic stress release and the shaking wasn’t actually a bad aspect, it was my body’s was of discharging the negative energy). One night, after progressing to a lower level of care in IOP (Intensive Outpatient), I was having a regular conversation with other clients. I had switched mainly to liquids for the rest of the meal. This was a common occurrence and o one thought much of it at this point. As I was mid-sentence, I felt something come up my throat. At first, I thought it was something that used to occur. When I was 14/15, I would often have a clump (sorry for graphics) of what appeared to be semi-solid mucous come up my throat. I attributed this to anxiety at the time. However, as the object of this night was traveling up my throat, I quickly realized this was not the same. It was almost as if someone or something was trying to force me to vomit. Let me clarify- I have never engaged in vomit behaviors. I always knew my throat was sensitive and in this disorder, I wasn’t trying to kill myself.

I quickly got up from the table to find something to spit this into. Bathrooms are locked during meals, so I found a tissue and spit the thing out. Only later did I realize that it was undigested food. I sat weeping the rest of the meal, alone (as I was always a slow eater) and by then, people had finished their meals. My dietician happened to be sitting at the same table as me that night and said I should get an appointment with the gastro earlier than a few days from then. Long story short, after many procedures (some traumatic, some not), it was found that I have Jackhammer’s Esophagus or Hypercontractile Esophagus. Essentially, peristalsis doesn’t function as expected and succinctly for me as it does others. My esophagus contracts so frequently that it doesn’t allow food to move down as needed. The radiologist performing and evaluating one of the studies said “we don’t see this pattern of swallowing in your age group, we see it in 80 year-olds”.

I don’t feel special. I am quite certain (whether wishful thinking or not) that my physical problems are mostly related to the excessive traumas I’ve endured. It’s interesting to me that I develop a motility disorder while undergoing Eating Disorder Treatment. Rather than put my thoughts and feelings into words, my body speaks for me.

I care so much about my host family and how they’d be affected and perceive my eating disorder, that I can’t bear to let them in on this. They’ve already adjusted much on my motility disorder and buying foods I can bear with. At least, they managed that for a week or two. I feel like a burden already. I don’t want to hurt people who’ve shown me the most kindness anyone has ever shown me for extended periods of time.

So, I sit here and write this post as I hear the dishes clanking and the laughter emanating upstairs.

 

Considering I’ve never been a fan of lying, I have to set some things straight on here. I’m currently studying abroad and it has been one of the best experiences of my life. I’ve dealt with some major issues, all within the first few weeks of arriving. To make this readable, I won’t include the gritty details right now. I will sum it up as such:

-I found out the day before coming here that my brother was going to have brain surgery in a few weeks.

-Right before his surgery, my biological family insisted that I see him, didn’t believe I was studying abroad and harassed me about not seeing him.

-I asked my biological father (the only person I talk to on occasion to not tell anyone that I was here as I didn’t think it would ameliorate the situation.

-Said person did in fact break his word and tell people I was studying abroad. His relaying this fact did more harm than good as I had initially suspected.

-Prior to the surgery, my grandpa became sick suddenly and died. When I asked my father if I should attend the funeral, his e-mail reply was “no need to disrupt school”.

-No one told my brother about my grandpa dying until after his surgery. My dad didn’t even make it to his own dad’s funeral.

It’s no surprise that my motility disorder only worsened throughout my time here. I fucking hate food. Every single time I eat I either become nauseated, regurgitate food, throw up (unintentionally) or have gurgling in my esophagus and stomach indicative of the spasms.

Over the break, I hope to see some therapists and doctors that I had over the summer prior to coming here. My friends already say I should be in treatment again. I know that I do not want to end up in the cycle of treatment. Plus, I’ve been offered an amazing opportunity to extend my studies here doing a neuroscience internship at a hospital. These sorts of opportunities don’t just happen upon someone in the States, they are hard to come by. When presented with the possibility that I could become sicker while here, my honest response is “so what?”.

Bluntly put, I’d rather die at least trying to get ahead in life then return to my basically nothing life in the States. I’m sick of missing out on opportunities because I’m physically or emotionally unwell. I crave having a family and the host family I have here is the closest thing I’ve experienced to a “normal” family. I just have no desire to appear sad in front of them or express my negative emotions. I judge myself, thinking that they expect me to be level-headed because of my age. After all, their two older kids are younger than me and out of the house and supporting themselves from what I know. One even has a two year old. I believe in my twisted world I must come across as stable and without issues and this is how I portray myself to most everyone.

Sometimes, I see the school psychologist and lately she’s been questioning my mood. I know she can pick up on my sadness even though I assure her repeatedly that I’m FINE. FINE = fucked up, insecure, neurotic and emotional. Yeah, I’m fine. I don’t want my experiences to be halted by psychiatric treatment. Not here, not now. I just don’t know how much longer I can keep this jig up.