To avoid a lengthy summary of my situation please refer to this post
Some time in February I went to visit the Neurologist an experience I wrote about in the above post. I expressed very little about my experience with Dr. S as I was, at the time, extremely emotional. When I went into the meeting I was under the impression that I was meeting with my new Neurologist. I was excited and hopeful that I was going to get answers and treatment options, something Dr G had not provided. I had no idea that I was stepping into an ambush but that is exactly what it was an ambush.
Dr. S was extremely condescending and accusatory. When I explained the mix up to her in detail and with the collaboration of my husband she flat out told me that I have memory and mental health issues and thus I cannot expect anyone to trust my version of the story. She also indicated that I should not trust my own experience given my issues. I walked out of that appointment in tears. I cried for days afterwards. Sam wanted to report Dr. G for gross incompetence but I told him without written proof we don’t have a case. I am a terrible record keeper and tend to delete and dispose without much consideration so I figured even if we did scour our records the likelihood of finding something to corroborate our side of the story was unlikely. I wanted to move forward with treatment for PNES and put everything behind me. The experience was horrible and it severely damaged my trust in the health care system. Worse than that the experience has caused me to second guess myself to an unhealthy and debilitating degree.
I have been doing extensive spring cleaning over the last few weeks and today I decided to tackle some of our paperwork a task I have been dreading for years! Today I found proof a certified letter from Dr. R stating that I have Epilepsy. I can’t tell you how much it means to me. Why is it so important? Because it validates and corroborates what I’ve been telling Dr. G all along. Dr. R told me on numerous occasions that I had Epilepsy but Dr. G and Dr. S insisted so much that I was lying that I had started to believe I’d brainwashed myself and all my friends and family besides. I needed to see written proof. No I don’t plan to pursue legal action because I want nothing at all to do with any of the doctors involved. No I don’t plan to find a new Neurologist for treatment of Epilepsy I am still proceeding with this being psychological in origin. I doubt the competence of every doctor involved but the facts remain that medication was not effective so I have no choice but to take an alternate route.
I received an unsettling letter in the mail recently asking why I wanted to discontinue counseling services. I emailed my therapist promptly telling her I had no such intentions. I asked her why she thought I wanted to discontinue and it appears that when Dr. S discontinued my services that she attempted to discontinue more than just my Neurology services. Am I pissed off? You bet but I have a feeling if I attempt to contact Dr. G or Dr. S in any form they would just make a mess of everything. I do wonder if I need to find a new therapist as this one has been in contact with Dr. S and Dr. G and has already been confused. I fear I might not be able to straiten the situation out properly and establish a trusting relationship.
Now for some advice
Save everything from your doctor
Ask for copies of all your tests and records and keep them
Record conversations/appointments especially if your are suffering from any memory or mental health issues because they will dispute everything you say
Generally when meeting a new doctor I prepare a mental list of questions and concerns for discussion. I rehearse the list countless times but when faced with the actual appointment I forget in large part what it was I intended to say. This time I thought to hell with it I am just going to write a list of instructions for myself. That’s right actual instructions. I tried to keep it brief 1/2 a page or so. My appointment today has left me in a state of turmoil. I was diagnosed with Epilepsy by Dr. R in the local hospital. Dr. R seemed certain of my diagnosis. Sam was present during all my appointments and he was under the same impression. I was transferred (or so I was informed) to a specialist in another hospital Dr. G so I could be evaluated for surgery. I even underwent the week long surveillance in hospital. Dr. G was not forthcoming with information on my condition. Sam also attended my meetings, we both asked questions and very little was ever revealed. During my week long stay I had 2 seizures the nurses monitoring me informed me that the seizures read on the EEG but my doctor later told me that the EEG had not picked up any unusual brain activity. She also discredited the previous EEG analysis of Dr. R (he had told me that there was activity as had the nurse administering the test). I asked her point blank could I have something other than Epilepsy and bizarrely she said no there isn’t any other explanation. When I told her I wanted to seek psychological treatment for Depression she advised strongly against it.
I requested a change of doctors in part because of communication difficulties. I just met with my new Neurologist will call her Dr. S and lo and behold she tells me I have PNES (Psychosomatic Nonepileptic Seizures) that could be the result of a Dissociative Disorder. Dr. G and Dr. S work together and I get the impression that they are good friends. Dr. S has access to all of Dr. G’s clinical findings. Not once did Dr. G ever tell me I had PNES. Sam accompanied me to the meetings to act as a translator and not once did he ever hear her say any such thing either. I am pretty sure we wouldn’t forget a thing like my diagnosis, at least he wouldn’t forget it. Now I am told that I need to go to a psychologist for treatment. Why on earth did Dr. G advise so strongly against it in the first place? If I had PNES and she knew that to be the case why didn’t she want me to receive treatment? I still receive notices every time I have a doctor’s appointment that I am supposed to be keeping an Epilepsy journal, I should know because I received a doctor’s appointment today reminding me to keep my journal. Why when I went to the emergency room did they mention Epilepsy when I apparently have no such diagnosis? It is all a little perplexing to say the least. I could have started treatment for PNES years ago and would have done so if only they’d clarified my diagnosis. Encase you are wondering/confused it was not Dr. S who rediagnosed me she was just reporting Dr. G’s diagnosis. Needless to say Dr. S did not believe me when I told her that Dr. G had never informed me. Had it just been me visiting Dr. G I could actually accept that I might have misunderstood because of the language barrier. I could even have accepted that I forgot because god knows my memory is horrific but there is just no way Sam would have missed it. Dr. G not only didn’t inform me of my diagnosis she also left me completely stranded. When I went to the psychologist I told them I had Epilepsy (it must also be in my records incorrectly) and so they didn’t consider Dissociation at all because as far as they were concerned my disassociation was explained by the Epilepsy. No telling what I might have gotten diagnosed with had I underwent an evaluation! God knows I have already been given a shit load of dangerous drugs.
As for how I feel about the diagnosis? Dr. S says that PNES seizures can look nearly identical to Epileptic seizures and you can’t always tell the difference without an EEG. If that’s the case then it is a plausible explanation. I feel utterly humiliated. I have told my friends and family that I have Epilepsy. I joined an online support forum. I identified with the disorder and it explained so much of what I was experiencing. There is an element of disbelief still but I will get past it and work with this new diagnosis. I am sure I will understand/accept more after I do some research. I am excited that I have treatment options whereas before medication wasn’t working. She told me over and over that PNES doesn’t mean I have fake seizures and that I don’t have any conscious control over my seizures just as I didn’t when I thought had Epilepsy. Of course I understand it intellectually but emotionally it will take a while. I am also embarrassed that I didn’t figure it out by myself (well I actually did consider that I might have some type of Dissociative Disorder). The thought that I might, with treatment, be able to learn again is just outstanding. I remember in high school during exam day I aced all the tests, top scores but I couldn’t remember having even taken the exams. The thought that just may be I could have that brain, that I might have that data stored in my brain, data that I might be able to recover is amazing. Even if I can’t recover lost/misplaced data, if I could learn again, make memories again that would be a dream come true. In the course of writing this I have already become more positive. Treatments going to be a bitch though I imagine I am going to have to poke around at all the mutilated ouchie bits. I am also a little pissed at Dr. G and Dr. R whom I actually did trust. While I am glad Dr. G did a lot of testing what the hell was she thinking not telling me about my diagnosis and advising against the only treatment that might work? I just have no idea.
Karol Bak Malarstwo
The last few nights I’ve slept very deeply. I rise but the sense that I am on the verge of falling asleep remains with me throughout the day, like a ponderous fog concealing a nuclear body. On the nights where I struggle to fall asleep I wake up feeling agitated and wired. Now I just feel inhuman. Words are not forthcoming, my muse has an intense aversion to lethargy. I am dissatisfied with my poems on an anatomical level, I erase them before they’ve formed a single covalent bond.
On the 24th I am scheduled to meet my new Neurologist and I’ve gone from excitement to utter despair/disillusionment. As open-minded as I try to be in regards to individuals I find that I mistrust the government and all of its various organizations to a degree which suggests that I harbor within me a certain madness. Generally I find nurses easier to talk to, they are more human/humane in my experience. I studied Nutrition at University and we had a number of classes dedicated to navigating doctor’s treacherous egos. Unfortunately I am always at odds with authority. I am not engaged in any criminal organizations or activities but my attitude remains acutely suspicious/defensive. I have to prepare a list of topics for discussion otherwise my nerves will upend my purpose.
Here is my preliminary list
- The Ketogenic Diet
- Mystery rash (I am not sure how long I have had it but at least since high school when it was severe it looks like a birth mark but it disappears sometimes, I have tried creams and they work for a time but it comes back). You might be wondering why on earth I’d mention this to my Neurologist but based on some research Sam did it could be related to my seizures the Ketogenic Diet might work to treat it as well.
- Disability, advocacy, vocational rehabilitation, local Epilepsy groups
- Headaches/excessive auras/vertigo
- Topographic amnesia/severe memory problems/memory specialist
- Poor quality sleep/falling asleep inappropriately/mental fog
I have had to redefine my idea of success or I should say I NEED to redefine it. When I was a teenager it never occurred to me that I wouldn’t work. I had no idea what I would do but I had every intention of doing something. I applied to one college because again it never occurred to me that I wouldn’t go to college and weirdly I decided that I would go to that particular college. I had decent grades if you completely exclude all things mathematical, zero extra curriculars (school took a lot of effort with the tutoring I required), and pretty damn good ACT scores (yay for the zone because I remember being completely surprised to find I’d taken the test at all). It wasn’t a matter of arrogance though I just really wanted to go to that school.
My first go at college life was a disaster. I went to the wrong classes constantly, I forgot to eat, I lost my wallet twice with all my identification, and my laundry is probably still in the basement. That was the first month. Then I ran away to Sweden because I thought I have a chance at love here, the kind of love that lasts forever so I went for it. When Sam and I came back to the States we first had to live with my mom because he wasn’t legal. We attended the community college but I had every intention of going back to my first school. When we finally arrived there I found out I had forgotten to properly unenroll so I had a 0 for my GPA. My GPA would be purged in 2 years so I had to wait it out. I went to the local community college in the meantine. Then I went back to my school, the only school in existence in my mind apparently lol
Writing saved my ass more than a few times. I have a severe math disability and I was failing Chemistry which was a requirement for my major. The teacher assigned us a paper worth 20% of our final grade we had to read a medical journal and create a summary. She didn’t expect us to be able to understand the journals fully because they were for doctors not students. Maybe it was my love of medicine (and all those extra medical classes I took for fun) but I understood my journal. My paper impressed the teacher enough that she didn’t even care about all the Fs I’d received. Everyone asks me how I graduated University with so many disabilities and the answer is simple I did the only thing I could do, I wrote.
I quickly realized that normal almost never worked for me. I had to be willing to do things in very strange ways even though it made me look rather foolish. I am devastatingly uncoordinated that I can walk at all is almost a violation of physics. Physically I had to do almost everything differently in order to learn. I had to be willing to take dance and karate and look completely spastic. I had to say I am dead last in this class and I am completely botching my recitals but fuck it I will dance. I had to listen to good little ballerinas whine about me and repeat to myself they will not take my passion. I had to go to class with my unflattering leotards and my body dysmorphia and my pin thin classmates and say dance like no one is watching you. I had to go to class despite exclusion in PE and bullying all through school and say I have the right to dance. I took the same classes back to back sometimes just to help information sink in. I have had to work for my successes and I consider myself lucky generally speaking. Life is constantly humbling me. I always look like an idiot. I am always a student. I am probably not as much of a coward as I think I am.
Now that I am out of school and the structure is gone I find it much harder since my head it full of chaos. I keep thinking things like a clean house is a sign of success, a perfect nutritious home-cooked meal is a sign of success, a full-time job is success, a perfect body is success now that I am not in school I have to figure out what success actually means for me. The me who doesn’t have a job, who can’t use the stove on bad seizure days, the me who has a messy house, and the me who has a healthy but imperfect body. What can I do? I can’t wait for therapy. I can’t just wait for life to begin once I am all better. I can’t wait for a cure because miracles don’t work like that. Sam suggests that I make tutorials. He believes we retain information better if we teach. So if you guys have tutorial requests that please god have nothing to do with math let me know. I say that but actually I started studying math because I thought it I studied something really really hard it might get my slow ass brain moving again. So far it hasn’t exactly worked lol I have a degree in Nutrition btw.
Today I saw a psychiatrist and it was for medication evaluation apparently. He read my history and suspects I might have PTSD on top of the Depression, ADD, Epilepsy and all the known stuff. My history alone seemed to be reason enough to have developed it. I don’t know if I have it or not but I can’t discredit the possibility. I do have the occasional nightmare and indeed any dream in which my father is present is a nightmare but as far as nightmares go my frequency is actually average. I do have trouble falling asleep which could have to do with years of lying awake vigilant to avoid being molested. I don’t feel panicked while I am lying awake I mostly just have thoughts mulling about, all types of thoughts, but not specifically bad thoughts. I do cry hysterically/hyperventilate whenever anyone attempts to massage me, that is clearly a trigger. The result warped posture and a lot of back and neck pain. Hell I probably DO have it or at least I have unresolved issues. I don’t want to think my past is still hanging me up though. I want to get over it and move on.
Anyways the fact that I have Epilepsy (which does have psychiatric components) is making it very hard for my therapy team to separate my issues. This doctor understood significantly more about absence seizures, which is a nice change of pace. Generally I have to describe Epilepsy before I can move forward with any kind of discussion. Next up I get to see a Psychologist so I can be evaluated for PTSD or whatever else. Good luck to them! It’s not easy even I can’t work it out. The more I learn about auras the more I see how they can mimic all sorts of conditions, they can totally alter your perception. Epilepsy can cause you to hear voices and even hallucinate. It is associated with the Schizophreniform disorders because there is so much cross-over. As I have seizures and auras everyday it is very hard to know what I would look like if I could remove Epilepsy from the equation. How healthy am I underneath? I have no idea actually. I try to think of myself when I was younger and had less seizures but then I was being abused so.
As for the Disability obviously I am not eligible since I have never had a job in Sweden. However, I can go to the Social Commune (?) tell them about my financial situation and my disabilities and they may assist me but unlike Disability there is more of the assumption of permanent impairment and thus no effort toward rehabilitation. As medication does not work and I am not presently eligible for surgery (too much of my brain is involved) I may be permanently impaired I have no idea. I will work with therapy to try and rehabilitate and if I achieve a state that would allow me to gain employment I will do so, if not I will work my ass off to be a writer. I really want to see a memory specialist and a sleep specialist. I want to hit everything because I want to function to the best of my ability. I want to get the most I can out of life. Right now I am essentially a Zombie hyped up on amphetamines.
Genius and torment. All humans suffer of course but how many believe that the artist must suffer above and beyond to achieve a requisite depth? Why should pain be the superior muse? I have been thinking about this a lot lately. I lack emotional depth because I haven’t allowed much space for joy. Don’t get me wrong I have allowed space for gratitude. I am severely depressed but I still have my sense of wonder (possibly because I experience so much as new/mysterious). I cry when something is beautiful, I even laugh unabashedly. I have emotions.
I have a long way to go with self-acceptance though. I feel so completely unforgivably worthless. Now this is the part I can’t explain so bare with me. Sam had a job evaluation recently, all positive. His co-workers say he works like 6 people and he really does the man is an entire army. He still sees himself as worthless. He never feels good enough. How much more could one person do? Would he achieve more without the baggage? Would he enjoy himself more? I have trouble understanding what self-acceptance means. What precisely should I be accepting? What if I am doing something harmful? Should I not to try to change? Sam can’t explain it to me because he has the same issue. I can see the positive version of some of my flaws but then some traits I just want to be rid of entirely. I am sure those undesirable aspects contain lessons even if I can’t riddle them out.
Is it okay to get on Disability? Is that a cop out? Or is it the responsible thing to do while I work on my rehabilitation? For me the biggest thing missing is trust in myself but is it irresponsible to trust myself when my brain is the problem? This is where all my confusion comes from, this is where I get completely stupid. This is where intellect isn’t convincing enough to circumvent emotion. I have trouble seeing what has to change, what has to be accommodated, and what is actually keeping me as an individual together.
Increasingly I find myself getting into fights with cashiers because I can’t read the monitor even though I can physically see it, the numbers are just incomprehensible. Isadora spoke to me the last time I was checking out and the distraction caused me to just toss my money into the air. Sam likes to show me funny pictures online that I don’t get the jokes because I take them too literally is normal and doesn’t worry me in the slightest, the fact that I can’t identify the picture is what has me troubled (I am not talking about illusion pictures but normal photographs). Sam will show me a man in a parachute I will see two pumas in a cocktail bar (real example). Over and over again I find myself staring at images perplexed. Yes I have been to the eye doctor multiple times now and it doesn’t seem to be my eyes.
My confusion is getting worse.
Yesterday (or the day before by the time you read this) when I was looking for today’s therapy appointment. I found a previous appointment notice from Juli 2013. I had called the psychologist a few days previous to cancel that appointment (yes the one that was a year old). They told me I wasn’t scheduled for an appointment, they had no idea what I was talking about in fact. I became belligerent again. Why the hell can’t they keep track of my appointments? I was so angry. They made me another appointment assuming that’s what I wanted. The thing is when I picked up the old appointment I didn’t immediately think oh man I tried to cancel a year old appointment I thought why on earth did I cancel an appointment that wasn’t until July. I showed Sam and he cleared up my misunderstanding. That’s not the end of this story. I told Sam he had to take Isadora to school so I could go to my appointment today. He made arrangements but when I checked the appointment again before bed I realized I had made another reading error. Ironically when I got to the doctor’s office after ½ hour of jogging through the city completely lost and dazed I found out that they had sent me the wrong appointment time to start! They sent me home with another appointment I got lost on the way home as well.
All I can say is that I have had this weird tension in my head not a headache exactly. Just tightness. I find this tightness to be worse on the left side. In fact most of time my head feels great on the right side though when I look to the right I get very dizzy. Which doesn’t really sound abnormal in the slightest it sounds like stress. Sam says it is postural, muscular tension but I am not sure if muscular tension causes you to see an orange as a lady bug lamp. I notice I am not catching what people say either I have had to say huh so much no one wants to talk to me =( I almost threw up on the tram today because of a strong odor that no one else seemed to notice (I have no idea if they could smell it or not because they didn’t do anything revealing). My senses are off and I am having trouble sleeping. Whenever I do sleep my dreams are vivid, nonsensical, and fast-paced. My pupils haven’t indicated heavy seizure activity, stroke or anything else but I am losing a lot of time. Hours just vanish, days just poof, weeks, months dissolving. I guess I am really really tired. PS My posture sucks (according to Sam most of my problems including Epilepsy have to do with bad posture). It doesn’t matter what health concern I come to him with he’s always checking my back for clues. In his defense I do believe a lot of problems are caused by bad posture (most likely the tension in my head) and poor circulation but it cracks me up sometimes because he says it for everything. Hallucinations? Stand up straight woman for fuck’s sake.
Had I been able to fulfill Day 19’s assignment today’s challenge would’ve been pretty dull. As usual I am being very liberal in my interpretation of the prompt. On Day 19 I posted a TED talk that Sam had shared with me several days before. On Day 20th you learned that I am going through a very difficult time right now. Being rejected for a loan was the death of a dream. Our future now is uncertain. Rental apartments are expensive and the price of rentals is projected to escalate substantially. Size-wise we are looking at something very similar to our current apartment only we won’t have that bit of extra storage we have living with relatives. I am depressed, both of us are. At the moment everything feels so hopeless and I just kept bursting into tears knowing that I am the one dragging my family down.
On a positive note I did manage to get a change of Neurologists. I have not met with the new doctor yet so I cannot say anything other than I am grateful to have a fresh start. In 2 weeks I am supposed to receive an appointment hopefully it will be soon and I will have the chance to ask about Disability or advocacy/rehabilitative groups that can help me obtain work. I have an appointment in February with a psychologist and I will bring up this topic up for their consideration as well. I suppose my book could be a slamming success, don’t I wish! My book is giving meaning to my life just the same. I am pursuing a dream despite a series of crushing defeats. Aside from my immense love for my family it may be all that is keeping alive. When I am working on my book it is the only time I am not crying. It is the only time I feel a sense of pride and excitement.
Watching this video apart from making me cry really inspired me. Her optimism and willingness to accept personal responsibility was a real revelation for me. I see now where I may have went wrong with my former Neurologist. I hope to do things differently with the new doctor and I hope that in doing things differently something will give.
Art By: Eloise Fornieless
My injury has left me feeling more despondent than usual. Faced with both Epilepsy and mental illness I already face a significant amount of obstacles and limitations. I find joy in the contributions I am able to make for my family, though they number far fewer than I would like. I can’t but feel that Sam and Isadora deserve more. Though it is selfish, I want to be the one to provide them with “more” only I never seem competent or well enough to do so. I am not sure good intentions are enough. I am not sure my heart is enough. No matter how indefatigable their love I will always worry that one day I will lose them. They have every reason and every right to leave. When will “I” cease being synonymous with burden?
Right now Sam and I are looking at houses and I keep thinking if only I could drive we’d have more options. If only I had a job we’d have less financial constraints. We’ve not found anything yet and our prospects are very limited. I am the reason for those limitations. Sam has chronic pain and severe Depression and he’s achieved so much in life. Aside from graduating from college I feel I’ve achieved very little. I hope to God the mold that made me was destroyed because it failed to produce a viable human being.
I haven’t mastered optimism yet, I still feel like this more often than not and what a useless mood it is! On another note I wonder if I am not falling asleep during my longer fade outs such as when I am mindlessly vacuuming with my eyes closed. Many times I’ve been startled by someone asking me if I am asleep. I am not sure how I don’t fall over if I am asleep but I had a cousin who did nod off all the time while standing up. I fell asleep once in a handstand! I did end up with some serious bruises and nearly gave myself a heart attack besides. I’ve started to wonder if I don’t have some problem with sleep? When I go to the therapist fuck all else I am going to inquire about sleep. A lack of sleep leads to seizures, illness, memory issues, mental health issues (when I don’t sleep I become extremely violent toward myself) and just a general inability to focus. How on earth will I become healthy and productive without sleep? So that is what I am going to talk about even if it makes look like a crazy person.
Labor is its own reward. As a child my grandmother used to encourage me to finish my work quickly that way I’d have the rest of the day for entertainment. My work was frenzied, incarcerating, resentful. Work was an inconvenience, a detour, disconnected from living. Chores are immortal opponents, no amount of diligence or repetition can ever vanquish them. I can wash clothes today but in a few days I will have to do so again provided that I haven’t abandoned my hygiene or modesty in the meantime. Though practically and intellectually speaking I understood the necessity there was still that overwhelming sense of futility. Some days there was no reward because I never reached completion.
One summer I slaved away in an effort to earn enough money for an overseas excursion when my mom found my stash she insisted on taking it to the bank. I never saw the money again. At that point I realized that work comprises a good deal of our day to day lives. It’s not an obstacle barring us from happiness, it’s the vehicle. Even in the most mundane activities we should strive for awareness. If we exclude work and routine, as not life, we aren’t left with a lot to live for I find it quite ironic that we consider “life” being zoned out in front of the television or computer. At least that’s the bit of my day that I tend to emphasize.
Really I am probably more alive when I am working then when I am at rest. Exercise is the time I feel the most focused and awake. When I work out I challenge myself physically and psychologically. I don’t accommodate excuse or failure. I don’t work out just for the heath benefits or the aesthetics I work out because I love it. I love trying out new routines. Get a better body in 30 days? I am on it and it really has less to do with the carrot than it does with the journey. I wish I could transfer that same mentality into every aspect of my life. Aside from writing I tend to avoid mental challenges, years of struggling fruitlessly with learning disabilities and severe memory issues have diminished my curiosity.
I have, however, started to remember just how much I actually love learning. I’d gotten so caught up on holding onto the knowledge and skills I have acquired, that I’d totally given up on the treasure hunt. My memory problems are such that I can and have forgotten information which I’ve dedicated my entire life to acquiring. My mind is also quick to discard anything new or unfamiliar, a single seizure can wipe out weeks of hard work. I am literally becoming stupider by the day. I am not sure if I can stop this process but if I have to learn everything over and over again for the rest of my life anyways I might as well just have at it and enjoy the ride. I want to chase the proverbial vegetable not become it.