I found this piece hidden deep in my journal. I wrote it about a year ago, but never had the guts to share. After re-reading, I think it's time I expose the bittersweet reality of medication therapy. Here goes...
I haven’t been anything for a few months now. Of course, it’s unrecognizable to the outsiders eye. I am even able to fool myself and convince myself otherwise. But when it’s quiet and I’m alone with my own thoughts, I am consumed by neutrality. I am neither happy, nor sad, nor angry. I am neutral. I am merely existing. My emotions are stifled. I am neither amused nor frightened by this state of mind. I feel this about 80% of the time. The question is, is this healthy for me? Many of you might be alarmed that I am even asking that question. The answer might be a sharp, “NO!” However, we must remember that I am mentally unwell. I am bipolar.
I felt emotions tremendously deep. Too deep. When I was sad, the pain was unbearable. When I was happy, I was wild-eyed and impulsive. There was no in between. I’m writing in past-tense because that is how things used to be… Until I was medicated.
For all who are already turned off or have made judgments about those last few words, I ask you to please keep reading.
Medication is not the answer for all. For some, it is absolutely necessary. I am part of that “some.” My brain actually looks differently than other, mentally healthy folks. On medication, I can function daily. I am not confined to my bed. I am not avoidant of the sunshine. I am not physically aching. I am not in fear of my own self. I remain level-headed and able to process thoughts. However, with this comes the neutrality of emotions. Although I am not in fear of myself or others, I am not fearful at all. I don’t feel the overwhelming presence of life and beauty on a sunny day, like I once did. I am not achy, because pain has become this fleeting thing. I am level-headed, because feeling an extreme is currently impossible. My attitude has much adjusted. It is stagnant. It is not amused. My memory, oh my memory… It is jello. Things have jumbled together, just like my words. My vocabulary seems to be diminished, because remembering the right word to use in a sentence, is like pulling teeth. I often explain it like so: our brains are filing cabinets. I try to open the cabinet and find what I need, but it is not accessible. Parts of my brain have flipped the lightswitch off. This frustrates me and makes me question continuation of medication therapy.
But do I want to throw away all of this dedication, work, and treatment to make myself better? Do I want to leave this life to go back to the old? Before I began medication I told myself that I’d do whatever it takes to not feel that way again. I couldn’t bear another day untreated. I couldn’t live another moment as myself - unwell. The untreated, mentally ill me was in excruciating pain. Enough so that I was ready to give up.
Surprisingly, I can still cry. When it happens, I get excited because an extreme has been reached! That is something I am proud of. When tears flow I remember that I am human and I still can feel even if it’s tremendously less than before.
I suppose that’s a good thing, right?
We all wear masks so only our eyes are visible. Each set representing their own darkness and light. Some are with their spouses, their parents, their support. Some are alone. Some are frail. Some wear oxygen. Some are wild-eyed and observant. Some are boisterous with laughter.
I want to question the intriguing, but I’m unsure if they share the same wonderment as I.
No one dare touches the magazines. We are all germophobes.
I hear deep, aggressive coughs. I hear the painful struggle to breathe. I hear the scratchy voices from life-long trachea abuse.
The mothers’ quietly comfort their children and the friends joke about anything to ease the thick, suffocating air.
We all carry sputum cups, each of us hiding them politely. We breathe into big machines that measure our lung function and then we either celebrate the outcome or sit solemnly with our negative results.
We reflect on our lives, the things we could’ve done differently, and wonder how much time we have.
When my name is called I get sad because for just a few moments I’ve felt at home with the only people who truly understand me and my body, yet we don’t even know each other's first names.
I've asked some very special people in my life to write about what it is like to have a daughter, family member, friend, girlfriend in their life, who has cystic fibrosis. I did this so people could develop a new frame of mind about loving and living with someone who has a chronic illness.
I've come across many people who view my disease as unfortunate, depressing, and ultimately feel that my existence is a burden on others. This is NOT how my life should be idealized. In fact, it's purely insulting to my loved ones and I.
The first writer to contribute a brief summary of what it has been like to have me, a CFer, in their life, is my ex-boyfriend, Eric. I asked him to write because I wanted every perspective possible. In my dating experience, I have found that it's very hard for other people to want to be with someone with a chronic illness. It's all very pathetic to me, however, I get that some folks aren't emotionally willing and able to care for someone with a disease like mine. Eric was different in that none of this was ever even a thought for him. He supported and loved me for me, not because of my disease.
Below are his own words of what it was like to be my significant other...
"I was asked to write about my experience about dating someone who was diagnosed with cystic fibrosis. To be truthful, when I met her, I had no idea that she was any way different than any other girl I have ever met. I couldn't have been more wrong but not in any way that had anything to do with her illness. She is outgoing, social, funny, spontaneous, and very pretty. She cares about her friends and she cares about herself, and she was never afraid to tell you her opinion. When we first started dating, I didn't even really know what it was to have CF and I never knew what the symptoms were. She was very upfront with me and told me what was going on. In finding out about the illness, I remember going with her to the hospital when she had to get IV treatments and getting results for PFT tests. I remember her getting very excited or very concerned based on those test results. But through every roller coaster ride at the hospital, I always knew she would be ok. I cant explain it or quantify it in any medical way, but she really was/ is full of too much fire for me to think of any other outcome. While we don't date anymore we remain very good friends. My family loves her and my friends love her and they always ask how she is doing. And the thing that makes me happy is that they are generally not asking about her health. While they know she has an illness, and certainly that is a concern, but they don't see her as ill. And I love that."
Being recently diagnosed with the mood disorder, bipolar II also known as bipolar light, I’ve come to realize the roots and reasonings of my previous behaviors and actions. Having bipolar II is much different than bipolar I. I start by establishing this because the second I mention bipolar, people often misconstrue the meaning and aren’t aware of the different types. Bipolar II consists of episodes of severe depression and mild manic symptoms. Bipolar I is when a patient has extreme manic and depressive episodes. Basically, I have the low, low’s without the super high, high’s.
It’s no secret that I’ve battled bouts of depression. I’ve experienced four major episodes. My depression is cyclical, meaning I have recurring episodes every few years. This has been the case since I was 15. Sometimes I can recall depressive episodes happening before then, back to the age of 8.
Childhood anxiety and depression is terrifying, naturally. No child should have to endure that emotional pain and disturbance. I’d have night terrors, trouble sleeping due to the sheer fear of closing my eyes, obsessive-compulsive thoughts and habits (i.e. sitting at my table counting to 100 everyday before class began in the first grade), anxious thoughts about my loved one’s safety, any emotional disturbance making me physically ill, and more. I was an 11 year old girl carrying the fears of an overly-stressed, middle-aged being, relying on verses (that I did not understand, what-so-ever) out of my Precious Moments Bible to bring me comfort.
As I grew older, my symptoms of depression started getting more severe. Dramatic weight loss, major fatigue, loss of interest in just about everything but sleeping, etc. Sometimes I'm too tired to be sad. The physical toll depression takes is just as painful as the mental and emotional parts. Sometimes it's even worse.
The anxiety takes ahold of my thoughts. They race so quickly. My brain thinks of things I don’t want it to; scary things, and it doesn’t stop. I try and distract myself with pleasant thoughts like visions of pretty flowers and lyrics to sweet songs but nothing sticks. Times like these are when I have to dig out my bible and dive right in… Of course, now I have Google to help me out with verses I still can’t quite grasp.
On top of those lovely anxious thoughts, my social anxiety can get OUT OF CONTROL. To keep my thoughts and my voice relaxed when talking to someone else, I fidget with my hands, fingers, and jewelry (hello, that’s why I wear so many rings). If I focus my anxiety onto my hands, I have more flowing, normal thoughts while conversing with others.
Then, there is my mania. Mwahaha.
Oftentimes, anxiety evokes or develops into manic episodes. My manic episodes aren't severe as stated in the first paragraph, but definitely creep up on me pretending to be “fun and spontaneous” ideas, when they’re truly impulsive, dangerous, and unhealthy behaviors. Learning the difference of the two is the fun part.
Since my diagnosis, I have been backtracking my previous decisions and evaluating from which of the two reasons they were made. So far, most of them have been classified as the oh-so-fun, impulsive, dangerous, and unhealthy manic, me. I never really knew that this mood, a.k.a mania, had a rhyme or reason. I honestly just thought that mood was part of my personality. What made me, me.
This is where it might start sounding a little confusing. You see, that manic mood is still what makes me the person that I am, but there’s a thin line to that edginess. A line that I now know is very unhealthy to cross. The medications that I have been prescribed to stabilize my moods makes me pause and really evaluate my decisions and tactics when reacting to situations. I consider actions and behaviors that will positively impact me as healthy, where as the other ones that will negatively affect me as, not so healthy.
Yes, this all may seem so easy and simple to you as the reader, but to me, none of these thought processes ever processed! It’s humorous to me now. Not so much that I look back and think that my old train of thought was a complete joke, but that I never had the tools to realize that there was actually a biological answer to the (cough, cough) problems I was having.
After becoming quite acquainted with my mood disorder, many things have been brought to my attention as far as treatment. Bipolar is nothing to cope with alone, especially since you’re already isolated in the bubble that is mental illness. I said, “you’re” because I’m assuming that if you’ve read this far you’re still intrigued and want insight to how the disorder really feels, or you have mental health matters of your own. Either way, no one’s judging here.
The National Alliance on Mental Illness states that 1 in 5 adults in the US experiences mental illness in a given year. That means that when you’re at school, work, hanging out at a bar, or in any other public place, you’re going to run into someone who has experienced mental illness. So that means we should all probably be a little kinder and warmer to others considering the facts.
People need people to survive.
Above is a diagram of all the symptoms and manifestations that occur in people with cystic fibrosis.
Personally I have experienced and developed the following:
- Vitamin A, D, E, and K deficiency
- Chronic cough
- Mild clubbing of the fingers/mild "barrel chest"
- Inguinal hernias (left and right) due to the pressure and intensity of coughing
- Gastrointestinal bleeding (recurring)
- Bronchitis & recurring lung infections
- Hemoptysis (blood in sputum) due to broken blood vessels in airways and scar tissue in lungs
- Decrease in lung function
- Insulin deficiency (hypoglycemia) due to abnormal pancreatic functioning
- Chronic fatigue
- Sweat glands producing salty sweat due to the sodium chloride correlation of CF
Some patients with CF show different symptoms with different severities. No patient is alike, therefore it is important to know each individuals case and experience with the disease.