Life’s Unexpected Absurdities

A few years ago, we had a lap simmer at the pool who wound up floating face down in the water and not moving. It was my responsibility to blow my whistle and alert everyone to the emergency and jump into the water and rescue her. I remember rolling her over onto her back and noticing how grey her face was. We pulled her out of the water and commenced to perform CPR.

I had a bitch of a time trying to open her airway enough to actually accomplish blowing air into her lungs. As my coworkers performed compressions on her chest and attached the AED pads, I struggled to lift her neck high enough and pull her head back to get some air into her lungs. I think at one point I managed to blow air into her stomach, but I am still doubtful to this day that I ever managed to get air into her lungs. We later learned that the emergency doctors at the hospital had diagnosed her as being “morbidly obese” and this was the reason for my inability to effectively administer oxygen.

Fryer was the scheduled Building Supervisor, but he was busy performing his ‘daily hot tub inspection’ in the sauna outside. He never heard my whistle. He had no idea we were in the middle of a medical crisis and needed all hands- on deck. Those of us who were working hard to try and save this woman’s life in a timely manner had to send one of the water exercise instructors outside to fetch Fryer.

Fryer later recalled what his first thoughts were when the woman we sent to get him stood in the doorway of the sauna; he almost said to her, “either get in, or close the door,” but she finally managed to tell him there was an emergency inside. According to Fryer’s recollection, he sighed and made his way into the building he was being paid to supervise. The first thing he saw was every one of his employee’s being paid to work down on the opposite end of the pool performing CPR upon a patron. Fryer finally began helping the team after the AED administered a shock, after 911 had been called, and after the pool deck was cleared of patrons. Essentially, Fryer was able to make his way over and help me try to pry open her airway in the hope of providing her with the optimal chance of survival by providing her system with oxygen. Even with his help the attempt was unsuccessful.

Fryer did participate in a round of compressions, but without wearing personal protective equipment, which can be viewed as superfluous, but anyone with experience providing healthcare in a First Responder’s role knows how much emphasis is put on the need to protect one’s self as paramount in any situation. I felt offended at the time watching Fryer, and another long-time employee, performing compressions without wearing gloves. Particularly after this other employee had pushed me aside in order to perform the compressions. I mentioned his lack of gloves, but he ignored me as all of his concentration was upon the task of performing the compressions.

We were busy wiping liquids and flecks of what were later identified as tapioca pudding from the patron’s mouth as we tried to open it wide enough to accept receiving oxygen. After all the years of feeling anxious being tested by Fryer for my skills of performing CPR, First Aid and rescue techniques, and the way he would hammer home the need to always wear gloves, I felt almost betrayed by noticing what was missing, but being ignored when I tried to point it out to my ‘superiors.’

Our patron lived. The paramedics arrived and took over and eventually escorted her to the hospital. I remember feeling embarrassed watching my boss, who loves to tout the necessity of looking “professional” to all the new lifeguards every summer, standing in his bathing suit and talking to the paramedics. My belief in the merits of professionalism has never been in accordance with Fryer’s application of the concept. A few months later the woman was back and swimming laps in the pool again, this time with a continuous glucose monitor stuck to the back of her arm. But, with all being said and done, we did our job and we did it well. Fryer included. I do, after all, believe he did everything he could to the best of his ability.

My story does not end there, though.

My story continues with the next day finding me coming home after work and curling up in my chair to take a short nap. That short nap turned into a nightmare ending with me being in the emergency room until two in the morning.

My housemate came home a few hours after I sat in the chair to find me incoherent and mumbling. My memory is of having woken up hours later than I expected freezing in my chair and not being able to get up and grab my blanket. I remember my housemate walking in the room and asking me what was wrong. All I could manage was to try and tell him that I was cold and wanted the comforter from my bed (I remember trying to lift my arm to point towards my bedroom and failing). But he couldn’t understand me. He was smart enough to call the paramedics and I sat in my chair watching the blue and red flashing lights stop outside the window. It is the only time in my life (to this point) that I have had to have the paramedics called on me.

One of the paramedics rampaged my kitchen looking for carbohydrates they could feed me to help raise my blood sugar. To this day, I have no idea why he went into the cupboard and found the one hamburger bun someone had left behind from a barbeque the summer before. I cannot understand, for the life of me, why he did not hand me one of the three different kinds of granola bars I keep in the cupboard, or any of the dried fruit sitting next to the granola bars. Instead, the paramedic took the hamburger bun, an egg and a slice of cheese from the fridge, and then took the time to cook me a sandwich!

By this time, I had contacted a friend from work to give me a ride to the ER, and to alert someone I would not be going into work the next day. When she walked in through my kitchen door and saw the paramedic cooking an egg on my stove, she immediately recognized him and asked, “Hey! Want some bacon with that?”

That morning (yes, the morning of this exact same day), my friend had decided to cook some bacon for breakfast in her pajamas. Unfortunately, the smoke from her breakfast caused the smoke alarm to go off. Normally this is not a problem, and it wouldn’t have been this day also, but my friend failed to hear her cell phone ring when the alarm company called to check if the alarm was authentic or not. When the alarm company couldn’t reach my friend, they started calling her list of emergency contacts. The first two contacts didn’t answer for one reason or another. By the time the third person on the list was contacted, the alarm company had also dispatched the fire department.

My friend, having finished cooking the bacon and clearing most of the smoke out of her house, finally heard her phone ring. The third person on her emergency contact list had left work and was rushing to my friend’s home and calling with the desperate hope that it was all somehow a horrible mistake. Luckily the third contact was able to turn around and head back to work, but, as my friend laughed on the phone while standing in her smoky kitchen in her pajamas, she realized the sirens she heard in the distance coming closer were coming for her.

She managed to throw on her robe and meet the first responders at her front door. After she apologized for causing such a fuss by taking the time to cook bacon for breakfast, my friend offered the firemen some of her bacon. She went back inside to her kitchen only to confront both of her cats on the counter eating the last of the bacon.

We sat in my living room laughing about the absurdity of life as we all waited for my blood sugars to rise and stabilize. My friend finally took me to the hospital and stayed with me until the doctor cleared me. A simple hypoglycemic event such as mine (even though anything so serious should not be hallmarked as simple) should not have kept me in the ER for more than a couple of hours, but this trip was accompanied by an irregular heart rhythm that needed to be monitored. All I really remember from the night was having my friend continuously bring me new blankets from the dryer down the hall because I was so incredibly fricking cold!

Diabetes affects me in very unpredictable ways. It is only recently I have even begun to comprehend how strongly stress can affect my ability to manage my disease. The stress of saving a woman’s life the day before was enough to send me into a cascade event culminating in the need for paramedics to intervene. I am becoming better at learning how to manage my diabetes and maintain my health as much as possible, despite the stressful curve balls life enjoys hurling at me. It is a relief to know that a monumental element within my life, which used to contribute to my increased levels of stress, has finally been eradicated. I am quite positive that walking away from the pool has increased my expected lifespan by a couple of years. I am extremely grateful to be in a position where my health and well-being are the driving force behind my days, from the moment I wake up to the moment I close my eyes in exhaustion.

Discrimination is a ‘Bitch’

Every three months I see my doctor concerning my diabetes. During my visits we talk about any questions or concerns I may have, we try to analyze the data downloaded from my pump, we determine new strategies to be incorporated in my management techniques, and we end up chatting about my job at the pool. The other morning, I told her I quit my job and her face lit up with pleasure. Most of our meeting was spent talking about the issue of discrimination and how it tends to infiltrate our daily experiences without challenge.  Over the past year, my doctor and I have had many conversations regarding my attempts to inform Fryer and the Park District about my emotional and behavioral disability, while still having to mitigate the effects of simply being female and labeled as a ‘bitch.’

But first I want to share my good news — my A1c was 7.6, which is amazing!

Back in May, my A1c was 7.6, but that was after a hard year of dragging it down from a 9.2, and my intention was to bring it down even lower. By August I had succeeded in dropping to a 7.2, and I was anticipating a 6.8 today because of the incredibly stable glucose levels I have sustained for the past three months. My first reaction to seeing the 7.6 was to groan and feel slightly dejected, but I have learned in the past ten years to not take a number seriously. After all, it is only a number. A basic lesson I have cultivated while living my diabetic experience is that numbers are capricious, with the only constant being that the good numbers will come, and then go with no explanation.

After analyzing the data retrieved from my pump, listing all the blood sugar levels that have been entered for the past month, my doctor was able to determine that my debilitating early morning and afternoon lows seem to have finally disappeared. The rest of my numbers were in a steady range between 100-200. My A1c had increased because I was actually healthier than I had been when my A1c was lower three months ago! Tricky, tricky Diabetes!

When I explained what had happened at the pool leading to my decision to walk out, and how my diabetes had been a core factor in the incident, my doctor and I discussed the ways in which women are expected to behave in public. We talked about how easy it is for men to be disagreeable, unpleasant, or even straight up rude, and not be held accountable. Yet, as women, we are immediately labeled as ‘bitchy,’ ‘up-tight,’ or ‘unreasonable’ simply for behaving in a manner analogous to men. The ability, and willingness, to proscribe different values upon the exact same behavioral traits being expressed depending upon the sexual organs of a person’s physical body is GENDER DISCRIMINATION.

I suffered gender discrimination at the pool. Before this last summer started, I wrote a letter to Fryer explaining one of my ‘reasonable requests’ under the Americans with Disabilities Act was to begin my shifts at the exact same time every morning. This one action has been huge in helping me to manage my glucose levels and is directly relevant to my lower A1c. I informed Fryer of the letter in advance, and that I would be including a letter from my doctor as confirmation of my disability. I asked him if there was any specific information he would appreciate being included in my doctor’s letter, and his answer was to tell me that he simply didn’t want to receive a letter that gave me “carte blanche to act like a bitch.” HIS COMMENT WAS GENDER DISCRIMINATION

Back when I first began to understand how many of the ‘problems’ Fryer was blaming me for, in terms of my ‘attitude,’ were actually caused by fluctuations in my blood sugar that were detrimentally affecting my personality, I attempted to educate Fryer and Dale about this new insight into my disease, and how it affected me. I tried to make an analogy to Fryer’s well-known bad-tempered moods, which have culminated in full-blown tantrums where Fryer has had to be avoided at work because of the backlash. When I pointed out Fryer’s own personally disruptive and troublesome moods (that are not the result of a dysfunctional endocrine system) his immediate response was to label his moods as being a result of times when he is “focused.” THIS DISTINCTION IN LABELS IS GENDER DISCRIMINATION.

It is unfair, and illegal, for the pool to hold me accountable for displaying behavioral traits that are exhibited by other members of the workforce (especially by my male boss), but to only hold me accountable, and to consistently reprimand me for not changing my ‘attitude’ — especially considering that my unacceptable behavioral traits are a direct result of the stress and anxiety I have been experiencing at work because of being sexually harassed, and retaliated against, during the past six years. My ‘attitude’ has been a direct consequence of my disability created by diabetes and the hostile work environment Fryer helped to create by marginalizing me. The Park District’s continued unwillingness to change their ‘attitude’ towards me, and for continuing to blame me for being diabetic is DISABILITY DISCRIMINATION mixed with GENDER DISCRIMINATION.

This is why I quit the pool. I had enough. I was no longer willing to participate in my own suffering by allowing them the opportunity to continue discriminating against me because I am a diabetic female.

The Equal Employment and Opportunity Commission (EEOC) guidelines state that it is “illegal to harass a woman by making offensive comments about women in general.” During my meeting with Fryer and Dale at the end of the summer in 2017, I was given an ultimatum to either quit my job (and receive a good reference from Fryer) or remain employed at the pool under the condition that one more complaint would result in immediate termination of my employment. I chose to remain because I was not prepared to be unemployed, but I wanted to make sure that my bosses were aware of the difficult relations I was having with one of the water exercise instructors at the time, so if she were to make a complaint, at least it wouldn’t be coming out of the dark. When I told Fryer about my difficulty getting along with Jakki, Fryer simply replied, “Well, if she has a problem then she can pull up her big girl pants and deal with it.” That statement, in those circumstances, was extremely offensive to me as a woman. Especially considering the fact that the complaint made against me, resulting in the ultimatum, had come from a man at work who wasn’t even in the same department as me. I wanted to demand why John in Maintenance was not told to “pull up [his big boy] pants and deal with it.” Instead, I was still under the belief that I was required to respect the authority my bosses held over me, so I let the offensive comment go without challenge.

Research shows that service-based industries, in which employees rely on customer approval, can breed an environment of harassment, but 73% of sexually harassed women never report incidences because:

“If you do come forward, you’ll be labeled a ‘troublemaker’ or a ‘bitch.’ More importantly, you won’t be believed.”

—Gretchen Carlson, former Fox News Channel host filing a sexual harassment suit against Fox News chairman and CEO Roger Ailes in 2016

Men most often have the power to determine if an organization will prevent and treat sexual harassment—or allow it to spread. I believe the same statement is true concerning gender discrimination. After all, sexual harassment is nothing more than the recognizable face of discrimination against a woman for being a woman in a man’s world. Women who deviate from the gender norms attributed to them by exhibiting traditionally masculine personality traits, or who simply are employed in supervisory roles, are especially likely to experience harassment in their work environment. This was true in my case, at least.

When men are competent they are perceived as being forceful. Women who display the same traits of competence are conversely seen as being aggressive. I was a victim of this particular brand of discrimination based upon my gender. My prominent personality traits, which include my tendency to be assertive and refuse the arbitrary roles expected of me by society in general, allowed my coworkers and bosses to label me as being ‘bitchy.’ I was given less latitude in being able to ‘get away with’ similar types of rude behavior that Fryer, and other men I worked with, were commonly known for exhibiting.

This is where the intersection of racial discrimination joins in making a rather special case out of my experiences. Despite the Civil Rights’ Movement, and educational gains within the black community, many black women still struggle to overcome stereotypes that paint them as ‘aggressive’ or ‘difficult to work with.’ Many black women who are immersed within a mostly white, male-dominated setting (such as my employment status at the Park District) will find themselves assigned with the stereotype of being the ‘angry black woman’ simply because of our intelligence, our out-spoken-ness, and the confidence we have in our skills and capacities.

My experiences, and struggles, at the pool have taught me to recognize how my diabetes affects me. I am now capable of explaining these traits to my next employer. I wish my previous employer had felt enough respect for me to listen more and learn with me over the years. I wish I didn’t have to walk out on my friends. I wish the world was a fair place to live in. I wish women didn’t have to struggle with being called a ‘bitch.’

But wishes are like farts. At worst, they stink and then dissipate. At best, they simply go unnoticed.

Thoughtful Reflections

I had an entirely different post written and edited ready to be published. I was going to make some final touches this morning when I went out for coffee, but I forgot my flash drive.  When I finally got around to grabbing a beer with my dinner and publish, I forgot my flash drive. Again.

So. This is what I started writing this morning and what I am finishing right now with the last of my beer (a bitter at Falling Sky, in case you’re interested).

Spending my time writing instead of working has been cathartic. I know my writing pretty much sucks at this point. I also know it is only my mother, and two or so random friends (with a couple of strangers added to the mix), who are the only people reading this crap. But that doesn’t stop me from wanting to say Thank You! Even if this is the only post you have ever begun to read, and you have absolutely no intention of reading to the end, I still would like to Thank You!

I need this time to process and untangle the knot that has been residing in my heart for the past six years. Many of the friends I left behind at the pool never had the opportunity to know me without the influence of the knot of dread that has been harboring in my breast since I lost my friendship with Red. I wish I could have had more time to experience being the person I am, without the stress from harassment and the high blood sugars it causes, while working at the pool, but I know it would be of no use. The people working there believe they know who I am. They believe that the crabby, grumpy and unpredictable Sam is the real Sam I am. How can they possibly understand how much of my personality is hijacked when I am stressed, or hyperglycemic, or tired from managing my diabetes all night instead of sleeping, when I have only begun to understand how diabetes affects me for myself?

The stress derived from my encounter with sexual harassment resulted in my strenuous struggle with Post Traumatic Stress Disorder. I was never officially diagnosed because I never told anyone about what happened. I suffered in silence for years. I feel free now knowing I will no longer suffer, nor be silent, but that knowledge does nothing to erase the emotional knot I have been living with since I refused to have sex with Red. This knot has become an entity within myself. It can, at times, be a puppet master pulling at my emotional strings and causing me to behave in obstinate and cantankerous ways that are misperceived by those who don’t know me as being ‘bitchy.’ But, I am not a bitch.

I repeat, I am not a bitch. I am a strong-headed, loud mouthed, sarcastic, and fundamentally independent woman. I speak in a manner that is blunt and direct with no flowering or sugaring of words (after all, I am diabetic and don’t need any more unnecessary sugar in my life). My manner can be abrasive, offensive, and judgmental, but I never speak with the intention of causing harm. I may not be very nice most of the time, but I am always kind.

The problem is that my kindness is easily disguised, or hidden, by the puppet master crawling around in the dank safety of my heart’s infernal knot. This damn knot has been an insufferable curse I have never been able to truly escape, but, over the years, I have learned how to begin releasing the negativity infecting my heart’s true purpose born from the traumatic experience of harassment. I no longer blame Red. There is no need. I accepted long ago that blaming anyone is useless and more harmful to myself then to them. I was lucky enough to not leave the pool before I had the experience of knowing that I had healed from my trauma caused by Red’s actions.

On the same morning when I had my encounter with Amanda (which became the crucible of my decision to quit) I finally had an encounter with Red that was as calm, peaceful, and uneventful as the days before his solicitations for sex. Being able to speak with Red, to have him speak back respectfully, and feeling safe enough to hand him a pen to write with, proved to me beyond a doubt that whatever problems Amanda believed she had with me were of her own making, and existed within her own mind. What I had ‘done’ to upset her so much was more a consequence of her own emotional immaturity and past behavior. The maturity that evolved from my personal suffering over the years had already made its mark. My diabetes, however, that is an entirely different story, and the foundation upon which the Park District has been capable of marginalizing both me and the issues I brought to their attention.

day 5: ***MY diabetes***

Diabetes.

I wonder what my life would be like today if I did not have diabetes.

I would be employed. If diabetes had never entered into my existence I would most likely be employed as a middle school Social Studies teacher either somewhere in the Bay Area (probably Oakland) or in Reno. I would work during the school year, volunteer my time helping my community, climb in the local gym with my friends, and climb outside on the weekends with those same friends. That was the life I expected to create when I first moved to the South Bay Area in 2003. As a result of the opportunities I experienced while living in the South Bay, there is a good chance I would still be working as a mountain guide in southern Yosemite during the summer seasons as well.

I think I would be married. In fact, I know who my soul mate was that I should’ve had children with, but Life tore that possibility away from me with more devastation than simple diabetes. I will live the duration of my life with conviction about the primordial axiom: LIFE IS NEVER FAIR.

Those are the two biggest sacrifices I believe I have had to make because of my diabetes: career and family. Instead, I find myself having to imagine a new life for my future. Diabetes effectively killed my ability to begin a career in education during my early thirties. Now, in my early forties, I find myself struggling to want the same life I had imagined over a decade ago. The life I want to live now centers around the mandatory routines I must perform in order to feel healthy and to have the physiological capacity to accomplish the routines of daily life.

My diabetes has never been easy to manage. All the facts listed about diabetes in the medical literature sometimes fail to be accurate in my personal experience.

Last January, I was in the hospital for Diabetic Ketoacidosis caused by Influenza. It was a condition where my blood glucose levels had become so high they made me very sick. I spent two nights and two days in the ICU until my glucose levels were brought back down into range, and the dangerous ketones in my blood were flushed out of my system. By evening of the second day, a bed finally opened up and I was transferred to a room in the main ward, with the expectation that I would be released from the hospital in a couple of days.

I closed my eyes that night believing I would sleep, wake up, eat breakfast, talk to my doctor, and then get well enough to leave the hospital the next day. Instead, I woke up around 1:00 in the morning feeling sick from high blood sugar. My nurse came and, after checking my blood sugar, we learned that it had risen above 250 (100-120 is considered to be a ‘bull’s eye’ target range for us diabetics). Blood sugar levels, according to the medical literature, rise only when carbohydrates are eaten (the medical community has only recently begun to understand the connections between glucose levels and stress). I had not eaten anything and my stress levels were lowered because of the treatment I believed I was receiving. So, why was my blood sugar steadily climbing? Why was my liver kicking out glucose into my system while I was peacefully sleeping? These are questions no one has ever been able to answer for me.

What I do know is what happened next:

My nurse called the nighttime on-call doctor to get permission for administering insulin to lower my glucose levels. My nurse was amazing! He did everything in his power to try and help me. In fact, my nurse was a Type 1 as well (diagnosed at the age of 27) who was using a pump. He knew exactly what I was suffering through. He even mentioned how much he wished he could just give me some of his insulin to help, because the nighttime on-call doctor NEVER called back to give permission for my glucose levels to be lowered to a healthier level. We never learned why. No one ever told me why I was allowed to lay in my hospital bed, the first night out of the ICU for DKA caused by high blood sugar, and have to suffer through the sickness of having my blood sugar climbing uncontrollably. By shift change at 7am, my day nurse arrived in time to hand me my second vomit bag for the morning because I was uncontrollably nauseous–AGAIN!

The daytime doctor finally arrived to begin her workday and managed to prescribe me some corrective insulin, but I was now required to stay in the hospital another night because my blood sugars were out of range. Also, by this time, my electrolytes were wacked and needed to be replaced. I was put on a magnesium drip that was expected to finish in a few hours, but it burned so bad going into my arms I could only handle the pain for an hour or so at a time. We were constantly moving the IV between my arms. It was the first time I have ever needed to have more than one IV. I finally managed to finish the magnesium bag by the end of the day.

I spent two more days in the hospital because my doctors were incapable of bringing my blood sugar levels down into an ‘acceptable’ range. I was not able to administer my own insulin intake because my pump resevoir was empty (a mistake I will never make again!) and I was reliant upon the doctors to administer the ‘correct’ amount of insulin for my health needs. The problem with relying upon doctors is that they follow the ‘established medical guidelines’ as to how much insulin to administer. Again, the problem being that I do not always fit into the ‘acceptable target range’ of what the doctors expect from Diabetes. The amounts of insulin they were providing me with were simply insufficient to the task of lowering my glucose levels.

***Here is the crux of my agitation with the medical community: they are terrified of insulin! My doctors were so afraid of administering too much insulin, and dropping me into hypoglycemia, that they were simply unwilling to listen to ME and give me the amounts that I KNEW to be what I needed!***

I feel justified in making this statement: I KNOW MORE ABOUT MY DIABETES THAN THE DOCTORS EVER WILL.

I don’t remember my second night on the ward, but I do remember my blood sugars never lowering into range during my second day spent in that ward. My third night, however, was spent with a different nurse and I remember this night very well. By this time my doctor had left a standing order for insulin to be administered when needed. My new nurse was not a native english speaker. I freely admit I pushed her for the right to determine how much insulin I was administered. When I ate dinner that night, I estimated the carb count for my meal and entered the numbers into my pump for the Wizard program to do the math. The hospital menu I was allowed to order from (as a diabetic) had the carb count of each item listed. As a diabetic, I was allowed to only order so many carbs at a time. I ignored the damn menu’s carb count. It did not match the estimate of carbs that I had learned to make over the years by looking at the food I was going to eat in front of me, and then determining how each item of food may affect my blood sugars from past experience. I told my nurse to give me the amount of insulin suggested by my pump. I had to round the number up to the next whole amount because syringes are incapable of providing the small amounts of insulin the precision of a pump can deliver.

My next blood check was two hours after I ate and my number was not too high. The nurse wanted to wait another three hours before checking again, but I told her to come back in an hour before I went to sleep. I was not using my own test strips because I only had two left (another mistake I will never make again!) and I needed them for the ride home once I would be allowed to leave the hospital. In an hour my blood sugar had dropped to 75, which is close to technically being labeled as hypoglycemia, but is also typical in my daily life experience. I asked the nurse for some ’emergency’ carbs and she brought me two pieces of toast and some peanut butter. I could tell how nervous she was from my blood sugar being so low. Maybe she was simply worried because she had allowed me to tell her how much insulin to administer rather than giving me the amount the doctor expected for the meal I ate, but I am used to this nervous reaction from medical professsionals when confronted with a glucose level ‘too low’ for their comfort.

Knowing my diabetes as intimately as I do, I knew only one piece of toast with peanut butter would be sufficient. The nurse was worried that I didn’t eat the second piece, but I comforted her by telling her I would keep the toast next to my bed in case I needed it later. Now that she knew I had corrrected my low with the ‘correct’ carbohydrates my nurse felt safe leaving me alone for the night. The doctor had required my blood to be checked every three hours, but I told her to come back in an hour and wake me up to check my blood again. I am not ashamed to admit I pushed the nurse again for my healthcare to be provided to me the way I needed it to be. And it was a good thing that I did push her because, within that single hour, my blood sugar had risen to 170 from a single slice of bread, and I needed to tell the nurse how much corrective insulin to administer. This time I was confident enough to let her wait the three hours to check my blood like the doctor had determined.

During the rest of the night my glucose stayed steady and in range. When I had my first check in the morning before the doctor came in I was at a beautiful and healthy 117! All because of my determination to ignore everything the doctor wanted to be done for me. Unfortunately, I had to remain in the hospital for the entire day because I allowed the doctor to make the determination for my insulin during the daylight hours. . . and my sugars never came back down into range after my first meal of the day. In fact, I only ate two small meals that entire day, and my glucose levels never reached my target range because of my doctors unwillingness to listen to me when I tried to tell her how much insulin I should be given.

By five o’clock that evening I firmly informed the doctor I was leaving the hospital despite her belief I should stay another night for observation. I told the doctor that the only time my blood sugar levels had been stable during my entire stay under her care had been during the previous night when I had been in complete control of my diabetes. This was not the first time I have had to call out a medical professional for treating diabetes as if it were a cookie-cutter disease that affects everyone in exactly the same way, nor do I expect it will be the last, but it was the first time I ever forcibly had to advocate for myself with the belief that I do know more than my doctor about how to manage MY diabetes.

*********************************************************

The life I now live is a Diabetic Life. It is the only life I will ever know for the rest of my life. I have no option to live any other kind of life. Diabetes is my lot in life. Fortunately for me, I am learning how to live my life as a healthy diabetic with my blood sugars under control. It was my nine years spent working at the pool that allowed me the opportunity to learn how my diabetic life would be able to work for me. Without my experiences at the pool forcing me to become more aware of the effects diabetes has upon my personality, I believe there are several emotional and behavioral manifestations of my diabetes, and the way it affects the people around me, that I would still be ignorant of and incapable of mitigating within my public and social spheres.

I am grateful for my experiences at the pool. I am a better person for having had to deal with all the struggles. I have a clearer understanding of who I am and what I need in order to be healthy. I have gained a secure level of self-confidence I do not believe I would be capable of without having had the experience of fighting for my survival in an environment of pervasive harassment. The pool created a crucible in which my comprehension of what it means to live a diabetic life led me to recognize and become aware of the hidden and confusing ways in which discrimination can manifest itself in our daily lives. Learning to navigate the various forms of gender and racial discrimination I face everyday as a black woman were nothing compared to the experience of being discriminated against because of my invisible disability. Simply coming to the realization that I am in actuality ‘disabled‘ was a trial of self-awareness I may never have accomplished without my experiences at the pool.

I am not sharing my story to hurt the pool, or the people still working there. My goal is nothing more than to make the pool a better place to work. I want the pool to be a place where a black woman with diabetes can safely work without being hassled by her bosses for being a ‘bitch.’ Period.

Day 4: Diabetes (part 1)

I went to work at the pool because of Diabetes. I remained employed at the pool for nine years because of Diabetes. I allowed myself to suffer severe and pervasive harassment and discrimination for six years because of Diabetes.

Diabetes scares me more than the evil natural by-product of blind ignorance produced by the likes of Red, Fryer, Dale, Bill, Amanda, and every other individual working for the Park District combined ever possibly can. None of them can end my life. They have definitely made my life more difficult, stressful, unbearable, and unhealthy then it now is without them in it, but, with the help of the Park District, and my experience surviving there, I have finally learned how my diabetes works.

I first started this blog as a way to chronicle the shift of thinking about myself as being diabetic to thinking of myself as diabetic. It was a depth of acceptance that had eluded me for almost ten years. Reading back over my first few posts I can still read the frustration and anger resulting from my diagnosis in my words. I have managed to survive long enough to spend a quarter of my current lifespan as a diabetic. It is a trend I am hoping to continue for the next half of my life. Social survival at the pool was always secondary to the survival of my life.

The irony of insulin-dependent diabetes is equally as beautiful as the moment of handing Fryer the key while he was in his swim suit. But, I fear it is an irony that only people intimately involved with insulin are ever truly able to appreciate. For those of you reading who aren’t familiar with insulin, or Diabetes in general, I am going to spend the next couple hours (before my friend cooks me dinner tonight) briefly explaining the different ‘types’ of Diabetes so later I may hopefully be able to explain in detail the intricacy of insulin-dependent (or Type 1) diabetes, so you may have a better understanding of my disability and how I was able to be discriminated against for my disability at the pool by the administration of the Park District.

There are two types of Diabetes that are mentioned in the media, of which most people unassociated with the disease in general are aware of the one called Type 2, also usually labeled as ‘adult onset.’ It is the version of diabetes that most people have some kind of connection to, mostly with an older relative who has, or had, Diabetes. I prefer to label Type 2 diabetes as ‘insulin-resistant diabetes’ only because many people with it might be able to manage the disease with exercise, diet, and lifestyle changes. Insulin-resistant diabetes can even have a timeframe, early in the development of the disease (called ‘pre-diabetes’), when a person can ultimately (hopefully) erradicate the effects of the disease by simply changing what they eat, how much they eat, and with increasing their exercise. Insulin-dependent diabetes does NOT have an escape. It does not matter how much I change my diet or lifestyle, I will always be dependent upon insulin until the day I die.

Everyone (and I do mean EVERYONE) with insulin-resistant diabetes gets sick in their adulthood. Okay, wait . . . this might not truly be an honest statement. Especially with the increase in childhood obesity, because it is obesity, and sedentary habits, that are the crux of becoming an insulin-resistant individual. With obesity comes the body’s inability to utilize insulin correctly. The pancreas still merrily produces enough insulin to cover the body’s needs, but the cells become unable to use the insulin correctly. The simple explanation that comes in all the literature explaining Diabetes is that food is converted into glucose, which is the fuel that keeps our body and brain functioning. Cells need to use the glucose that ends up in our bloodstream to work. Period. Without glucose our body begins to fail and we die. Period. The problem with insulin-resistance is that the cells become unable to take in the fuel they need because insulin is the ‘key’ that unlocks the cell to allow glucose in. The cells are ‘resistant’ to the insulin produced by the body.

There, that is as technical as I’m going to get right now. To reiterate, insulin-resistance is when the pancreas produces insulin that the body’s cells are unable to use properly and the person gets sick. With the help of medication, an insulin-resistant person can begin to utilize the insulin within their body and become healthier. Exercise helps cells to utilize insulin. The more exercise, the less resistance.

Insulin-dependence is very different. First, the problem does not start with our lifestyle or body-type. Insulin-dependence begins when the immune system attacks the cells in the pancreas that produce insulin. The pancreas, in time, becomes unable to produce enough insulin for our bodies to stay alive. Before the discovery of insulin in the early 1920s, insulin-dependent (Type 1) diabetes was 100% fatal. It is an auto-immune disease, which insulin-resistant (Type 2) diabetes is not. It makes no difference how obese we are or how little we exercise. The unavoidable fact is that our pancreas NO LONGER PRODUCES INSULIN. Period. Without insulin we die. Period.

Now the explanation begins to become more complicated, and I’m not going to go deeply into details today, but there are soooo many more factors involving Diabetes then the two very simplified explanations that I’ve just provided. For one thing, there are more than two types of diabetes, the most other widely encountered version being gestational diabetes. But none of those versions affect me and how I manage to live with my diabetes. The two explanations I’ve provided above are the basic building blocks to begin understanding the manifestation of my diabetes, which, let’s be honest, is the whole point of this blog in the first place.

MY diabetes is labeled as Latent Autoimmune Diabetes in Adults (LADA). I have not been ‘officially’ diagnosed with LADA. My official diagnosis is Type 1 Diabetes (insulin-dependent). I was mis-diagnosed as Type 2 in the beginning because of my age being 32. Like I said earlier, it is adults who become sick with Type 2. Insulin-dependent diabetes used to have the more commonly known name of ‘juvenile diabetes’ because it was ALWAYS children who became sick with an autoimmune disease causing insulin-dependence. Juvenile-onset diabetes happens quickly. Within a matter of months, or even weeks, parents will watch their young child become lethargic, skinny, and sick. It is that first trip to the Emergency Room when they learn that their child is now diabetic and needs to manage being on insulin for the rest of their life. It is as close to a death sentance you can honestly receive while still being alive.

***Here’s the kicker: insulin is needed to stay alive, but take too much (just a drop too much) and you run the risk of seizure, coma, and death.***

The problem with Diabetes is that it allows your blood glucose levels to rise too high. Too much glucose floating around in the bloodstream will begin to destroy certain physiological structures. The most commonly kown side-effect of ‘diabetes’ is losing a foot. Or any appendage. High blood sugar destroys blood vessels. It restricts the ability for blood to flow in a healthy manner to the extremities. Amputations are a ‘common’ complication of Diabetes. High blood sugar can also cause blindness, heart disease, kidney failure, liver dysfunction, etc., etc. Since my diagnosis, I have noticed a distinct reduction in my ability to heal a simple cut on my leg without creating a nasty looking scar.

I need to wrap up my beginning of this chapter for today because I need to go home and get my fiddle ready to go to my friend’s house for a pleasant night of recitals and dinner. But I want to leave you with this one idea to ponder until tomorrow when I have time to finish this chapter: I have described two very different types of diseases that share a common name, but have distinctly different origins. One is a disease of the metabolism, while the other is autoimmune. Both of these diseases are deadly. Both can cause great and tremendous bodily harm. Both are emotionally traumatic to be diagnosed with. Both need constant and diligent attention to detail in order to manage living a ‘healthy’ life. They are different, but they are the same.

Tomorrow I will share some of the traits that both versions of Diabetes have in common, and how those commonalities affect me and my ability to learn how to survive living with insulin-dependent diabetes.

Have a wonderful evening!

How Low Can YOU Go?

Low blood sugars can be scary. They certainly scare the hell out of me when I’m alone. A few weeks ago, I was walking to the store when I realized I was no longer walking in a straight line. My blood sugars had begun to drop so suddenly that my cgm was unable to keep up and give me a warning. By the time I made it to the street the store was on I could feel my thigh muscles begin to twitch–a sign that a seizure is close at hand. I had one applesauce packet with me in my purse and I swayed on the street corner sucking it down, praying I would make it through the parking lot without collapsing. There weren’t many cars out, but I stood on that corner for a few minutes staring at the one way street I wanted to cross, the one way cross-street with oncoming traffic, and the street lights trying to convince myself that it was safe to step out into the street and not get hit by a car. I was scared that I would be confused and step in front of a moving car by mistake. I had to chuckle, though, at the image of me standing on the corner, swaying like a drunk, and all the people in their cars hoping I wasn’t too drunk to step out in front of them suddenly.

I finally made it into the store and went straight to the bakery section. I knew where I was at the time, but I was unable to recognize my surroundings. Thankfully, I shop at that store often and I was able to subconsciously find my way to accessible carbohydrates. There was one chocolate donut in the bakery case and I reached in and put it in my mouth without pausing. I was into my second bite when I looked up and saw a young woman behind the counter staring at me with a look on her face. She asked if I needed help and I simply shook my head as I went for a third chunk of chocolate donut to stuff in my mouth. I thought about twisting my arm so she could see the med alert tattoo I have on the inside of my right wrist, but, even in the midst of confusion from a bad low, I knew it was useless to try and explain WHY I needed to eat that donut as if my life depended on it.

It has been years since I’ve had a low bad enough to incapacitate me, or cause me to be unable to administer a correction without assistance. Most of the time, I hate sharing these stories because I hate how they make the non-pancreatically challenged people around me react. Either I am bombarded with suggestions on what to do to take care of myself, or with suggestions on how to prevent it from happening again–all of which are useless because they come from people who have never had to count a single carb in their entire life. Friends, family, strangers on the street…it doesn’t matter who it is, I hate being told what I should be doing by people who are not diabetic.

So I joined some online diabetic communities thinking I would be able to connect with people who could easily understand what I am experiencing. Unfortunately, it isn’t that easy, even in the virtual world.

I joined the Latent Autoimmune Diabetes in Adults community on Facebook thinking I had finally found the population of diabetics who would understand me and my particular circumstances; not adults who had grown up fighting diabetes, and not parents of children who are fighting diabetes, but other adults who had to wake up one morning and start living their adult life as a diabetic. I thought the fact that people seemed to post questions and comments meant that I had found a way to connect with people who shared a compatible need for connection and communication. Instead, I found a community of people who seemed to whine as much as type 2’s: When will I have to start taking insulin? How do I prolong my honeymoon? What should I eat to not have to take insulin? 

None of these questions concern me or my experience with diabetes. I was completely dependent upon insulin from the first moment I learned I was diabetic. My pancreas and I never had a honeymoon. I never had the option of eating anything that wouldn’t raise my blood sugars. Hundreds of diabetics from across the planet are able to connect with each other and share the experience of trying to avoid taking insulin with their food. I wish I could be one of them, but I never will be.

IMG_2573
24-hour graph with peaks and valleys, but all within a decent range

I posted one question to the community in search of other brittle diabetics like myself with a picture of my 24-hour graph showing extreme peaks and valleys in my glucose levels. I had a few people suggest I eat less carbs (without asking, of course, what my normal routine of low-carb cooking was) or suggest that I not eat so many carbs for a correction (not knowing that a 21g granola bar has the ability to send me from a 52 to 257 in less than thirty minutes). Again, I was simply receiving advice from people who are clueless, only this time they also have a malfunctioning pancreas–only their pancreas still works well enough to allow them the hope of thinking they may not need to become dependent upon insulin before the cure is found.

I didn’t get very many responses, and none of them truly helped to make me feel connected, but I did have one very interesting exchange. One woman had posted a picture of her 24-hour graph stating she “wasn’t very happy” with it: a long steady line that had a small bump going up to 175 and coming back down. My peaks had easily reached upwards of 350 and my valleys were down in the 50’s, so when I read her comment I wanted to smack her through the internet and hopefully knock some sense into her. Instead, I tried to be courteous by replying, “Damn! That looks good to me. I’m jealous!” Another women commented a few hours later berating the first woman for being so insensitive as to complain about her graph. I thought, “Finally! A chance to start a conversation!” but, before I could respond, the entire conversation thread was deleted. Great. So, not only am I still not connecting with people who are able to share similar experiences, but now some invisible and disconnected individual is censoring my post and disallowing me the opportunity to engage in a meaningful conversation that, at the very least, has the potential of increasing other people’s awareness and perceptions about diabetes.

 

I have finally come to accept that there is most likely not another diabetic in the world who can easily comprehend or share in the particularities of my personal brand of diabetes. As much as the memes try to remind me that I am not alone, I nevertheless feel very lonely in a world where my experiences are incomprehensible to everyone else. For example, last night I went out for dinner and drinks with a good friend and I slightly overestimated my carb count for the calamari.

IMG_2564
First glucose test 

By nine o’clock my cgm started vibrating and beeping while we sat next to the fire in my yard. I was at 42 and felt perfectly fine. I started counting backwards from 100 by three’s and didn’t miss a beat. I told my friend I should maybe count back by four’s since I’m used to testing my coherency with three’s–I still did not have a problem doing the math. I started ranting about how frustrating it is to be so damn low and not feel a single symptom to give me a warning. I went inside and pulled out my stash of emergency carbohydrates: applesauce and dried fruit. I wasn’t the slightest bit hungry since I had eaten a full meal earlier at the restaurant but I drained the applesauce packet while ranting about the need to eat when I’m not hungry, and the fact that I have to waste so much garbage by using single serving pouches to accurately control my carbohydrate intake. This is not how I want to live my life, but what choice do I have if I want to stay alive??

IMG_2592
Two hours after the first glucose test, 17g of applesauce, and no basal (I usually keep my temp basal for an hour at a time)

My blood sugar slowly rose up from the applesauce and I never suffered any confusion, loss of balance, or twitching muscles. My friend was scared because my numbers were so damn low, and I could tell I was acting a little erratically, but, overall, it was a hypoglycemic event that wasn’t much of an event at all. Definitely not the kind of hypoglycemic event that would have occurred for other diabetics who were to drop so low. Or, maybe, there are others out there like me; people who suffer alone, and in silence, thinking they are the only diabetic whose diabetes does not operate the way every medical professional who treats diabetes says it should. Maybe, just maybe, I’m not alone either. Maybe I’m not the only brittle diabetic who can accurately count backwards from 100 by three’s or four’s while suffering a severe hypoglycemic event.

Does it Show?

 

IMG_2208
Wawona Point with Half Dome in the background

This was me (on the left) ten years ago. Before I knew my pancreas was no longer working. I look at myself now and I can see the disease. I can see how thin I was. At the time, I figured I was losing weight because I had been hiking and carrying a large pack all summer. This was the end of the season, and the couple and I had spent three days hiking to Little Yosemite Valley as a base camp for a one day summit of Half Dome. This picture was taken at Wawona Point where we had left the cars parked.

A friend (who has Lyme’s Disease, has restricted her gluten intake, and seen a drastic reduction in her body’s inflammation) said to me yesterday, “I can tell when I look at someone that they have inflammation and are swollen, just like I bet you can see if someone is diabetic.”

I love my friend. But I wanted to slap her for saying, and believing, something so incredibly stupid. Instead, I sighed and chose a response that wasn’t as snarky as my first impulse (“Yeah, right, because we all wear a bright fucking neon across our foreheads”)– I said, “I can’t tell if someone is diabetic unless I see them pull out a pancreas from their pocket.”

Simple, right? Sometimes it amazes me, and strikes me silent, when people share their

IMG_2239
Gardening with my MedTronic

deep ignorance of diabetes. I have personally only met FIVE other people in my life who  I know are Type 1, and only two were on a pump. I randomly met the two people  on pumps at a coffee shop and a bar here in Eugene during the past two years. They both were incredibly gratifying encounters. I dated a man a few years before I was diagnosed and I knew he was Type 1, but I never saw him take a shot. In fact, I only saw him check his blood once when we were stuck in traffic on a long road trip. I knew he carried his glucometer with him (I didn’t know that was what it was called) because he carried it in an old leather cigar case he had found, and I simply knew he always had that case with him. In the six months I dated him I never learned anything more about his diabetes. It never occurred to me that it meant anything.

I forgive my friend. She has no need to understand diabetes to the depth that I am required to. Her ignorance is my fault for not asking her to become more aware and educated when talking to me about my disease. I’ve done some cursory reading on the internet about her disease, and I ask her questions, but mostly I let her rant when she feels overwhelmed by the loneliness, anger, fear, and anxiety (that I am intimately familiar with from my own experiences) which accompanies a life-altering diagnosis.

I have struggled from the very beginning to control my blood sugar levels. When I first started my diabetic journey, I would hear healthcare professionals call me “uncontrolled.” I hate, HATEHATE that label. With a passion! I was personally offended every time I heard it because the only thought I had was:

“F*CK YOU! I am doing EVERYTHING I possibly F*CKING can to control this F*CKING disease. How dare you suggest I don’t control my health!?!?!”

I have come to realize that I prefer to be labeled as “brittle” or “labile.” It is important, I think, to realize and consciously accept the labels we choose to live with. The thoughts we think, and the feelings that support those thoughts, are the reality we experience.

I am not perfect. Not even close. I just shared a post on Facebook that stated, “World’s Okayest Diabetic.” Some days I do better than other days,

IMG_2192
Usually  I try to not go so high, but it obviously happens

but every single day, without fail, I am always intensely aware of the fact that I am diabetic, and it won’t go away, and I have no choice except how I choose to take care of myself. One of the earliest lifestyle changes I made was to not tell myself I “couldn’t” eat something, but to bargain with myself instead. If there are cookies at work and I want one, I simply have to forgo that pizza I thought I would have for dinner. Some nights I will even choose to eat cookies and have pizza for dinner! My mother raised a rebel!!

 

IMG_2257
So rare, but so exciting!

I do work very hard to keep my numbers as close to 120 as I can. It is a struggle that I wish I could walk away from. It is a way of life that I wish I did not have to live. It is a regimen of restrictions that I resent and sometimes refuse to acknowledge. But the truth is always the same: I am diabetic. I am insulin dependent. I am disabled.

I am in the process of trying to request what I consider to be “reasonable requests for accommodation” at work based upon my disability of having  a defunct pancreas. Mostly, I am hoping to emerge from under the oppression of being rumored as a bitch at work because people in other departments don’t know I am diabetic, nor do my bosses understand the extent of which my diabetes can affect my personality when my blood sugars are fluctuating. Like I said earlier, I have always been extremely brittle. My immediate boss simply believed the rumors of what a bitch I was because he knew I was on the pump and that was supposed to “cure” my diabetes. I had no idea he thought I was “cured.”

I live a life that makes me happy. It isn’t the life I thought I would be living when I was thirty. Nor does it resemble anything like the life I thought I would be living when I was twenty. Instead, it is the life I find myself living now that I am forty. I play soccer, drink beer, camp under IMG_2209the stars, eat out with friends, ride a bike everyday, grow my garden, practice my fiddle, and learn new ways of dealing with the depression that hounds me because of the diabetes. Everyday is an opportunity to learn something new about myself. Not everyone has the chance to test their willingness to stay alive and healthy. For most people it is a default. They simply have to wake up and get dressed and make it to work. There are no life and death moments in their daily existence. They know they are alive and that they will remain alive for at least the next twenty-four hours. It is not a struggle for them. I envy those people. But, at the same time, I wouldn’t trade places with them even if it meant having a pancreas that likes me enough to do its job on its own.

 

 

Bikes & Brew

Nothing goes together in Eugene as well as bikes and beer. We are surrounded by both.

This was not the post I was expecting to share today. I stayed up late last night until after midnight working on my first “official” post, but I forgot my memory stick at home when I went across the street to eat dinner and use the wifi at the Falling Sky Deli. Oh well. The good news is that I am slowly (oh, so incredibly slowly) learning how to actually create and design my very first blog! Witness my achievement by checking out my About Me link. I must admit I am quite proud of myself.

IMG_0142
Beer & Bikes at Falling Sky

I realize none of this has much to do with diabetes, but, if it wasn’t for the fact that I am living with diabetes, this blog would not even exist. So, I guess the question is why have I  chosen to write about bikes and beer? The answer is fairly simple: I LOVE BIKES AND BEER….equally. And Eugene has an endless supply of opportunity for experiencing both…equally.

I happen to live in the Whiteaker neighborhood, which has in recent years become known for the collection of amazing breweries located in the heart of Eugene: Falling Sky, Oakshire, Hop Valley, and Ninkasi to name the best. Because I happen to live across the street from Falling Sky, I am even lucky enough to be a member of the pub’s coed indoor soccer team (soccer being my third love in life after bikes and brews).

Again, I am sure some of you (who have actually found my blog and stayed long enough to read this far) are asking: What does this have to do with diabetes?!?

I assure you the answer is nothing. Except…if my pancreas were not broken beyond repair…I would probably be riding my bike, drinking my beer, and playing my soccer games without sharing stories of such on the internet. I guess the most amazing part of living with diabetes is the fact that I haven’t allowed it the chance to stop me from riding my bike, drinking my beers, or playing an awesome game of soccer every week. Ever since my diagnosis, my biggest goal in life has been to keep BOTH my feet–no matter what it takes!

Granted, drinking beer doesn’t do much to help me succeed at keeping my feet attached to my legs, but the pedaling and running involved are certainly not deterring me from accomplishing my goal.

IMG_0145
Bikes & Beer at Viking Braggot

 

Eugene offers the chance to spend your days traveling on two wheels to various brew pubs around town. In the industrial section of West Eugene, one can ride to Viking Braggot (who mixes mead with their beer) and Claim 52. Near the U of O campus on the eastside of Eugene is the Elkhorn Brewery, Sam Bond’s Brewery, and McMeniman’s East 19th Cafe. Coldfire Brewery and Steelhead/McKenzie Brewery are close to the Willamette River and Spencer’s Butte, while one can also spend a long ride touring the countryside near Coburg and head out to Agrarian Ales.

We love beer in Eugene. And we love riding our bikes to go drink our beer. It’s a way of life that we have perfected into an art form. It is a lifestyle that I am proud to claim for myself. Diabetes won’t stop me from living the life I want to live. It may add a few new parameters that I may not appreciate, but in the long run I think it simply makes me more amazing. It makes me aware of the fact that everyday is special. Not because I happen to live in a community that values sustainability and hops as much as I do, but because I am ALIVE enough to realize how special everyday is. Without diabetes controlling my every moment, I wouldn’t have the awareness to realize how special my moments are.