Yesterday, I sat in the wheelchair bathroom on the Coho (the lumbering ferry between Victoria and Port Angeles), and watched the pitter patter of feet. I was sitting there because along with all the other parts of me that don’t exactly work anymore, that includes having a normal dump. In fact, I would be having constant diarrhea if it weren't for taking a prosthetic probiotic every day. This is because I don’t have enough blood circulation to keep the natural flora and fauna alive in my intestines. Also, like Parkinson’s patients, I have loss of muscle, which when I say includes the right side of my body (including my tongue and swallow muscles), doesn’t stop at the arm, but includes the ability to move things along the intestines.
So, I was IN the bathroom because a ship going BACK and FORTH like a see-saw actually replicates the motion of an intestine and I was hoping to do what I had not in several days: have a bowel movement. Except that many females see the “disabled bathroom” as the “big roomy bathroom” or “the bathroom I can watch my child have a pee easily.” So while I sit there alternatively doing a bit of pushing and waiting for that feeling that the…um…cannon is ready to be fired, people come every minute or so and check to see if my stall is empty (it is on the left hand side, away from other stalls). And some give up and go to the other stalls, some wait 30 seconds and THEN give up and some go out and then come back again. Until the whole, weight of social expectation for me to vacate this toilet makes me want to scream at the next pair of feet walking and waiting, “This is a DISABLED TOILET, for people with DISABILITIES, and that might include HOW WE EXCRETE stuff!”
Today, I am talking about things entirely natural/biological and how for some reason we the ill/disabled (all of us really) have entered into a social agreement with both the medical establishment AND society to not talk about this stuff. I am talking the biological things of being human, and being female: hormones, burps, saliva, gas, bowel movements, pee, menstruation, hair (both the arrival and departure of such) and the changes in these things with illness and disability (and age!). Most of this will apply to males too, though if you start menstruating, please see your GP RIGHT AWAY.
By the way, I apologize to all my Japanese readers (particularly Ai) who will find this post probably so openly rude that either they or I am supposed to throw myself off a cliff. See, a couple years ago I was a “hold breath, go in, do the business and get out” public bathroom person. In fact unless the public toilet was empty, I would not even fart or so much as take a dump. Becuase I just couldn’t come out and do the washing of the hands while pretending I have NO IDEA where that stink has come from (even though we are in a PUBLIC TOILET!). I was THAT trained.
Things have changed. When I was packing in the apartment to do an overnighter over at Cheryl’s place my brand new, and super nosy (and slightly obnoxious) care worker was there (For example, she went, “God, no one does the dishes, this is just like at home, where my kids just leave me piles of dishes to do” – Well, actually YOU are here to do the dishes lady, that’s what I told the scheduler when they told me they were putting in someone new, and I don’t think your kids pay you $20 an hour; so that's why you get $40 to wash some dishes and put them away and make my bed). And I was adding an extra pair of underwear as well some jogging bottoms in case I peed myself that day during a seizure. And the worker wants to know if I am leaving for a while. I don’t tell my care workers my movements, and not on our first date, so I said I was going for an extended appointment and that these were in case of a seizure (true). Well, the thing is that planning and packing extra underwear for when you WILL pee yourself and there is urine all over your clothes is pretty surreal. But once you have HAD that happen or a few close calls, then it isn’t surreal, it is just IS. And while it may not be something people talk about, it is my reality (and for more people than just me).
Another example is how everywhere I go, I carry paper towels or tissue. This isn’t because I have allergies but because I use oxygen a lot. And the nasal flow makes your nose drip, and it also give you bloody noses (slow dripping for me). Also after a seizure, I sometimes, depending on the seizures and how I am lying, drool on myself, drool on the floor, drool on whatever is around. I can’t swallow and half of my face is doing the ‘seizure leer’ so drool happens. That’s just reality. Also my care givers or Linda may try to help me have a drink and I can’t swallow and it runs out the side of my mouths and down me. That’s why we moved to the “suck and swallow rule” which sounds like some sort of brothel extra charge but means, I have a straw and if I can’t suck liquid up the straw, likely I can’t swallow either. I am supposed to be ashamed of this. Because when this happens people look away, even as Linda has to search for paper towels and no one offers them because they are so busy NOT looking (which means they are). Because I am breaking the code of what is acceptable biological behavior in public: The one which still lets a guy adjust his ‘package’ every two minutes but I can’t drool.
Now, thanks to Sara at Moving Right Along, who mentioned menstruation, I can finally talk about this simple and monthly aspect and how it relates to the medical establishment. Because the medicos, while accepting that they are looking for often life changing problems or that you are sick or disabled seem to believe they are treating some form of robot. Before going into the MRI, I was asked, “Do you have metal shards in your eye?” I was not asked if I had seizures, and I was kept three to four times the length of time I was told I would be in there. And I came out unable to speak clearly because I was hot and on my back. I could have, depending on week and circumstance come out with pad full and a red spot on the lovely gown (or drip down in my bum). I am sure this too would have flustered the staff. But when did I sign up to stop being a biological being?
Because of seizures I now have gas the evening and morning after them. This was explained to me because as I gasp for air and don’t yet have control over my muscles, some air goes down my lungs, and the other goes down my stomach. Well, it doesn’t stay there but works through and shows up at the bottom end as a fart, actually quite a few farts. And since I have a few major seizures a week I could be horribly mortified about this. And I was until it was explained to me in a calm way that indicated that “This is what happens, this is the new reality.” Again, is that what I WANT to do in the MRI machine or during a medical procedure? No. But during weeks of lots of medical procedures, that is what is likely to happen. I will fart, maybe more than once. And when that happens, the techs say nothing or make the “face” because of course, they are testing for rare autoimmune diseases because I am WELL? Look, that contract I had which indoctrinated me about how or when I could fart or pee, or drool or how long bodily functions should take. That ended when my disability jumped aboard.
I was actually quite irritated at the lab AFTER they took my blood because AFTER fasting all night and morning I was to fill a pee cup ALL the way to the top. Now, I could have incontinence and peed that into my sheets or have it in my Depends I may have been wearing (common for my condition). And saying that I can’t leave until it is full when I am not allowed to eat or drink isn’t going to make more pee magically appear. Instead of incontinence, I have ‘retention’ which means that getting a stream to appear is sometimes quite a trick. So I was in the lab bathroom starting and stopping and starting and stopping and putting a fist into my bladder to try and get a stream going, so I could capture my pee (all accompanied with much use of colourful language), because it was coming out without pressure, just a dribble which flowed down to the anus and then dripped into the toilet.
I finally get the cup full and am rewarded with getting a jug and am to “recover” ALL my pee for the next 24 hours. Well, that isn’t possible so urinating becomes a big hassle of not just WAITING to pee but trying to get enough stream that more dribbles in the cup than down the outside. But that is my condition. And I am pretty sure that there are many other people who are out there with conditions which have their own manifestation and yet we are treated as if we should be embarrassed to talk or mention these actual diagnostic symptoms of our condition.
I rolled off the Coho yesterday with a dried white trail of drool on my chin and two cold break-packs peeking out of my top, having been shoved in my bra. That is what it took to make it across to Victoria. That is also what happens in Badminton, when one cold pack is warm, I toss it to Linda, she throws me another and I am out there on the court and with an “excuse me" I reach in and put it on my breasts, holding it in place with my bra. Yes, not exactly out of the Miss Manners textbook, but then, where is the “Proper Etiquette when doing a sport and not sweating” section?
Okay, now on to the forbidden topic: hair. Many woman have facial hair. But many treatments also produce facial hair; if you have thyroid problems, adrenal problems, or ovarian tumors or if you have steroids to treat cancer (even some birth control pills create facial hair for women) along with other medical issues you WILL end up with facial hair. Except women don’t have facial hair right? Well, that’s what we strive to make sure everyone, including other women believe. According to CNN, 20 million women remove facial hair AT LEAST once a week, and that is just the way it is (at least 40% of women will admit in interviews having facial hair AND removing it – about 5% need to remove it daily). Once you get deep into medical treatment, just wait for it (kind of like weight gain, that usually shows up too!).
So do I have facial hair? Yes. I have since I went into the deep dark of Anorexia for several years (throws your hormones into a blender of confusion and your hair on the scalp falls out while you get facial hair). In the last year, or particularly the last six months, that cycle seems to be happening on it’s own AGAIN. The doctors don’t really care, particularly male doctors (“I am sure it is just your thyroid dying” or “That is a non threatening condition”). Do I care? Hell yeah! But do women go, “So how is your facial hair growth?” No, we all pretend that nothing is happening. Some of the same way we pretend that legs and underarms magically lose hair. Only now I am too damn tired to shave BUT I do sports like badminton, so I try, every so often to shave and thus not flash everyone the fuzz when I raise my arm.
Since, the first thing everyone does in a seizure or passing out is touch my face, or fumble around my upper lip with oxygen feed, get it backward, fumble some more. Then no, when I am most helpless I do not like it that people are finding that I have facial hair, but what to do? I could spend time plucking, but like shaving, too much energy. I have been trying electro now and then (on prescription) on the basis that a) Laser is darn expensive and b) the idea of lying there while someone ELSE works seemed good at the time. Turns out that putting electricity through me, whether a nerve conduction test or to kill some hairs – both really punk me out. But with probable hospital stays ahead of me, what do I do? Get over it, accept that it, like so much else is now out of my control. Maybe. One woman I know who does shave daily (I had NO IDEA until she told me) said her greatest fear is getting into an auto accident and her husband has strict instructions to NOT rush to the hospital UNTIL he has gone home and gotten her shaving kit.
So that is me, I fart, I drool, I dribble on myself, I have issues with taking a dump, I have issues with peeing, my skin dies and peels off due to lack of oxygen, my toenails fall off because of lack of calcium and oxygen, my leg hair and other fine hairs have died for the same reasons. Lets see, what else? We covered my crown head hair going while more comes in on the lip and chin, we covered incontinence. Oh, I also experience “sundowners” which means I get a bit blue when the sun goes down, and I have emotional liability (rapid emotional changes). That means I cry, sometimes a lot, sometimes in odd places. You are not supposed to cry in an MRI, you are not supposed to cry while giving blood (but I did). Sobbing and hiccuping during the QUOTE routine procedures is seen as odd, you get the ‘face’ but the truth is that liability is part of my condition and even if it wasn’t, people get sad and cry, particularly when going to find out how much more their life, choices and options are limited. I expect that some people get angry and yell, I might have done that during medical tests or medico meetings once or twice. I seem to be stuck in a crying thing now and cry at least once a day. Is this why I am dehydrated?
What I am trying to say is that often conditions, disability conditions like CFS/ME, Lupus, Lymes, other Auto-immune disease, MS, cancer, and a lot of others have side effects into the “unspoken area” of bodily function. And if there WAS accommodation and acceptance then there would be more trying to understand and make a person feel UNashamed instead of the HR person saying to the person with irritable bowel, “We are giving you the desk nearest the bathroom because of……well…..you know.”
So apparently this blog post is about taboos, but if it is, it is about taboos that happen every day, from spasticity to facial dropsy (nothing as humiliating/amusing as getting a muscle spasm while serving in badminton and your birdie ending up a full court away LATERALLY - just have to laugh and say, “Um, that one got away from me….like 40 feet away from me.”)
I think I am lucky that my first experience with peeing myself was after a seizure at the pool. I was rag doll limp and that feeling like, um, lava rising came and there was NOTHING I could do and I whispered, “I think I am going to pee.” The lifeguard said, “No worries, that happens here ALL THE TIME.” And I thought, ‘true enough.’ Changed one of my most embarrassing moments to something that was almost ordinary.
My most embarrassing moment? Finally able to meet Linda’s co-workers at her Xmas dinner, only they decided to host it at an inaccessible house. Four men carried me in with female managers calling out instructions. Not subtle. They had three fireplaces going. The only table was the buffet table. That is where I had to eat. Linda had to cut up my food in front of her colleagues. Few to none would talk to her, but I could here them talking about me, the whole, “Did you see that?” and “Poor thing.” And “Like having a child.” As the heat built, my face started to dropsy, my speech became slurred. The very few people who tried to say hi to Linda she introduced to me; and got me trying very hard to be interesting and lively and instead I was slurring and un-understandable, spitting and hissing as my tongue was stuck to the right side of the mouth. Linda at several points had to wipe spittle or food off of my chin.
I will not forget my feelings amidst this group of people who were all about money and power and “up, up and up” and working for the government. I was not just the poor relation who arrived on someone else’s coattails but I feel deeply, like I felt no where else, from many of the people that if Linda has REALLY cared about me, she would not have brought me at all. I was not fit for ‘polite society’, I was not something…sorry, I mean someone who could not likely understand what was going on around her much less participate. That was my most humiliating moment.
If you don’t want to talk about what it is like biologically to be YOU, okay, but I have “bared all.” So if you will, I don’t care if you are able body and finding it takes you longer to pee and adjusting to that. Or if you are hitting menopause in a society where women in the workplace should be consistent and stable at all times (or not be there at all!). Do you have to take insulin, and have to sneak off for that, or other medication? Does your irritable bowel mean you know exactly how many minutes every toilet is from your house (I went through that!)? I guess what I am saying is that you don’t need to feel alone or ashamed, because I am learning NOT to be ashamed, because I AM disabled, and that doesn’t just mean using a wheelchair, it means a whole lot more. And here, if you want to talk, I don’t judge (hey, I am the one packing ANTICIPATING for peeing myself, to know I will drool on myself, I have hair on my face – but I WILL kill it, so either you can, like everyone else, turn away and pretend I never spoke at all or…share?).
13 hours ago