On Saturday mornings I swim. Water is the great equalizer. When I swim, vision and hearing don't matter. I have to remove my hearing aids, and I am deaf with only a muffled ambient noise to even barely remind me that I'm still amongst other people. I get about 1/6th of the pool to myself. I have my own lane. The ropes that separate me from my neighbors' space are usually not visible to me, but they don't need to be. If I stray too far out of my alloted space, which I don't often do, I will be gently and tactually reminded that I need to move back to my center line. Vision and hearing are not required to swim, I suppose unless you want to be Olympic level competitive.
I'm not a great swimmer. I don't breath right; keeping my head above water most of the time. I'm not all that fast and I can't do the fancy turn around at the end of the pool and seamlessly continue my stroke. I stop and turn around abruptly. Or sometimes even stop and rest for a few breaths, then turn around and continue on. There is often a woman who swims next to me each Saturday. We smile at each other and then go about our own business. She is better, faster and stronger than me in the pool. She can swim longer. She is what I guess you would call morbidly obese. She works her ass off swimming whereas I'm satisfied to just keep my body moving in some fashion for as much time as possible in 30 continuous minutes. Usually there is at least one or two hotshots in one of the other lanes. A young man, good looking, great body. A serious competitor with his goggles and his swim cap and his speed and power and fancy turn-arounds at the end of the lane.
What interests me is that we all have the same right to swim in the pool. We all have equal access to our lane no matter what our ability level or economic level or whatever else. We are all stripped down in swimsuits. Sure, I guess there are high-end brand swimsuits as opposed to my generic blue tank, but who cares when you are under water? It is not like upstairs in the gym, where people's level of status can be seen by their shoes and they gym bag and their iPod and the car they walk out to in the parking lot.
So the studly swimmer and the obese lady and the deafblind girl all get their own equal lane, marked by a row of floating beads that barely touches the surface of the water. The beads are just sort of an illusion that tells us we have our own independent space. Just under the surface, we are all in the same water. I feel the ripple effect of the woman swimming next to me as her arms haul her over-sized body through the water. I have to temporarily work a bit harder to get through her wake. Sometimes I can ride along the wave of one of the other swimmers as they push off the edge at the same time as I do. We each help each other with the momentum of our shove-offs. But we act like we are totally independent of each other.
Swimming carries with it a certain responsibility. There are signs all over that warn you that you are swimming at your own risk. If you jump in a pool and plan to swim across to the other side, it is understood that you actually have the ability to do that. Although I am not a great swimmer, I can swim good enough to not put myself in too much risk. I know that if I suddenly tire in the middle of the deep end, I can flip over and lie back and be held by the water. The same thing that endangers me also keeps me safe. But usually, there is no such drama and I swim an uneventful swim while sorting through stuff in my head. Which problems are real? Which fears are potential fears? And which are only imagined?
Today I was thinking about a moment yesterday afternoon. Trying to sort it out into "real problem", "potential problem," or "imagined problem." I was physically and emotionally exhausted, having had to work on a lot of things this week involving D and his situation, a fiasco involving my kid's health care, and having to find a home and say goodbye to D's beloved "black cat," while dealing with the minefield that is living with my dad right now. At this particular moment yesterday, I was sitting with my naked and crying son on my lap while trying to call his doctor. He woke up yesterday with infection-smelling pee, and spend the day irritatedly grabbing his penis in pain. Urinary Tract Infection, I thought. I spent the day constantly shoving cranberry juice down his throat and giving him hot baths. I had taken him out of the tub and put him, naked, in his crib for a nap to try and let his diaper area air out, but it wasn't working. By 4:00, he had not slept, he was crying and still in a lot of pain. I tried to assess what to do, try to wait it out and see if it improves? Take him in right away and risk a potential problem with his medical insurance? (more on that some other time, I promise.) So I decided to get some advice from his doctor to help me make the decision. During this, my father comes up and notices an empty Pepsi can on my desk. He does not notice that I'm on the phone or that I have a naked, sick kid on my lap. He notices the Pepsi can. He has told me not to drink his Pepsi and to get my own, which I did. This Pepsi was from several days ago. Suddenly there is a crisis about me drinking his Pepsi. It is just one of several.
There is the Tupperware I did not put away. There the fact that I bought too many gallons of milk(2) and it is taking too much room in the refrigerator. There is the issue with having to buy his and her food because I'm not allowed to eat his, but my food taking up too much space in the refrigerator (remember, I feed four people to his one, but apparently he still gets dibs on all the fridge space). There is the time I absent-mindedly got a cup down from the cupboard and made some tea, not realizing that I had used a cup designated only for him. I had to hurry up and wash it and put it back before he saw me. Then I ate a few of his nuts from a large canister. I'm not a huge nut eater so I don't think he would have noticed the difference in the amount, but he caught me so I was busted. There was the fact that I had to get myself and my kids out of the house Saturday morning so he could clean. There is the portraits that he wants me to get of the kids and him, but he doesn't want me in the picture. There is the cat. The cat that lives at D's house that he never saw that he bugged me forever to get rid of because, as he tells me every chance, D isn't going to live much longer and I don't want all three of those cats in my house after he dies. (This is not the reason I found the cat a new home, there were other reasons. But it was sad for D and I and I really didn't need this kind of commentary the whole week while I tried to deal with it.) There was the mulch, the Mulch, THE MULCH that I had to hear about all week and nothing could interfere with the project of re-mulching. There was the baby bottles that were taking up space in the cabinet that he wanted me to get rid of. There's just a hundred rules that I have to keep straight in my head. It is hard to be a single mom alone in the house with the responsibilities of your kids sometimes. But it is not near as hard as being alone with my responsibilities with my father in the room adding unneccessary conflict. I'm just exhausted.
While swimming, the categorization of my problems seems clear at first. The "real problem" was that my kid was hurting. The "potential problem;" the one that I have to consider but can't get overwhelmed by, was how the timing of getting potential care for Aaron might affect my insurance mess. It turned out, that with a phone call from the nurse reassuring me that I could wait a day or two and see if he improves, and the fact that he did seem to improve took care of those problems.
And what of the Pepsi can? That is an imaginary problem, right? Like all my father's nanocrises, imaginary problems can be discarded and ignored. I can respect the fact that this is a real problem to my father and not drink his damned Pepsi anymore, and either try to shove my diet coke into the refrigerator somewhere or go without. Easy enough. Or I could take a stand! Demand equal rights for his and her soda products! But that sounds exhausting and time consuming. And what do I care? I don't need soda that bad to think about it this much.
I swim my laps and think about the sign, "Swim at your own risk." But do we really? I mean, if suddenly, I or the lady next to me were to have some kind of trouble and start to drown, would we not help each other? And haven't we collectively used our resources to pay for a lifeguard to help us in times of trouble? Why do we know that we would try to save the stranger sharing our water from drowning? Besides that we are conditioned that it is the right thing to do, we do it because we value all life, even if we don't personally know its value. Someone loves that fat lady next to me, despite the many who must discard her value because of her weight. We know that, even if we don't know her. We know somewhere that, like her wake that I ride in the water, helping her helps us. She is valuable to all of us, and I am valuable to her.
What a nice rule, I think as I swim. If only life could be more like swimming pool rules. You need to be able to hold your own if you get in this pool, but if unexpectedly you can't, we will help you. But then I remembered the one time I tried to save someone who was drowning and no one else thought she should be saved.
When D and I were at KU, an old high school friend of his called. She was working at a residential institution for developmentally disabled kids. It was a minimum wage, summer job for her. She told us that a girl had drowned in their pool and died. She said that, although she was not directly responsible for supervising the swimming girls, she was in the pool area and was talking to the co-workers that were responsible. They were in an office next to the pool. It had a window that you could look out of and see the pool, but she said no one was paying attention to the girls, all around 10-12 years old and mentally retarded, when they noticed that one girl was floating faced down in the pool. The girl died, and D's friend felt bad about it. She didn't know what to do, because the other workers she was with wanted her to say that another resident pushed this child down into the pool and before they could stop her, the girl drown. D encouraged her to tell the truth. I got on the phone with her and encouraged her to tell the truth. OK. I only talked to this girl once, but she was a messed up girl. It was early August, and she was worried that if she told the truth she would be fired from her summer job. I told her to quit. Then tell the truth. She said she couldn't quit, she needed the money. I told her to go work at McDonald's or something for the month. She said McDonald's was for losers. Then I laid on her that I was a mandatory reporter and I was going to have to tell the authorities what she had told us. She pretty much cussed me out after that. I didn't care.
To make a long story short, I got the university and some of my special ed professors involved, D and I were deposed and subpoenaed, and the accused mentally disabled girl was tried and convicted for second degree murder. D's friend never told the truth and D's and my statements were ruled inadmissible due to hearsay or something. This girl, already a ward of the state, was to pretty much be sentenced for the rest of her life to institutional imprisonment when as far as anyone knows, she may have tried to help the drowning girl.
What amazed me most about this incident, was that everyone, EVERYONE except for D and I and my professors who tried to help the girl with legal representation but were denied, was in on this conspiracy to sacrifice this girl. The school, the workers, the DA, the defense, the state, the judge did not question putting the blame on an adolescent developmentally delayed child who should have been supervised. No one wanted to save her. Not at the possible cost of facing some (probably minor) consequences to the institution. No one was willing to throw that girl a rope or jump in on her behalf because they didn't see her life as having value anyway. As far as I know, she is still institutionalized with a second degree murder rap to follow her to each placement throughout her life.
I wondered if hot guy and obese lady and me were all in the pool drowning together, who would be saved first? This is exactly the question that is right up my sister and father's alley. They sit atop the tower of entitlement and white privilege and contemplate actuarial stats about those below. Lisa, would you rather be totally deaf or blind? Lisa, who is worse off? You or D? Lisa, who is worse off? D or Christopher Reeve? Lisa, I don't think Russian athletes should win gold medals because they don't earn as much as Americans as pros. Lisa, If mom can't function higher than a first grader because she just had brain surgery a week ago, she should just die now. Lisa, if you are so bad off you can't pull your weight, go to a nursing home. Lisa, D has no quality of life, why don't they just give up on him? Lets stack everyone up according to worth like some sort of Monopoly game. And worth is determined by our currency which always put us at the top. Nice clothes, cars, CPA jobs, big screen TV's, hardwood floors, iPods, diversified portfolios = value. My strengths, such as working things out so everyone is included, living simply, sharing, empathy, mothering = weak or invisible and not of value.
My house, the house that I fancied in my mind that my mother's love built, the house with her name and a love note from me etched into the studs, my house where my children were born and call home, the house I so wanted to be a home that stayed in the family for at least my kid's childhood, if not for generations, is nothing more than a stock, a real estate investment for my father. He who said I can live here after he goes if I can pay my sister her share also gets excited at every prospect of how much he could make if he sells it. The floor beneath my feet is not sturdy beams and studs; it dissolves into unsure and slippery deep water. And I can't seem to swim because there isn't enough room in the refrigerator and I use the wrong cups and I don't do my laundry fast enough and my kids drop too much food on the floor. I am drowning.
Would my father and my sister save me if they were standing right above deck here while I swim my laps? Probably. But at a great price. They would do it for appearances and I would never be allowed to try swimming again and I would always be reminded of the time I stupidly thought I could swim but they had to save me. Does it matter why they did it as long as I was saved? I don't know. Would a man risk being rescued if he knew that his rescuer would require he indenture himself to slavery and abuse the rest of his life? Or would he die instead? Maybe that is too dramatic, but what is not is that at the cost of putting myself in a position to be helped by my family, I am participating in the myth that my life is of less value than theirs. Money is value and I have not enough to buy this particular house. That means that I am always to be subjugated to the rule of Pepsi cans and clean coffee cups.
Did I ever mention the kicker? Did you know my sister lives in my father's house (in Kansas) as well? She has a similar deal as I do. She pays some amount of rent that I believe is similar to my own. She moved in with them when she lost her job do to her company closing that particular branch. She could have transferred, but she chose to stay and move in. Shortly after, my mother became ill and my sister stopped her job searching efforts to care for her. During that time, she lived there for free. That is fine, of course. It is reasonable to cut her a break when she loses her job and she cares for a sick family member. It just wasn't reasonable when I lost my job and cared for a sick family member. That was of my own doing. (Sick family member being D.) My father and sister have lots of ways to rationalize away being responsible for sharing themselves with people. I suppose it would only be okay if D were going to die within the year, nobody in their right mind sacrifices to take care of someone long term. Besides, the difference is, my sister probably Could pay for that house if she had to, she is just taking advantage of cheap rent. When she does it, it is smart and frugal. When I do it, I am a leach.
Sometimes when I talk to my family it is like talking to someone with a disability who doesn't realize they have one and does nothing to accommodate it. D's and my impairments are obvious. D is missing the use of his feet. He is unable to control his bladder. I am missing the use of much of my vision and hearing. I am unable to drive. With them, it sometimes seems like they are missing the use of their humanity. They are unable to control their privilege and need to control and judge others. In my father's case, he is unable to control his anger.
But you know what I think it really is? Since swimming laps has been so easy for them, and they've never been exhausted or overextended, they've never come close to drowning. They attribute this in an entirely Calvinistic and meritocratic sense to their own self worth. They are good swimmers because they work harder at it than anyone else, even though they hardly got their pinky toe wet in the pool in the process. They don't think it is possible for them to drown because they don't deserve to. And they don't think that people would really be there to help you if it was, for they know that they aren't willing to be there for others. Reassurances of help are met with suspicion and disbelief. They almost find it insulting, as to be in a position of help would imply that they could fail. So they don't see the need to step out of themselves and bother with helping someone who has been exhausted or overextended. Those people who can't swim as well as them just aren't valuable enough to save. They should get out of the damned pool. The impairment is that they don't know that one day they will get exhausted and overtired. One day they will need help. And what they don't want to believe is that one day, someone will help them. Making no judgments and wanting nothing in return and not taking anything away from their person-hood, someone will help them. It will probably be me.
So, what seemed to be my least important problem, imaginary stuff like drinking a Pepsi, is actually probably my most important problem. It isn't about Pepsi and coffee cups and Tupperware and refrigerator space, it is about trying to swim while being pushed into the water by someone who wants to make sure I know my place and I am devalued. This house is not my life raft, it is my raging river. If I am not careful, I will take my kids down thrashing with me.
At some point, I worry that my kids will likely depreciate in my dad's eye. They will not be so cute and physically and emotionally perfect. They will become awkward tween-agers and maybe gain some weight or have zits or prefer ballet to football or boys to girls or become a peacenik or date a girl in a wheelchair or a fat chic or be a goofy goth kid or get into trouble for skipping class to go to something like dungeons and dragons instead of some more manly thing worth skipping class for or become one of those virgin pledgers instead of going out and getting some action or god knows what. Or worse yet, only one of them will depreciate, like what happened in my family and then will face constant comparison to the other. Or maybe it will be as simple as one of them eating the last apple and getting yelled at by my father that will send them drowning.
So there is a plan to find calmer waters. It is going to have to have several steps and it is not something that I can do instantly. If I try to get out of these waters too fast, I'll end up thrashing around and drowning in my own panic. But I think it is possible before they get old enough to really feel the effects. It is not so much about pulling myself up by my bootstraps, although there will have to be some of that. It is about finding the kind of environment where my value is appreciated and I can excel at what I do best instead of being shoved into the face of what I can't do. It is having to fight this feeling of worthlessness that interferes in being able to succeed. It is making sure my kids and I are around people who know this is all about doing your best so that you can help each other out. People like Nik, who say, "If the shit hits the fan, Lisa, I will get you into Canada." Or even Shannon, who says, "You have friends that will never let you be homeless." These people, who carry around these life vests are the ones I want my children to know. These are the people who motivate you and make it safe enough for you to go out and do some bootstrap pulling, if only so you can have a spare life vest for them as well.
Before I do my lap swimming on Saturday morning, I get into the pool with the kids for their lesson. I want to teach them to swim on their own. To feel the freedom and weightlessness of the water. To know that you don't need vision or hearing or even legs or money or an iPod to stay afloat. Aaron already swims about as far away from my hands keeping him aloft as he can without letting go. Aaron, who I always thought was on his first life in reincarnation terms, has no idea the dangers of the water yet. It is all good fun and of course mom will protect him until he is ready to let go. Naim is more unsure and clings to me. He knows the danger of the water from some other memory that I am unaware. Naim has been here before. For Naim, the lesson is not so much to learn to swim yet, but to trust me enough that I am going to allow him to learn to swim without losing him in the waters below. For now, that means he knows I will hold on to him no matter where the water takes him. For both of them, the lesson of the water is to venture off and swim, trusting that someone will jump in and save them if they need help.
Lie back, my child. Let your head
be tipped back in the cup of my hand
gently, and I will hold you. Spread
your arms wide, lie out on the stream
and look high on the gulls. A dead
man's float is face down. Look up!
Your compass lies not in the dark sea,
but in the indigo sky.
Lift your breath wide and free in your chest.
For those who collapse small and hidden,
Will drift to the bottom of their own fear.
And you will dive
and swim soon enough where this tidewater
ebbs to the sea. My son, believe
me, when you tire of the long thrash
to your island, lie up, and survive.
As you float now, where I held you
and let go, remember when fear
cramps your heart what I told you:
lie gently and wide to the light-year
stars. Lie back, and the sea will hold you.
(The poem is something I adapted from a woman's blog on the internet. Her blog is no longer active. If you know the source of this, let me know and I'll give proper credit.)
This sounds so hard for you. I'm so sorry that your family don't cheer you on and let you know how amazing you are, that they just spend so much time telling you what your problems are. You deserve to have a family who thinks you are incredible.
On a lighter note, you said "Vision and hearing are not required to swim, I suppose unless you want to be Olympic level competitive" - did you know that a deaf man won a silver medal for breakstroke in the Olympics in 2000? http://en.wikipedia.org/wiki/Terence_Parkin
Posted by: hingly | July 29, 2006 at 06:55 PM
I am constantly amazed by how brave and strong you are.
Posted by: | July 29, 2006 at 07:34 PM
Wow. One of the best posts I've ever read from anyone. You are amazing....I wish everyone in your life could see that.
Posted by: Amy T | July 29, 2006 at 09:09 PM
I too, am constantly amazed by you. I am so sorry that everybody does not see that. It's not fair, and yet you don't sit around saying that is not fair, you constantly try to better your situation. It is very inspiring to me. I loved your ideas of what the boys might turn out like as well..isn't it funny to think what kind of teenager/grownup your kid might be?
Posted by: baggage | July 30, 2006 at 09:34 AM
i love the way you weave perspective into your writing. you should get a book deal. you could write autobiographical, education-related, parenting, etc etc etc. talk with friends who are (or know people who know people who are) in the writing and publishing business. twisty?
contact specialty publishers... feminist, disability studies, education, social justice, etc.
i tried posting a comment with links to publishers but perhaps it got flagged as spam. i'll see if i can find the links again and email you.
you have so many talents. why not make a living at one of them? if you're self employed no one can give you the disability runaround (you're overqualified, the position is filled, etc.).
Posted by: marisa | July 30, 2006 at 02:35 PM
You make me get things I didn't previously get.
Posted by: Auspicious | July 30, 2006 at 09:27 PM
Im so glad!! If there is anything I can do to help you out of your raging river please let me know. If you lived around here I would happily let you live with me - the best I can offer is that you always have a place to stay if you want to visit the East Coast.
But if there's any way I can help you do one of your steps please let me know!
Posted by: That Girl | July 31, 2006 at 09:20 AM
I wonder if your family structure would be different if you had no issues with seeing and hearing? Lots of dysfunctional families pick someone to scapegoat. They are using the disability as their "reason," but someone in the family has to be the focus of the pain/anger they don't want to acknowledge, and you got picked. I'm not sure what I'm trying to say, but something to the effect that I don't think it's all about disability. Disability adds a big complicated layer, but they sound like toxic people, period.
Posted by: cherylc | July 31, 2006 at 01:10 PM
I want to comment, to acknowledge what you have said here, but I'm not sure what to say.
Your sons are blessed to have you as their mom.
Thank you for your writing.
Posted by: Amanda/Mayhem Mama | July 31, 2006 at 08:59 PM
That was so beautifully written and so insighful. It made me shake with anger at the unfairness of it all. I'm sorry for what you are going through and how you are being treated. I think you are wise to do everything you can to remove yourself from that situation and hopefully forge a relationship with your dad where he doesn't hold all the power. If I can help in any way, please contact me and let me know.
Posted by: Emmie | August 01, 2006 at 06:52 AM
no words I write here will do this post justice, but I wanted you to know I read it, appreciated it and by some weird twist of whatever have taken something wonderful away with me.
You are an amazing woman and while I mostly lurk here to read I am always astounded by the quiet strength you possess. I'm not glorifying you I'm applauding you.
Posted by: Jennie | August 06, 2006 at 02:35 AM