Finding Mom, November 2, 2004 (written 2008)

Ugh! Light! What time is it? I pry my eyelids apart to look at the clock. 7:30.

You should probably get up, my responsible conscience tells me, ‘and get ready so you can go vote.’ It’s November 2, 2004 and all of the Political Science classes have been cancelled for the day to encourage voter turnout.

I should get up, I think, even as my consciousness slips under. I know our government requires responsible citizenship to function at its best. I know it’s said that you can’t complain if you don’t vote. I know there are many third, and even second and first world countries that do not have the political freedoms we have available to us in the United States of America. I know. Too tired. I can go after school. And so I sleep for another hour. After all, you don’t have to be first in line to be responsible. I have been excited to vote, though – this will be my first presidential election.

An hour later and I make myself get up. I’m still exhausted, but that’s nothing new: 15 credit hours at the University and either burn-out or let-down in every other part of a life can do that to a person. Fiddler on the Roof had ended mid-September and that had been my escape.

‘Escape?’ you ask. ‘Escape from what?’ Escape from the responsibilities of the eldest and the unreachable but still required expectations of the father. Escape from the diagrams keeping track of how much of the house still needed painted. Escape from keeping the house immaculate for sale so that we can move to a house that doesn’t have so many stairs so Mom can use her wheelchair. Escape from the sale that fell through taking my hopes of relief with it.

Escape from the schedules compulsively drawn by a psyche overwhelmed with responsibility placed in the same time restraints all others must live under. Escape from a mother’s many debilitating illnesses, her resulting dependence, anxiety, and depression, and the strain of being the dependable turn-to for everyone needing something and everything needing done. Escape from my dependability being expected, demanded, but never appreciated. Escape from Mom’s whimpering and moaning when the pain was too much and knowing there was nothing I could do to take it away. Escape from the panic that I wouldn’t be able to maintain it all taking the rest of the energy I didn’t have to keep the panic at bay.

But the show was over and there was no escape. Religion brings enough relief to continue, but Dad’s attacks lessen what relief it could give. I am an active member of The Church of Jesus Christ of Latter-Day Saints, more commonly known as LDS or Mormons. So is my Dad. But where I took refuge in going to church, activities with my singles' ward (read 'geographic congregation' for 'ward'), and would spend what free hours I could at the Institute building (a religious education system the church provides as companion to higher secular education), Dad sees my activity only in regards to and as intended commentary on his own scattered attendance. "You think you're better than us because you go to all your meetings, but you're just a self-righteous, hypocritical Pharisee and you know what the Savior thought of them!"

No, there was no escape. While Mom was sick, my personal purpose, and therefore my identity and resulting satisfaction, would be found in knowing I was doing everything I could to limit Mom’s difficulties so she would have the energy to fight on. Meanwhile, I too must fight on.

I take a quick pit-stop in the bathroom and then head downstairs to grab some breakfast. J’s already up and watching cartoons from the daybed Mom used to occupy before she moved upstairs permanently. J’s ten and the youngest of the four girls. Her track is off in the over-crowded year-round school system remedy which means I don’t need to worry about getting her there.

I head back upstairs to take a shower. I glance into Mom’s room and notice she’s sleeping. It looks like she fell asleep while stretching her back – mid-twist. I consider waking her since her position is sure to cause soreness later, but decide against it. Sleep has been difficult for her to come by of late and if she’s able to sleep, it is best to let her. And so I shower.

I love showers. I love the feel of the water in constant rhythm against my skin, washing everything away. I love the smell of the soap that makes me imagine I am somewhere far away myself. I love the smell of the shampoo and conditioner, too: ocean breeze. I’ve only been to the ocean once, but I remember how big it was, the smell, and the feeling that I was on the edge of the world and that all I had to do was step across that edge and I could be anywhere. Yes, I love showers. It is good that the water heater is limited in size for life cannot be lived in a shower.

The shower’s over and I finish getting ready. Mom’s still sleeping. I go downstairs and pull my backpack together. J’s watching Scooby Doo. She’s wearing her purple bathrobe and her Scooby Doo slippers. She says she’s already eaten. I ditch my bag on the piano bench by the front door to wake Mom before I leave. She’s been in the same position for too long – she needs to move so the pain will be limited. Hopefully the pain won’t be too bad, but she needed the sleep.

I stand at her door and call a few times. She really must be tired. I negotiate my way to her side of the bed and gently shake her shoulder. She is twisted to the right with her left arm stretched across and her face hidden in her right arm and under her hair. She does not respond.

“Mom? Please wake up – you’re scaring me.”

I’ve had CPR and First-Aid training many times. I know that you’re supposed to try to get a response. If they don’t respond to normal sound, you try physical touch and calling more loudly – in their ear if need be. I choose proximity to decibels, mindful of J downstairs. No response. My pulse quickens even as it runs chill. I circle to the other side of the bed to try shaking more directly. Still nothing. My mind catalogs the details that she’s cold and stiff and maybe even blue but I force them under lock and key: I am not a doctor and I know high anxiety can be the cause of mistakes. I search for a pulse and find none. It was never this hard to find during certification, but then again, I was never trying to find it under mounting pressure.

I spend a minute debating inside whether to bother Dad or not. He left early this morning to go back to Jackson Hole to finish his repairs. I’m wary of calling 911 for the same reason. What if I’m missing something? What if I make a big deal out of a little thing and add more stress to everyone’s life – be it in bothering Dad or an ambulance and emergency room bill and then find out it isn’t anything to worry about? Heaven knows we have enough medical bills. I decide to call Dad and let him decide.

He answers and I tell him I can’t get Mom to wake up. He says to call 911 and to call G. When he asks, I tell him I hadn’t before because I was afraid I was missing something that meant it was ok. I think he hears the repressed panic in my voice. He says, “Call G, call 911.” I am confused. Which one do I call first – he gave different orders. Dad is frustrated. “Call 911 first, then call G.” He hangs up so I can call 911.

“911, what’s your emergency?”
“My mom won’t wake up.”
“Where is your location?” I give my address. “Is she breathing?”
“I can’t tell. She’s rolled over. I don’t think so.”
“Roll her onto her back.”
“I can’t. I never could on my own. She always had to help.”
“Is there anyone there with you?”
“My little sister’s downstairs.”
“Have her help.”
“No. She’s only 10.”
“Well, if you’re not going to cooperate, there’s nothing else I can do. The ambulance is on its way and should be there shortly.” She hangs up.

Now to call G. G. One of Mom's friends. She had been, and maybe she still is, Mom's visiting teacher (read a buddy-system in our church's women's society) and is one of the few who have been at ease with Mom and her sever illnesses, having one herself. She's a tiny little woman with a whole lot of heart. Call G. I don’t know her number. I can’t find Mom’s ward directory by her bed. I look in the kitchen and at the desk and still I can’t find it. I ask J if she knows where it is. She looks, I look. I freeze when I see her coming down the stairs with it in her hand. I can’t tell her – she’s only 10. I can’t tell myself – this is my whole identity.

I call G. I tell her Mom won’t wake up. I tell her an ambulance is coming. Can she come over? She says they’ll be there in a minute. I call Sister F, too. She brought her puppy over once to visit with Mom. I think she’s the Relief Society President. She’s not, but she says she’ll get a hold of the people who need to know.
I hear a knock. It’s the first EMT guy. That was fast. It had only been a few minutes. I hadn’t heard a siren. J’s still watching Scooby Doo and doesn’t even notice as I lead him to Mom. He throws the bed-side table down the walkway so he can get to Mom uninhibited. I crouch to pick up the laptop and get everything out of harm’s way. I stand in time to see him roll her over. I see her face and the lock-down is complete. Her mouth is stretched into a grin and there is a purple pooling around her cheeks and nose as though blood had settled underneath the skin. The EMT sees my face and makes me leave. I have to stay downstairs, he says.
More EMTs come up as I go down. G and her son, Z, squeeze past with the group. J is starting to notice and wants to know what is happening. Dad calls back and wants to know what is happening, too. I tell him the EMTs are upstairs with her. A police officer is there and I pass the phone to him. He tells Dad that there is no word yet. Dad is coming home. I don’t know what G tells J. Maybe the officer talks to her.

G asks if she can get me anything. I tell her I want my quilt. I tell her they said I can’t go up there. She sneaks up and gets it for me. I wrap it tight.

More people come. Relief Society sisters, the home ward Bishop - Bishop S. Sister F must have called them. Uncle S and Aunt T show up, too. Dad must have called them. My Bishop - Bishop U - and his wife come. I called them.

The EMT comes down. “I’m sorry,” he says. “We did all we could. She was already dead.”

Somebody holds J.

The police officer tells us they have called the mortuary. We can go see her one last time before they come for her body. I am afraid. The church support group says I should not be. I want them to see the death mask so they will understand. We go upstairs. Mom is lying on the floor next to the bed. A blanket covers her so that only her face shows. The blood pool is gone. They don’t understand. The mortuary comes and they make us, me and J, stay downstairs while they take the body. Someone stands in the way so I won’t see anything through the railing.

G asks if I want to sleep. I don’t want to close my eyes. Dad calls back. I think Uncle S tells him, maybe Bishop S. Bishop S decides to take Z to go meet Dad so he’s not driving alone. The Relief Society sisters ask what they can do to help. My mind is blank. We’ve taken care of everything for so many years and we’re good at it. Nothing much needs done. I remember the potatoes I’ve been meaning to harvest for weeks but haven’t had the time or energy to get to. The sisters are pleased to have something to do. I get the garden tool box from the garage and they go out back.

The police officer is about to leave. I think he gives his contact information to G. He gives me a hug and says good-bye.

I’m on the front-porch. My blanket is around me. The day is as calm and unruffled as the blankness inside. I wander across the yard to look through the fence. The potatoes are small but numerous. The bright sun is warm through the blanket.

Uncle S and Aunt T take J and me to the high school. We have to tell M and S. Lunch has just started. S had said her locker was upstairs. I go and see her coming. My face tells her before my voice does. We look for M but can’t find her. We go back to the office. They let us use a back conference room. Someone brings us simple snacks while we try to determine where M is. I go to the choir room – sometimes she spends lunch there. They don’t know where she is. I go back to the office. I stop at the attendance desk. Since Mom’s dead, she can’t be the emergency contact. I have them put me down instead. I go back to the conference room. Somebody found M and now it’s time to go. The secretaries tell us not to worry about the rest of the week.

S and T take us home. The others get their blankets and then S takes us to their home. The sisters sleep. I pretend to. Grandma has come. Maybe I do sleep. Dad comes. He laughs that Bishop’s van broke down and he ended up giving them a ride back. The night is dark. Eventually we go home. Exhaustion conquers all.

***
I had known that Mom would die. It only made sense. As the stress on her systems was magnified by the layered illnesses, it was obvious that, at some point, it would be too much for her body to maintain. I’d just thought it would take two more years. It was months before I finally realized why. There was no logical cause for the connection, but it held. I remembered that cause when I revisited the J. K. Rowling web-site. That summer I had read her autobiography that she has on the site. In it, I had been stunned to learn that Rowling’s mom had also had Multiple Sclerosis. She had died at the age of 45. Mom was 43. I remember thinking, 45. Two more years. I can’t go on forever, but I can do two more years. I was trying to fortify myself to face it.

***
It has been nearly four years. Mom’s death has become the time-central event in my life. Just as history is marked forward and backward from Christ’s birth, so I mark time with Mom’s death. “When did (this) happen? Mom was alive, so it was at least this long ago.”

***
I remember asking Dad what my new role was supposed to be. He was confused. I explained that before, it was to take care of Mom. Dad got mad. He said that it had been his responsibility to take care of Mom. He seemed angry that I should have any right to that claim. He did not give me an answer.

For years I saw myself, my identity, as broken, shattered. I am now learning to be myself and have been happily surprised to find I enjoy it and others seem to as well. It has required I stop talking to Dad and that I not let him talk to me. There has been much difficulty, but I sense that things are now as they should be. And I am coming to know hope. Sometimes I am still tired, but now there is hope.

***
Mom’s parents are still alive. Dad’s parents are still alive. My step-mother’s parents are still alive. Most people’s are. Instead, I have pretend moms. They are women who have known me and somehow love me. None of them are always there, but between them there is almost always someone. There isn’t the strength of blood, but it helps to pretend. And I have found family in church: siblings, parents, now even grandparents. Perhaps I can never return to the home that was and was not, but I have found welcome in many hearts around me. Perhaps they can be home.

I still spend many free hours at church and Institute. It is no longer serving double-duty as a life preserver, but has returned to its standard place as center of my life. I have learned that it is unwise to take Dad's pronouncements of the Savior's opinions of me as factual, and have found great relief in simply living my own life as best I can and trusting Him to see and judge fairly.

November 2, 2004 was a death blow to a floundering child's prayer for a happy, healthy home and family life. But it also cut the strongest string tying me to an unhealthy situation. What was is dead, and at times I still mourn that death, but I would not give up the life I have found growing in its place. Mom's life slipped beyond the mortal realm that day, but now, here, mine is just beginning.

***

November 4, 2008 is coming up. I am excited: it will be my first Presidential Election.

"That there should be no schism in the body..."

I have clearly been remiss in keeping up w/ the blog. Truth is, I have been greatly preoccupied in considering an upcoming move, overwhelmed with an influx of the neighborhood garden excess (somehow I'm a critical step in the off-loading process even though I'm harvesting from a simple garden of my own...), and dealing with exhaustion in general from a continuing valley in the overall health state. Writing just hasn't been the highest on my priority list and trouble concentrating beyond the rest has left me with insufficient brain-power to care to focus on any blog-post subject for the time it would take to get one out.

After a couple more big cooking projects to try to use up some of the monster zucchinis that keep showing up on my door-step like morning manna, I'm also quite exhausted today. I'm supposed to be more careful with how long I stand, but between the zucchini recipe and the cookies (hey - after all these veggie dishes, you'd want a treat, too) I kinda pushed the limit. After the previous veggie cook-up (14 cups worth!) I was out of it for two days. Actually fairly out of it right now - you just can't see how many times I zone out while typing before posting.

So why am I sharing the personal? Why am I showing how even a basic project for a few hours (I'm following instructions after all) leaves me so wiped? Why am I even telling you that my life is so limited by health issues that the doctors can only recognize but can't explain or fix? Issues that almost have me house bound. Why even tell you something like that? Why presume you'd even care to hear about it?

Believe it or not, there is actually a purpose. I'm hoping I can focus well enough on it even now because it's a thought that's been percolating in the back of my mind in general and directly applicable to what's been going on in my world of late.

As I said at the beginning, I'm preparing to move in the next couple of months. I have some basic ideas to what I want but I'm not completely sure how to make it work (Heavenly Father will have to do that) or what/how I need to approach it to get what I want out of the move. I don't want to be so isolated anymore but in a ward full of grandparents and in the city of the hated past where I'm always on the watch to avoid interactions with people who'd unknowingly stir it back up, I'm kind of living in my own quiet corner, keeping to myself. But I don't want that to be my life for the foreseeable future.

I want to have people my age to interact with. I want to be close enough to activities and life so that, finally having friends again, I can have to support to be part of life again. I want to be in a situation to try to follow my dreams even though my health's such an unpredictable roller-coaster I can't really guarantee how much I can do or when I can do it. I want to be able to make a difference in the world, see the world, and reach out to people with truth through story and the gospel and I can't bear the thought of sitting around waiting for the doctors to figure it out before I start. I've had blessings say they'll manage it and fix it, but I've finally realized that none of them said when that would happen.

And so it occurs that maybe I can find a place to volunteer. Maybe, by not being an employee, they won't have the pressure of expectations for pay and I won't have the pressure of trying to meet them even if I keep crashing and have to rest. Maybe that will mean they'll have patience with the fact that I don't know much about the film industry and so I can pick things up until the docs do get it straightened out. And then I'd have experience and contacts/references to help me move forward with actual employment.

Only, I've been having enough trouble that I've needed help getting home from church next door one out of every two weeks. I have things I need to do before moving and I don't have enough energy or focus. I don't want to bother people needing enough rides (losing focus and dizzy spells mean driving would be a bad idea...) to do everything since I crash every time I go out. (Note, 'crash' regards to blood pressure falling and muscles not responding and insane sudden weakness/light-headed-ness. Not in reference to driving...)

Are you surprised I've been a bit overwhelmed and even discouraged? How can I imagine that life will be any different when I move? How can I think I can make a difference when I can't even get out on my own to interact with people? How can my life have as much potential now as when my body actually managed to function? What could Heavenly Father actually do with me in this state? Wouldn't/Aren't I just being a burden on everyone? Because I'll clearly need some serious help to do what I'm hoping to. (Those last two questions most indicative of lingering home negativity and abuse...)

I'll tell you something, though. Once I realized that the fear and doubt and discouragement were the opposite of the Lord's purposes (go figure who that indicates...) I was able to recognize how much I have already been helped. I was able to feel the confidence and encouragement and assurance that things actually will pull together. I may not know how. I may not know exactly where it will take me. But once I started seeing the hope, the stress has dropped by half. I'm still super exhausted and I still have much to determine, but the Lord has a purpose even for me.

This brings me to the thought in the back of my head. In 1 Corinthians 12, it talks about the gifts of the Spirit and how we are all part of the body of Christ (metaphorically speaking) and how the body best functions when all the different parts are represented rather than every part being the same. A body of feet couldn't eat. A body of eyes would never get anywhere. A bunch of bones would become a dust heap, and ligaments and tendons are pointless without bones and muscles. The parallels can go as deep as our current understanding of physiology.

Paul is writing this epistle to two sets of people. To those who condemn others for being of less value than they imagine themselves to be. And to those who fear that they are less than others due to the happenstance of their placement in life.

The pituitary glands are said to be the size of grains of rice, yet they have direct influence on how my body (mis-) manages my blood pressure. I am very anxious for the small things that aren't functioning properly to be found and remedied to return the level of activity I previously enjoyed. I care about them because of how they affect me.

But God does not consider our value quite the same way. I've already considered this concept in how I see others and wishing they saw their value, but I'm beginning to consider that and how it actually applies to me. Maybe it's a bit harder for me as I didn't have the benefit of being loved, or appreciated beyond my Cinderella services, at home. Or that dad repeatedly made it clear I had no right to expect or even hope for indications of value, self-worth. Maybe one of the lessons I'm meant to get out of learning to deal with this seriously annoying health situation is not just to ask for and accept help, but that needing help doesn't mean I am lacking. It just is what it is and as I have part in this life, I have just as much right to help and love and purpose and direction as I'd see in every other child of God. Even if things aren't working perfectly. And if God loves and wants to help me because He does, it seems I have no need to feel guilt for imagining and hoping and expecting that He will.

The Science Misnomer

It has come to my attention on more than one occasion that our world has a curious fallacy when it comes to 'science'. According to a general reading of dictionary.com's definition, science is systematic knowledge, fact. I would propose to you that 'science' is actually just our interpretation of what 'facts' we have managed to gather in any particular field, some more accurate than others.

"Whoa, there! You probably don't believe in evolution, do you? Even with all the evidence!" As a matter of 'fact' I don't see why God couldn't have used evolution as part of His creation process. And I think that we don't actually know as much as we claim. Where's my 'evidence'?

Let me ask you a question: Does considering make it so? Is not the Scientific Method a series of hypotheses, experimenting, and evaluation of gathered data? Has an accepted 'fact' ever proven incorrect upon more research? And how often does that happen when we presume to know more than we actually do?

Case in point. Years ago I got a swine flu vaccine. The next morning, something fritzed and I woke up looking at the library ceiling. With a concussion from my trip to the floor. Since then I have had many visits with many doctors trying to figure out what it is that's not working right to begin trying to figure out how to fix it. Partly due to long-term concussion effects and partly due to a common mistaking of what they expected was a neurological problem (though my doctor would point out here that there is some sort of neurological connection), a fair number of those doctors were neurologists. Now we know it's a blood pressure dropping problem but then they were looking at possible seizure activity or random rare diseases of the nervous system.

I spent five days in the hospital checking for said seizure possibility some time back. In one visit with the neuro doc, he indicated that if all the tests they have run and were running still came back negative, it would mean my health problems were due to the psychological trauma of my past reaching out into the physical realm - psychosomatic. So I asked him two simple questions. One: I've been told that the neurosciences, the brain, is the least understood of all medical sciences, that you guys only understand a small fraction of it, correct? (Yes.) Two: Then how is it that you guys automatically assume that if you can't figure out what is wrong, it must mean it's all in the patient's head? (That thought had clearly never occurred to the good doctor before. He had no answer.)

Lest any of you wonder, what we have discovered is that the sensor in my body that's supposed to regulate blood pressure fails to do so properly. Where normal people can have fluctuations with little to no effect, my body does not compensate as it is supposed to. In people with normal 'fainting' problems, the body drops the person and does something of an automatic reset. It also sends out bad data to the brain as though the body needs to adjust when it really doesn't. Of course, I have never been inclined to be like most people around me so not only do I have an uncommon situation opposite the general health concern, I also have a rare variation of it where my body is too sensitive to blood pressure drops, but it doesn't just do a pass-out reset. It simply can't keep the pressure high enough to function properly. And as blood carries the oxygen and nutrients needed for functioning, the more it drops, the longer it is lowering, the less my brain and muscles are able to work. It's quite exhausting. And it limits much of what I can do until we figure out how to remedy the problem. Sadly, science is only to the point where it knows this happens, but not really why and therefore not what to do about it.

Now please don't get me wrong. I think we should try to learn as much as we can about our world and how things work and why. I just think we need to remember that something labeled as 'Science' does not mean that all things are known, or that all interpretations are fact. And I think that the more we are willing to step back and admit what we don't actually know, the more we will be able to recognize the path that will lead to true learning.