Tag: mom

August 21, 2015

The Hospital Report

The day before yesterday I spoke with my mom’s managing physician before her second surgery and he made it absolutely clear to me that it was very unlikely that Kaiser would see fit to send my mom to a skilled nursing facility when I brought up my concerns about her coming home too fast. I may have mentioned that this second surgery would most likely have been avoided if she had stayed another day or two in their care or went to a rehab center for a few days. He made it very clear to me that Kaiser isn’t responsible for what happens to patients after they’ve been discharged. It is of no concern of theirs if the home they’re being returned to is a safe healing environment or if the people caring for them are in any way qualified or able to care for a post-op patient with needs such as: commode monitoring and emptying, physical therapy exercises, med control, bandage changing and wound care.

He told me that Kaiser has strict PT criteria and when the patient reaches them they are discharged and if I don’t like it I can blame congress for it.

It was an icy conversation. I was already upset that Kaiser, this time around, has not been keeping me informed about decisions for her care. I did not get unpleasant with him, no raised voice, no direct accusations, but I did respond with a “we’ll see” when he said they’d probably send her home two or three days after her surgery.

The doctor did not speak to me again. The nurses did not tell me that the plan for her had changed completely. My mom told me herself but she was hallucinating off and on all day yesterday so I couldn’t be sure.

Some things I’d like to note:

The physical therapist my mom originally worked with (after the first surgery) was taken off her case and she got a new physical therapist.

The doctor I spoke with who was so sure my mom wouldn’t qualify for a stay at a rehab facility has been replaced with a new doctor who actually called me this morning with an update on their plans for her rehab which include a stay at a rehab facility and the assurance that Kaiser feels they should take my mom’s recover “very slowly”.

The surgeon who performed the first surgery was contrite during the pre-op visit. He seemed extra gentle with my mom and not at all dismissive of my questions (as he somewhat was the first time around) and though he never visited my mom after the first surgery he has already visited her twice this time and yesterday said to my mom “I’m sorry, this shouldn’t have happened”. She says she responded with “No, it shouldn’t have.” Go mom!

The physical therapist who paid a visit to our house the day after her discharge did not think her excruciating pain and inability to walk to the bathroom was worthy of note or consultation with her surgeon. The surgeons believe that she had already dislocated her new hip the day before because of my mom’s description of the level of pain she was in. This should have been a red flag to the PT guy. But all he did was lecture me on administering pills to my mom correctly. Fucker.

***

So, as of today, I know for sure they’re going to keep her at Kaiser for another day or two and then they will move her to a skilled nursing facility. They didn’t tell me how long they think she’ll be at the nursing home but I’m sure it will be the shortest time possible because that’s how Kaiser likes to do things. I think this 180° change in their approach to her care is due (probably) to two factors: they have come to realize that my mom is in worse shape than they originally supposed and I rocked the boat and made it plenty clear that I hold Kaiser responsible for her needing this second surgery. All I can say is suddenly they’re being very cautious of her recovery.

I’m still angry with Kaiser. I absolutely hold Kaiser responsible for my mom needing this much more complicated second surgery. But I feel loads better now that they seem eager to make things right and see that my mom recovers in a manner that is safe and appropriate.

Good things:

My mom is a trooper. Truly such a trooper. She has so many fears (at clinical anxiety level, like me) but she just keeps bouncing back from those fears with new eagerness to recover well so she can come home to her dog and her textile art projects, and to us.

My mom lets me take pictures of her in the hospital. Indulging me in my macabre fascination with medical equipment and hospitals is definitely not something all mom’s would do.

My mom never loses her sense of humor. Her humor is almost as dark as my own.

She says her leg feels “right” this time, that it didn’t feel quite right after the first surgery.* So she feels optimistic that her recovery is going to go better.

She’s not fighting me on my strong feeling that she needs to go to a nursing facility if her insurance allows. Two years ago she fought me so hard I caved and it was really rough on me to have her home and not yet even completely sure how to change her colostomy bag. This time she’s totally on board. It’s probably because the level of pain she felt when she broke her femur on Tuesday was so tremendous she is scared to have a repeat of anything going wrong at home.

I’m just about to go visit her. This has been a gnarly three weeks for us here and I’m ready for everything to go well now instead of falling apart. The car is fixed (for $$), Chick’s ear seems to be healing so it seems possible she won’t need surgery, my mom’s dog Rosie who got hurt during the whole EMT visitation is barely limping now, Max’s toe is still infected but he’s soaking it so I think that will heal soon.

My phone is continuing to break down. Payday is today and I have a little bit of money that I made from Sugar and Pith that I can transfer to our account so hopefully I can replace it because I’m so tired of having to work around the part of my screen that no longer responds to touch. Maybe that sounds unimportant but it just had to break down when I needed to be able to text my brother and sister frequently with reports on our mom’s sitch.

But the main good thing is that things do appear to be calming down and getting fixed. I’m not sick to my stomach with anxiety today. It’s not so hot out. It’s still tomato and summer squash season, and fall is just around the corner. ** Although I failed to stay sober through all this hospital stuff, I will be soon be ditching the beer again for tonic and mega-lime with no gin.

Thank you to all of you who have been following our misadventures, offering thoughts of healing for my mom, and emotional support for me. You are absolutely wonderful and your reaching out has been so helpful. xoxo

Update: It’s 3 minutes after I published this post and my mom’s dog started throwing up, so maybe I spoke too soon. Holy fucking hell.

*That would have been incredibly useful information to share with her PT and her doctor right away.

**Which sometimes means hotter weather than summer here in our county. So fingers crossed we get a real crisp fall this year. We’ve had several cool grey mornings this week and that’s been heavenly.

June 22, 2014

Here We Go Again

This is how I feel right now: all hard scrabble, dried leaves, and a dirty flattened Q-tip.

Tomorrow my mom goes to Kaiser to get put back together from all the trauma of last summer. There are many reasons why this surgery should not be stressing me out the way it is:

It’s not an emergency surgery this time.

She’s not getting surgery with a broken back this time.

We know about her reaction to the anesthesia and pain killers and that they may need to try alternatives if she starts accusing nurses of setting the hospital on fire.

Kaiser does everything internally so there won’t be that head-exploding problem of trying to orchestrate all the different contractors that take care of different things.

I think there are more reasons but I’m having trouble focusing on them at the moment. Resectioning intestines is a pretty high risk surgery even when it’s planned due to risk of infection. They may go in there and find too much scar tissue from last time and not be able to resection her. She knows that’s a possibility. I know it’s a possibility. Because of who I am and the clinical anxiety that’s so hard to wrestle down, I can’t stop thinking about her going through all this only to find they have to close her up and she’ll have to face a lifetime of using a colostomy bag.

Obviously I can’t quite quell the fear that she’s going to die. I made her write a will this week. We talked about what kinds of decisions she wants us to make if things go wrong. Today while cleaning the bathroom I made a mental note to ask her to remind me if she wants to be cremated or something else.

I am the grim reaper.

Apparently.

I have to admit to a certain level of PTSD. This time last year she was in the hospital fighting for her life for a month. I don’t feel over it yet. The whole thing was awful. Not the way death itself is awful but all the not knowing and the paranoid hallucinations, the second emergency surgery, the abscess that formed, becoming obsessed with her white blood cell count, trying to get information from nurses and doctors. It was one long traumatizing nightmare.

Life is constantly reinforcing my anxieties, proving that YES, people can die at any moment and YES, everything can go wrong and YES, you can end up living in a small town in which you don’t belong where –

Oh, hang on, different nightmare. Different PTSD.

I collect PTSD like they’re Pokemon cards.

Life is constantly proving me right. That’s one of the worst things about having clinical anxiety. It just builds and builds because everything you’re afraid of really happens in the world. It doesn’t matter if there’s only a 1% chance it will happen to you.

That person who got killed by a serial killer – do they really give a shit that there was only a .000000001% chance that was going to happen to them? People with anxiety don’t give a chewy monkey’s ass about percentages or statistics. It’s enough that these things that happen to almost no one happen to SOME ONE.

Here’s the best case scenario:

She goes in tomorrow morning and they go in and find she doesn’t have too much scar tissue.

They resection her and she doesn’t react to the meds.

She doesn’t get an infection and she’s discharged in a week.

She comes home, we help her recover comfortably.

She gets completely back to living a normal life and we all get glass slippers. Or wooden ones that won’t shatter and cut an artery and make us bleed out on the ball room floor.

Cause that could totally happen.

That’s what I need to focus on now. I need to picture that. I need to send energy to that.

I’ll probably be watching Fringe on an endless loop. I’ll be sleeping in mom’s apartment (a unit in the same house as ours) to keep Rosie from getting scared or lonely. I expect to drink a lot of beer for the next few days.

But the minute my mom is on the mend and clear of delicate risk of infection or complications – I’m going temporarily sober again. Another 3 month stint. I have to do it. I can’t start it right now. I need the beer and the constant Fringe episodes. Then I need to get back on track with taking care of myself.

I may be edgier than usual for the next week or two. Please be willing to forgive me if I snap at you or get weird or horribly maudlin.

If you want to read about last summer’s hospitalization:

The Thing About Life

The Remains of The Day

The Longest Night Before The Next Longest Night

Coming Home: Goodbye Room 108 and 107

November 6, 2013

Getting 7 Months off My Chest

Be careful where you fling your meat.

Last night I got smashed and stayed up until 4am. It is rare that I get drunk. There was good occasion for it though. Last April my aunt announced to my mom that she wanted to sell the house. The house we’re living in. The house she co-owns with my mom.

They’ve owned it for over 7 years and the 5 years my mom wasn’t living in it and they had it rented out my aunt didn’t notice, apparently, that she was losing 20k a year by owning it (she really isn’t – but that’s a complicated thing to explain so I won’t). It wasn’t until my mom announced that we were all going to move back to California and live in this house that my aunt first discovered what a burden it’s been to her for the last 6 years. Mom convinced her that it’s a terrible time to sell so we moved in and lived here happily until this past April when Aunt L discovers again that she’s losing thousands of dollars a year owning it and wants to sell it.

My mom didn’t want to sell it.

A couple of notably stupid assumptions on my aunt’s part both stunned and angered me. The first is that she thought that since she put in a lot more money into the house than my mom did that she’s entitled to ALL the money made from selling it. She actually believed that. So in her mind she would sell it, my mom would be homeless, not have a penny from the house, and Aunt L would get a few hundred thousand dollars for it and bemoan the loss of the rest of what she spent on it. She later claimed she wouldn’t ever make my mom homeless. She was incredulous and bummed to discover that that’s not how selling property as a co-owner works. So she had to swallow her lumps and accept that my mom would be entitled to a third of whatever they might make by selling the house. She still insisted that she wanted to sell because she’s practically going broke owning a house she’s not living in.

She clearly needs a new accountant and to take a lesson in how things in real life work.

Also – I should note that she’s a very wealthy woman and will never have to face the situations that her less fortunate sister faces all the time. And making a couple hundred thousand dollars off this house is more important to her than the well-being of her sister. Nice.

The rent for the mortgage was completely affordable to us. It’s what made it possible to move back to California.

We were going to make it damn hard for Aunt L to sell this property. She would have had zero cooperation from any of us. She was forcing an ugly situation until a good friend of Philip’s suggested he might be able to help us out. He was looking for a property to invest in and thought he could buy my aunt out giving us time to get our credit back up to par, save money for a downpayment and eventually buy him out giving him profit on however much the house appreciated in value during that time.

It has taken our friend a tremendous amount of work and headache and several months to make this happen but he did it. As of yesterday our friend is a 50/50 owner of this house with my mom. My aunt no longer has the power to put my mom in a horrible situation. She got some money and should now find a new accountant.

So I celebrated by getting smashed. I am paying for it today. This is why I rarely get drunk. But it was worth it. I had to do it. I have been in a constant state of stress wondering how the hell we would be able to find a rental big enough for the four of us, two large barking dogs, and 4 cats. I’ve been stressing over my mom’s future, her security, and feeling angry that my mom’s family has once again shown their true asshole colors. It’s like my asshole grandfather all over again. The sin isn’t that they’re wealthier than we are – the sin is that they look down on us (particularly my mom) for the choices we’ve made and the fact that my mom has needed help from her family on more than one occasion. Her family gives help but not without then feeling superior to you for the rest of your life. That’s a sin that’s hard for me to forgive.

All summer I have been remembering a lifetime of slights delivered by my oldest first cousin. When we were kids she told me she was cleaner than me because her nose was shiny and mine wasn’t. Never mind that it could also mean her nose is just oilier than mine, but it was clear from the beginning that she thought herself a much better person all around than me. It continued for pretty much our whole lives. The digs against Californians (“land of fruits and nuts” she loved to say) I took with pretty good humor because I like fruits and nuts well enough and I would rather live in the land of the freaks than the land of the bigots. It was this same cousin from whose mouth I first hear the racist expression “raghead”. Not when we were kids, either. She used this expression 14 years ago and I hope to God she has since come to realize what a shameful and hateful word that is and has excised it from her language and her small heart.

This same cousin has made numerous digs to my face about how irresponsible my mom is and furthermore crowed loudly about how she and her siblings and her mom will never have to work a day in their lives again if they don’t want to because of the trust funds their father set up for them before he died. She shoved that in my face knowing that none of us have a penny beyond what we need to buy food and pay rent (a situation that hasn’t changed much). I hated her for that meanness of spirit, for her condescension, for her pride over something she didn’t actually do anything to achieve herself.

Over the years I have carved any bad feelings my cousin and aunt have caused me to feel out of my heart. I have carefully scraped away the feelings of hate for their casual disdain of us and our messy lives because they are family and no matter how assholish your family is YOU TRY TO LOVE AND FORGIVE THEM.

I’ve already been through all of this with my racist asshole of a grandfather (who I loved in spite of his racism and the million times he disowned my mother which was a minor sport to him). He helped pay off my student loans – for which I was honestly grateful – but I never actually asked for his help. I had actually told him to fuck off for being such an asshole to my mom (actually what I said to him) and told him what a scumbag he was and his response was to tell me he really wanted to do something for me and thought helping me pay off my loans would really help me out. I would have paid them off myself over time in spite of how hard it was at the time but he seemed so contrite and sweet and like a normal grandpa for once I accepted his offer. Once I accepted it I realized that it was a trap. If you accept money or help from anyone in my mom’s family you essentially give them the right to wipe their shoes on you. Or at least that’s what they think.

My other two cousins, by the way, have never said this kind of shit to my face nor given any indication that they feel superior to their Californian relatives. Maybe they feel the same way as their sister and Aunt L do – but at least they’ve never made us feel it. I like them quite a lot but in writing this and in disowning my Aunt, which I have done, I will likely lose them too. That’s the price to pay to get assholes out of your life. Sometimes you lose their loyal loved ones too.

This summer was brutal not just because my mom almost died twice, but because of what my aunt was forcing us to go through. I couldn’t talk about all this house stuff because I couldn’t risk messing anything up for my mom. So I’ve kept my mouth shut.

The loan funded on Monday and so last night we celebrated. My mom will never have to move from this house. Our friend B and his wife have made a good investment while simultaneously helping us in a huge way. Meantime we don’t have to move from a great situation. Our rent is going to go up by $800 which is pretty brutal but it was the only way we could stay here and now our rent will actually be pretty much what most people are paying for what we have – so it’s totally in line with the rental market. Can’t complain about that. If I have to get a job to pay the extra rent after all – I’ll do it. But it may not come to that and we’re already budgeting ourselves a little better and I’m optimistic that I can make enough extra money from my shop that this will work out well.

I was really sad at first to realize that our friends treat us better than some of our family does. But then I realized that this has been true my whole life and for all the bad shit that we’ve gone through – this is the good karma coming back to us – that we have made so many loyal and thoughtful friends who go out on really big limbs to help us out. This isn’t the first time our friends have done extraordinary things for us and it may not be the last.

Instead of being sad about what my family isn’t capable of I am feeling tremendously grateful for our large circle of wonderful friends who are very much like I believe family should be.

I’m also grateful for the family members I still have in my life who are awesome.

It seems that the underlying message of the summer was about sisters. How you treat your sister. What you put before your sister’s well being and how to become a better sister myself.

I don’t think I’ve ever needed my sister the way I needed her when our mom was hospitalized this summer. I really needed her and she was there. She was there with me through the whole awful ordeal. She took weight off my shoulders to her own discomfort. She solved problems, she forgave my outbursts of depression and anger and she took care of the goddamn puppy even though she’s not a dog person. She cleaned and ran errands and visited mom twice every single day. She dealt with paperwork and made sure our mom was getting the best care possible. I have never felt so close to my sister as I do now because of what we’ve been through together with our mom.

But even before this summer I think we’ve always been the kind of sisters who would never put money before each others’ welfare. I can promise that if my sister needs money and I have it to give – I’d share it. If my sister needs a place to live – I would always make room for her with us even though we haven’t got much room – that’s what you do for your sisters and brothers and mothers and fathers and aunts and uncles and first cousins.

That’s the kind of person my mom is and that’s the kind of sister she is and that’s the kind of person she brought me up to be. That’s why I will never let my mom live on the streets. Or at least I won’t let her live on the streets alone. We also don’t abandon pets who are part of the family too. When facing the possibility of having to find a place for all of us to live together it did look like an impossible feat and we joked about how we’d all live on the streets together with our posse of animals riding our shopping carts with us. If we go down, we go down together. If any one of us can hold the rest of us up – we do. Out of love. Out of loyalty. Out of generosity of spirit. Because that’s how you treat family. That’s also how you treat your real friends.

Because of the kind of family I was given – I have learned that sometimes you have to cut ties to remain a healthy person. I disowned my father because he consistently insults me, my intelligence, and is a bigot. I still wish him well but I can’t engage with people who only come into my life to make me feel bad or who treat my other family members like shit. It takes a lot for me to cut ties with family because I am loyal and I believe in forgiveness and accepting people for who they are. But as a person who has experienced abuse I have also learned that to maintain good mental health it is sometimes necessary to cut unhealthy relationships from your life in order to have a healthy life.

So this summer my family got smaller. I no longer consider my aunt family. Or my oldest cousin. They can congratulate themselves on being such great stable people who always make the best decisions* and never need anyone’s help – and they can do it out of my hearing forever more.

My mom has no part in this disowning, incidentally. She knows my feelings about my aunt and in no way endorses them. She thinks I’m being too harsh. But she’s the one that let my grandfather hurt her again and again and again. She forgives and forgets better than anyone else I know. My mom has been making excuses for my aunt all summer. She has consistently tried to see things from her perspective. Because that’s the kind of person my mom is.

My mom loves her sister.

It’s going to take me a long time to forgive my aunt for what she’s done, for the way she thinks about (or doesn’t!) her own sister. For her selfish disregard for how her actions and decisions affect others. I know that I will forgive her because I believe that forgiveness is a big part of our ability to evolve and mature as people. My aunt, like me, is only human. But forgiveness doesn’t mean I have to have people in my life who look down on me or my mom. Forgiveness doesn’t mean you have to allow yourself to be vulnerable again to those who’ve trampled you in the past.

And if some day my aunt finds herself in the dreadful position of having no resources and needs help and I’m in a position to help her? I will help her. Because that’s the kind of person my weird-ass awesome mother raised me to be. If my aunt ever needs something from me that I have to give I will give it to her. And I won’t think less of her for asking or needing help. But I will not let her back into my family circle.

Because she doesn’t deserve a place in it.

That is what I’ve been holding in my chest for 7 months without the ability to speak. Without the freedom to act.

So last night I stayed up until 4am and drank way too much. I listened to different versions of “Halleluja” and got emotional and stupid with my celebrating. We don’t have to move from this house. My mom will never have to move from this house and she has a co-owner who is fair minded and honest and a good friend to us.

Today I am drinking gallons of water and realizing that this is the true beginning of the new chapter I kept mentioning. I kept waiting for it and wondering why old shit kept coming our way. This was the thing that had to happen for the true fresh start that moving back to California has offered us.

I have so much other good stuff to write about and tell you about (the book is SO CLOSE to being published in e-book format!!!!) but that will have to wait another day or two. Right now I need to clean this house. This house I don’t have to move from. This house whose location is PERFECT. Whose garden can now be planned in earnest. I need to clean this house and then I need to organize myself to get some new products made and put up for sale so that I can remain self-employed and help take care of this house that we get to live in.

I’m so tired from all the anxiety and waiting and family shit and sadness and uncertainty and threat of moving and my mom’s recovery and her health insurance troubles.

But right now, right at this minute, I couldn’t be happier.

I am feeling a lot of gratitude.

*Er – well – my aunt’s decision to invest in a house and spend way more on it than she could ever hope to get back and that (apparently) she couldn’t afford to own (*bullshit*) could be called a really stupid decision. But whatever. She probably still thinks she did all that to “help” my mom which is a convenient way to look at it.

June 24, 2013

The Longest Night Before the Next Longest Night

Tara in the OR waiting room. Mom had an intestinal perforation (many people have had intestinal perforations) and one week and four days after her surgery a CT scan revealed that she had a new perforation higher up and so she was rushed into a second emergency surgery. The second one took an hour longer than the first one. Her surgeon told us he’s never had this happen in all his years of practice. He said he was “flummoxed”.

Flummoxed is not the word you want to hear a surgeon use.

You want surgeons to say things like “I’ve seen this a hundred times before and can predict the outcome with a certainty of 90%” or “This problem is so common I’m practically bored with it professionally”

The two and a half hours Tara and I waited in that 80’s revival room I think we both went through several cycles of emotions and thoughts.

I mostly thought we were going to lose her that night. It was the longest night.

Until the next longest night.

24 hours before her second emergency surgery, while the hospital was planning mom’s release to the skilled nursing facility to finish recovering before coming home, Max came to see her. We talked about going to see World War Z with Max when mom recovers later in the summer. Max made me take pictures of the hospital food charts on the meal carts.

I am having trouble with the re-play. The second surgery for the same thing that shouldn’t have happened but did. My mind insists that once something that’s never been seen before has been seen – the chances of it being seen again have risen by 50%.

My brother Zeke, Tara, and Zeke’s good friend Taylor in the ICU right after Tara and I watched mom’s surgical wound bandages changed. Something you don’t get over in a hurry.

From left to right: Orchids from mom’s best friend Bill, flowers from Tara, citrus fruits Tara brought because mom wanted to smell them because she can’t have any food and was craving citrus.

Today my mom needed a blood transfusion because she hasn’t been able to keep even liquid nourishment down for 15 days. She’s malnourished. That yellow bag isn’t urine, it’s liquid vitamins to support the blood transfusion. She’s also on such an intense antibiotic regimen that the hospitalist has taken advisement from the CDC about what level of antibiotics she’s going to need when she’s released to the skilled nursing home. She has a lung condition from getting pneumonia so many times in the past that she has permanent lung damage and a permanent cough to go with it so she has to have respiratory treatments to clear her chest every day. This is exacerbated by the fact that even the healthiest lungs slowly collapse and collect gunk during prolonged bouts of laying in hospital beds. The way to combat this, of course, is to get patients up and walking about. This is complicated by the fact that my mom came into the hospital with a compound back fracture. (The back people described her as having a “blown disc” but we’ve also heard “compound fracture” enough that I figure you can take your pick) So to walk around she has to wear this molded plastic armour that supports her back but also must account for her fragile abdomen wound which is incredibly painful. When you have such extensive injury that you spend most of your time in bed you need help with circulation so she’s got leg compression sleeves on her calves that squeeze her legs forcing blood back up into her heart to be recirculated. She also has had to have an NG tube off and on (she has a habit of tearing it out) to drain her stomach because both the first time around and the second time around when allowed to drink water and ingest liquid food her stomach has not processed them resulting in her stomach becoming distended and then she throws it up. Meanwhile her lips and her mouth are so dry all the time she’s begging for the water she can’t often have and needing constant replenishment from lip balm.

My mom basically feels like shit when she isn’t feeling incredible pain.

My sister and I are mildly obsessed with watching her white blood cell count and trying to discern whether the pain in her stomach is the same as when she was first admitted and then when she had the second perforation or if it’s just pain from her broken back and her enormous surgical incision.

Room 108

You don’t get to stay in room 108 unless you’re pretty special – my mom got there because of her constantly tearing out her tubes and trying to get out of bed which, in her condition, is extremely dangerous to her recovery. She’s shared the room with Sergei the Romancer who spent most of his time on the hospital phone when he wasn’t harassing the nurses for tea and favors, a guy who slept 15 hours due (we think) to an overdose of xanax, a gaunt lady who’s missing half a leg and whimpers a lot from pain and who loves to say “motherfuckers” when the nursing staff try to clean her up, and a homeless suicidal guy whose wife is hooked on heroine.

The level of trauma my mom’s body has gone through is phenomenal. She’s fighting for her life right now. Some moments she seems to be doing so great I can’t believe I’ve had such trouble shaking the feeling that I’m going to lose her. Then everything changes and my fears are well founded and the surgeon can’t emphasize enough what danger she’s in.

The morning she woke us up gasping in awful pain saying she needed an ambulance I had a bad feeling. When I was ten I didn’t know how I could protect her. I’m 43 years old now and I still don’t know how I can protect her. I had hoped that her living with us and being an intimate part of our everyday life would help me somehow keep her safe and healthy.

The stark reality of the past two weeks has humbled my pretensions.

My mother is one of those people who can’t help but shine. She’s got this light inside of her, an immutable charm, something you can’t invent for yourself but have to be born with. She’s an amazing artist and a complete original. All my life my friends have loved her and wished their own mothers were as cool as mine. It used to annoy me. Sometimes having a wild visionary spiritual hippy artist mother is less like having a mother than it is having your own personal college roommate.

During the darkest moments, through post-anesthesia delusional fogs, my mom has kept her wonderful sense of humor. When I bolted from the room when she started throwing up I heard her say behind me “Boy, I sure know how to clear a room!” She’s sweet to the nurses even though she has sometimes thought they were part of a complicated political plot to undermine everyone’s freedom in the hospital (we have been told over and over again how normal this reaction is to the pain meds). They love her. So many people love her because she’s such a funny, sweet, beautiful lady.

This afternoon she was wanting to get going with her physical therapy. She wanted to get shut into her Plastic Maiden so she could get up and walk around – something she knows is vital to her recovery. She was so positive even though yesterday she had such a rough day – pain meds weren’t working well and she was without any for several hours. Yet today she was rarin’ to go – to do whatever she can to get out of that joint. She has been so appreciative of everyone thinking good thoughts for her, so appreciative of her kids visiting her. She’s rascally and funny and I really want her to live.

Right now I am too numb to have either an abundance of hope or an abundance of fear. I honestly don’t know what to believe, to trust, to imagine. I only know what I want.

I want my mom to come back home with a lot of years left to enjoy her puppy and her kids and grandkid on her porch and have new adventures with her best friend.

There is such a cushion of love around you mom. We’re all bringing what we can to you.

I promise to hang Chinese paper lanterns across the porch and the back yard and to put out many bowls of “stuff” to celebrate when you are out of the woods and back home with us.

xoxo

January 1, 2011

Hope I Can’t Account For

I love this minute. I love this hour. I have a bit of a fever, as I always do, as though my blood was boiling over and my head might explode with excitement waiting for the turning of the calendar. I tried working on the novel but I can’t settle into a groove, I can’t hang onto a single thread tonight. I was about to say that I wish it wasn’t so symbolically important to me, the new year, but it stuck in my throat as such a strange thing to wish. Why not? I get excited. I spend plenty of time being a crusty old curmudgeon, why not get childishly excited about something completely abstract for once?

I am grateful for a lot more than I probably let on.

I feel hope I can’t account for. That may be the best kind.

Sometimes we do things our whole lives and don’t understand why.

I think it’s fascinating to suddenly understand something that’s always been there, always been a shadow puppet in my life, always pulling my strings out of my control and yet I have simply called it this uncomfortable freakish thing and then let it fade against the more stark settings in a circular life inhabiting sharp square spaces.

I’ve heard it said that the devil is in the details. I think this is true.

We don’t generally eat at table as a family. I register a sense of guilt that this isn’t a bastion of strength in our lives as it seems to be in other families who take the dinner table as a sacred event. No one shall be excused from the dinner table without they happen to be dying! I have thought mistily about what it might be like to have a kid who can eat food without being distracted from the fact that he’s eating food because then we could all sit at the table together. It’s a nice fairy story and it’s so facile to lay this at the kid’s feet. He’s quirky and we accommodate him.

The joke is that we are all so quirky we have no way of drawing meaningful lines between normalcy and freakitude. It came up in casual conversation the other day with Philip, something about eating at the table, the fact that we almost never eat in our dining room, I can’t remember how the conversation twisted out between us but at some point Philip pointed out that we never have really been people who ate food at the table. Even before Max. The only time we eat at table is when we have guests.

The light went on like it does in grungy cement basements where a single bulb switched on can feel like the inquisition of Christ in interview room #1.

I did grow up eating at the dinner table. We sat down every night the way all families are supposed to do. My whole youth I ate at the table with four other people and the thing I’ve never ever articulated until this week is that it was a constant exercise in self discipline to sit and eat while hearing four other people chew. Hearing the various noises associated with mastication: teeth grinding down, saliva mixing in mouth cavities with food, open mouthed chewing noises, lip smacking, fork scraping against teeth and against plates, the sound of swallowing… all of these noises were like canons going off constantly in my ears and made it difficult to eat myself. It wasn’t just being disturbed by the noises that my family was making but knowing that they could hear me making the same noises. Someone once told me I’m a very loud swallower and I’m still traumatized by the thought of that being true.

It makes sense now. It makes sense in my current life where we put these “quirks” up to the light and accept them for the part of our overall maze of mental issues that make us who we are.

I don’t have issues sitting at a table with guests, the kind of dinner where someone is always talking (me, for distraction), and where the general clamor acts as a mask over the sounds of eating I find terribly disturbing and unappetizing. I don’t have these issues in busy restaurants or at parties where everyone is carrying food around on plates and generally chatting and shuffling so much you can never hear teeth clamp down on crunchy things.

My family, I think, may never have known about these issues. We didn’t live the way Philip, Max, and I live now: in great acceptance of our differences and figuring out how to live in such a way that our issues don’t interfere with our quality of life. Back then I was a chatterbox (as I am still) but in a different way. There was a lot I never said, never expressed. A lot of what I did express wasn’t heard anyway but I could never know if I let something slip, if it would let loose any repercussions that would prove bruising. I’m pretty sure I told my sister to stop chewing with her mouth open and I’m pretty sure I scolded my brother for slurping milk in great luscious gulps, but never did I say what intense distress it was to me to hear the sounds of eating at the dinner table.

I have always hated eating anything in front of people not eating. I have generally preferred to eat in private. Where no one can hear and hate the sounds of my chewing and swallowing.

I was once told that I chew like a cow. I don’t think I’ve recovered from that one yet. I think I was seventeen when it was said to me.

If I become uncomfortable at any dinner table I will provide cover in the form of random chatter. I will wait until someone else provides chatter before I will eat. There are plenty of times, especially at large tables of people, where none of this could ever possibly be noticed, but the fact remains that eating is not something I’m comfortable about even though I love nothing better than to feed the people I like and love. They are like irreconcilable siblings. If you want to know what it takes for something to cross the line from quirk to uncomfortable mental illness, I think this is a great example.

There is no time when eating around other people doesn’t cause me some sort of anxiety. I deal with it because there is also nothing I love better, nothing I find more meaningful than feeding people. This doesn’t change my discomfort. This doesn’t change the fact that “dealing with it” causes me a great expense of energy, part of why I am so tired after socializing.

Crunchy things are a living hell.

The real revelation is that this whole issue made it into the first draft of “Jane Doe” and I didn’t even realize it was me I was writing when I wrote Jane not being able to eat to the sound of people eating.

So even if I had a kid who could eat food without being distracted enough not to see it, examine it, think too much about it, or be grossed out by it, we still wouldn’t be one of those families who eat at a dinner table.

There is the blanket excuse that I need to eat earlier than Philip gets home, and while this is literally true, it is merely a coincidence. If Philip started getting home at five pm (when I like to eat) I still wouldn’t want to eat at the table.

Maybe this is horrible to other people. Maybe it’s a sacrilege to the ideal of family life as other people see it.

A lot of people believe that the cornerstone of a healthy family is to eat together. I think this is because it’s a natural time to share what’s been going on in your day, your mind, you break bread (a sacred ritual) with the people you love and you commune. I see nothing wrong with that. Unless you’re us.

Here’s my last thoughts tonight: you have to arrange your life and the life of your family as it works best for you and not according to any impersonal ideal. What’s important is that families talk together, that they listen to each other, that they come together and love each other as a unit, appreciating each other as is. That’s what’s important. How you do accomplish this is immaterial, as long as you are accomplishing it.

It’s okay to make up your own rules. I will always have these eating issues. When I wasn’t at liberty to arrange my life how it felt best I was in a great deal more discomfort than now. I will always find this uncomfortable, food with strangers, food in quiet, food at solemn tables- and it will make me feel like a freak often enough.

In my own home I need not suffer so. My people don’t want me to suffer so. My people don’t need table time together. My son is like me, I just didn’t realize how much I was like him.

I am reminded of my first psychologist, Jay Judine, who is dead now. He did me a great service by teaching me that it’s okay to be different, it’s okay to make decisions to live in a way that makes me more comfortable as long as I’m not hurting other people in the process. If it helps me and hurts no one then I don’t have to conform to anyone else’s ideals of life. He taught me that it wasn’t about depending on crutches, it was all about building a life that’s more comfortable and happy. Being mentally ill has plenty of shit moments to offer but it’s okay to embrace your quirks unapologetically and to work them to your advantage.

That was a real gift to me. I try to give it out whenever I can to others because I don’t think there are enough people saying it’s okay to accommodate your own freak flag. It’s okay to arrange your life in such a way that you find more comfort, that you function optimally with an un-optimal brain and less than ideal issues. It’s okay to be who you are, you are not less just because you don’t function the way others do.

I know it’s always hard for people to not judge us when they observe we don’t observe the holy family dinner table, that we “let” our child eat all his food in front of a movie or a video game. They have no idea how torturous and impossible it is to get Max to eat when there’s no stimuli to distract him from eating.

I can’t explain it any other way than that it would be cruel to try and force him (or me) to conform to average people rules. We’re different. In our house that’s acceptable. In other houses it’s extremely uncomfortable.

Here in our house, if nowhere else, it’s safe to be who you are. Unless you are a serial killer or hurt animals. We don’t tolerate sociopathic behavior but everything else is okay. I can’t promise we’ll immediately understand your own brand of different, I can’t promise that we’ll know exactly how to make your own quirks work here. All I can promise is that we’ll figure it out.

I have a hope I can’t account for. I want you to have that too.

Before I go for the night, for it’s late already, I want to say one last thing, an acknowledgment of sorts. I had a long talk with my mother tonight which seems like a good thing to do on the last day of the year, and in the way conversations turn and revolve we somehow ended up on the novel writing. My mom was worried about us not having any health insurance at all and I told her that I intended my novel to be published and to do well and she told me that she had no doubt that my novel would be published and that it would do well.

Hearing my mother say that to me was a vote of confidence I didn’t expect and that I treasure. I don’t think there’s a moment in our lives when a parent’s confidence and faith isn’t more powerful than the faith we have in ourselves.

I have to remember this for my own son.

Goodnight my peoples. If you need a little buoy, if you need a little unaccountable hope, I have it to spare, just ask.

Happy New Year to you all!