Scenes from the Immune System Wars

I am a Volcano dweller.

You probably didn’t know.

I don’t look very Hawaiian: but I am.  I am the first ever Jewish pacific  islander  volcano woman.

I live deep inside the crater on the big island.

Just now things are really heating up.  I don’t know what to do.

Should I stay inside where I have been for so long?  Or, should I peak my head out over the crater, my home, and see what is happening.

I mean, it might be fun to be a part of the mainstream again.  But, man o’ man is it hot out there.   How long would it take for me to flow to the bottom and who knows if I  could make it intact enough to start a new life on the outside.

Today I was feeling brave and so I climbed my way up the wall, out and above the edge where I make my home: it is protected and has its own air conditioning and plenty of cushy couches and water, all kinds of things that make it almost like it would be if I lived comfortably on the outside, where the earth dwellers live.

You see, I used to be one of them.  But stuff happened and it began to be easier to just stay inside the mountain: the center… the heart beat of the island.  I have been here so long I don’t even look like an earth dweller any more. Instead, I am covered in a red flame.  It is like a rash all over my former body that never leaves.  I am hardly recognizable,even to myself, after all of this time.

It was certainly tempting when I looked out over the edge.   It made me sort of sad and yet sort of hopeful.  Maybe this is my time to  return.  Or, says the voice of disbelief in my head, maybe I never will be ready and will always be stuck inside, too scared to flow out again and circulate and become a real functioning human again.

Could I handle it?

I honestly do not know.

But maybe, just maybe, I will join the flow and see where it takes me.

 

I have not completed a single blog entry since my surgery date of August 16.  I have wanted to many times but just did not feel up to the task.

You see, the whole thing wound up to be quite different from what I had expected or hoped for.

I had a two week stay in Dallas for my pancreatitis in late July and early August.  Then, I was home for one week.  I honestly don’t remember much of anything about those two weeks.

I do remember the day we drove back to Dallas, checked into the hotel that is part of the Baylor medical complex ( it is awful and not worth the money or the convenience).

And then, it was lights out for me for the next two weeks:

I remember snippets of things and some stuff that was hallucination.  I also remember seeing my parents and Peyton (sweet girl) and that we were all discussing if I was going to stay with them or go back to where I was.  I distinctly heard Peyton say, “If you need me; I am here all the time.”  She had a nice, young man with her but he never said anything.

That was NOT a hallucination.

I remember my parents literally brushing over me… not in a physical hug of course, but in a manner that made me feel warm and feel their presence.  I heard my mom say as they left, “are you sure this is the right thing, Harold?”

Then dad said, “it is really her decision.  She will be okay.”

After that, the lights seemed to come on for a while.  I still had a breathing tube in me and I desperately wanted it out.

I was also very, very thirsty and confused.

It seemed forever but the breathing tube came out and I was able to suck little cubes (sponges) of water at the pace of one every four hours.

I lost consciousness again.  There were so many strange things going on in my head.  For a while I was absolutely convinced I was in a veterinary hospital.  I also thought the nurses where changing in and out of costumes and trying to trick me somehow.

I firmly believed that every time I got a shot of one pain killer, the nurse had to wrap the bed in string.

This is all so crazy town that I have been embarrassed about it.

Then , I remember the family coming to see me in ICU.  I had a lot of lines and machines attached but they had already taken out the catheter so I had to get up on a disgusting bed pan to pee.

From then  on, I was very conscious….too conscious.  I spent another two weeks there and was in pain most of the time.  I don’t think it had to be that way.  In fact, I think the hospital did a shit job of addressing my pain and nausea.  But, in other ways, they were fine.

So, what happened to me that caused all this pain and hospitalization?

After my laparoscopic gastric bypass, I got pneumonia.

Then, my belly started to swell and the doctor thought I might have some bleeding internally from the sites where he went in.  So, he took me back into surgery and checked all the laparoscopy sites.  There was no indication of bleeding.

The next day apparently things got really bad in the middle of the night.  From what I have been told, I got massively swollen and the doctor assembled a team at midnight on a Friday and they went in and this time it was through a big cut in my stomach.  The scar is impressive.   It starts at my mid waist and does a little u-turn thing around my belly button and then keeps going.

Apparently, my intestines were completely stuck together: strictures, he said.

They took out my entire intestines and washed and unglued them from one another.

So, when I finally returned home, on the 17th of September, I was still using a feeding tube and a wound vacuum.

Two weeks later we drove back to Dallas to see the surgeon and he removed my feeding tube, which was very painful, in the office.  He also unplugged my wound vacuum.

I went home and my son observed, ” you have been rejected by the Borg. ”

No joke!

I have never, ever been more grateful to have my own parts without other things draining and sticking out of me.

So today is Dec. 2.

I lived.

I have had ‘flu for over a week because I never got vaccinated and I am already sort of physically worn out.

Eating is very difficult but I have lost around 60 or more pounds.  I am well on my way to success in the weight loss department.

Has it fixed my pancreas?

No.  But it is helping.

I will never, ever go under into surgery again expecting a good or normal outcome.

I am too spooked.

My poor kids and husband have been through the wringer with me and we are all tired.

I am just ready to move on from this.  But, for some reason I guess I needed to blog the whole damned thing.  Now that I have done this, maybe I can let it all go a bit.

I am sorry if this was boring but I really, really hope that I can let go of the rope it has had around me for months and I can began writing more interesting things again.

Shalom …. dear reader.

Yep, that’s right.  I have been in the hospital in Austin, no less, and with another problem than the usual one!  I am so proud of me!

I have been having some mystery infections.

Last Sunday it got really bad. The world was a blur and it hurt to breathe and stand up.  I knew something was really wrong.

Stan and I had taken two nights at a nice hotel here in Austin for our anniversary.  It was so nice to be away from home and responsibilities for a bit.

So, on Sunday morning, when we had planned for a leisurely brunch, I told Stan to just drop my sorry butt off at St. David’s North Austin Medical Center.

My temp was, 102.8.  That is the highest I have ever had as an adult.  And, for many of us ”’zebras” with faulty immune systems, it is even more serious than for a “normal” person.  Our  bodies don’t know to stand up and attack like that unless something very, very bad is going down.

So, I have been in he hospital almost a week and taking bags and bags of IV high powered antibiotics.

Three weeks later:

Sorry, but I do get distracted!   The upshot of me going “septic” and my long stay at St. David’s North was solved by removing my port a cath.

This was my life line for receiving meds and fluids easily without anyone having to go hunting for veins that are either not there or decide to roll when you get near them, or that start out looking all innocent and positive and then blow up.

As you can imagine, I really, really liked having the port a cath.  But, sepsis is no way to live:)  (You see what I did there…. right?)

The hospitalist  seemed clueless as to why I was so infected: my white cell counts were in the stratosphere, but he asked what I thought.  So, all things being equal, we figured it out together.

All of those dire warnings I had heard about port a caths and the possibility of bad infection; happened.  It was great when it worked but most of the time it was a mess.  I had two separate ports placed on my right side in one year and then a third doctor who went in and tried to build a ‘little shelf’ so my site would be easier to access.

The guy who took it out offered to put a brand new one on my left and the same time as we were removing this one.

I said, NO THANKS.  I think I will just put up with the poking and prodding and the pic lines, etc.  That infection could have killed me and that is not the way I wanna go out.

I will just have to be firm when I ask for the use of a doppler machine to find a vein.  Those tend to work brilliantly.

Anywhoo: I ramble.

Next up on the Katie repairs time table: June 26 I had some new shots in my back and another attempt at blocking the nerve that causes the pancreatic pain.

It was sort of fun because my son drove me and my friend, (who also needed shots and has a similar host of ailments)to get knocked out at about the same time.

My friend is from Australia and was planning a trip back in the next two days after the procedure.  So, when the nurse was taking her down to the car and Samuel with them, she kept asking him, “Do you want me to get you a wallaby on this trip?” Samuel politely refused her offers and later told me he thought a wallaby was something bad or poisonous.  I told him that it was actually a cute, miniature Kangaroo and he said, “oh ok then, tell her I would like one!”

My friend was surprised when I mentioned it because she was too stoned at that point to remember much at all!!!

I try to be cool about asking dumb Aussie questions because I know those must get old. but, I am afraid I will have to make an exception here:) I mean, she started it, after all.

This Friday, July 7, I am having eye surgery.  It is something I am looking forward to and desperately need.

Long story short: I was born with a severe case of Strabismus, or, lazy eye. 

I have had the muscles in my rogue eye fine tuned three times: 1967, 1972 and in 1984,  I am due a tune up.  Also, I have small growth under my eyelid that is not at all attractive and  needs to be cut off and biopsied (fun!).

I loved the ophthalmologist  that I finally made time to see. She explained all sorts of things about my condition I had never known.  She said fixing my straying eyeball is not’ just cosmetic’ it is actually effecting my sense of balance and ability to see out of my “good” eye.  She even gave my daughter a lens to look through that explained what I see. Hannah said, “that makes me a little nauseated.”

Anyway, it is a good thing.

And then, the surgery that was recommended by the Pancreatic specialty team in Dallas over six months ago, might actually happen.

Update: July 23, 2017.

Well, it took my a while to get back here, didn’t it?

What can I say? The heat really, really knocks me flat. So does chronic pancreatitis, lupus and hypogammaglobulemia.

But good things are happening!  I have been doing some amazing work with a new therapist cum spiritual adviser. She is such a perfect fit for me that I know she is G–d sent.  Every time I see her I get so excited that I can barely contain how grateful I am.

The Jewish mother in me wants to feed her or shower her with gifts.  I know I don’t need to do that but the instinct is hard to squelch.

And, the best news of all: I have an actual surgery date!!! August 15 or 16 (depending on which day the o. r. with the robotic arms is free) and (so, so happy!) my surgeon worked magic on the insurance company and they are going to pay for the operation.  Yeah.  I feel like several weights that looked like giant question marks have lifted off of my shoulders.

So, what do I do now?  I start worrying about failing the surgery.  I mean, it is a gastric bypass.  Although about half of the reason is to bypass my effed up biliary system, the weight loss thing is important too  I have to lose all I can.  And you know what?  I want to lose all I can.  But I am so frightened of failure when it comes to weight loss that I worry I will be the first person ever to fail the gastric bypass.

This morning sometime, I had a dream about it.  In the dream I was telling people that I was failing for xyz reasons… and this was BEFORE the actual surgery.

I remember that in the dream someone sat down with me and told me, “if you keep telling yourself you will fail, you will make it a reality.  It is all in your head.”

This hit home for me and I started crying.

I will make it happen.

I am being given a new lease on life.  I need to take it by the horns  and go with it.

I need to do whatever it takes: even the daily struggle to let go of the food when it has its hold over me.

I  begin the pre-diet on August 1 and I need to go back to Dallas for a induction lecture given by a nurse.  I just want to look and feel good.

I am scared but this is going to happen and I need to push away my fears and get on board.

I will.

I will.

I will.

 

I do not normally write from within the hospital ‘hole.’ (This particular “hole” is Baylor Hospital in Dallas, TX).

I guess I give myself the option to go to pieces and put it all back together when I leave.

This particular incarceration experience is unique.   I never planned to be here so long.  And, I never meant to get so sick. : Lots of things have happened that I had told myself were “no no’s.”

So, things feel  really out of control here and I guess that is what has me so off balance.  Usually I can put some sort of spin on it that will make me trick myself into perking up.  But, right now, I just can’t get there.

The Lurid Details:

I have been here ten days already.  Ten is well over my limit.  I just feel like I am going to bust out and go running down the streets, iv pole clattering behind and with my undies exposed through my attractive hospital gown

No one wants to see that  happen: No one.

I came here on Thursday the last because I was desperate.  My symptoms were getting worse and worse and none of the Austin hospitals wanted me.  I had to come here; where my specialists are, and plea for help.

Initially, my friend was gracious enough to drive me here after working a half day and then could only stay a bit before she had to turn for home so she could work the next day. However, having her with me was a huge stress relief.

The Baylor medical school hospital I go through when I am admitted here is also a county hospital and trauma center.  And, I have to go through ER just like everyone else.

It is a nightmarish experience.

This time I waited six hours before being taken to an ER room.

During that time, I was hungry, thirsty and in pain; and so was everyone else in there.

I met some interesting people.  I even had a little sing a long with a very elderly woman who is suffering from Alzheimer’s.  Her daughter explained she used to be a “choir leader” and you could tell.  She was tapping out rhythms with her long, bony hands and stomping out the beat on her wheelchair.  I was humming along and asking her for the hymn number.  Something about my doing that really set her off and going.

She would tap, direct, and then look in my general direction and say in a very garbled way, “you know this is where you are supposed to come in.”

Goodness, but I have heard that before!

There was also a little woman there with heart attack symptoms just waiting as long as I was.  She didn’t seem concerned they weren’t getting to her.

She told me to get a paper and pen and write down all my information so her church could pray for me.  She said, “My husband is a Deacon and he will make sure this gets done.”

I couldn’t help but think he would have been surprised to find out what sort of liberal, mixed race  believer he was dealing with!

Later on, a man sat down next to us who said he had already been released from the hospital twice that week and wanted to be done with it.  He had gotten a call from his doctor’s office that he should go back to the hospital immediately because his kidney stones had turned into an infection, “in his blood.”  I don’t think he was aware of the seriousness of it.

He was tired of being out there and waiting for his own emergency he said.  I couldn’t blame him.

When I was finally taken back I had a lovely nurse.  She was very concerned about getting me hydrated and getting my pain under control. She would leave for ages and not come back and I did not have a call button, so I just sat there and shook.

After four hours there, the doctor I had spoken to at the beginning  came in and said, “I guess we have to keep you since you have been here before for this issue.  I don’t really know if you have it since your blood work and ct scan look clear but I am going to send you upstairs and let your specialist deal with you tomorrow.

She was very aggressive and flat out rude.  She thought I was pain med seeking, obviously.

I pointed out that I was still in a hell of a lot of pain and had been and she said, “I will give you one more milligram of dilautid and that is it.  I never give anyone 3mg while they are here.  You must have some big problem.”

When she left, I sobbed.  The nice nurse had heard it all and said she was reporting the doctor.

And so the fun began….

Here I am, all these days later and I am sicker than when I got here… and that makes me……

scared.

I am sure it will all come out right in the end.

Tomorrow they are going to replace my leaking port a cath (again), give me splenic block shots to my back and try and get me to be able to swallow anything outside of water… which has not happened this week.

Right now, I still wanna run.

Preferably to a bar.

With fried food.

I might as well go out in glorious splendor!

 

 

I don’t really understand why some people study medicine and then practice it when it is clear they do not enjoy it.

Case in point: After several days treating a pancreatic flare at home, I decided I was just getting worse, so I came in to the ER at a good local hospital.  Usually this means they run some tests and I give them my paper work from the doctor I see in Dallas.

So, I got to the ER around 1:00 and was given a room straightaway.  I saw a very earnest PCP, so almost a doctor but not quite.  She took my paper work from Dallas, ordered blood and CT and X ray and she actually called Dr. Burdick in Dallas..

She was not keen to medicate me much but did work to get my pain under control.

Then all hell broke lose in the ER and I was left sitting there in pain for a good six hours.

I was told I would be admitted and I asked to please be given something for pain and nausea before going to my room because it had been so long.

Turns out, the PCP lady in ER had an out and out fight on my behalf  with the hospitalist who would be taking me to the floor.  The new lady did not want to give me iv fluids at all.  She also indicated that by the tests that I had had here,  I don’t have chronic pancreatitis.

That is why I bring all the paper work from Dr. Burdick and the images of my sick little pancreas.

New care provider hadn’t seen those and didn’t believe they were correct and did not want to hear what the other nurse care provider had said.

So, I went into detox. That means I sweat and feel shaky and horrible — along with the pain.

Then the hospitalist/MD dude who would be managing me came in. He also clarified that I do not have chronic pancreatitis based on their results.  I tried to explain and have him look at the Dallas reports and he told me they were all quite difficult and I probably didn’t understand them.

I lost my cool and explained I have as much post graduate education as he does and I can research, read, and I had a diagnosis from a flagship hospital and a top tier doctor.  I also mentioned I would be having pancreatic transplant as soon as I qualified.

Then  he proceeded to tell me it is dangerous surgery and I don’t really understand how bad it is.

I told him that I live with it every day so I know a lot about it and would be making my own decisions.

So, he told me he would give me about a quarter of the usual pain relief I normally have and that I would just have to deal with it.

When I got to the room I found out he had cut down many other of my regular meds. For instance, I can use Ativan three times a day if I need it.  He decided every 12 hours was good enough.

He took away my sleeping meds altogether.

This kind of behavior makes no sense to me.  Why would anyone go into a caring profession who does not care to listen, to read, and to become a part of a team that consists of patient, specialists and hospitalist?   I can tell you why.

It is a power trip.

And, although I have no proof of this; I believe, firmly, it is sexist and also anti Semitic.   I have gotten to the point where I no longer feel safe wearing my Star of David necklace.  But, I do put a religious preference in the box where they ask if you have one.  I have doctors and nurses that come in and say, “So, you are Jewish.. I had a neighbor once that was Jewish… maybe you know her.”

Sure.. whatever.

Or, “I used to work for a Jewish doctor; he was really great.”

But, those comments are from the ladies, the nurses.

When it comes to these floor chieftains, called hospitalists,  they are in charge of their domain.  They bang on their out stretched chests and tell you: this is how it is….

I have learned how and what I can do to deal with them but it does make the whole idea of going to a hospital that much more terrifying.

So, the next time, I went in and the doctor came into the room and said, “look, we know you, and we know you have no quantifiable data that let us make a good case to the admitting doctor (or insurance?) to admit you.

I then explain that my pancreas is too dead to show numbers at this point and I have paperwork to verify that, etc etc.

The doctor looked at me and said: I will medicate you this one last time.  You need to go to Dallas and check in to your specialists hospital if you want to be admitted.  It won’t happen here.

This whole scene is demoralizing and makes me feel I have done something wrong when I haven’t.

I have decided I would rather take every pill I have in the house rather than go to an ER.   It isn’t worth it.

So, no more horror stories of docs.

I don’t want to talk about it again.  It does not warrant the time I have given it here.

I have decided to only write here when I have more positive things to say.

I just decided I would finish this up and send it out as I started it at least six weeks ago.

Please give me feed back about your own experiences in hospital ER’s and with the stupid system of ER dr to hospitalist.

Cheers!

Life is beautiful….. you just have to look up and see it.

We did it.  We made it out of our normal orbit and survived a grueling drive to Northern New Mexico.

We are in a lovely, very old, adobe home in Taos.  Out of all our years of coming here we have never stayed in town, always up in the mountains.

But, being here is perfect.  Everything is perfect and what we all need.

All of the sadness and all of the longing for people we no longer have with us; and all of the heartbreak I personally feel for a body that no longer answers when I call it to work and move without pain, seem blunted here.

I hope that is what my family feels as well.  Of course things are rarely as easy as all that. Both of the kids have expressed that they feel sadness tonight, on Christmas eve/ first night of Hanukkah.

But we made a decision as a family to come here and not really celebrate the holidays, as it were.   We may light the menorah one night and have our latkes but that is about it.

I would have loved to have gone to the pueblo tonight for their dance or attended a service in one of the smaller Catholic churches.

But, being here is enough for my soul and my family says they are good with just being quiet.

This is time to heal.

This is time to write.

This is time to snuggle under blankets.

This is time to read and to  reflect upon the good.

Oh, and it is time for my 17 and 22 year old children to build lewd sculptures in the snow.  I am so proud of them.  Their father has trained them to have no shame and very little in the way filters.

We are supposed to have more snow tonight.

I hope so because we want to take the kids sledding on a run we read about in the national forest.

I feel like melted butter.

That is all for now. I will  end with the image of melted butter and the relief of being melted instead of frozen solid  with anxiety and fear and pain much of the time.

I want to let the light shine.

The light shines in the darkness. And the darkness could not overcome it.

John 1. (New Testament)

Amen.

I hear the phrase, “new normal” bandied about a lot these days.

I don’t really know what it means.

I think the idea is that whatever has happened to you or your family or even your entire country… (wink, wink, nod, nod) it is something you process and incorporate into your system and then pick up your skirts and keep going.

It makes sense for us Americans, doesn’t it?  We are the rugged individualists,  If you let yourself fall and stay down, you will just get trampled by the vast crowd of people who are rushing along with you—to all of their other endpoints… their  Normal.

As Americans, I think we have the collective  idea that if you move through something, with enough vim and verve,  you can come out the other side in one piece and just keep marching, even though your reality is that you  had both legs chopped off…  “Everything is fine here: just a flesh wound!”

Americans are completely and totally a culture of individualism and capitalism.  We are a product of the founding fathers’ (yes, they were all white dudes) morals and beliefs and the era of enlightenment in which they lived and thrived.

To be sure, it has served us well, this mind set.  I can’t think of how many times I have been told (by doctors and the general public) that if I felt bad I should just “get up and dust off my fanny and get going.” So, to this day, that is what I try to do.

I have tried and tried to find a  “new normal”.  I have tried to accept that my life is never going to be without pain or illness or chaos. I have tried to wrap my mind around this idea that my family, those who are still around, won’t have to see or experience any more of it all than I can help. This is my new normal and not theirs.  I don’t want to drag them down with me.

And yet, it seems like I always do involve them.

My husband has to pick me up, or I have to cancel this or that so I can go lie on ice packs or get knocked out so the pain doctor can try and shoot me full of nerve numbing stuff.  It doesn’t always work… but I am grateful that they try.

One new normal I refuse to accept is this idea the ER is just an extension on my house and hospitalizations are just normal and no big deal.  But the fact is, it is a big deal and I don’t want this to be my normal.  I hate it.

I hate the pain and I hate the hospital and the ER and what it does to me and my family. My children avoid me and my spouse takes very good care of all the tasks at home.  He can’t, however, be with me too much.  It is just not in his nature.  So, I have tried very hard to build a wall of protection and nonchalance about what happens to me in the hospital.  No one, except another chronically ill freak such as myself, can really fathom the time I spend, tethered to an IV with my bed alarmed and no way to even take care of my own basics.  Instead, I become needy and feel like I grasp onto people who are not mine.

I think this idea of a  “new normal” is just a cover up.. a scam.. for saying, “look, you are obviously messed up and not getting  better, so please quit talking about it and fade into the woodwork.”

On the African Savanna, where our ancestors  learned to kill or be killed, the weakest ones were left alone to either die in peace or feed the hungry locals, well, both, actually. We are herd animals.  When one is sick and then wanders off into the woods alone: other animals understand and respect that and perhaps they even respect the sickened animal that offers itself up to be eaten so that the herd can keep going.

The jackals come and that poor weak link becomes a fetid, glorious meal.

Life goes on.

The rest of the herd finds a “new normal.”

Well, let’s put is another way:

I don’t think my herd is going to shove me out the car door and leave me to the coyotes anytime soon.

However, I do see everyone that is closest to me, shifting gears so they can carry on the daily details of their lives without me.

I used to cook, a lot.  Now, when I ask my family what they would like for dinner, because I am having a good day and really want to cook, they say, “we have been feeding ourselves just fine so you don’t need to cook for us.”

Okay, strike that function off the list.

I need to find some very part time work and earn some income but my husband always tells me the stark truth.  I don’t have the capability to do that with my current level of health uncertainty. And, he is right.  For the last six months or more, I get about one good day out of every eight.  Then I try not to go crazy and go out and run around so I mess it all up for the next day.  Or, maybe I SHOULD dive headlong into that ONE day.  If it is all I get, then Mazel Tov! Blow yourself out:)

I just never know.

I have goals, and dreams and hopes for the future.  I have a belief system that tells me that there is a loving Creator G–d that understands my pain, my joy, and listens when I ramble on.

Speaking of rambling:)

I have been so remiss at finishing a blog piece these last few months that I have wondered if I would ever come back.

I have started at least three pieces, of which, this is one.

I think this one is going up but before I go I have another tangent I would like to veer  off on so please be patient!

I have been thinking of the “Holiday” season, since it is right upon us.  I am not really big on Christmas as a civilian, Hallmark holiday.  I think a lot of people find it obnoxious, whether or not they profess to be Christians.

For me, it is a bit different.  I have celebrated many a Christmas in choir and from the pulpit, and it might be hard to fathom, but since I let my little Jew self out of the closet (my family was mixed and I have been both; my sister is Jewish and my brother is just annoyed) I have found the Christmas fluffy crap even more overwhelming and insulting.

But really… they have a tiny Hanukkah section at Target.  I tell ya, we have arrived!

Back to my point…

Both holidays are about light.  Both holidays are about hope against all odds.

Both holidays are religious celebrations of varying importance to their own narratives.

Both holidays have roots that extend way back, and in the case of Judaism and Christianity–are rooted in the same origin story.

So, what does all of this tell us?  It tells us that against all odds, miracles happen.

The lights stay on long after they should have gone out.

Babies get born in the strangest of circumstances but still go on to have meaningful lives where they touch other people with all they have to offer.

You never know these things  as they are happening.  You are just in survival mode.

If the lights go out, there is no more hope left for a group of marginalized people.

If the Light of the world is not born in a stable while his people are being persecuted, there is no glorious morning and no birth of a King in the straw.

This is personal for me.

I don’t know if/when my lights are going to go out.  I do know that I am very weary of the struggle.

I also know that my primary relationships are suffering because of all this and I would take it away in an instant if I could; but I can’t.

I have learned a lot but I do not know if I have more to learn.  I can only say that if it is going to be this painful, I don’t want it.

There.  I said it.

I am not suicidal.

I believe in the light and the miracles, still.

I just feel like the candles are flickering and the work of birthing a new way of being and thinking are just far from over.

I don’t have any idea what is next.

I guess that is part of the story too, though.

After the light and the thanks and the food and the singing, how does one keep the light with them?

Prayer.

That’s all I’ve got for the present.

Prayer and patience and a healthy dose of the ability to shut up and listen so that maybe I can quit feeling like I am standing in a field of rocks and thorns and it is an endless maze of bruised feet, torn heart and sadness.

I can’t find my way out just now.

I miss my aunt.

I miss my Peyton.

I miss my mom and my dad and a lot of other things that have already left my life.

Will I ever be whole again in any sense of the word?

Will I find a “new normal?”

I guess I’ll just try and follow the light and assume there is a bit more oil for my lamp.

 

 

 

 

 

 

In Memoriam: Peyton Nicole Marsh

This little pixie from heaven was irresistible.  She always had a plan and she seemed to have it all figured out:seemed being the operative word here!

But that never mattered to me.  I just enjoyed every minute I had with her.  She sparkled and when she couldn’t sparkle, due to the cystic fibrosis that was eating at her insides, I usually managed to make her let her guard down. . Or at least let me tell her I knew of the pain and frustration of disease and hospitals and doctors and helplessness.  We shared that bond, even though I knew that her burden was far, far heavier than mine.

Sometimes she would even let me pet her ivory face and and put her sweet head on my lap as we watched tv.  This isn’t easy; because getting a heavenly made and heavenly bound pixie to let you pet her is not easy.  In fact, it could cause the potential petter, harm.  It almost certainly leads to a shattered heart. I liken it to the rarity of falling in love with a particular humming bird that has slowed long enough for you to lock eyes with it, to touch it, and to let you think, just for a minute that it could be yours.

For all who loved her;  they know what I am trying to express.  As I am sure that love led them to the exact same place.

I just feel so blessed that I was let inside.

This little angel tried in her last years to look scary.  She wanted people to know she was not the 12 year old her body led you to believe.  So she experimented with different kinds of armor. You see, what she lacked in size, she made up for in wisdom and the absolute oblivion of a young person that just hurtles though life, trying to taste from all of its riches.  She was way older than either 12 or 21.  I think she had a very old soul, whatever that actually means.  And I think she was stuck in a sort of long term adolescence that said, “What the hell? Why not try it all?”

And she did.

The year we bought a ski boat (We just had it that one year.) she wanted to go with us every time. She would cling onto the the big inner tube behind the boat and wanted Stan to drive her faster and faster.  She reminded me of a little tick.  She was glued to it and she grinned the whole time.

Also, when she started driving, she and her suburban assault vehicle were quite the team; there is no nice way to put it: She drove like a bat out of hell.

Once, I had to have her take me to the ER.  I really hated asking but of course she took me over to the one at Seton Williamson.  I thought for absolute sure, we would die before we ever got there!

As we finally made it there, she said she would park and come inside with me.  I told her, “NO WAY!”  Your immune system is worse than mine and you ARE NOT hanging out in an ER! So she told me she loved me and left.

In earlier years, when Peyton would go to Dell Children’s for a two week ‘tune up’ a couple of times a year, my daughter, Hannah, would crawl right up in the bed with her and they would play with paper dolls and horse figurines. Stan and I or her parents,  Gary and Michelle would make food runs. Hannah told me recently that she never thought about it being a hospital then.  It was just a place where her Peyton was so she went there.

Then,  before we even knew it, it seemed, there we were, shopping for prom dresses, or better…..   going on  fancy birthday travel, to the River Walk in San Antonio, etc.  and numerous other destinations all thanks to Michelle and Gary (Peyton’s parents).

On Prom night, I had the privilege to  do hair and make up for Hannah Beth, Peyton and another girl, who was not at all sure she wanted to go.

So I fed them cheese, crackers and a tiny bit of wine, that was carefully laced with mineral water. Peyton liked the wine and wanted MORE! but I have her a firm NO on that one

And then, after graduation, a graduation that featured Peyton’s incredible pipes on a song with the school’s rock band; it was all over.

No.  It wasn’t.  But, in place of school, Peyton had to figure out what was next. She had a string of jobs and found out that academically all the time she had spent in hospital rooms had really put a dent in her education.  But, I told her over and over and over, those were things she could catch up on very quickly because she was so damned smart.

I don’t think she ever found a comfortable spot for herself in the work and school world.

But it didn’t matter to any of us.

We just wanted her… here…. with us.

But, as it slowly became apparent that was not G-d’s plan for her, I am quite sure I am not the only one who had some choice things to say to the Creator.

It took my daughter a long time to understand and process all of this.  And now, she is processing it anew.

It isn’t fair.

It isn’t ok.

God, in my opinion, does not create suffering.

But God does teach us how to be compassionate to others.

And I think the best teacher I have ever known in the art of compassion is without a doubt: Peyton Nicole Marsh.

Maybe that is why her time with us was so short.

She definitely had a lesson. And she definitely taught it.

I know that I will keep processing what I have learned from the blue haired, tattooed pixie for the rest of my life.

Rest in peace, sweet pixie.. heaven is lucky to have you..

 

I have been messing about with several posts even though I made a grand announcement that  I was not going to blog for a while.

Yeah, well… here I am.  I can’t seem to sleep at normal hours and I thought this might be a helpful exercise.

I said goodbye to my aunt this week.  In many situations, that would not be such a close, close thing.

For me; it was and is.

Allie, (Alice Jane Owens nee’ Wiley) was a good deal more to me than ‘just my aunt.’

She always said she was my ‘udder mudder’.    I know that sounds weird but she liked the weirdness of it so that is what we went with.

When I was born, Allie was about 31 and knew she was never going to have children of her own.  I was the surprise child for my parents, who, although normally bright people, never understood birth control.  My sister is eighteen years older than me and was born while both my mom and Allie were teens.  My brother was born four years after my sister  and by that time my aunt and grandma had moved to Missouri so grandma could take over the nursing section of a special polio ward in Springfield.  In fact, she was the “poster nurse” for the March of Dimes and instrumental in getting it started.

But, when I arrived on the scene, Allie was living in Houston; working, and divorced.  She enjoyed her career in the financial world of bonds and whatever it was she did with them:) and traveled a bit.

My grandma was in Houston as well, still nursing. She was a charge nurse at Memorial Herman in the medical district.

We visited them a lot and Allie traveled on most of our vacations with us.

She was my playmate:)

I know I drove her nuts but she tried to be a good sport and color and play barbies and do whatever it was I was asking her to do to pass the time between San Antonio and Estes Park, Colorado.

She was always there for me.  She taught me different lessons than the ones my parents taught me.  But, most of all, I was impressed with the fact that she was a single woman who seemed to do fine in a man’s world and had this sort of life of her own that entailed late nights and trips to New York city.

Sometimes, she was more authoritarian than my parents and I would whine to my mom and dad about it.

She told me that I could, in fact, sleep in the dark.  And, that I did not need to have my fancy new tape recorder on 24/7 with me recording myself making weird noises and playing them back.

And  that recording interviews with my teddy bear was getting old.. fast.

She and I always bunked together.  I wonder now if that became sort of a pain for her.  I do remember her telling me to Please Hold Still.

But, she always listened to what I was trying to say and she always took me places when my parents were off doing their things somewhere else.  I never felt ‘alone’ on long trips when she was along.  She was my very own special all in one friend and adult.

She and my mom always had a complicated relationship.  They sort of nipped back and forth at each other.

I have to say, my dad was pretty patient with it all.  I don’t think he was when they were younger but by my time, they seemed to have it all ironed out.

My aunt was a party animal.

She loved driving and she loved drinking and she loved eating and she loved shopping: She was into every type of excess she could get into at one point or another.

But she was also game to try new things.  She tried downhill skiing with me and mom one year in Colorado.  I think it was a scary experience for her but she did it.

She even tried out my horse once or twice.

I will never forget my husband’s  (boyfriend at the time) introduction to her: We were visiting her in Houston and it was getting late on a Saturday night and we hadn’t had dinner.  She told us to get in the car; we were going to Galveston.  It was a pretty long drive from her part of Houston to Galveston but she didn’t care.  She called some friends and we all met up at Giado’s (well known and nice place to eat and drink on the island) and we had a late dinner and I don’t really remember much else.  I just remember my husband slumped over in the back seat sleeping as she drove her pink Cadillac back into town in the wee hours of the morning.

I also remember her letting me and my  four friends stay with her so we could go to the Texas Renaissance fair.  She cooked for all of us and got out her sewing machine and helped us get some of our costumes finished. My friends were all very creative and had made us all costumes but we weren’t quite ready.

She took care of our puppy when my husband and I had an incredible nine week honeymoon in Europe.   As a reward for her service, he ate the corners of all of her furniture.

So, fast forward a decade:  My dad died at age 66 of renal cancer.

She and my mom moved in together and then added my mother in law to the mix.  For almost ten years, they were the ‘golden girls.’

My kids thought everyone had three grandmas in one house.

When my mother in law decided to break up the threesome, mom and Allie stayed together.  My mom had been fighting two types of breast cancer and the second one was a real bitch.

Mom beat that cancer back into a corner and did experimental treatment that kept it from progressing for almost ten years.

When the cancer finally spread, it was my aunt who cared to her. She literally did everything possible to keep mom at home and comfortable.

Finally, when the cancer went to mom’s brain and she became too tough to handle, Allie had to stop.

That decision plagued her for the rest of her life.

After mom’s death, she rented an apartment in San Antonio and was trying to pick up the pieces of her life.  But, it was clear to me and my husband that the next years would be difficult for her and that she would sicken and die herself.

My husband asked her to move to Austin (Pflugerville)  and help us out with the two kiddos and his own mom, who was dying of Parkinson’s disease at that point . And since his own sister had taken leave of any obligations to her,  we were on the hook for a lot of care.

So, she came.

I know it was hard on her.  She missed her life in San Antonio.  But, I think that as she became more of an active grandmother to the kids, she began to enjoy it.  She was doing something she had never really thought she would do: take over the role of parent and grandparent in an acknowledged and appreciative way.

I know my son loved it when she picked him up at school.  He knew she would always have fresh baked cookies or get taken out somewhere. The two of them had some special jokes and I know she was instrumental in helping both kids recover from the deaths of my mom and Stan’s.

She took my son to the pediatrician and my daughter to get her driver’s licence.  I think she enjoyed doing the things she would have never imagined herself doing.

She cooked dinner for all of us as often as possible.

But, then, the time came that her body rebelled against her excesses.  She was diagnosed with congestive heart failure and had to have a pace maker put in.

Things kept getting a little more complicated from there on, out but still; she was always there and always wanted to know what was going on with us.

She still cooked and baked and did all she could.

She made friends at the senior apartment complex where she lived.

I don’t think she ever knew how strong or how brave she was.  I know for a fact she never thought she was pretty.  Her self esteem was never any good.

But, she continued to mother me: we talked almost every day; in these six years  since my mom passed.

So this is a tribute, a eulogy, a note of appreciation and thanks.

I love you udder mudder.

I will always miss your crazy self.

Please save a seat for me.

I am so glad you are free of a body that simply gave out on you.

Godspeed, sweet Allie.

I miss you.