Scenes from the Immune System Wars

I have often been asked by other women why I wear make up.

What is it that I am trying to cover up? They ask.

Do I feel I need it somehow?

Am I nervous or do I feel  deficient in my looks?

Nah.  It really isn’t any of those things.

I do it for myself.  I like to play with the products.  A new palette of eye shadow really turns me on.  Or, trying a new type of make up base that promises a porcelain finish and seems to really deliver; I am all over it.

I come by this honestly.  In high school and college I was involved in drama and opera and dramatic narrative and just generally on stage a lot .   I learned how to do stage make up and it fascinated me.  The idea of shading the face so it could be seen at different angles under different lights just seemed so amazing.  You can turn the human face into an artist’s canvas, just with make up.

As I have aged it has given me a great deal of comfort to know that I can still play with my paints and highlight and shade and bring out the best parts and de-emphasize the others.  It is like a magic trick.

However, there is one part of all of this I can’t really account for.

I don’t know when it started or why but when I put on my make up I completely clear my mind of the day ahead.  I go to another place  mentally.  I focus away from the things that keep me captured or tethered to myself.  My  mind wanders and skips over topics like a rock jumps over a river bed.  It lands completely wherever it wants to go.

It is a type of meditation.

I guess it isn’t something you would reccomend in a book on formal meditation, “Meditation: The Make-Up Method”. But, it works great for me.  Maybe it is because I have myself such a comfortable set up in my dressing table area.  A few years ago I decided I needed a make up table and I bought myself a hodge podge table that opened up and had a mirror inside and came with a bench.  After painting the table I realized the mirror was not going to work at all.  It is not magnified and has no lights.  Also, the table sits rather high, which is awkward.  However, the bench fits right under the space between the sinks in our master bathroom.

Voila! I already had a dressing table:)

I have also bought some organizational items so that I can have all of my latest faves neatly stored and easily accesible.  I even have a lighted mirror that is so high resolution it scares me!

So after I complete my morning ablutions I sit down on my bench and pull out all of the goodies I think I might use that day.  A lot of days I tell myself I am going to keep it really simple and I probably should… but I get carried away.  I am enjoying myself.  As soon as the process begins, I quit thinking about the things that trouble me.  I just focus on my face and on some inner voice.. (sometimes the inner voice speaks outwardly and my family thinks I am crazy but there is nothing new there)!

I titled this, “What I Make Up For” because the answer is I make up for me.  After being asked the questions and frankly traveling in a melieu in my professional life that is filled with women who don’t mess with make up because they don’t feel they have to, I am finally comfortable with just being me.

Yeah, I like lipstick.  I like it a lot.  Give me an expensive manicure and wax my brows any day!  And yes, I will show up to your house or event with make up.  I try to make it look very natural… that’s the point.  But if it seems weird or makes you feel uncomfortable, I am saying this to other women, I’m sorry.

It is not a competition.  I love to look at the faces of all my women friends and how they look beautiful just as they are.  Some days, I go around looking just as I are:)  But mostly, I play with my paints and go to my happy place.

So I guess what I make up for is my peace of mind.  That is a pretty good thing so I think I will keep doing it!

I feel silly writing about the same thing a third time.  I mean really, who cares?

After all that kvetching about weight and losing 15 pounds on a dime and the surgeon I actually did something really smart.  I spoke with a nutritionist and she ‘happened’ to be just what I needed.  (I don’t believe in accidents of that kind.)

She told me, “BMI is not a good measure of health and fitness. It is no longer used in my profession as a measure.  You are doing very well.  This doctor is telling you he doesn’t want to operate on you so please get a second opinion.”

That is the sum of what she said, anyway.

So I took her advice and after I thought about it for a minute I felt kinda silly for all the mental acrobatics I had been putting myself through.  After all, the doctor in question is human and fallible.  It is irritating that he couldn’t just be honest and say he was uncomfortable operating on me.  But, I think doctors, especially surgeons, are trained to say they can do anything.  Then I realized something else: it was his partner I had meant to see in the first place.

I went back online and realized that the practice of the Austin Hernia Center and the Austin Surgeons overlapped; same number.  There was only one doctor listed as a hernia specialist and I had seen the wrong one.  Apparently you have to figure that out for yourself.  So I made an appointment with the hernia surgeon.

I saw him on Monday and what a relief!  He will do the surgery robotically and feels quite confident.  He explained it in detail and showed me the CT scan, etc. He seemed baffled (who knows?) by his partner’s behavior and ultimatum to me.   He pointed out that a really high BMI or weight is a problem but that I am not in that category at all:) Yeah!!!!!!

It will still be lengthy surgery and recovery and I will be in the hospital a few days.  I want to get it the hell over with so I scheduled it for June 2.  He said he is clearing his calendar for that day because my surgery will take several hours: ugh.

My son is graduating from his college  and we are having a party for him and then  moving him and his sweet  girlfriend and all their stuff back to Austin in late May.  I figured I would just get it over with after that.  I might as well get the summer going as soon as possible after this mess is done. I am taking the summer off of work, which will be a real relief.

It looks like a summer of hope and I am excited for it.  I want to be healthy and active.  My husband and I acted on a whim, sorta, and bought a 1977 Chrysler Buccaneer,  18ft.  sailboat from a minister in north Texas.  The boat and trailer are in near perfect condition and it was very inexpensive.  We used to own a very small sailboat when we were first married and I know my husband has always missed it. So, when we saw the advert on Craigslist I told my husband to follow up on it.   The boat needs a little maintenance but considering its age, not too much.

So, I plan to be OUT IN THE OPEN! I can’t get too much sun or I have a damned lupus flare or if I dive into the lake I get a sinus infection., etc. etc. but..

I am so much better than I have been in years and I think it’s time to just put on my floppy hat and enjoy everything.

I am grateful to have found out my daughter is staying in the general area another year as her boyfriend does a postdoctoral fellowship with his dissertation supervisor.  My daughter just finished her Master’s thesis and is not ready to keep going academically at this point even though she is insanely gifted.  She needs to clear her head a bit.  Going to school in the pandemic has been hard on everyone; my son too.

So the summer looks bright and I want to be there!

Sad, dissapointing things happen and loved ones will continue to be sick, etc. but I feel like after I get the lumpy bits out  of my tummy (looks like I swallowed a small animal… hernia is BAD.) I think I just plan on some JOY.

I hope you all have some JOY too:)

I wrote in my last blog post that I needed fairly extensive surgery, fairly soon.  Since I wrote that I have been wrapping my head around it and I have had a CT of my belly region.

I just received a call from the surgeon.  He had looked over the CT and wanted to get back to me.  I really like the guy.  The news was not good, not really.

He confirmed that the hernia is one big mess and that it will probably involve going through muscle and a long recovery: yippee.  I was expecting to hear that so I was not surprised.  Then came the stink bomb.

I have lost 80 pounds in the last three years.  I have changed the way I eat and the amount I eat a whole hell of a lot.  I exercise three to four times a week even if I feel like shit. And I stick to a diet of no meat besides fish and try my damndest not to eat gluten.  And I only drink one glass of wine a year: at Passover! (G-d commands it:)

BUT THAT ISN’T ENOUGH.

I have to lose another 15 pounds to have this surgery.

I had already planned to take the summer off so I could do this and recover.  Besides, I will have a lot of people in the house and I thought this would help me in a lot of ways.  I was comfortable with the whole deal.  I had even told my boss that this was what I was doing.  Now, things have changed.

I feel smooshed.  I feel defeated.  What if I can’t do it?  How will I handle it if I have it in the fall and I am asked to teach a course at St. Ed’s which is what I am praying for?

This is not what I wanted.

Can I lose this weight really quickly?

I would be happy to starve my way to it.

I am generally not good at that nor do I think it is healthy but if means must, then maybe this is the time.

I know I should be happy that I am so close to a healthy BMI… (that is the issue).  I thought I would never be this close again.  My relationship to myself in terms of food has gotten so much better that I think I am just angry that it is somehow being questioned.

I have enjoyed just being my own boss and actually seeing changes that I have made all on my own.  I am afraid if I have to work on someone else’s program that I will do the thing I have always done: I will freak out and rebel and sabotage myself.

I pray that won’t be the case.  Maybe I can talk myself out it somehow.

No, I literally need to pray that is not the case.  I need to not take all of the responsibility for this on myself.  I need to share it.  I really can’t handle it on my own.

The old tapes, the ones in my head that are so old and so undesirable, still play when they are least welcome: “Katie, you’re just destined to be fat.  I mean look at you:  You suck.  Your mother warned you.  It’s your fault this is a problem in the first place.  If you had done everything right from the beginning after your surgery this wouldn’t be an issue.”

And yet I know what happened after the surgery is not my fault.  I was unconcious and almost dead for a month and then it took months to recover and then I had to get off of serious drugs.  Through all of that and through seven bouts of pneumonia and the flu and more, I still managed to reduce.

I did not really feel good about all of this until recently, during Covid,  when I started exercising religiously and keeping my diet laser focused.  Frankly, these things have helped.  I have lost another twenty five pounds in the last year and my body has just taken on a whole different shape.

I am proud of what I have achieved and I do not ever plan to go back where I was.  I am able to live a better life this way.

So, in the balance of things, fifteen measly pounds is no biggee. It is just that whole thing of having it imposed from outside and being put on a timeline not of my choosing. It is a mind game.  I suppose it is just like everything else.  It is something we want to control but we really can’t.  We know better and yet persist trying.  I am a capital offender when it comes to this.

So, after talking with others, which is the way I process information, I have come up with a plan:

1. Be gentle and loving with myself.  I cannot take good care of me if I am angry at myself all the time.  I have to decide to model the care I would want to receive- on myself.
2. I am going to ask for help even though I hate to.  I am contacting a dietician.  I have had a hard time with this in the past but I can do it again.  It cannot hurt to try.

I will let you know how it goes!

Viva los weightez…

(weak..I know)

 

Well, Sports Fans,

It’s happening.  Around the beginning of June, as soon as I finish the semester and get the kiddos graduated and my son and his girlfriend moved, I am having hernia surgery.  Normally that would be a non thing.  People have those all the time, right?

Of course they do! And of course mine isn’t normal!

I have these huge bumps in the middle of my belly that have  gotten bigger and bigger since my 2017 surgery.  After I was healed and feeling better from that surgery I went to a surgeon here in Austin (I had that surgery in Dallas) and was told in no uncertain terms that the hernias were there to stay because no one in their right mind would touch me with a scalpel after  what had happened in Dallas.

So, I let that ride but decided that after three years and 80 pounds and building muscle I would see someone who specialized in hernias.  I found a very thorough and honest guy:  He was horrified.

Looking at me now he could not believe what I went through then.  He said I should have gotten this over with sooner. He was poking on me and looking as serious as death so I said, “Maybe we should just leave them alone.” He replied,

“No. The longer you wait the bigger it will get.  This is not three distinct hernias;  It is one giant one.  I don’t know if I can remove it laparscopically but I will try.  I have a feeling I will get two hours in to the surgery and have to open up your belly again.”

The thought of this freaks me out due to my experience three years ago when  I ended up in ICU for two weeks and  in the hospital another two beyond that.  It took me months to recover.  But, logically I know that won’t happen because I am at least 200% healthier than I was then.  It is just going to hurt a lot.

I also know he is not going to pull my innards out and re-arrange them like the Dr. in Dallas had to.

What this guy will be doing is just the opposite.  He will be stuffing everything back in to where it is supposed to go and using a piece of mesh to hold it in place.

I am trying to focus on the fact that I won’t have to always wear loose shirts anymore.  In fact, I had hoped this surgery would include a plastic surgeon that would take care of a few other key places that are, shall we say, baggy, since I lost all this weight.

Hahaha…. the joke’s on me.

What is really going on here is fear.  I used to march bravely into surgery no matter what it was;  I didn’t care.  I had total faith in both the outcome and in the medical community’s ability to keep me safe and comfortable.

All of that blind trust has been replaced with blind fear.  I feel broken and I have no faith whatsoever that a doctor with a scalpel, even one with good intentions, won’t either screw up or underestimate the weird ways my body reacts.

Here is the rub: Having a good attitude is key to success in this sort of thing.  Fear, and it’s first of kin, anxiety, work against having the best of outcomes. Both emotions stimulate the production of cortisol in the body and dampen the immune system.  Goodness knows I don’t need help in that area!

But, there is grace in abundance, even in  the parts of our lives where we experience fear.  In my case, grace has presented itself in the guise of time.

It is only the first week of April and I will not have the surgery for another seven or eight weeks.  This gives me plenty of time to work on my own monsters.  I will do that by processing all of what is going on with G-d and I can do that with his representatives in my life: my spiritual counselor, my family, my non-religious Jewish therapist, and many more people who come  and go in my day to day.

I will learn from them and reflect with them and take my uncertainty to the One who created me.

In the end I will trust that what happens, happens.  I cannot control all the outcomes.

In fact, I don’t even have to control all of the outcomes.  Maybe that should be comfort in and of itself.  I just don’t feel that way yet.

 

My lupusy shite has been flaring a lot.  It comes at me in waves of nasty rashes and joint pain and fatigue.  Let me tell you, it ain’t fun. I never know what causes it.  Is it my fault for over doing it or is it X, Y, or Z?

I never know why it is happening  but in any case I always try to just make do with it.  The last thing I want to do is go on more medication.  In fact, my goal in the last year has been to get off of as much medication as possible.  However, the only medical intervention for these flares is prednisone, i.e.  cortisone, which is not my friend.  I have been taking minimal amounts of it trying to get over these flares but it isn’t working anymore.  I had to go in to the doctor for a big injection.  That was ugly.  I couldn’t sleep for a few days and I was a basket case of emotions… (more than usual!).

So I have been discussing with my rheumatologist what to do.  For a long time, with other rheumy’s I have had, I was told there were no further options to try.  Between my primary immune disease and autoimmune disease, it was too dangerous.  Or, I had doctors who simply did not believe there was really anything wrong with me and I was crazy: loved those docs:(

This doctor and his partner have  been wonderful.  They know their stuff.  So, a couple of months ago we tried a new medication in addition to the plaquenil I always take.  It was Immuran, which is sort of an entry level drug and most people do great with it: Not Me!  I had an immediate reaction.  I was very dissapointed.

I waited a while to talk to the doctor and was hoping that the whole thing would just go away.  Of course it didn’t so I finally called him and we met.  He said it was time to try Methotrexate.  That would have probably been just fine and I would have already started it but, Damn The Internet!

I read all of the interaction and reaction warnings on the drug and now I am scared to death.  Methotrexate is an entry level chemotherapy drug.  I am going to be open to infection and it may hurt my liver and cause my gut problems.  Those are two, no three, areas where I already have problems.  The dr. wants me to start taking folic acid daily while I am on the medication. I am guessing that will protect my liver.

But all the thoughts run through my  head: Is it worth it? Can’t I just remain like I am?  Surely being sore and tired and rashy a lot of the time are acceptable.  I mean, what if I have a serious reaction? What if this? What if that?

I don’t mean to diminish people’s fears but I have little patience for people that fear a reaction from a flu shot or even a Covid shot.  For goodness sakes’ people, it is proven effective! Basically those are as certain as they can be and side effects are minimal for 98% of people. Besides, when it comes to Covid, the results of getting the disease are far worse.  Good grief but I am grateful to be vaccinated finally.  (And no I am not a robot or a pedophile nor have I been chipped…. well, corn chipped maybe… they get me every time.)

Sorry, I got off track there.

It is the serious drugs that have started to scare me.  I used to be willing to pop anything in my mouth.  I was raised by people who saw modern medicine as a miracle and believed that there was a pill for everything.  I believed that too.

But, over the last ten years, well, I guess over the last seventeen, (since my CVID/ primary immune disease) was diagnosed, I have learned otherwise.  Medicines all have a cost.  They can produce a miracle and have in my life.  Without some of them I would be dead.  But, it is a very delicate balance and I really don’t think any one doctor or human of any kind can tell what the best balance is for me personally or for anyone else.

Our medical system is disjointed, as we all know.  We see a different doctor for each different ailment and they do not talk to one another.  There is no coordination.  In fact all the coordination falls to the sick person.  You have to keep your files together and your medications up to date and ask all of the right questions if you don’t want to get into trouble and get cross medicated.  I found that out the hard way.

So where does all of this leave me?

Yikes, I don’t know.  Kind of freaked out but needing to just take the plunge and see I guess. I have been very fortunate with my autoimmune side of things.  A lot has gone wrong but so far I still have my major systems functioning.  It could be a lot worse.

I guess I will go for it and see what happens.

I will let you know how this next new adventure goes.

 

 

You remember the saying, right? “Step on a crack and you’ll break your mother’s back.”

I guess one of my kids must have stepped on one.  I have had an increase in back pain over the last couple of months so I called the pain doctor to ask how to deal with it. The PA called back and said that after looking at my files I needed a CT of my spine.  The level of osteoporosis I have is simply going to cause breakdowns, she said.

It took a lot of shennanigans to get the CT done and to extract the results from the doctor’s office.  Apparently, the diagnosis was not a problem for them so they were not in any hurry to notify me.

When I finally spoke to someone I found out I have compression fracture in my L2, so very low down and just above the area I broke in 2016.  I was sort of surprised to hear I am walking around broken.

I was even more surprised to hear that the doctor’s office seem to think it was no biggie.  I was told more than once, “yeah well, it is just a chronic injury for you so you will just have to deal.”

At the moment we are on a much needed vacation and I am just ‘dealing’ with it.  I will go see the orthopedist when we get back home.  I realize there may be no real fix but I want to explore all of the options.  I am sure as hell not going to accept the situation as is without trying to make things better.

In one way it is just yet another thing to add to my list.  But it is also something I feel sort of resentful about.  I only have advanced osteoporosis because of the malabsorbtion issues I have thanks to my mostly dead pancreas.  Why does my back have to break too?

Now I am terrified of falling.

I don’t like feeling fragile.

I know I have mentioned that before.

I have become very driven about getting exercise and eating well in the last few years.  In fact, this year of the pandemic seems to have made all of the things I have wanted to put into practice finally gel.  I am exercising three or four times a week and I keep my diet pretty limited to things I know are good for me and just don’t eat anything else.

This has made me stronger, faster, leaner and improved my energy levels.

However there are still issues to contend with.

Like I have said before, there will always be issues and I have to accept them as part of the picture and keep moving. That is: I choose to keep moving. I choose to live my life and not cower in fear of the next break or the next flare or the next infection.  There is no point in that.

We just spent two blissful weeks on vacation.. just me and the hubs.  It was so awesome to be vaccinated and out and about in states like, New Mexico and Colorado that have actual laws about mask wearing and social distancing.  Gee, it was like being in a land of rational people:  Imagine that!

There was snow up in the Colorado mountains every day we were there but it was so pretty and blissful because we didn’t have to do anything:)

Vacations should be a right.  I realize I am lucky to take them.  I feel bad for people who don’t ever get to. Without those times and experiences I don’t think my mental health would be intact after the last year.  And after those two weeks of relaxation I became aware that a lot of my ‘issues’ with my day to day health fell away. This tells me what I already knew: Stress is the biggest bugabear in my life.  I think it is probably true of us all.

So how do we rid our lives of stress, or of dis-ease as one psychologist called it?

I haven’t the faintest.

You?

 

What funny little things we humans are.  So many of us thought 2021 would bring about a dramatically better year.  And, to be fair, some things are starting to slowly improve,

But just when you think it’s safe to go back in the water what should happen but… a week of total breakdown in our modern systems due to inclement weather in Texas.

This is our third day without running water and we are very lucky.  People across the state do not have power and we have had it this whole time.  The record breaking cold and snow and ice have completely frozen our poorly constructed infastructure.   We are trying to keep our heat turned down low and our lights off to preserve what energy we can for those in need across the grid.  My daughter, her boyfriend and my little, red golden retriever grand dog are all here too, stuck with us.

I feel like a useless appendage.  I have been tired and not much help with scraping ice and shoveling snow.  My bones are basically full of holes and I am afraid to fall down outside and snap myself in two.  I have been cooking as much as I can but today’s cooking adventure in peanut butter cookies was vetoed as a waste of energy.  Ok.  I guess not?

I just don’t have much to do because my work and everything else is canceled.

I have had a hard time concentrating on anything.  I guess it is because I have the more immediate concerns of getting the dogs out and collecting water from drippy faucets when I’m lucky, and boiling drinking water.

The above was written on snowpacalype day three.

Today is snowpacalypse day 4:

I am a little better today.  I mean my attitude is better, which helps. To be honest, after infusing my Igg on Tuesday, I didn’t sleep that night so yesterday was sort of awful.

Today is what it is.  I am trying to roll with it.  I am making 16 bean soup and Spanish rice.  If someone wants to grill fajita meat we can have that for dinner too.  We actually made it out of the house and went  the 1/2 mile to Costco and back.  It was pretty bare in there but I was glad to go.  It was probably not the best Covid decision but I was masked and didn’t stay long.

I am trying really hard NOT to think about how awful this is in terms of catastrophic failure of the electric and power grid in our state goes.  This whole week has been catastrophic and will still leave behind it a trail of dead people.  As if Covid hasn’t taken enough lives now more will die senselessly as a result of poor governing.  That makes me very angry.

This whole situation had made me reflect on the fact that I am more fragile than I would like to be.  I have to be extra careful not to fall on the ice because my bones are brittle.  The stress and the cold have made me  hurt worse and feel sick to my stomach.  I am not included and some of the outdoor plans and that really sucks.  I understand but I still feel isolated and yucky about it.

I want my old body back! It wasn’t all that great but I would give anything to walk back and re-do whatever it is I must have done wrong so I could not be sitting where I am now.

I am not feeling sorry for myself.  I promise.

I just want to know if there were time travel, could I fix this by somehow doing things better?

My dad always warned me to not follow in his footsteps.  He was sick a lot:   a heart attack at 42, emergency quadruple bypass at 54 and then dead of renal cancer at 66.  He always told me that I had to slow down and calm down and not care so darn much about everything.  He was worried I would get sick too.  I know that there is more to it than that but I wish I could have heeded his warning somehow.  I also hope I make it past 66, since he and my uncle both died at that age,(brothers).  My siblings have already outlived our sweet daddy.  I still miss him every day.

So, what has this to do with the snowpacalypse?

Much later date:

I don’t  think it had anything to do with the snowpacalype.  I think I was freaked out and stressed because we were in the middle of a natural disaster!

That is my prognosis and the truth.

Snowpacalype was a tough, tough week for us and the rest of Texas.  I am going to end this here: It was character building.

 

 

Today I want to write about something deeply personal.  (Oh yeah, I do that all the time:)

I want to think outloud about one of my biggest coping mechanisms in life and how it stretches its fingers across my world into other areas and how it is affected by our current world crisis.

I started singing in choir at age 7.  I was part of a successful church music program and I also had a great elementary music teacher.  Even before that, I had been chirping away to my family.  At get togethers I would beg for someone to let me sing, “Somewhere Over The Rainbow.”  There were a lot of Judy Garland fans in the family.  Unfortunately she died when I was four years old. This preoccupied and upset me as  a young child more than I think was normal.  I had been convinced we would meet and she would ask me to sing on stage with her.

Alas, I had to move on to other artists.  My next fixation was Karen Carpenter.  Just like Judy, I knew I could match my voice to hers.  Actually, I did match it except for the fact that I sounded like a child.  I memorized every quirk, every pause, every crescendo and decrescendo.  I also was learning to play the piano.

Fast forward to middle school and we had moved to a small school district in the country.  I sang my heart out.  I auditioned for every contest they had.  I didn’t always win but I sang anyway.

I joined the band in 8th grade and from there on through 12th grade I was in both band and choir and sometimes, drama.  Starting in my junior year in high school I began taking private voice lessons.  l was the main soloist at our small church and I sang all over the place for scholarship money to go to college.

College began and I was a music major, with voice as my primary instrument, but  against my father’s wishes.  He thought it was completely impractical and I would probably end up god knows where without a job.  He told me that getting a teaching certificate was not optional.  I wasn’t happy about that.  I had grander plans for myself.  The great opera houses and even Broadway twinkled in my plans.

At the end of my sophomore year I found myself transferred to a larger University, from UT San Antonio to UT Austin and very let down by the music department.  It was backbiting and mean.  I didn’t know if I could do it.  My parents made clear they were not going to support me in Austin in that degree. I was overwhelmed and didn’t know how I would ever get it done.  I lost my mojo.

So I became an English major with a history minor and the rest is.. you know.. history.   I started to acrue graduate degrees in other areas, but, I never stopped singing.

I found my way to University United Methodist Church at age 22.  They had an amazing music program that was more challenging than the choir I had left at UT.  It not only challenged me as a musician, it was a family.  I had come home. I even started taking vocal coaching again.  I thrived on that and could not imagine life without it.  In fact, it is there that I first knew that music and corporate (group) worship are the ways in which I connect to the Almighty.

I became friends with the conductor and his wife and family.  My world revolved around rehearsal and singing at services.

During that period I finished two degrees and started teaching English at the college level.  I enjoyed it but I felt a calling to be a spiritual leader.  It took a lot of time to decipher that call.  To be honest, I don’t think I have ever deciphered it.

I went to seminary and I joined another choir there. I was set on the path of becoming clergy and I did become that.  For the time I had my own church I was not just preacher and teacher but also the music maker.

When we left New Jersey and came back to Texas after four years, I decided to sing with my former director.  He was now divorced and with another church.  I went there and found a new choir family.  I continued to learn and to be challenged by singing his original music and standard oratorio repetoire.

After a stint with another local church choir I hit a big stopping point.  It was my health.  I know that any readers of this blog know what happened there.

Here I am a little over 10 years later.  My voice is a croak and listening to good choral music is almost painful.

I even found a new faith.  One that matches my identity and makes a great deal of sense to me.  I want to attend worship and learn the liturgy in the best way I know how: sing.

In fact when I look back I think it is pretty obvious what the ideal clergy type spot would have been for me: Rabbi Cantor.

When I sing beautiful music that praises the Creator, I feel that I am surrounded by the spirit and lifted to a place where contact with the Almighty is somehow more possible to apprehend.

For me, music does the same thing that I think meditation does for some.

I also feel similar about the prayer in corporate worship.  In a Jewish worship service there is a great deal of this and I find it hypnotising and comforting.  It takes me out of my everyday thinking and lets me empty my mind of its everyday junk.  Once it is empty, I can allow the Divine in and possibly, rarely, even hear what is being said.

So where does this leave me?

Frustrated.  I am frustrated.  I want to sing and I want to do it with others.  I may not be up to the fast pace of my former choirs.  I used to rehearse every week and sing every Sunday, sometimes at two services.  That is a lot of work.

That’s ok.  I will find the right rythm and the right place.

If nothing else this pandemic has taught me what I find vitally important.  I need to be around people.  I need to actively worship and I need to make music.  I don’t sound too great but I am anxious to take lessons again.  I don’t think it is hopeless, yet.

Maybe this time of being forced to live quietly and to look inward has been just the boot in the fanny I needed.

Please let me know how this works for you. Do you attend online services at your place of worship?  If so, does it satisfy the same  parts of you that worshipping in person does?

Are you a singer?  Have you always or often been part of a choir?  What do you think about the fact that we are living through a time when singing together can literally kill us?

What a strange thing.

It will be interesting to see what happens as we are freed from the grips of  enforced quarrantine.

All I can do for now is try to listen to the music I know and let myself be taken away as I glory in it.  I always imagine myself in the center of swirling sound.  In the center of the sound I can hear all the individual lines: the soprano, the oboe solo, the tenors, the first violin.  I hear them all separately but also all at once.  I guess it sounds corny and weird but it has always been like an arrow straight to my heart and then to my soul, if I let it.

I go for long periods of time where I don’t let myself immerse in that  direct channel, open  pathway, or whatever it is.  I don’t know why I resist it but I think it is  the same type of  human nature that makes any of us resist something we know is good for us, even if it reminds us of a painful separation.

What strange beasts we are.  Or, to be fair, I don’t know if anyone is as strange as me!  I am, without a doubt, a strange beast.

Okay, I think I am done.

This essay rambled on a bit but I have been trying to explain something that is inexplicable.

It is like the very nature of Adonai, something we can see every once in a while, but just a shadow in a darkened mirror that  appears much more clearly to me when I am making music with others and specifically in a worship setting.

I promise myself to stop being afraid of shadows and having  regret for things long past.  I want to open myself to what lies ahead.

I want to open myself to whatever G-d has in mind for me… if only I would stop and listen to the music.

 

 

 

I am of two minds just now… like many of us, I imagine.  I am so tired of being quarantined by this effing plague that I have started screaming at inantimate objects, but I am also trying each and every day to find a vaccine for myself.  Due to the ineptitude of our federal and state governments, I can’t find a vaccine anywhere.   Damn.  I just want enough immunity so I can be like the ‘normal’ people in the plague.  I will wear my mask, wash my hands and go out to more places than I have been to since last March.  Alas, I don’t know when that will be.

Whatever.  Yes, I am grumpy.  My lupus is in full swing and it is telling me to go to bed and die.  It hurts everywhere and I am fatigued most of the time.  But, I don’t listen to it anymore.  I started a new medication last week that lowers my immunity further (yeah!) but might make me feel better.  I have to try.  So far I have not felt any effects other than nausea and pains in my stomach.  But, my online tutoring gig started today so I am up and creeping along and trying to do what I can.  I am probably making things worse by over exercising whenever I feel a bit better.  I need the work out to dampen the depression.

I know there are others in much worse shape than me.  My heart constricts for the 330, 000 dead (just in this country!) and those they left behind.  And I pray for those that have the disease currently and are praying to just recover.  This monster is so big and we have had so few good weapons to fight it that it is just overwhelming.  I am praying and I am talking to a lot of good people trained to keep my mental  and spiritual health together.  I hope others are too.

I am angered beyond belief that my 21 year old son attends a state college where they refuse to comply with safety standards for Covid 19.  They risk his life, mine, and others  without asking.  I will make certain they hear from me on this matter.

And yet, I think we have a little reason for hope on the horizon.    Tomorrow Joe Biden and Kamala Harris will be sworn in to the offices of President and Vice President.  They have a plan to roll out the vaccines and help our economy and ramp up help to beleaguered hospitals.   I really hope they can get their work done and that all of the states comply.  There should be no such thing as a ‘red’ or ‘blue’ state at this moment in time.  There are states with PEOPLE in them.   These people are all of our loved ones, and they are us.  We have to stop this beast as soon as we can.  I feel like we have been fighting on so many fronts for so long that we have forgotten what ‘normal’ even looks like.

I am praying for all of us to join together and pray for forgiveness for our anger and hatred of one another’s views.  I pray for trust to replace mistrust.  I pray for health instead of death and sickness.  I pray for the men and women serving on the frontlines in the hospitals, many of whom have been ill and have died from their jobs.

Lord let us recover as a nation of people and help us move on.

 

Last Friday, just three short days ago, I had surgery on my right eye.  I really underappreciated how much it would hurt.  I am still glad I did it but the point is that I am appalled that when I had it done three years ago I was so out of it and sick that I really didn’t remember much of anything.

Let me back up  a bit and explain why I have had eye surgery in the first place.  I was born with a severe case of Amblyopia in my right eye and a severe case of Strabismus in the same eye.  In other words, my right eye has pretty horrid vision problems and it came  crossed. A siamese cat has nothing on me!

I remember that  as a small child that I would look at my nose and wonder if everyone could see their nose as clearly as I did.  I mean, my eye wandered towards my nose and it just seemed like my nose was in the way somehow.

My parents took me to our family ophthalmologist.  He was a very old man who treated my uncle with his eye issues.  He put a patch over my good eye and told my parents to take me home and make me use the bad eye so I could strengthen it.  That didn’t last very long.

I was all of two years old and I was constantly falling or running into things.  I am sure I was constantly screaming and crying in a very loud–two year old way.

My parents said it was impossible and that I would just have to use the one good eye and we needed to fix the Strabismus or cross eye part of it.  So, that began the cycle of surgeries to correct the cosmetic side of things.  Visually, I don’t think anyone really know or understands what I see.  For most of my life I have been declared blind in my right eye.

My parents decided to approach this from the standpoint that if we didn’t make a big deal about it I would not consider it a handicap.  Instead, they enrolled me in all kinds of of lessons that required the thing I just don’t have: hand eye coordination.  I am left eyed and right handed.  I do not fault them for this strategy though, in general it worked really well.  I never thought of myself as handicapped, just clumsy.

I have always liked being active but by the same token I have always stunk at sports that involve balls that have to go in specific directions, or worse yet, be caught or batted back somehow.  That whole thing just got depressing.  I sort of wish someone had just said, “Hey, you are not going to do well at this because you are blind AF.”  That might have saved me some self esteem issues as a teen.

My dad was really freaked out about a lot of things in reference to my sight, now that I look back on it, but I didn’t think about it then.  He absolutely HATED getting in the car with me behind the wheel.  Also, he wouldn’t let me mow the lawn because he thought something might fly up and poke out my good eye.  (Hey, that worked fine for me..).

But aside from my vision I dealt with the constant teasing at school for being cross-eyed.  I had surgery at the age of two, and then again at four but all through school kids would say, “Are you looking at me, freak?”  It was really upsetting.  I hated it. My eye wasn’t off by much but it was enough for asshole kids to pick on.

When I was a freshman in college my brother in law, an optometrist, decided that a ophthalmologist he knew might be able to align my eyes a bit better than what the doctors had done way back in the late 1960’s.  The 1980’s had brought about the new techniques of ‘microsurgery’.  So, I went to Houston and this cracker jack surgeon did an amazing job for me.  I felt bullet proof for years.  I knew my sight would never improve but I didn’t care.  As long as I didn’t look like a freak, I was happy.

Well, that surgery held up for a long, long time.  When I got sick in my forties is when things seemed to come undone.  I started to notice it when I was tired.  I also knew things were off when strange doctors in hospitals and E.R.’s would stare at me and say, “look at my finger.”  Dear Lord but that is annoying!  They ask me if I know my eye isn’t tracking with my other eye.  For frick’s sake, “YES!” I tell them.  “I KNOW!”  I have been me this whole time.  I give them the abbreviated version of Katie’s eyeballs and they usually shut up.   And then the next doctor comes in and we start all over again.

Anyway, three years ago an Optometrist recommended a doctor here in Austin that did the surgery on adults and suggested I give it a try.  I did.  I think it worked for a while.  Then I went to Dallas and had surgery and I fell apart and was in the biggest mess of my life.  Maybe that undid it.  I don’t know.

This fall I decided that my insurance premiums were paid up and I had time off from work over the holidays, so if the doctor thought she could make it better, why not?

She has claimed she can give me more sight in the eye as well.  I do not understand how and my brother in law, who has practiced for over forty years and been looking at my eyes the whole time, is skeptical, but what the hell?

So, here I am with my fingers crossed and hoping my eyes aren’t crossed… for once.

I guess it is just vanity, but damn it! I can be vain, right?

So, here it is a bit more than two weeks out of surgery as I finish this.

My eye is still not healed.  It looks  more aligned some of the time but I was told it could take a full eight weeks to make its final adjustment.

I am crossing my fingers this worked.

I have also realized that if this didn’t work I probably need to make my peace with the fact that my eyes are not going to align again.

I don’t want to keep trying.  I think that is stupid.

So right now I am not focused on my nose but I tend to close the eye when I am tired.

Please wish me luck and if you see me, and for crap’s sake, don’t ask if I am looking at you!

Cheers!