PTSD Observed

It hasn't been the best fall ever.  Due to an extraordinary amount of stressful events, I've been in adrenaline overload and very jumpy.  (I call it a PTSD "Flare Up")  So when we discovered that the furnace needed to be replaced, I immediately was CERTAIN that the Sears installation guys were really murderers.  (Remember my Dad was murdered by roofers)

And when we discovered mice in the pantry, it seemed like every bit as dangerous and life threatening as murderers installing a high energy efficient furnace.

And then my world was put into perspective by the discovery that Charley has cancer.

Okay here's what happened:

First of all, when the day for the furnace to arrive came, I realized that no matter how hard I tried to be rational, I just wasn't going to make it.  I am "not entirely sane" but I can see sane on the horizon.  So I looked through my phone book and at every name I asked myself, "Am I okay with this person knowing I have PTSD?" If the answer was, "Yes." I called them and asked them to call me during the day on my HOUSE phone instead of my cell phone. So the murderers installing the furnace would know that, although I am home alone with my disabled son, people are checking up on me.  My friend Eileen actually came over, which was completely awesome.  Having another person in the house was so great.  And the phone never stopped ringing!  Which made me very grateful for good friends.

It was especially terrifying when the Sears Furnace Installers (Otherwise known in my mind as "The murderers") arrived.  They had that lean, nervous look that reminded me of not only the 4 crackhead roofers who murdered my dad, but also Ralph the serial killer.  Eileen hadn't arrived yet, but I called both my brother and my friend who both know first hand what this feels like.  They didn't think I was stupid for being completely freaked out and they really helped me calm down.

So lesson one: ASK FOR HELP

The furnace is great, by the way.

For the next week or so I was only able to sleep if I turned the burglar alarm was on at night.  This is something my husband really doesn't feel comfortable about, but went along with since it was clearly necessary. (Thank you, Charley)

So lesson two: DO WHAT YOU NEED TO DO TO FEEL SAFE

Then we found evidence of mice in the pantry.  This paleontologist's daughter completely freaked out again.  Even with the burglar alarm on, we are not safe from invaders!  It felt like a massive emergency and I spent way too much money at Home Depot buying things to iron clad the pantry from further incursion from these plague carrying tiny monstrosities.  Fossil mouse jaws: OK.  Mice, scorpions, rattlesnakes, etc. in the desert while camping: OK.  Live mice pooping in my linen drawer: apparently NOT ok.  Not by a loooong shot.

This might have been an over-reaction.

I mean, most people live their lives with the illusion that they are safe and in control.  They get a lot more accomplished than I do because they don't waste as much time as I do worrying.  I have no such illusions.  No one is really completely in control or entirely safe.  That's true.

But during a PTSD flare up, I also have no sense of relative danger.  Mice in the pantry, furnace installers, putting Sam in the car in the Jewel parking lot, all seem like life-threatening emergencies.  I live with the illusion that I am in constant danger and that I have absolutely no control over my circumstances.  I have trouble thinking of a good reason to leave the house.  And then I worry about invaders.

It seems possible that reality is somewhere in between the common illusion and my personal illusion.  What is needed is perspective.  Which brings me to Charley's recent trip to the hospital.  He's 58 years old and he has prostate cancer.  Wait.  What?  That's just not fair!!!!

But the thing I'm noticing is that HE is less worried about this than I am!  He is listening to the doctors and doing what is required without procrastinating.  He's a little nervous, but he's okay.  He just might be responding appropriately.

Lesson Three: LEARN FROM THE REACTIONS OF OTHERS.  They might be more sane that me.

But here's the thing I'm pondering now.  I'm really upset about this cancer thing, of course.  But I'm LESS upset about it than I was about the mice (or the furnace installers).  Does this mean that the current flare up is dying down?  OR is this just a deeper PTSD reaction?  Here's something I know how to do.  I can deal with hospital crises.  I know how to nurse.  I know how to take care of medically challenged family members.  I can and will take care of Charley.  No One is going to die on MY watch.  Christmas this year will be me taking care of Charley and Sam, both of whom will require full time, round the clock care and I'll be doing it all by myself.

Isn't that the way life is supposed to be?  No wonder I'm calm!  It's PTSD Nirvana.

Bird Talk

Sam and I took the birds to their annual physical this week.  They were quite nervous and the Cockatiel was very mad that I couldn't find his travel cage.  He loves to look out the car window as we drive.  Instead I had to put him in a cardboard box.  The Parrot went into her travel cage very easily, but she doesn't like riding in the car.  We made it okay and, once in the exam room, I let them both out.  


There we sat waiting for the doctor.  The Parrot on my left shoulder reminding me what a pretty bird she is and murmuring bird jokes in my ear.  The Cockatiel on my right shoulder alternating between ignoring me and hiding under my chin.  And Sam sitting with his vibrating tooth brush and laughing at us.


It was a perfect moment.  All four of us chatting away together and enjoying each other's company.  


It struck me that two of the members of this conversation are completely non-verbal and the third (the Parrot) doesn't really have much to say for herself beyond  "Hello" and "Pretty Bird." 


That makes me the only one of the four of us who thinks talking is an essential part of life.  I REALLY like talking and thinking!  My mother likes to say that I came out of the womb talking.


Yet I'm sitting in a vet's office having a stimulating conversation with three of the most significant personalities in my life.  Charley is a great person to talk to, but he's gone all day and when he comes home he'd rather take a nap or play his instruments.  I mostly talk to these three.  And they are happy to listen to me babble.


"Oh what a noble mind is here o'er thrown," I thought.  "I can feel my brain shrinking."  Still, it was a perfect moment.  We were all three having such a good time together.  


Maybe words are not so great after all...  No.  They're still pretty terrific.  

Sinsinawa

Years ago I met a woman who had cared for her daughter at home until the daughter's death.  She told me that, during her many years as primary caregiver, she learned the value of "cleaning her pipes".  Every few months she would go on retreat and just cry.  She said "Why?" was not a question she bothered with much.  She just cried.  Then she slept.  Her husband didn't understand why this was so important, her friends worried about her, but it was the single biggest piece of advice she had for me as a new mom with a son with profound disabilities.

I don't remember this woman's name!!!! But she is one of my wisdom figures.  I think she was the first person (not counting the Book of Job) who told me that "Why?" is a pointless question. It just drives one crazy and never gives an answer that satisfies.  I took her advice on the retreat thing and did indeed go on retreat one day a month for years.

Then my dad got sick, and then he was murdered and Ben got married and my life sort of shifted.  I haven't been on retreat in over 5 years.  So when I realized that summer was almost over and I was so far beyond exhausted that I didn't even remember what exhausted felt like.  I knew I needed a break.  But there isn't a lot of money for a vacation.  That's when I remembered this woman's advice and the fact that, at one time, not too long ago, I was a Spiritual Director.  If anyone should know where to go on retreat, it is me!

So I started calling places I used to know and was startled to find that there are actually people in these places who remember me!  I don't remember me, but they do.  And I booked a 5 day stay at Sinsinawa Mounds, Dominican Conference Center.

There, with the help of a very wise and funny director, I began to let go.  Here in the city with my stressful life, I don't realize how tense and wired I am.  There in the peace and quiet, I suddenly felt like I had electric current running through me.  I couldn't settle, I couldn't sleep, I couldn't think.  I just vibrated.   I was in shock.

There's no huge event in my life that caused this shock, it's the cumulative effect of everything.  I don't have Post Traumatic Shock Disorder, I have Chronic Traumatic whatever.  

Sure enough, after about 24 hours of vibrating, I suddenly crashed and I cried.  And then I slept.  I slept, I ate, I walked, I ate, I knit, I slept, I ate, I slept, I knit, I slept.  Then I cried some more.  Then I knit.  Then I slept.  All the journals and books I brought with me lay unopened.  I did buy three more books and bring them home to read...

(I love these words.  "Wired" as in I was vibrating with electricity and adrenaline.  "Shock" as in hit by lightning that was attracted by the electricity running through my nerves. "Crashed" as in a bullet train hitting a mountain.) 

The only thought I had was that humility is knowing who I am.  I have limitations, I am not God.  I have gifts which are given to me by God.  I am nothing more (OR LESS) than simply me.  

Humiliation, on the other hand, is something that happens to me when I forget who I am and try to be someone I'm not.  God, for example.  Or Martha Stewart.

Sr. Ellie, the wise and funny director, suggested that I feel empty because I have let my gifts lie dormant.  Perhaps that is so.  Perhaps I am so distracted by my attempts to keep Sam going and the house picked up that I neglect to use my gifts.  What are they again?

5 days is not enough.  I could have stayed 3 weeks.  I'm back home and am still struggling with the desire to sleep and knit and sleep and eat and sleep.  I have a few other things to do, but I'm trying to remember to focus on what is most important.

For me.

I am so grateful for the wise women who always seem to come into my life just when I need them most!  I would say that my "pipes" are cleaner now, but still a bit clogged.  I need to take seriously the advice of the wise women and put myself and my gifts a bit higher on my "to do list".

Happy Birthday

It is 364 days until I'm 60 years old.  Sam turns 30 in 18 months.  He's been my lodestone for half my life now.  That's a welcome surprise.  I spend so much time trying to keep him alive and fearing he will die that I don't stop to realize that we're doing pretty good!  We've been together for roughly half my life.  I met Charley when I was 15, so I've been with HIM for roughly 75% of my life.  Talk about "significant others"!  It's a very settling thought.  This is it.  These are the men in my life.  We three are a unit.  Home is where they are.


Other than that, I can't think of anything good about my 59th birthday or the fact that 60 comes directly after 59.  I"m feeling kind of depressed.  I've been obsessed about it for a couple of weeks.  I keep telling people that I'm almost 60 and their reactions are reassuring.  They are always shocked.  "I had no idea you were so old!"  That's nice, because I didn't have any idea either!


I've never really bothered with milestones, but for some reason turning 60 is becoming an "issue".  I don't think I'm ready to be old.   I'm suddenly in a hurry.  There's not a lot of time left.


I think it's time to get serious about a few things.  For example: diet and exercise.  I have an amazing body.  No matter how much I abuse it with worry and overeating and a sedentary lifestyle, it has always stayed pretty strong and healthy.  Lately I've noticed some pretty permanent aches and pains and I have gained far too much weight since I got married.  Goal one: get serious about taking care of myself.


Goal two is move to Portland.  I have learned to appreciate Chicago.  I've lived here for more than half my life.  But I'm not sure how that happened any more than I know how I got to be 59.   I still think of myself as a west coaster.  I'd probably be happy to live the rest of my life here except for two things: Portland is better for Sam and Portland is where Ben is.  


Goal three is to remain a significant part of the lives of my grandchildren.  This year we've had two quick visits from my daughter in law and youngest granddaughter and one very long visit from the two older grandchildren.  (And a brief glimpse of Ben).  It's not enough.  We bond very nicely when they are here, but long distance relationships are hard to maintain and children are so busy with what is right in front of them.  Yesterday Tahreq and I performed a song he'd written in front of church.  I was so proud of him!  I want more first hand experiences with them.


In spite of the fact that I've been mentioning my impending birthday for weeks now, it doesn't look like anyone is going to remember that today is the day.  In fact, when we talk about what we are doing today, I keep reminding Charley that I have to get my driver's license renewed today, but he doesn't seem to make the connection.  I wonder what I'm going to do.  I don't particularly want to host my own birthday celebration.  I definitely don't want to cook dinner and make my own cake.  I think I'll just remind them that it's my birthday and insist that we go out to dinner.  I don't really want a fuss, at least not this year.  NEXT year, however...

Robins

We have been honored to host a couple of industrious robins this spring.  I'm pretty sure it is only two.  They built a very messy nest over our back door and an incredibly perfect nest in the window box on the front porch.  The window is in Sam's bedroom closet, so we had a great view from in the house that didn't bother the robins too much.  They laid 4 eggs in the front nest first and three of them hatched.  It was just amazing to see them grow.  It seemed like they doubled in size just about every day.  

Our entire neighborhood was awestruck.  I could see them shushing their dogs as they walked by.  Several people told me that this was a sign of good luck - and they didn't even know about the nest over the back door!  The robins were pretty friendly while nesting, even letting me snap some photos.  I'm sorry to say, the pictures didn't come out.  But once the eggs hatched, they suddenly were not so friendly and began dive bombing anyone who came up the front steps.  (By a strange coincedence, "The Birds" was on tv that week.)  I began to think we could cancel our alarm system since we now have attack robins.  But Charley met one of them on the front steps and had a long conversation with it.  We assume it was the father bird since he seemed to have a Marine buzz cut hairdo.  After the man-to-man talk, they stopped attacking.  

Then one day the nestlings were so big I couldn't figure out how they all stayed squeezed into the nest.  The next day they were all gone.

Two days later, I noticed that the messy nest was occupied.  I discovered that I had a great view of this nest from my kitchen window.  Still no good photos.  Sam and I go out that door and I was a little concerned about the attack robin phase of robin rearing, but they didn't bother us.  They seemed to enjoy watching me with Sam. They would follow us as we walked from house to garage, chirping encouragement!  A horse breeder told me once that her animals seem to have an awareness that children with disabilities need extra gentleness.  I wondered if the robins knew that this was my fledgling.  Yesterday they all flew away from that nest.

This morning we noticed one fledgling on the ground in the back yard.  It seems to have "developmental disabilities".  The thing that amazed me was how hard both parents were trying to bring the fledgling along.  They just were not going to give up.  They were fierce about trying everything they could think of to help this last one get off the ground.  I was inspired by their determination.

I don't know what will happen.  Our back yard is a pretty safe place with plenty of stuff for a bird to eat while it takes extra time to learn to fly.  It looks like the parents know what they are doing.  

I have always heard that animals kill the "runt" of the litter.  It always bothered me.  This doesn't seem to be true for robins.  I'm rooting for them.  They aren't cold and uncaring.  They don't believe in survival of the fittest.  They are passionately trying to save this little one.  If they succeed in giving their runt that little extra boost, I'm sure they will be proud of themselves for years to come.  If the baby dies, at least they will know they gave it all they could and they did their best.  And the memory of the extra time they spent will be sacred.

I can relate.

Exceptional Parents

There is a great magazine (or anyway was) called Exceptional Parent for the parents of children with developmental disabilities.  I haven't seen it in awhile, I guess because Sam isn't really a child anymore.  But the idea has stuck with me.  Exceptional children require exceptional parents.  Sometimes I have risen to that challenge and sometimes I have not.  It has troubled me lately that I am on the "not" side of the equation.  We are coming up on 60 and retirement and I am TIRED!  But Sam's needs keep growing, even though he doesn't.  When Charley retires from teaching we will still need income and we are actively thinking about what we might do.  I keep asking myself who I am and what am I good at.  The answer is always that I am Sam's mom and I am good at being Sam's mom and also a lot of craft stuff.


So fine.  My career, so to speak, has effectively been being Sam's mom.  I should think of it as my career.  


At one time I was a pretty great Executive Assistant to several guys.  Now my title is Personal Assistant to Sam.  (for which the State of Illinois pays me significantly less than the other guys I was Executive or Personal Assistant to... including the church job!)


Nevertheless.  I have been keeping a log of my day and started to explore time management for caregivers.  I've taken a lot of time management classes in my life as an Executive Assistant.  They often bugged me because they advocated delegation as a great method of time management.  When you are the "delegatee" that doesn't help much.  Now that I am a stay at home Executive, there has to be a different sort of time management that will work for me.  


So I am taking all the stuff I learned and all the realities of my crazy life and trying to come up with a new system.  I call it the "worry book".  I just keep a spiral notebook and write down all the things I am worried about not getting done.  Housework, bills, Sam Care, phone calls, sweaters for the grandkids, grocery shopping.  Then on the next page I put tomorrow's date and start thinking about what is most important to get done tomorrow.  I have discovered that I think best in the late afternoon or just after dinner.  Doing this in the groggy morning when I have to get Charley and (Hopefully Sam) out the door is just not effective.


I have three columns.  Time, Task and Actual.  I write down the time I hope to get things done and the things I hope to do them.  Then on the next day, I keep track of how the day goes and what time (if ever) I actually accomplish my tasks.


In this way, I'm getting a written record of how my day goes and hopefully I will be able to see some ways of becoming more effective at doing my job.


Comments?

Exciting day

Sam and I went to Starbucks today to see are good friend Eileen.  Eileen worked very hard for many hours trying to get Sam to say her name, and he used to say it.  But he hasn't said anything in years apart from the occasional "Sushi" request!

Later this evening we went to CVS to pick up some meds.  Eileen is the manager of a CVS store.  Just outside the CVS, Sam stopped and said, "Eileen"!!!!  Inside I was showing him a toy I thought he'd love, but he didn't seem too interested.  I said, "Sam don't you want this?" and he said, "No."  When we got home I was a bit encumbered with some packages and, of course, Sam.  I stood at the back stairs and wondered outloud, "How are we going to manage this."  Sam said, "Up."

Of course the really sad part is that he has these moments every now and then.  And then they are gone again the next day.  But it was really great while it lasted. 

It confirms in my mind that he really does know what's going on outside his head, he just doesn't remember how to talk very often.  One doctor told me that is very common among stroke victims.  His theory was that Sam suffered a stroke just a few weeks before birth.  Certainly, Sam has many things in common with people who have had a stroke in the same part of the brain that Sam has damage and treating Sam as though he was a stroke victim has been a very good plan.  It's probably the best theory we have about what is wrong with Sam.  This inability to speak even though he understands what is said to him is called aphasia.  He doesn't understand everything, but he understands a lot.  I never know how much, but it seems safest to assume he understands just about everything. 

I wish we knew.  I wish a lot of stuff. 

I went to the Esperanza Community Services Annual Banquet last night.  It was great, as usual.  Amazing food, great art, saw a lot of people I really love and laughed a lot.  Bought a quilt made by my friend Margaret.  That's a real treasure! 

But there is a real problem with going out in public.  People say stuff and I don't know the correct response.  For example, several people last night said that old line "I don't know how you do it.  You are amazing."  I don't know what I'm supposed to say to comments like that.  I have tried many responses and rejected even more.  Like I have never actually said, "Well, my parents are from the Planet Krypton."  Last night, I came up with a new response.  I said, "Well, he's just so darn cute.  It really makes things easy."  I haven't slept in two nights, but he's so cute that I don't mind... much...  Well I do mind.  A lot.  But I don't know what else to do.  Oh! Oh! There's a good response: "I'm just too stupified with exhaustion to think of an alternative to doing what I do."

Another response I've been thinking of using is to tell that story of the frog in the boiling pot.  You know the one: If you put a frog in a pot of boiling water he jumps right out again.  If you put him in a pot of cold water and gradually turn up the heat, he'll just swim around until he's cooked. 

If someone hands you a kid with profound and multiple disabilities and tells you the whole litany of problems all in one go, you run for the hills.  On the other hand, if someone gives you a beautiful baby boy who just has trouble swallowing, you learn to cope.  Then they say, "well he seems to have one or two other problems."  And you notice a few more as the weeks and months go by.  Each time you say, "Well, that's just one more little thing." After awhile the doctor can say, "well, he seems to have spinal meningitis and he's probably going to die in the next few hours.  Oh no.  Our mistake, it's just an ear infection."  That's a great strategy because you hardly notice the next 42 little new things wrong because you're so happy he made it through the spinal meningitis thing.  After that, they keep on adding stuff gradually for 28 years!  So when someone comes up to you and says, "Wow!  You're swimming around in boiling water and you look just fine."  You say, "Well, he just so darn cute."

I don't believe that story about the frog.  Who would do such a thing to a poor frog anyway?  Or why?  Maybe I should go with the one about my parents being from Krypton.