Thursday, October 13, 2005

Remembering and forgetting

     My fifth trip to Denver was October 1 to 6, and it was by far the scariest of them.  The enormous shock and heartbreak of the first trips gave way this time to what Aaron has been describing about Kari's mental state.  As extreme as her physical condition was in the first weeks following the accident, I remember Aaron saying that Kari was still Kari, and there was tremendous joy in that.  Now many times she isn't herself, and that mind teetering on the brink of self and not-self has been truly frightening.  Even the advances take on such ambivalence.  For example, one night I was scratching her nose and forehead and said that I believed pretty soon she'd be doing that herself--that is, bringing her arm up and being able to rub her face against her wrist.  Sure enough, that very afternoon in therapy she brought her left arm close to her mouth twice, and her right arm to it over and over.  One of her therapists, Amanda, cried. But during the next several nights that ability to bring her hand up to her mouth also meant that in her mental state she could bite herself, and she tried several times to do that and we had to snatch her hand away from her face.  If someone had not been with her every minute, the nurses and techs said, they would have had to transfer her to the psychiatric ward.  That's how close we have come to an institutional acknowledgement that she's "gone crazy."  She's asked the doctors, "Do you think I'm crazy?"  Each time they have said a big NO.  They see her a few minutes a day, however, and while we take some comfort in their emphatic NO's, those of us who have sat for hours and hours have felt great fear.  "ICU psychosis," "Sleep deprivation psychosis," "Medicine induced psychosis"--the concepts help, but sometimes not much.  I still believe strongly that she and Aaron are going to be OK, but that belief went through earthquake-like shaking this last time.  You had to keep saying to yourself, "It's a stage she'll come out" even as you were pulling her arm away from her teeth the n-th time that night.
     One morning, after a very bad night, it was plain she thought she was back in 1999, especially when she referred to her "boyfriend" Aaron.  When I said she'd married him, she denied it again and again until she caught sight of the anniversary poster Aaron had made.  "How long have we been married?" she asked.  "Three years," I said.  And suddenly she settled down.  "I remember," she said.  I left the room to get a drink, thinking she was OK, but she was already slipping back out of reality and didn't recognize Aaron when he came in a few minutes later.  "I don't know who he is," she said to her Mom, "but he's sure good looking!"  You can't help but crack up at some of her sayings.  There are still moments of humor, and one reason she loves Aaron so much is that he makes her laugh so much.  When she moved to her new room, I brought in a huge, white garbage bag to put her stuff in, and later that day Aaron had poked holes in it, thrown it over his head and was going around the floor making ghost sounds.  "You're such a dork, Aaron," Kari said, but it was one of the moments of joy we all had during my six days there.  I should say, though, that having Jan Yessa around is a mini riot in itself.  Our stays overlapped, and I realized how much our family is forever indebted to her for her deep love and care of Kari and Aaron.
     Those moments of laughter, the moments when there's a small physical advance do light up the pervading gloom we have felt pressing around us lately.  We have to grab hold of them, and laugh and cry over them, and rejoice.  But as I talked to Aaron I realized again that sometimes when we make too much out of these things it sometimes feels like we're forgetting how--minute by minute, hour by hour--this whole ordeal is just so hard and awful, and for hours and hours that's all there is.  It is truly a dark night of the soul.  We laugh at her saying, "I don't know who he is, but he's sure good looking," and forget how terrifying it is for a loved one to look at you and not know who you are--this after a whole night, hour after hour, of her being in pain and, scariest of all, out of her mind.  Please stay with these two in this, their darkest hour.  It is so dark that sometimes even telling them they'll be OK doesn't help, but seems to hurt. 
     Even when she's "in" her mind it's been very hard.  "She's been getting a lot off her chest," her Mom said to me one midnight when I came on to take my shift.  All the fears and anxieties caused by the accident have seemed to revive every fear, every anxiety, every hurt she's ever had--something completely understandable.  I noticed that not all her arm spasms seemed totally involuntary.  It seemed that at least half of them came on at the same time another fear came up, another anxiety attacked her.  (The new meds she started on the day before I left were supposed to help her mind "rest" more.)  One night we were talking about the verses she did her masters thesis on in Isaiah 43 when I said, "Kari, do you know the verses at the end of the chapter?"  So many are about forgetting the former things, and about God blotting out our transgressions "for mine own sake," as it says in verse 25.  I told her the story, out of Poland, about the archbishop who called in a man who'd been causing trouble because he'd been speaking to God.  He wanted proof, so he asked the man to ask God the next time they talked what his (the archbishop's) principle sin was.  The next time they met the archbishop said, "Have you been talking to God?"  "Yes," the man replied.  "And did you ask him about my principle sin?"  "Yes, indeed."  "And what did God say?"  The man replied, "God said he'd forgotten."  Of all God's miraculous powers, the power to forget transgressions completely must be among the greatest.  It's a power rarely possessed by any human being.
     On the other hand, there's things we forget but need to remember.  One night her pain was so intense that she was screaming, "It's evil.  This evil is going to kill me.  Go away evil."  We prayed for her.  She gritted her teeth and got so tensed-up fighting off the evil she felt that I thought it was only making everything worse.  "Here's another way to think about it, Kari," I said.  "When evil comes around, don't fight it so hard.  You don't have to.  Remember, Jesus has already defeated it.  The pain will hurt you, but evil can't."  Her eyes shot open, and I think she would have bolted straight up if she could have.  "You're right.  I've told people that myself.  I remember now."  She relaxed.  What to remember.  What to forget.  What a hard and ever-changing task that is.  When you are also going in and out of your own mind, it must be nearly impossible. 
--Richard R. Guzman     


Jennifer Chesher said...

I am so proud of both of you, and Aaron, especially you. You've always had the strength to give even when you didn't have time to take for yourself. This posting gives me a prime example of that. I'm so glad that you remember yourself and what is important to you and Kari. I laughed and cried at the same time when I read about you running around the room with a bag over your head acting like a ghost. I could hear Kari's voice calling you a dork and see the smile on her face. You are both still the same strong and amazing people I have always loved and admired. You are always in my thoughts.


Charlie + said...

Dear Richard, Kari + Aaron,

Thank you Richard for your report.
This all continues to be very consuming for all of you, and all of us.

Kari, Aaron, and others I quite aware I have been on the same "class" of medication for 30yrs, and the identical medication many years when I was with Kari and Aaron. Actually, in 1975, the doctors took things one step further, though I won't go into that.

If one has Christ in one's heart, meds, nothing else can change that. Yes, there were several times Kathy "wanted her Charlie back..." And, of course, though my faith was always there, it was difficult for Kathy to wait for "God's timing".

I like this, Richard, in your entry.
""Here's another way to think about it, Kari," I said. "When evil comes around, don't fight it so hard. You don't have to. Remember, Jesus has already defeated it. The pain will hurt you, but evil can't." Her eyes shot open, and I think she would have bolted straight up if she could have. "You're right. I've told people that myself. I remember now." She relaxed.
Again, slow progress is real progress...


Charlie +

Tara Giebelhausen said...

Wow. This is all just so tough that it doesn't even seem fair. I pray that God stays with you guys through this whole ordeal and that you can feel his presence every day, even when it's tough.

Anonymous said...

I would like to know what the doctors say about Kari's mental state. Is this normal? What causes it? How long might this go on? Will it affect her Nov. discharge date? Has she seen a psychiatrist?

heather velloff said...

Thank you, Richard, for this insight and wisdom into Kari and Aaron's day to day life/ struggles. I know Kari to be a wonderfully deep and philosophical person, while at the same time being able to be one of the goofiest people I know! Aaron does have the ability to always make her laugh and that is a gift that God well equipped them with - one for which we are all so grateful! Kari and I have always shared such wonderful vivid imaginations and while that can be good, I can see how in her medicated, over-tired state it can also be a detriment. It must be a little like having a life-like dream and waking up to find you're not quite sure of reality... but just worse for her.
Kari's faith has always been so real to her. She has always been extremely sensitive to others' feelings and her own especially with spiritual matters. This evil she feels could be very real in one sense and also partly imagined. Either way, I know Kari is fighting a real spiritual battle.. in her mind and her body. Thank you for comforting her with Scripture and stories and the truth that God has already defeated evil for eternity on the cross. I know Kari and I know she knows these things, but she must long to hear them told to her over and over again to reassure her. Please keep doing that important task and thank you b/c I can't be there to do that myself.
"No, Kari, you're not crazy"
"Evil? maybe, but God defeated that, remember?"
"it's going to be okay. we love you sooo much and you're doing a great job."
Thank you from all of us to you and Aaron, and Mrs. Morris for whispering encouraging words on those long nights and for listening to all the things she needs to get off her chest whether they make sense or not.
Thank you. Truly you are God's angels to her.
All my love,

Anonymous said...

Without sounding too negative, I just want to say that I personally take offense to the use of the word "crazy". I do not think it's an appropriate term to use in Kari's situation or any other. I have personal reasons for this and do not appreciate the terminology. I think that sharing and making a prognosis without truly being an expert is wrong. Experts would never, ever use that word.

I wish that the blog would remain place where Aaron would post updates on Kari's condition and only Aaron. As much as I appreciate Richard's concern as a family member, I think that his comments send conflicting messages to Kari's condition. Maybe his should be shared as an e-mail to family and friends. The updates should be Aaron's.

Dawn Spencer said...

I have to say that Richard's updates have been very helpful for me and MANY others. Thank you Richard for your gift of writing. You help make this horrible journey easier.

MUCH Love and prayers for Aaron and Kari!!

Dawn Spencer (Alf)
Waukegan, IL

Anonymous said...

I think that we have to be careful with using terms like "gone crazy". It appears that Kari is having very strong reactions to the myriad of medications that are being experimented with to assist in relieving her pain and anxiety. This is very different than having a mental breakdown, though the term "crazy" is not appropriate in that context, either.

Anonymous said...

Dear Kari and Aaron, This is from Gabby and Daniel Atwell's mom-- I just wanted to let you know that as I go to pray for you the Lord has just really put it on my heart to pray for the Holy Spirit to comfort you both and that our heavenly Father would hold you both in His hands and protect you. Rest in Him. it must all be so scary I truly can not imagine, and although I have never been thru anything even remotely close to what you both are going thru I do know that the Lord is always there for us whether we believe at the time or not. We will keep praying for you both dilegently. With much love and caring Laura

Charlie + said...

Dear Richard, Kari + Aaron, and All,

I had some concern looking at the "blog" or site tonight. Things on these "blogs" sometimes get a little out of order. Richard was giving his report from a visit from Oct 1st to Oct 6th. The previous "blog entry" was Aaron on Oct 12th.

So, tonight is Oct 14th. The new med has not had the "week" to mature that the doctor said was needed. Even on the 12th, Aaron was talking about other meds being reduced to eliminate some of the sedation.

I can't ask Aaron for a thing, and never would. For now, if he can write us once a week, or if we have to wait longer, so be it. He has his hands full. We have encouraged him in recent weeks to get rest, I pray he is.

My prayers are with all for now, and I wait in confidence and faith.

The medications the doctors are using on Kari, especially when we can only imagine the number of meds require simple adjustments once or twice a week at first. Sometimes longer one has to wait. Sometimes one adjustment affects another, and again, another adjustment.

The overall technique to stabilize Kari right now is something I have been through seven times now over 30yrs. I can't see it working for me, and not Kari.

Blessings for Susan C., visiting soon from St. Charles.

Blessings on both Kari and Aaron for rest and nourishment.

Patience for all of us online as for right now, if Aaron has to choose an hour of sleep, or to write us, I would encourage him to sleep.

For us all to constantly have Kari, Aaron, and all family and friends in prayer.


Charlie +

Anonymous said...

Please...We need to have as much patience and poise (or more)as contributors to the blog as we expect of the family members that help Aaron with the task of keeping us informed!

The theme of all of Richard's updates have clearly been from the hurting heart of a caring, loving Father. (This is an as up close as you can be without being Aaron or Kari.) Surely, we can give him the benefit of the doubt, he did not wish to offend.

In fact, if the blog is re-read you will clearly see that he is quoting Kari's words concerning herself and her own fears. There was no attempt at diagnosis being made.

I hope we are now not to edit Kari's words to protect ourselves from offense.

Please, please Richard continue to post as you wish- especially since it helps Aaron and helps keep us more regularly updated as well.

Many of us have benefitted and been moved by your contributions.

Thank you Richard!

Anonymous said...

DITTO!!!! (to above blog)
Thank you, Richard, for all of your posts. Please continue to write as often as you feel led to do so. I have been deeply moved and blessed by many of your entries!
Thank you for taking the time to write to us!!!!

Anonymous said...

Ditto 2X-

Let's keep this blog open to the honest expression of a family involved in the struggle of their lives.
They need to be uplifted and suported, not criticized and silenced.
Let's keep this forum open; honestly reporting on the hard things as well as rejoicing for the good things.
Most of all, let's use it as a source of healing for everyone.
Kari would want it that way.

Kathy Timmers said...

"Ditto" X2!!!!!!!!!!!!!!!!!!!!!

When the movie "Braveheart" came out, it affected me deeply. My father had just struggled with illness after terrible illness until our loving Saviour took him home with Him to rest. And he did so with courage and dignity- he truly had a brave heart, and that is how I think of him.

Aaron, Richard, family members and friends that are there, day in and day out, night after night, praying, comforting, listening, caring......
you are all brave hearts. Sharing the most intimate details of how things really are takes great courage and we are all humbled and blessed by your openness and honesty.

And our dear Kari, the bravest heart of all, whose every moment is a challenge and each obstacle overcome leads to another.

We are all here around you, beside you, holding up your arms as you lift them in supplication. Thank you for giving so much of yourselves to us.
Much love,