Wednesday, June 8, 2011

So I’ve been told I need to update my blog; actually I’ve been told to update it regularly.

It’s been over two and a half years since my first surgery. Initially consensus among the doctors at Stanford was that recovery would take up to six months. But, two months after my first surgery I had to have a second brain surgery. After the second surgery, Stanford predicted a one year recovery time. At the one year mark we saw that little recovery had been made. Stanford then said "recovery usually takes two years." After a year and nine month and we still hadn’t seen as much recovery as we had hoped. My surgeon, Dr. Steinberg, then told me that he’d seen recovery happen in up to five years time. Though recovery has happened, (and much more than I think; I tend to forget that at one time I couldn’t even sit up in bed) I'm not expecting a full recovery any time soon. Altogether, I’ve had four major surgeries and three small ones, (not all brain surgery) all but two have left me with significant physical deficits. Though I can walk, practically I move better on wheels, and I can move my arm and my leg, but I don’t have a lot of coordination. As of right now my left hand and my left foot are paralyzed as well.

Often times people ask me how I’m doing physically. I say, “change is steady and slow but forward progress is being made!” Emotionally, however when someone asks me how I’m doing, I find it hard to encapsulate everything into a short answer. For me there is no short answer. How I'm doing emotionally is directly related to how I'm doing physically.
At first. my thought was that this would pass in a matter of months, I would make a full recovery and life would resume as normal. So, at the one year mark, when recovery hadn't happened as predicted. Reluctantly, (to say the least) I found myself truly contemplating a new life. Formerly, what I did or what I could do defined who I was. Physically I was confidant in my ability to handle most of the situations daily life presented to me. I went where I wanted, did what I wanted to... What I chose to do was a direct reflection of my abilities (obviously) and at whatever point I got stripped of these abilities, I was forced to redefined my whole person. For a while it seemed like everything around me served to remind me of what I couldn't do anymore, joggers, cyclists, cars.... My identity was so finely interwoven to what I could do that in as much as my body and abilities had been affected so too my sense of identity was affected as well. I felt like everything that was me had been completely torn down, and I was so damaged that any attempts at reconstructing my pre-surgery self were futile. But, that's not entirely true, I have made and am continuing to make progress. I know I'm speaking in the past tense about all this but it's not all behind me. I feel like the hardest part is behind me. But, redefining who I am and what I do is an ongoing thing. At present I'm struggling to manage the task of trying to reconstruct an image apart from my physicality, I have to discover new resources with which to build.
I mention all this because this is the space that I live in right now, in as much as it's about the very visceral physical side of things it's even more about the mental and emotional fallout that comes as a result of these surgeries.

As of right now I seem to fluctuate back and forth within the margin between feeling sad and being thankful. When I consider the reality of both what is today and what could have been. I’m often sad for what I have to live with. But thankful for what I still have. It’s a good thing for me to hear when doctors remind me that poking around on the brain stem (in my case twice) often time leads to more severe and comprehensive damage. That being said yes, I dodged a few bullets but I still have to deal with the ones that hit…. There in lies the fluctuation.
C.S. Lewis writes that you don’t really trust a rope till you’re hanging by it. If you see a thick rope coiled up on the ground it might be logical to say, that “that rope is definitely strong enough to hold me.” But it’s another thing altogether to say this while dangling over a cliff edge by the same rope. I used to throw around terms like “trust God” or “he will provide.” Two and half years ago I was thrown over the proverbial cliff edge. I could no longer just say the words I actually had to trust them….

One thing I used to think was that my faith had increased, but so had my doubt. After thinking about this concept a little bit more, I realized that this wasn’t very accurate, or even true. How could it be that my faith and my doubt were increasing at the same time? You would think one would most certainly cancel out the other. What I realized was that my faith wasn’t increasing with my doubt, in fact, I wouldn’t say my doubt was increasing at all, it was simply being exposed. My doubt wasn’t growing, I was being placed in situations where I had no other option but to trust, and at many times along the way, this became difficult. It’s like God was saying, “see you don’t really trust me like you say you do. You might doubt whether I care or understand, but that’s ok, I saw you’re doubt long before you did.” It’s almost as though my doubt was buried deep beneath a lot of Christian pretense and religiosity. But every time I encountered a new situation it was an opportunity for my doubt to be uncovered and my words of faith to be tested.

These past two years have involved me being in situations that show me how hard it is to trust what I can't see. And, this was completely understandable in that my life was turned upside down. But, I will say that my faith has become much more real. My reality, is that every time I encounter an issue, past experience tells me that I don't have logical reason to doubt that I'll be taken care of. I'd say one of the most profound and obvious ways is that needs of mine are often times met by friends and family, (especially my mom and dad), Without both I wouldn't be able to live here in Santa Cruz. whether it's a ride to the store, help around the house or trips to Stanford. My situation tests your friendship and it's reviled the love of my family, it has broadened and qualified my faith, it's teaching me to understand my self better and I'm learning to live well with what I have. My sense of loss is always beyond my words and sadness is firmly attached to it. But, my reality is that yes my life has been completely altered but I'm not left with with a hopeless want for good things in my future. Were I am now simply means that whatever I choose to peruse is truly good and void of trivial pretenses. all this is true, I am sad, I'm not sure that will ever completely go away but it's also true that like I said. My faith, my family and my friends have all sprung to life and all this makes dangling off the cliff much more bearable
T

Tuesday, April 28, 2009

Faithfulness

Hello Everyone,

God's faithfulness has taken on new meaning in the lives of the Strouss family. I am happy to report that Tim is doing very well. He is ready to have visitors. We thank you for keeping Tim in your prayers. Here is a recent report from my mom:

Tim is slowly getting stronger...yea! Apparently most of his problems were being caused by the heavy doses of antibiotics he was on to clear him of the meningitis. He came home at the end of Feb after a 5 week stay at Stanford. He had blood clots, meningitis, and a spinal fluid leak under his suture site. He was a sick boy. When he came home he was at his lowest ..physically and emotionally. 5 weeks of being in bed had taken a toll. His paralyzed left side got weaker, and seeing himself go so far down hill physically, took a toll on Tim's emotions. As he started to feel better he again began his home therapy routine, and is finally able to see some progress. He calls himself a "real boy" now as he can actually fully take care of most of his daily needs. (He was calling himself the baby). The last Dr visit was pretty positive. They still expect another full year of recovery. Unfortunately his left hand and foot will be one of the last things to recover.
His face is still pretty much no change. We have an appt with a neuro eye specialist next month which we are anxious for. Tim still can't close his eye or move it. We have to tape it closed at night to protect the cornea. He is getting stronger with his therapy (thank you Nick). His main issue now is he is still very dizzy. We were told that even tho he is getting stronger his brain actually has to have the nerves healed to be able to tell his body how to work again, but his goal is to keep his muscles ready and waiting! I am impressed with Tim's overall attitude. We had an insurance set back 2 weeks ago and he said "mom this is a time to practice what we preach. We can realize that God is in control, or we can let Satan have his power over us." He is encouraged by your emails and cards. He keeps his Bible close and listens to some great sermons on line. He is actually able to do one handed typing now! Yippeee. He is pretty confident that when he
can keep his balance and walk with a cane he can get back to Santa Cruz. As always when your thoughts turn to Tim we will hold them as lifted prayers for his continued progress. When he is ready to move back to Santa Cruz we will have a celebration....want to come?

Tuesday, March 10, 2009

Surviving the Folk's House at Thirty

As some of you may know, Tim has been home at the folk's house for a few weeks now. He was readmitted to Stanford about 2 months ago because he had meningitis. Unfortunately he had to stay in the hospital for one month. That month was difficult as the doctors were having a hard time determining why he continued to struggle with a fever and nausea. At the same time, it was hard for Tim to stay positive as each day passed. I was able to see the discouragement in his face, which was tough for all of us. We are so glad to have him home. His body has improved a bit, though it isn't easy for Tim to see this improvement. He is still unable to move his left hand and his face is still mostly paralyzed, but I can see it improving with each passing day. We are confident that within about 6 months, Tim will be able to walk again, as he is now in a wheelchair and dependant on others for care. Tim is beginning to feel bored because he still cannot read and it's been five months since his first surgery. We would appreciate prayer that is directed toward the healing of his body and continued brain health. The recent MRI revealed that his brain is in good shape and there are no new tumors. Praise God! Tim still is unable to type and cannot read very well, so responding to your e-mails is tough, but as always he is very encouraged by your prayer and effort in writing him. He is so thankful for every encouraging letter, text and phone call. Because he is in a wheel chair and having difficulty speaking, he would prefer to have visitors at a later date. But please don't let that discourage you from keeping Tim in your daily prayers, as we all value your every thought! So sorry it took so long to write this!

Tuesday, February 3, 2009

Just kidding...There's no place like Stanford!

Dear friends,

-Sorry I have not written for some time. Tim really didn't want us to spread the word that he was at Standford again. He didn't want to be "the center of attention" anymore, but we feel there's a reason for all of this and we want him to continue to be in your thoughts and prayers. I don't have much time tonight, so I am going to paste a couple of the updates my mom has written for you to read. You cannot know how much we value your prayers to our God on Tim's behalf...thank you.

In Jeni's words:
Jan 30 (4 days ago)


Bill and I just got back from a visit to Tim. (I took him to the Dr yesterday because I noticed the suture site from his last surgery had fluid under it, and he was feeling very bad and vomiting on wed night. They admitted him to evaluate) When we got there tonight to visit I confidently led Bill to the room I had left Tim in only hours before only to find a strange man in "Tim's" bed! They had moved Tim down the hall to a more "intensive care room", apparently they were concerned about the chest pain he was having. Well we found him and were just in time to see him whisked away for an MRI. We decided to wait the 40 minutes just to see him for a few minutes before bed. When he was being brought back I overheard the nurse telling the transport guy that he was being moved to the ICU....OK now what. Apparently they had seen something of concern on the new MRI. So the nurse did not know much so she paged the Dr.(We had a few moments of panic thinking about
the possibilities of what they are seeing on the MRI)... The Dr came in and told us they actually had not looked at the MRI very closely yet, but while he was in the radiology dept they did a ct of his chest. The reason for the move to the ICU is because they see multiple (there words) blood clots in his lungs! They moved him to the ICU and are starting a heparin drip, have put in a few more IV lines and will be watching him very close. They are also evaluating putting a type of screen in the arteries to the abdomen as they think he has some clotting most likely in the lower extremities and a screen or filter will stop the clots from going to the lungs or heart. They want him to not move around very much until the clots start to dissolve. So no getting out of bed! The pooling of the spinal fluid on the back of his neck will take a back seat (it is not as critical) for now. He has a drain catheter in his spine for that. Apparently this is not uncommon
with brain surgeries of a vascular nature like Tim's. You don't want clots to form but giving anti coagulants is dangerous when wanting to prevent brain bleeding. Sooo sometimes this happens. Actually the DR said it frequently happens. I once again am so glad he is where he is. If anyone wants to see him in the ICU the password is pepper. He is in the same ICU as before 2nd floor surgical ICU. You can only visit for one half hour every 2 hours tho. I will keep you posted as we know more. He is calm and peaceful and just goes with the flow! Bless his little heart.







Today, Feb. 3rd.

Tim had a screen or filter or "umbrella" put into one of the main arteries before the heart yesterday. It will "catch" any clots that might travel. He has some clots in his lungs, but the main worry was some clots they found in his left leg. His left side is the one that he is still not able to move very well. It is a common problem with brain surgery. You can't give the anti-clot drugs in vascular surgery like Tim had. So the risk of clots forming is no surprise. The other issue of the spinal fluid leak is being addressed with a lumbar drain. It is taking excess fluid from the spinal column so it will not build up and cause the headache and nausea he was feeling. So far they are not sure what they will do about the fluid. Maybe a temporary shunt or maybe they will go in and close the leak. (They think it is an opening where the sutures were). Tim is still calm and, in his words he just "hangs out". He is very tired so he sleeps quite a bit. The cultures
have not actually grown anything, but all his numbers say there is some infection going on, he is on antibiotics. They are talking about sending him home maybe the first part of next week. He will probably come home with an IV port as he will need antibiotics for awhile. We had to sneak in and help him shave tonight. They don't want him to cut himself, but the electric shaver did not work. Bill got the job done and not a drop of blood was shed. Tim looked and felt better after his shave. I am impressed with how Tim maintains a healthy attitude and once again thank you for keeping him in your thoughts and prayers. Jeni

Monday, January 19, 2009

There's no place like home!

Tim returned home (San Jose) a little more than two weeks ago. His first (and really, his only) request upon returning was Jake's Pizza and Coke. He had fantasies of eating Jake's in silence, which is basically what we did. I doubt I've ever seen anyone enjoy pizza more and it was our pleasure to watch him eat.

Tim enjoys getting up early, bathing and having morning coffee and quiet time. Most mornings are a little rough for him, as the medications and affects of surgery seem pronounced during that time of the day. But as the days progresses, he can be found doing physical therapy on the floor or near the banister with supervision, sleeping, eating and just being his pleasant self. He continues to make progress each day.

As of now, the left side of his face is still mostly paralyzed. It's difficult to tell, as we see him every day, but it seems that his face is improving. When he is not overly fatigued, his speech is quite clear. Drinking thick milkshakes through straws helps stimulate movement in his mouth and cheeks, so he obediently drinks something like this every day. Today it was a banana, peanut butter smoothie or two! =)

His right arm is getting stronger and the movements are a bit more defined. His hand is still unable to help him, but there is considerably less tension in his fingers, which is great progress. His left leg is getting stronger, too! He is able to use it a bit to help him move around a little and with the help of his friend, Nick, he can walk around the pool table. Thanks Nick! This takes every ounce of energy Tim can muster! Over the last few days, as he's been weening off the steroids, he has been too dizzy and fatigued to try it, but this kind of determination is what will help him walk again. To walk again is Tim's greatest hope! We (his family) are confident this will happen in time and have even greater hopes for him- like being able to drive again.

I imagine that over next month, Tim will need all of the prayer and encouragement that he can get. If he does not progress as quickly as he wants, he may get discouraged and worried. We want to guard against him loosing hope and so we ask for your continued prayer.

Tim regrets that he is not able to read well enough to keep up on Facebook or e-mail and I know that he wishes he had more energy to talk on the phone, but this will come in time. I will be sitting down with him this week to read through his Facebook and e-mail with him, so your words of encouragement will be passed on.

As a family, our greatest concern in that a CT Scan will reveal another tumor and he will have to undergo another surgery. We continue to trust in God's sovereign will for Tim's life. He continues to be a blessing and a witness to us all.

Thank you to those of you who have encouraged Tim, whether it be through the continuation of friendship and prayer, a word of encouragement, a drive over the hill for a visit, a snicker-doodle, or a walk around the pool table.

Love,
Christy and family

Monday, January 5, 2009

To your health!

No doubt Tim is wishing everyone a healthy new year 2009!

Christy had a great visit with our sister, Stephanie at her home in Naches, Washington. It's been difficult for Steph and Einar to be so out of touch with Tim. So, they took a trip to California and brought the baby, of course. It has been nice for everyone to visit and for Tim to see his niece, Liv for a second time. He is a proud uncle and thinks she is so cute.

We all wish that Tim could spend more time at home (folk's house) with us, but we are grateful for the excellent care he is receiving at Dominican. It certainly seems that the nurses like him and await his return when he gets a pass to go home. As far as patients go, Tim is a good one. I continue to be encouraged and amazed by his optimism and truly sweet disposition, despite his incredible adversity. I know I speak for the entire family when I say that occasionally I have to catch my breath when I realize Tim's reality. He makes this whole thing seem like a mild inconvenience. Believe me, it is not!

Tim still cannot read because of dizziness and blurred vision. Don't let that stop you from writing to him on Facebook and through cards. We read everything to Tim and these notes, along with food are his only pleasures in life...seriously. He reads text messages as often as he can and really appreciates scripture blessings. Even if you just send the reference, we can look it up and read it to him. I believe that praying scripture over him is the best healing balm we can give him, so please keep them coming.

Tim has an insatiable appetite, which is due to the steroids that he is taking. We really love to watch him eat because it's one of the few things he can enjoy right now. He's certainly had his fill of sugar over the holiday season!

Tim has made so much progress in the last few weeks! His left leg, which was mostly paralyzed after surgery is now moving quite well. He is able to move his arm at the shoulder and with a lot of concentration and hard work, he can grip a hand. He is able to move his hand at the wrist, which is excellent. He can hold himself up on his hands and knees and is getting better at being able to stand with assistance. He is working very hard at his physical therapy every day. We are certain that with his persistent spirit and self discipline he will make a remarkable recovery. Our goal for Tim is the coming weeks is that he will progress to a point where he is able to take care of his needs in the bathroom and be able to move himself from bed to wheelchair and back.

Tim is so anxious to come home and is pretty unhappy in the hospital. He wants to be able to shower every day and enjoy the outdoors more. These little things we all take for granted are the very things he longs for!

He still gets tired out pretty quickly, but loves the company, so please continue visiting him!

Thank you for all of the prayer and well-wishes!

Christy and family

Thursday, December 25, 2008

Merry Christmas from Tim!

Hello and Merry Christmas to everyone!

It was certainly an unusual Christmas this year! We weren't able to have Tim stay overnight at home this year, so Tim's Uncle David, who happened to be in the area, brought him home to us on Christmas eve for a few hours. It was nice to have him with us- even if for just a short period. 

We brought a little bit of Christmas to Tim today when we visited him for a few  hours in Santa Cruz. I think he gets a little better every day. He had a big appetite today and ate a huge plate of left-overs from last night. He was eager to spend some time outside today in spite of the rain. He can't wheel himself in and out of the facility, so he spends nearly all of his time indoors. 

As for his  progress, we were happy to see a few important developments this evening. His left hand is involuntarily laying in a much more relaxed state. His fingers are naturally  laying flat and he is able to lift his arm above his head! Praise God! It seems that the left side of his mouth moved better today and his speech was improved. It is very  labor-intensive for him to try to speak clearly, so it's easy to tell when he is getting tired 'cause he gets difficult to understand. The steroids that he is taking make him feel  pretty emotional, so he is usually  tearful when he sees a familiar face and then again when we leave. He is feeling pretty discouraged right now and some company would do him good. He has a free day tomorrow, Friday, after 3:PM, so please drop in to see him if you are in the a area. I think he would really enjoy going for a walk. Of course, this would mean you wheeling him around.

It was difficult to leave him tonight, especially because I am going out of town for a few days. There's no  need to call before visiting Tim if it is after 3:PM. He's enjoying salty and sweet foods lately, so bringing him a treat would be much appreciated, I'm sure. You know how he loves coffee, too!

Well, I've got a very early flight out to Washington state to see our sister, so I'll close by wishing you all a healthy and happy  new year! Thank you for the steady  prayer for Tim and our family!

-Christy and family