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Susie's musings

There’s no place like home!

Knock the heals of your ruby slippers together to change them into sneakers and come to our "home." Cousin Carol arrived from Ohio as the snows started in the north. She took Chuck to PT at 8:30 am on Friday (Dec 3). Between Carol and TWO PT guys, Chuck worked very hard, and then we whisked him off to the Keys where he absolutely wore himself out playing with buddies Steve and Perry. Perry was wonderful working on the boat, mowing the lawn, weed eating, and other clean up items while Chuck either tried to help or sank into a chair very tired… Moose burgers and socializing at the Moose lodge did him in. I think Chuck learned a lesson (I hope so…). When you are only a month out of surgery, with a traumatic head wound, you just can’t do every single thing you want to in the high gear that Chuck is accustomed to. You need to nap, and rest, and … well just let the healing take place. On Sunday morning, Chuck said, "I can’t rest here." Interesting … is it because you don’t have ogre Dave taking you for long walks and not doing what you want to do??? So we packed up and came on home. All rested up, Chuck is back at PT today with nurse Carol. His blood pressure and pulse are "those of an athlete," says Carol. No sick man here… unless you count the stunned brain.

I appreciate if you would recommend books or web sites for me to read so I become knowledgeable on head injuries. I bought a book Tammy recommended called My Stroke of Insight by Jill B. Taylor, PhD. She is "a brain scientist" who had a massive stroke in the left hemisphere at age 37. The book records her journey through the stroke and back. I’ve read for example the last pages "forty things I needed most" like "I’m not stupid. I’m wounded. Please respect me." I like that term "wounded." I’ve also read something interesting that I need to turn to when I ask "how long?": "I thought I had lost forever the ability to understand anything mathematical. To my amazement, however, by the fourth post-stroke year, my brain was ready to takle addition again. Subtraction and multiplication came online around post stroke year four and a half, but division eluded me until well into year five!" She offers all kinds of ways she "got things back" like using flash cards. Isn’t that interesting! Chuck did not have a stroke and his injury is "bi lateral". Carol says it is mostly surface which is why he seems to be recovering so quickly. We still have to understand the effect of the bilateral thalamic infarcts. What we are dealing with is the coming back online of the brain… some cognitive deficits that most doctors said he would probably recover. We meet with neuro surgeon and neurologist tomorrow. I will pepper them with questions while I am understanding this is "wait and see; go slowly; no one knows." Today is a beautiful day and we look forward to so many more beautiful days. May God bless you on this "Saint Nicolas Day"… Do you remember when we were little and we put shoes out at night on the feast of Saint Nicolas and we got presents! Love and God bless you. Susie

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When you come to visit, bring your sneakers

Hi dear friends. The recovery from a brain injury is all "up in the air" and scary. Have I used this word "scary" before? It ranks right up there with uncommon and unique which describe Chuck’s injury. Every day, with friend Dave, Chuck walks a vigorous 1 1/2 mile swinging his cane "for exercise" (and me tagging along behind saying "OK boys, wiggle your fingers, stand up straight, long strides!"). Today they went off alone while I wait for a call on the neuro surgeon appointment and a neurology doctor’s appointment. We had visitors last night after rehab (we celebrated the sunset inside as it is a little chilly). "Winter is acomin’ in" at about 60 degrees and windy. I know this is a balmy summer’s day for some of you! But we are bundled in sweatshirts and socks! During the visit Chuck talked about things and I kept thinking, his memory is not impaired at all. Usually Debby and I look at each other and nod as if to say, "See he remembered that or that…" last night Debby was somewhat behind me, but I knew what she was thinking. His memory is good, just need to clear up the fog in his brain which might take a while. Slowly, with baby steps. OK my dears. Feel free to visit our balmy winter sunshine! Even with Susie not outside pulling weeds our back yard and lake is gorgeous in this pre-winter splendor. God bless you and keep you safe. Love Sue

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April 2006

Good morning dear readers. I am looking out at sunrise and thanking God for yet another beautiful day, and for some reason I clicked on April 2006 (over on the right is a list of months. See April 2006? click on it – just for fun…) I saw first, a photo of the house next door (Mike’s house) and the first "mural" I ever painted. Mike is the posting expert, so Mike when you come at Christmas, please help me to attach photos of my "latest" murals. Then I saw what looks like a Good Friday meditation (come back to this in Lent – or now is OK too), but scroll on down and find "The Battle of the Nightgowns." My sister Sarah and Mom witnessed this "event." Some times I can’t believe the gifts God has given to me, like writing. I hope you will read the battle of the nightgowns (now that many of you are engaged in winter) ("what’s that?" my "little Susie side" asks, "don’t know kiddo," I answer, "I’ve been bare foot in Miami all my life…") Anyhow. Enjoy my little battle story and try today to "use your God-given talents" to brighten up someone’s day! For that is our role as talented children of God. Enough for today. I have piles of papers to clean up. God bless you! Love Susie

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Traipsing through the Unknown

I know there are many books and papers on the brain, and lots of doctors who have "neuro" as a specialty, but many parts are uncharted and unknown territory. I did some reading on "bilateral thalamic infarctions" and I ran into the words "uncommon and unique" words which Chuck’s neuro surgeon used in the hospital. … Just what we needed to hear. And now I’m reading it. We will work our way through this by reading and asking questions. As if he knew I have 50 questions, Chuck’s neurosurgeon cancelled our first appointment today to do an emergency surgery (Do they "plan" emergency surgeries?) Shame on him; avoiding me like that… We had the CT scan on Monday and the doctor will have it when we visit him… I pray for the words, "back to normal, now work hard!"
Chuck worked on the computer for the first time this morning. I’m the one who woke up at 4am, not Chuck… But he started moving and then I felt like I could get up. Yikes it is dark out at 4:30am…. He logged his FHP time for November, sent it off via email, responded to emails, and read a lot of emails. After about an hour, he was flagging, and I moved him away from the computer. He is taking a little nap before Dave comes to walk at 9 (we are up to walking about 1 1/4 mile and doing it vigorously.) PT guy said that was OK. We have PT this afternoon. Therapists said he has to work to relearn cognitive skills, and not to push (use baby steps, go slowly – words Chuck never understood; me either…) … Chuck and I both have to be confident and willing to work hard to relearn skills that his "stunned brain" has temporarily forgotten, like touch typing: I needed to say, "use both hands" and he picked it right up. Reminders of how to do things is the way the therapists do it. Knowledge is not gone… the brain just has to find it. Healing is an awesome thing and we continue to pray for total healing. We look forward to a visit from Chuck’s cousin Carol tomorrow until the 10th. Carol, I, and any other beautiful women of the neighborhood will engage Chuck in lively conversations as he’s supposed to be working on ability to listen to three or more women talk at once and figure it all out. Remind you of a little joke? "Doctor will I be able to play the piano?"… "yes" … "oh good because I couldn’t before!" Imagine if Chuck learns to listen to three women talking at once and figure it out… that will be fun! God be with you this December as we prepare to celebrate God coming to earth, and as we remember "God is with us" Emanuel. Love Susie

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An open letter to Mom

Dear Mom. Everyone says to me, "don’t wear yourself out; take care of yourself," and I think of you, making your way through 2 1/2 years taking care of Jack after his stroke and hospitalization, after your own breast cancer surgery, on the awful Tamoxifin drug, tired, and sad. And I can only answer, "Thank you Mom for teaching me Love." I did not understand when you were buying pre-mashed potatoes, and now I often eat "only cereal." I didn’t understand how Jack just sat and waited for you to come, not interested in television and books as he used to be, only waiting for you, until I saw Chuck waiting for me. I’m blessed to be out of the hospital, and I am blessed that he waits for me to come. God bless you Mom; you are one of God’s angels, and you have taught me to Love.

Our leisurely day began today with 8AM Mass where I read as a lector from the book of Isaiah, a mile walk with Chuck, a shower and shave given to Chuck by his geisha Susie, a visit from Mike and Lois as Chuck ate steak, potatoes, and eggs. A nap for Chuck to get him well rested up for a 4:30 PT session. Then the phone rang. Chuck is scheduled for a CT scan that the neuro surgeon needs for Chuck’s 11:30 Wednesday appointment. "OK", I said, "where?" When I mapquested the directions I knew we were in a ballgame. Travel north on the Palmetto Expressway about a million miles into Hialeah where all the street numbers mean nothing (like Coral Gables). The Palmetto has been under construction by a drunken rabble of men who didn’t pass 2nd grade. Many people fall into the Palmetto and are never seen again. With mapquest directions clutched in hand, I woke the sleeping Chuck, and we hurtled North into hell. Actually found the place and didn’t get killed doing it. After the CT scan, fortified with a chocolate shake, we headed south to Kendall drive for PT. Sat in a freezing waiting room (note to self, bring coats next time) counting my blessings that the PT location, 107 Ave and Kendall, is a straight shot home. Chuck went off into the bowells of the place with Edgar who came out all proud of where Chuck is and fired up about getting Chuck better, "walking a mile! keep it up!" This is going to be good for both of us. I haven’t walked a mile in years. If you come to visit bring sneakers. God bless us, everyone. Love Susie

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My midnight walker

My dears… Have you ever wakened "in the middle of the night", cracked one eye open towards the clock, "2 AM," and heard water running? My next glance is toward’s Chuck’s side which is empty. Find my glasses and go into the bathroom on a stealth mission… He’s there in the shower. Now what do you do to a man who loves his own way, his privacy, is stubborn as a big oak tree, and who does things when HE wants. Well you gently advise him, "It’s the MIDDLE OF THE NIGHT!!!! Finish the shower and come back to bed! No coffee, no movies, BED, SLEEP!" Indeed, he reluctantly, with grumbling, climbed back into bed, and I lay there thanking God for those gentle breathing snores! This morning we watched a John Wayne movie called "On the Wings of Eagles" that had John Wayne overcoming a broken back and paralysis to walk again. He played a Navy guy who helped develop air craft carrier planes. Oh I love the patriotic movies. I went out to the grocery store in the middle of the movie and came back to find Chuck eating a bowl of cereal he made for himself. He’s OK! We then started an On Demand movie with Paul Newman, and friend Rob came over. The boys are sitting down by the lake now… All is well. Tomorrow we begin out patient rehab and Chuck will obediently do what rehab people say. He’s actually using the walker as rehab people taught him to, getting up slowly and carefully, etc. Chuck will be triple teamed next week with rehab, me, and cousin Carol cracking the whip. Have a wonderful sunny Sunday. God bless you. Love Sue

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Troopers in the house!!!

Chuck is presently sitting and talking with 3 troopers (Dave and Al are retired) and Andy, Chuck’s "new partner", plus our beloved neighbor Mike. WOW! I sneak off when people visit to pay bills, to write about drugs, and to negotiate getting drugs and rehab. I am so blessed to have help! Chuck took a nap yesterday and it was too long. He went to bed at 6pm and slept until midnight when he got up to make coffee. Made the coffee fine, but when I found him… I said "It’s midnight!!!!" He wasn’t allowed to get up in the hospital so here he says, "there’s no hospital rules here." So after a mile walk this morning I let him sleep one hour and got him up when Andy came with burger and shake. I warned him he had to get up to see Andy with burger, also he will sleep at night. If I don’t kill him with wakefulness, walks and messing up his drugs, he will survive and come out stronger. Cousin Carol is coming to crack the rehab whip, and friend Karen cracks the whip too. I actually made it out to shop some sales while Dave was here this morning. One more ride out to pick up drugs and then we’ll watch an Audie Murphy movie… and of course…. John Wayne. Happy Thanksgiving weekend!!! Thank you thank you for prayers! Love Sue

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Home Sweet Home!!!

Chuck was released today from rehab (will return on an out patient basis). He just finished a burger and beans and is sleepy. We are home at the lake house all weekend and next week. He should take an afternoon nap, but we would love to see visitors in the afternoon and definitely for sunset. Please come and "do" sunsets ! I understand many of you are visiting relatives for Thanksgiving – Have a wonderful Thanksgiving! Next week is a good time to visit too. Love and thanks so much for prayers. Now, we’ve got him back and we start work on the cognitive "deficits…" (planning, problem solving, dee stuff). He already did a suduku… Thank God for many blessings. Love Sue

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Anticipation! How sweet the anticipation of freedom!

Today at the 3:00 meeting actually held at 3:45, the rehab team said Chuck has got a few deficits…. but there’s no reason for him to sleep at the rehab hospital any more, he can walk and talk, eat and eliminate, shower and live at home!!!! he can come to outpatient rehab to continue to tweak the recovery. I had my hand on the suitcase, but believe it or not… there’s paperwork to be done. Of the most importance is the doctor’s orders and other "sign offs." Chuck himself is excited to go home and I am very excited. I have to move slow and be quiet because he is still recovering! He said, "good thing we built that bathroom with a walk in shower and a bench." He showered himself tonight "in anticipation." This Thanksgiving we can say "thanks be to God for blessings" and we know a true miracle. I will keep you posted and I thank so many of our friends who were with us through this and have pledged to be with us until "the man is back" grumbling because he has lists of things to do, grumbling because he has to jog, etc… what else? Love to you this time of Thanksgiving. I’ll continue to blog especially tomorrow. God’s Angels have cleared many boulders out of the way, and I am sure tomorrow will go smoothly. Until tomorrow evening…. say a little prayer for Karen Skipp’s Mom who went into the hospital with pneumonia in Orlando. Karen is worried. God bless Karen, her Mom, and her family. Love to you all my readers, Sue

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The good, the bad, and the wonderful

Chuck loves an early Clint Eastwood movie "The good, the bad, and the ugly"… well with all the blessings poured out on us, I can’t think of anything ugly. Today was, like Chuck’s injury, interesting. I made a special carry-in meal for Chuck today and as he ate, I asked about rehab. He answered: "The rehab girl walked me all over the place and she doesn’t make me use a wheelchair. We walked out side all around the gazebo." He went on and on about this walk outside, and I thought "He’s hallucinating. About what he wants, or what I do with him. He wants to go out, but they won’t let him." (The nurses on his ward make him stay in a wheelchair "for his own protection.") A few minutes after lunch, Chuck was wheeled away by rehab; I called Karen, and out of the corner of my eye, there goes Chuck with a PT girl, strolling all around the gazebo, walking a maze, waving to say "Hi" to people, doing leg stretches and all kinds of upper body coordination tricks the PT people do. "Oh I feel so guilty for doubting him!!!" He’s all up in arms because the nurses make him stay in a wheelchair and call when he needs to toilet. Protect him like wrapping him in cotton, and even gave him a full time assistant to protect him. I swear! Her name is Veronica; she’s at his beck and call. He will be so spoiled. We meet with the staff tomorrow and with the managing doctor who is making him stay in a wheelchair (anyone here heard of liability?) to protect him…. Chuck will say, "Let me have a walker! PT lets me walk!!!" My dog is in a fight. My first instinct is to fight for him, to say, "stop waking him up 4 times a night, let him sleep…. let him walk!" But my first reality is "rehab him." Friend Karen will try to come to the meeting and I’ll bow to hers and the doctor’s wills.

My own adventure for the morning was cooking a chicken dish for Chuck, packing 3 bags (Chuck’s clean laundry, my big bag, 2 sweaters, and the food) into the car and getting to the corner and having the tire light flash and ding. "Oh you sissy," I said to car, "it’s not winter yet." Car hates cold weather. But I’m not foolish either so I turned around to head back home and give the problem to Chuck. Realized he isn’t home, and turned around into Dick’s driveway…. Some of you have already heard my plaintive, "I need your help" and responded with much love. Dick walked around the car and we spotted a screw stuck in the tire. I then handed Dick my car key and asked to borrow their car and had all my stuff moved to their car when I said, "Wait! I have the van!" My brain only works on one thing at a time lately as you can probably tell from this rambling narrative. What used to be my competent brain is reduced to one cylinder and that one works slowly. Diane and I drove her car to my house and unloaded all the stuff into the van and off I went to give Chuck the special lunch. He then also ate from the tray they give him at the hospital. If Chuck lost any weight being on IVs and a stomach tube… he’s eating like a truck driver now.

So what’s the good, the bad, and the wonderful?
The good? Chuck’s progress; he’s alive… I thought he would die in post op, my prayer as I walked the surgery halls was his name. "Chuck… fight… Chuck fight." Today he took a 10 minute cat nap after lunch and then PT came – like clockwork. He woke up and moved off the bed, albeit grudgingly… and went off to rehab.
The bad? The screws that get into our tires (and our life?) when we least expect or need them. Not being able to sleep at night… I am finally sleeping well at night. Chuck has to deal with nurses taking his blood pressure at 2am and then getting back to sleep…
The wonderful? Friends that I can wake up at 5am and who will drive me to the hospital and stay with me there bringing me milk to drink, friends I can hand my keys to, friends who are praying for Chuck and me. Chuck is lookin’ good! Our God is an awesome God. Love Susie