Tuesday, October 16, 2012

Explanation

Lest you think that I have suddenly become a prolific post-er, I will explain why I have a dozen new posts from the last few hours.  I have been migrating my posts about Al's stroke from my original blog, Jenny Sue Got Married, to this blog.  Al's stroke happened on January 5, 2011, and I created "Postcards from Therapy" in November 2011.  In order to contain all of my stroke-related posts in one place, I have moved those posts over here, and I have included the original date that they were written and posted.  They probably give a little better history than my first posts on this blog did anyway.  I just hope it's not confusing to anyone.  All of the posts from that blog have the "posts in retrospect" label.

Thanks!  from Jen

The Bionic Man

From Jenny Sue Got Married, originally posted on December 11, 2011.

"We can rebuild him. We have the technology. We have the capability to build the world's first bionic man. Al Yarrington will be that man. Better than he was before. Better, stronger, faster."

OK, so maybe that's a bit exaggerated, but I am excited that the technology is available to Al - the technology to re-animate dead tissue mobilize paralyzed muscles. Friday night, Phil Muccio, founder of AxioBionics, visited our home and demonstrated that Al can regain some use of his arm with the help of electrostimulation. (On a side note, AxioBionics actually worked with Christopher Reeve "to restore strength and prevent the all-too-familiar muscle atrophy that accompanies spinal cord injury as well as help maintain his health". Cool, huh?) So, this man came to our house - all the way from Ann Arbor on a Friday evening - to show us products that can potentially help Al.

AxioBionics is going to build Al a wearable sleeve that will have 3 sets of electrodes to stimulate different muscle groups in his arm. He will be able to lift his arm, move his forearm, use his fingers. He will not have extensive small motor skills, but he will also have a switch that will allow him to choose to grasp or release with his hand. During occupational therapy, Al had electrostim on his arm, and he had a great response to it. I had often wished that he could get an electrostim unit to use at home, for further therapy, and now that is becoming a reality.

They are also going to work on a leg sleeve that will counteract his "foot drop", which inhibits his ability to take a step without his foot dragging on the ground. He also has to have a new AFO (ankle-foot-orthosis) built, which will fit his leg better, since the last one was built in January, shortly after his stroke, and his leg muscles have atrophied quite a bit.

Exciting things coming around the bend. In the meantime, Al is practicing his Bionic sound effects.

Expect the Unexpected

From Jenny Sue Got Married, originally posted on October 9, 2011.

Life is full of "unexpecteds". I'm sure I've just stated the obvious for anyone out there who is a living, breathing human being.

My husband's stroke 9 months ago was definitely unexpected. There have been many unexpected situations since then; none quite as devastating as the stroke, and many have been pleasant and helpful unexpecteds.

Last Friday at about 7 AM, my neighbor knocked on the door and walked in with a rather large box full of goodies from Panera. She went out and returned with 2 garbage bags full of breads and bagels. Two other neighbors had gone to Panera the night before and asked for leftovers. Now, Panera leftovers have come to our neighborhood before, but they've all been split up between several families. This was the first time I was the sole recipient of the Panera loot. My freezer is stocked with bread and goodies for months to come.

That was a nice unexpected.

Today I went to the hospital to visit a friend who is on bed rest until her baby is born. She is 27 weeks and 5 days pregnant, and her water broke last week. Upon determining there was no infection, the doctors decided she should not have the baby yet, but stay in the hospital on complete bed rest until the little guy or girl makes his or her appearance. Kind of a scary situation, so if you could pray for my friend, I'm sure she would be ever so grateful. But she's in the best place possible for a complicated pregnancy, so I'm sure she's in great hands.

Here's the unexpected part. I've sort of been dragging my feet about getting over to see her. As soon as I stepped into the hospital and was greeted by the all-too-familiar smells and sounds, I started to feel sick, kind of sad. I went to the reception desk, where I had to check in every. single. time. that I went to visit my husband. There was no frequent visitor pass. The same ladies were working at the reception desk. I was almost surprised that they didn't say, "HI! How ARE you? Haven't seen you in a while!" I stepped on the elevator and was joined by a woman in a wheelchair pushed by her young daughter, or niece, maybe. They were heading to 6th floor. I told her my husband lived on 6th floor for 6 weeks, and I was his wheelchair driver. Small talk, I guess. She probably didn't care. I got off at 3rd floor. That's the Labor and Delivery and Mother-Baby Center floor - the "fun" floor. It's always fun to go and visit someone on 3rd floor because it means they've welcomed a precious new baby into the world. And even though my friend hasn't delivered her baby yet, my mood was lightened by the thought of tiny newborns, swaddled in pink and blue hospital-issue blankets, with pacifiers stuffed in their mouths.

When I got to her room, we talked for a few minutes. Then I started crying and told her I had been hesitant to visit her because of the memories of Al being in the hospital.

The unexpected here was the fact that I was so emotional about being in the hospital again. I kept telling myself, "Al is OK. Al is home. Al is getting better every day. Al is alive." But I guess the severity of his situation is still emphasized by hospital memories. I managed to wipe the tears away pretty quickly and move on, but I'm still surprised by my reaction.

A final unexpected: I was behind my husband in line to receive Communion at Mass today. As I watched him make his way with his limp and his cane, I succumbed to a brief wave of anger. That happens once in a while. I just get so damn angry at the stroke for doing what it did to Al, and in turn what it has done to our family. It has stretched us all beyond what we thought we were capable of, and it has taxed us in many ways. But I hope and pray that in the end, it will bring us closer and make us stronger.

Even with the unexpected, God knows our needs and knows how to meet them. The one thing I can always expect is that He is faithful.

One Step Forward, Two Steps Back

From Jenny Sue Got Married, originally posted on October 5, 2011.

Before Al was released from inpatient therapy, I asked his physical therapist to cover a very important practical matter: how would I help Al get up if he fell down? So we practiced the scenario a few times, until we were comfortable with the process. The PT also made sure to teach me how to assess whether anything was broken or dislocated, other than the obvious bone poking through the skin. I felt confident that I was ready for the potential situation.

Strangely enough, Al has not had any major falls. He has stumbled and lost his balance a number of times. Early on, he rolled over in bed and fell halfway out. But he has never fallen. Until today.

Evan was having a technology crisis in the basement that only his father could solve. I've learned to do a lot of things since Al's stroke, and I've taken over a lot of his former responsibilities. But when it comes to computer networking, I'm still pretty much an ignoramus. So, I'm very blessed that Al still has his computer networking abilities.

Al was summoned to the basement by our son, who was having trouble getting his computer page to load. Al made his way down the stairs, an exercise for which he no longer needs help. He made it to the bottom of the stairs, only to get his cane caught up in the ladder that was lying by the basement wall. I heard a *clang* and then shouts from the kids, "Daddy, are you OK???"
I went down to find Al lying, face-down, on the basement floor.

The kids were more alarmed than I was. I just had to figure out how to help him get up. After maneuvering him into a sitting position, he was able to get up by himself with little effort. I didn't think about it until after he was standing, but I finally asked, "Does anything hurt?" He said nothing hurt except that he hit the floor with the left side of his face. I guess it's somewhat of a blessing that the left side of his face is still numb.

Al has been getting more adventurous since his brace was minimized. He has been doing stairs more confidently and more regularly. He has been driving (shhh, don't tell the Secretary of State). I'm glad to see him becoming more mobile, but I was also reminded today that he still needs to be cautious and careful. Most movement still isn't as easy for him as it is for you and I. It's not second nature yet.

Sometimes my heart cries out to God for Al, as the psalmists did:

1 How long, LORD? Will you forget me forever?
How long will you hide your face from me?
2 How long must I wrestle with my thoughts
and day after day have sorrow in my heart?
How long will my enemy triumph over me?
3 Look on me and answer, LORD my God.
Give light to my eyes, or I will sleep in death,
4 and my enemy will say, “I have overcome him,”
and my foes will rejoice when I fall.
5 But I trust in your unfailing love;
my heart rejoices in your salvation.
6 I will sing the LORD’s praise,
for he has been good to me. (Psalm 13)

Strength

From Jenny Sue Got Married, originally posted on September 15, 2011.

Ever since Al's stroke in January, I've had people occasionally say to me, "You are so strong, Jen".

Weird, because I feel so weak. Perhaps the thread I'm hanging by is exceptionally strong, but I myself do not feel particularly strong. Tenacious, maybe. I'm not giving up on my husband. I'm not giving up on my family. I might give up on the dream of sanity on occasion. . . .

The first thing that comes to mind is "The joy of the Lord is my strength." Strange, but true: I have experienced an incredible increase in joy since this all began. For the first several weeks, I was sustained by grace - completely and utterly lifted up by God's grace and the prayers and service of people who love us. I experienced the presence of God with me in such a profound way that I couldn't help but be joyful.

Once I was able to stand on my own two feet again, it's not as if I launched into a wonderful prayer life. I had many weeks off from work and I *could* have spent a lot of time in prayer: time interceding for Al, time praying for wisdom and insight into why God was allowing us to go through this and what He wanted us to learn during this time, time doing Scripture study about the purpose of suffering. Instead, I slept a lot. When Al first got home from the hospital, I put a portable intercom in our bedroom, another in the living room, and a third upstairs so that he could buzz me if he needed something while he was lying in bed. It turned out to be more often the case that I would be sleeping and he would buzz me from the living room, saying, "I'm getting hungry." (this would be at 10:30, and he hadn't had breakfast yet.)

However, God didn't give up on me. He knew my family needed me. And He knew I needed Him. So He answered my prayers and gave me a growing desire to worship Him. So, I've spent a lot of time in worship, saying to the Lord, "This is Your life. This is Your plan. This is Your will. I will cooperate with You and trust in You no matter what." This is essentially what worship is: professing who God is and what a mighty God He is. He is God, and I am not. There is something about worship that gives me far more peace than does begging and pleading for my prayers to be answered, for my own will to be done.

I am also reminded of Paul's thorn in his flesh: "Three times I pleaded with the Lord to take it away from me. But he said to me, 'My grace is sufficient for you, for my power is made perfect in weakness.' Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me." (2 Cor. 12:8-9) I know just how weak I am. I don't like having to work hard. I just want things to be easy. Well, life certainly hasn't been easy since Al became disabled, but again, there is an almost tangible grace that has lifted me up time and time again. I've had the strength to run one more errand, to help Al with one more exercise, to go to work one more day, to have hope for one more moment. . . .all because of God's grace.

So, friends, while I'm flattered that you think I am so strong, I really am not. It's all the Lord. The Lord is my strength and my song.

The Best Medicine

From Jenny Sue Got Married, originally posted on August 10, 2011. 

The Bible and Reader's Digest agree: Laughter is the best medicine.

Blue Cross Blue Shield? Not so much.

My husband was on the phone with our insurance company, trying to figure out what has been paid to the hospital, what was covered, if our deductible has been met, etc. In the course of the conversation, it came to his attention that "recreation therapy" is not one of the services they cover.

Al had been in the hospital 13 days. He had been moved from the main hospital to the outpatient rehabilitation wing. When I had moved him in there, I had a sick, sad feeling because my husband had to share a ward with 3 other men, separated only by a curtain for privacy. It reminded me of a prison cell more than a hospital room. He had a tiny little closet that was about a foot wide, and a TV that was mounted on a swinging arm so he could pull it right over his bed. And he got full cable - the only perk to being in that otherwise god-forsaken place.

So when I went to visit Al on January 18, I went into his room. He was not there. Very strange, since he didn't have the capability to go anywhere on his own yet. His therapy sessions were over for the day, and I saw that he had eaten dinner, but his tray had not yet been removed. I grew a little anxious: "Had something happened and they had to rush him back in for another CT scan?" I walked around the unit until I came to the "day room" - a nice, large room with a gigantic conference table, sofas, TV, kitchenette, a piano, and a computer. Basically, it was a rec room. That's where I found my husband doing what he was supposed to be doing in a rec room - recreating. He was playing euchre with 3 other inmates patients, assisted by a "recreational therapist." It was the first glimpse in almost 2 weeks that I had of my "normal" husband. He's pretty good at cards, and he really enjoys playing. So, he was sitting there joking around, engaging in table talk, as if he were at a buddy's house instead of in a cold, sanitized hospital.

Little did we know that he would be charged for his recreational time. Because the insurance company apparently thinks that the only services that are worthwhile are those which cause pain, discomfort, or embarrassment, which is what Al endured all day, every day for 5 weeks with physical, occupational and speech therapy, daily needle pokes in his abdomen to prevent blood clotting, and having someone assist him in the most basic needs, such as getting dressed and going to the bathroom.

Also, the therapy scheduling people must have assumed that my husband, 13 days post-stroke, would know the infinite details of his inpatient rehabilitation coverage, and would definitely know whether or not recreational therapy would be covered, and would have the presence of mind to tell the rec. therapist that her services weren't covered, and therefore he couldn't participate. I guess I can't argue with that - we are all supposed to know what's covered and what's not, so it's our fault for not perusing the inpatient rehab service coverage before Al had his stroke.

How foolish of us.

The Encouragement I Need

From Jenny Sue Got Married, originally posted on August 1, 2011.

I often refer to this Scripture when faced with challenges: "Endure hardship as discipline; God is treating you as sons. For what son is not disciplined by his father? If you are not disciplined (and everyone undergoes discipline), then you are illegitimate children and not true sons. Moreover, we have all had human fathers who disciplined us and we respected them for it. How much more should we submit to the Father of our spirits and live! Our fathers disciplined us for a while as they thought best; but God disciplines us for our good, that we may share in his holiness. No discipline seems pleasant at the time, but painful. Later on, however, it produces a harvest of righteousness and peace for those who have been trained by it." Hebrews 12:7-11.

Believe it or not, people have disagreed with me about the application of this Scripture. (How can you argue with Scripture?) But I don't believe that the word discipline here means "punishment". Because then it would seem as if God were punishing us for our mistakes, but God is not in the business of punishment since he sent Jesus to take our punishment for us on the Cross. Obviously, there are still natural consequences for our sins, but I do not believe that God inflicts suffering upon us in order to punish. I DO believe, however, that He allows difficulty, hardship, challenges - even a stroke - to happen so that we will be disciplined, i.e. formed and trained, in holiness & trust in God.

During difficult times, we often run to the Lord and cry and beg and plead to be removed from our situation. But God wants to get us to the place where we are ready to let Him do His work in us. He wants us to cling to Him like never before and to accept the "discipline" He has for us; in other words, the training of our hearts. He wants to train our hearts to have greater trust, greater faith, greater love, and a deeper relationship with Him. He's not all about giving in to our whining and pleading just to get us to stop. He has a deeper purpose in letting us go through hardship. If we never had to cling to Him for dear life, we wouldn't develop the kind of relationship that He wants us to have with Him.

As I mentioned, I've read this particular passage many times before, but just recently as I shared the passage with my husband, for his encouragement, I read just a little bit further: "Therefore, strengthen your feeble arms and weak knees. Make level paths for your feet, so that the lame may not be disabled, but rather healed." (vs. 12-13)

Whoa. How well does that apply to my disabled husband? To strengthen his feeble arms and weak knees? So that he may NOT be disabled, but rather healed???

As a friend of mine once said, "Lean into death" (She was talking about dying to ourselves and our own will, and surrendering to God's will.) It is much easier to cooperate with God during hard times than to fight Him to try to get your own way. He will have His way anyway, and if we cooperate, we will be strengthened and healed.

Post-Traumatic Stress Disorder

From Jenny Sue Got Married, originally posted on July 30, 2011.

So I've been battling a bit of PTSD and depression this summer. I somehow had the stamina to survive from January to May, drifting through a sea of confoundedness and sublime grace.

Once I had the opportunity to relax a little, I noticed that I was becoming foggy and irritable, tired and anxious, and I started flashing back to all the moments of fear and anxiety that had come in the preceding months.

Every day, as I would I drive past Sparrow Hospital on the way to and from work, I would start dreading the memories it would stir up. I would get a sick feeling in my stomach, remembering the 6 weeks, day in and day out, that I practically lived in that hospital near my husband. I would look at notes in my log book at work, notice the date, and think, "that was when Al was in the hospital". I started waking up in the night and I'd be gripped with fear that Al was going to die. This was 5-6 months after his stroke, but the fear would return as if it was that first night he spent in the hospital.

I asked my doctor if he thought I had PTSD after describing my symptoms, and he said, "Uh... YEAH!" And he upped my dose of antidepressant.

According to Wikipedia, Post-traumatic stress disorder is a severe anxiety disorder that can develop after exposure to an event that results in psychological trauma, overwhelming the individual's ability to cope.

Yup, that's me. I would say my ability to cope is gone. Or maybe I'm just tired. I'm tired of worrying about my husband's health. I'm tired of the painstaking work that my husband has to do just to get his life back. I'm tired of having to run every little errand that my husband used to run. I'm tired of filling out paper work. I'm tired of having to be a single parent. I'm tired of worrying about money.

I could go on and on, but it's not really helpful or healthy to dwell on the negatives. I am bound and determined to overcome my overwhelmed-ness. I know the Lord is with me, and He has given me enough grace to handle whatever comes my way.

As you can probably tell by this blog post, my mind is less than sharp these days. I hope to recover some of my mental acuity by exercise and eating healthier, but that doesn't sound much different than Al's pre-stroke days!

As always, gotta pray a little more, worry a little less, and survive on grace.

Botox

From Jenny Sue Got Married, originally posted on July 27, 2011.

Al continues to have increased tone and spasticity in his muscles, specifically in his left arm. The correct term would be "hypertonia": the increased stiffness of muscles, and the resulting inability to stretch. Spasticity is related to tone, and what it means is that trying to stretch muscles in a state of hypertonia often results in the muscles rebelling and contracting excessively. Sometimes, if a muscle is stretched too fast, it can lead to clonus, which is when the arm or leg shakes uncontrollably.

Here is the frustrating part: we usually loosen up stiff muscles by stretching them. For a stroke survivor, though, the stiffness is not only dependent on the muscle itself. It is actually compounded by the damage to the brain. So the brain is not communicating with the muscles so that they behave correctly. I can bend and flex Al's arm repeatedly, and instead of loosening up, it tightens more and more as I go on. It's very frustrating because I want his muscles to behave like muscles should.

Botox would be a remedy for the stiffness in his muscles, but it would also likely weaken his muscles. It seems that every medication available for stroke damage offers the same 2-edged sword - yes, it will help control the tone and spasticity, but it will most likely cause muscle weakness at the same time. SO frustrating, since we obviously want Al's strength to increase, without having to overcome the muscle stiffness.

We're not at the point that he will be taking botox injections, but herein lies the difficulty of stroke rehabilitation. Not only do we have to hope and pray that Al's brain can reconnect with the left side of his body, but he has to work extra hard against the rebellion of his muscles.
From Jenny Sue Got Married, originally posted on July 25, 2011. 

"For better or for worse, for richer or for poorer, in sickness and in health, 'til death do us part."

I went to a wedding this weekend, and this particular part of the ceremony always cements my commitment to my husband just a little bit more. I know I will love him 'til death do us part. And I always get a little choked up at weddings: the beauty of the bride appearing at the end of the aisle, the look on the groom's face as he beholds his bride, the solemnity of the vows.

At this wedding in particular, though, I actually almost started sobbing and had to leave for a few moments to collect myself. Not because there was anything wrong with the marriage - it is a truly blessed union between two people that I greatly respect. But I lost it because, right now, I'm really living the "for worse", "for poorer", and "in sickness" part with the aftermath of my husband's stroke.

There's something about having gone through the past 7 months that makes me all the more fiercely committed to Al. But it's also getting pretty tiring, for both of us, and I imagine especially for Al, who has to face the daily struggle of living thus far without the aid of his left side. I can't imagine what it must be like for him to stare at that hand and to try with all his might to move it, but it just won't budge.

But I get into self-pity quite often since I'm the one carrying the weight of the family, working full-time and practically being a single parent. I forget to encourage the one who really needs encouragement!

It is my deepest desire to blog about my daily events and struggles, but I don't even know where to start. I want to spare my husband's feelings - not cause him to feel as if he's a burden on me. And I want to spare him his modesty. So, that leaves little to blog about.

I haven't lost my sense of humor, but I'm trying to get it back into my (almost) daily writing habit. I don't want to poke fun at my gimp of husband (self-labeled, FYI - he wants to market himself as "Guy In Management Profession"), so it makes it a bit more complicated to shed humor on our life at his/our expense.

Just checking in. I keep promising that I will be more faithful at blogging, but I truly don't know if I can keep that promise right now. But if I can ask for a few prayers to be able to balance my life enough to not be completely overwhelmed, I might have just a little bit to give back to the blogging community!

Take care, peeps!

Chronicle of a Stroke, Month 3 and Beyond

From Jenny Sue Got Married, originally posted April 5, 2011. 

 I've been working on and off since Al's stroke. Thank God for FMLA - even though I only qualified for 6 weeks instead of 12 because I hadn't worked there a full year yet, I am thankful that I got to spend a lot of time at home with Al. As you might expect, it was much more difficult to be at work after Al came home from the hospital. I spent 3 weeks at home with him full time, and then I went back to work, part-time on most days, so that I could stretch out my leave time and be available to him as much as possible. Last week, I used up the last of my leave, and this week is spring break. Being the school secretary, it's my break, too.

I'm very grateful for the quietness and slowness of this week -we've had a lot of time to relax, although the kids do the occasional begging for something fun to do. We've had some good times, though, and it's been very enjoyable spending time with my family. One night, I made a camp-out in our living room -we lit candles and ate hot dogs and s'mores. Another rainy day (of which there have been many), we spent the afternoon playing Life. Yesterday, we went to the movies and saw "Diary of a Wimpy Kid: Rodrick Rules" - we parked in a handicapped spot, both in the parking lot, and in the theater with Al's wheelchair, we got giant sodas and mammoth buckets of popcorn and watched a funny movie. One day, the kids helped me paint doors and baseboards, which they enjoyed quite a bit.

 I realize now that I'm starting to ramble in this post. It's hard to encapsulate our life. I just figured I had better at least write an update. Not only to keep you all posted, but to keep myself reminded of the goodness of life.

Chronicle of a Stroke, Month 2

From Jenny Sue Got Married, originally posted on March 5, 2011. 

My hubby is home!!! He came home on February 17, a full 6 weeks and 1 day after his stroke. Yep, 6 whole weeks in the hospital - 5 of them in inpatient rehab. It's been fabulous to have him home, but a challenge as well. This is some of the equipment that came home with him: a wheelchair (obviously), KAFO: Knee-ankle-foot orthosis,  small-base quad cane, a gait belt, a night splint. 

As you can see, we have a lot of equipment to work with. Al worked hard for the 5 weeks in inpatient rehab, but he still needs some help with the basics. The wheelchair has an obvious purpose, but Al doesn't really use it unless we go any place where he has to take more than about 20 steps. Although his left leg is getting stronger and he is gaining more movement all the time, he requires the KAFO to stand and walk so that his knee doesn't buckle. It's a pretty high-tech device, though, since it has a lock to click it into place as he straightens his leg, but it also has enough "give" to let his knee bend enough to take a step as he learns to walk better. When he stands up, there is a click-click-click, kind of like a Barbie doll leg (or maybe Ken is a better comparison). Along with the KAFO, he is using the quad cane to balance and walk. During inpatient therapy, he was re-taught the painstaking stages of walking, except with 3 steps instead of the original 2. Move the cane forward, take a step with the left leg, and then a step with his right foot, making sure the right leg lands ahead of the left leg, otherwise the process results in the "wedding walk". Oh yeah, and the gait belt. I have to fasten it around his waist so that I have something to hold on to in order to help him keep his balance. So, being an overly-cautious wife, I'm sure that I drove my husband a little bit crazy during the first week, reminding him with every step to be careful and to keep his balance and to remember to try to bend his left knee, and to try to be sure to stand up straight, etc., etc., etc. Now I'm starting to relax a little bit and let him walk alone more often, although the physical therapists haven't officially given us the go-ahead to do that. I try to make sure his path is clear with every step, and I often keep at a close distance so that I can grab his belt if he starts to sway.

At night, he wears the night splint, which keeps his foot from "dropping" - in other words, his foot and ankle have to kept at a 90-degree angle or else it will be extremely difficult for him to stretch back into that position in the morning, which can cause obvious problems with standing and walking. So every night, I have to squeeze his foot and ankle into that uncomfortable thing, and it is fastened VERY tightly so that his foot doesn't move during the night. In the morning, we doff the night splint and don the KAFO, which requires some degree of coordination on both our parts.

This, in addition to the help he still needs with everyday self-care tasks, makes our morning and evening routine longer than it ever was before. But we're getting the hang of it. And this is only what we use for the bottom half! Al will still go to regular physical therapy, as well as speech therapy and occupational therapy, which will focus more on his upper body and hand/arm usage.

As of right now, Al still has very little use of his left arm, with no small motor control at all. He can shrug his shoulders a bit, but the OT's continue to encourage us that the use of his arm will gradually return, and it usually does return with large motor movements first, and then the fine motor skills follow. Speech therapy will have him focus on speaking more clearly as well as using more intonation, which he seems to have lost during the stroke. ST also regularly assesses his cognitive skills, which are still very much intact.

I cannot tell you how grateful I am that my husband is still mentally present, even though he is working hard at getting the rest of his body restored. He does have some trouble with short-term memory loss, but again, that should be recovered with time and practice. I've done a pretty poor job of blogging during this time, although I've stored away many, many details to write about at some later date.

So, this is a very brief update for all that we've been through for the past 2 months. So glad you're still reading!

Chronicle of a Stroke, One Month and Beyond

From Jenny Sue Got Married, originally posted February 5, 2011.

 Yesterday was a full month since Al's stroke. All the intricate details that I thought I would remember are now fading into a blur. Al ended up spending 2 more days in ICU, and then was finally transferred to a regular unit on Sunday, January 9. Even though it was only 4 days, it felt like I had moved to the hospital. I had left my slippers, a stash of healthy snacks, and even a toothbrush in Al's room. It was a bit of a rude awakening to be transferred to a shared room, where we didn't have the entire run of the place. I took home my slippers and toothbrush. Once Al was settled into his new digs, it was time to bring the kiddos in to see him. I picked them up from school and we headed straight to the hospital. But first, we had to stop in the gift shop, of course. After loading up with a travel-sized Battleship game; an MSU Spartan key ring, a container of candy with a miniature "Get Well" balloon, and a big-eyed stuffed Panda bear that Faith chose so Al wouldn't be lonely. The kids were definitely thrilled to see him, but Faith had the hardest time seeing her big, strong Daddy so tired and weak in a hospital bed. She stayed by his side during the entire visit, and her eyes teared up many times. When it was time to leave, she didn't want to let go of his hand. Later that night, as we we snuggled together in my bed, Faith asked me, "Mommy, why did God let this happen to Daddy?" "Well, honey," I began, "Sometimes God lets things happen so we can learn to trust Him more." She responded, "How can I trust God if He let this happen?" All I could do was hug her, reassure her that Daddy would be OK, and pray that God would give her an answer to that difficult question. On January 11, Al moved into the rehab center at the hospital, and since then he has undertaken the grueling work of re-learning to walk, talk and move his entire left side. While still in the ICU, an Occupational Therapist - a slight woman - came in to get Al out of bed and into a chair. She had him sit up in bed, and then helped him swing his legs over the side of the bed. She then strapped a gait belt around his waist and had him scoot his hips as close to the edge of the bed as possible. When she helped him to stand, I was stunned to see the complete lack of ability demonstrated by his left side. He looked like a palsied child instead of my strong, able-bodied spouse. I swallowed hard and tried not to cry. They had originally thought he would spend 2-3 weeks in rehab, but his release date was soon pushed back to February 17 and it has been stuck there ever since. The consolation is now that we're into the month of February and only about 10 days remain until we receive him back home - 10 days that will now be packed full of painting, moving furniture and minor renovations. We will be moving our bedroom to the first floor and doing some minor tweaks to the bathrooms to make them more "user-friendly" for Al.

Happy Birthday to Me?

This post is from Jenny Sue Got Married, originally posted on January 14, 2011.

Today is my 41st birthday.

And my husband is in the hospital. He had a stroke on Wednesday, January 5. I've been meaning to blog about our experience, but it's been a little bit crazy around here, as you might expect.

Suffice it to say for now that my husband's stroke affected minor blood vessels in his brain, it was a "dry" stroke (a blockage, not a bleed), and it has caused lack of mobility on his left side. He still has some sensation, but as he describes, it feels like his arm and leg are always asleep. Once the stroke was complete (the first thing I learned about stroke was that a stroke isn't necessarily an instantaneous event, but it can progress over 3-5 days - in Al's case, it progressed over 1-2 days), he began the long, grueling work of rehab. The prognosis now is that he should regain enough of his normal functioning to return home in about 4 weeks. As of today, he still cannot stand or walk unassisted, so he has his work cut out for him.

Last night, after visiting my husband in the hospital and learning that he still had 4 weeks to go before coming home (as opposed to the originally projected 2-3 weeks), I couldn't hold back the tears. I went home and cried to my mom (who is here to help me and offer moral support), "Tomorrow is going to be my worst birthday ever!"

However, I believe that God was determined to prove me wrong. Today was a day filled with much grace and joy, despite the less-than-favorable circumstances. I chose to let the kids - and myself - sleep in and get up to enjoy a leisurely breakfast before rushing off to school. My mom made waffles. And I took a very nice bubble bath. I went in to work at around 10:30, and was treated to many birthday greetings throughout the day, including a table of kindergarteners, and 2 classes who sang "Happy Birthday" to me. My co-worker gave me a nice gift complete with dark chocolate and a Coke Zero, my perfect little pick-me-ups. My mom made pizza and birthday cake for me. We took some pizza and ice cream and went to visit my tired hubby in the hospital - the hours of physical therapy, occupational therapy, and speech therapy take a lot out of him.

I can't explain it, but it wasn't just the niceties of the day that made me happy - I had a true sense of peace and joy that I'm fairly convinced was God's birthday gift to me.

(PS: I will write in more detail about Al's stroke and all that God is doing in our life. . . .hopefully very soon!)

Sunday, September 2, 2012

Falling Down

Most kids probably don't see their parents fall down. Maybe slip on some ice or trip awkwardly over toys in the kitchen. But not fall flat on their faces like they're just learning to walk.

My kids have seen Al do it twice. Both times they have witnessed it first-hand while I was in a different part of the house. I heard yelling. “Daddy fell!” and then, “Daddy, are you all right?” My heart quickened as I ran to the scene, wondering if I'd find blood or broken bones. He was all right both times, but for certain, he was at least a little embarrassed. I wonder what the kids think. Does it seem odd or scary to them? Or is it just another part of this weird stroke that has robbed Dad of something ambiguous, some part of what he once was?

Before Al even came home from the hospital, a friend who has MS told me something. She began with, “When Al falls. . . .” I don't remember what she said after that, just that she emphasized the “when” rather than saying “if”. Before he was released from the hospital, I made certain to ask his physical therapist how to help him if he fell. I'm so glad that I did. I've helped him numerous times after doing floor exercises, after a stumble here or there, etc. But the 2 times that he actually fell flat on his face, he managed to get up with the least amount of help from me. Maybe after falling like that, he felt he had to regain some dignity by getting himself upright again.

It's OK for our kids to see us fall. In fact, I think it's important for our kids to see us fall. Not physically, but spiritually. It's important for them to know that we sin, and that we make mistakes. Now I'm not saying we should all run out and pull a “grand theft auto” just to make sure our kids get the point. I'm pretty sure that would be counter-productive. And it's not that we should confess every sin to them – that would be a bit overwhelming for them, wouldn't you say? It's just that we want them to know that sin is inevitable in this “body of death,” and that Jesus is the one who rescues us from it. (Romans 7:21-25)

I happen to have kids who are quite perfectionistic, and it's hard on them when they make mistakes, especially when they're called on it. It's difficult, humbling, even embarrassing to have to admit you did something wrong. It's hard to say, “I'm sorry.” But the sooner they learn it, the better.

And in our house, we make the offender say, “I'm sorry”, and the offendee has to say, “I forgive you.” They can't say, “It's OK”. Because it's not OK that your brother whacked you with his plastic lightsaber. It's not OK that your sister stabbed you with her earring. That's why we apologize – what we did was WRONG. So it's always, “I forgive you.” In our understanding, in our family, that means, the slate is wiped clean. I'm choosing to forget that you hurt me. Our relationship is restored.

I think it's most difficult for the kids to say to us as parents, “I forgive you” because saying those words would mean they're admitting that we did something wrong and need forgiveness. It might be scary or unsettling for any kid to admit that their parents did something wrong, and saying it to their parents' faces. But again, it restores the relationship. It tells our children, “I'm learning as I grow. I will make mistakes as a parent. But I will try again, by the grace of God, to be the kind of parent God intended me to be.”

The only perfect parent they have is Our Father in Heaven. And He, in His wisdom, gave us to our kids as their earthly parents, even when He knew we would fall sometimes.

Wednesday, August 29, 2012

Blank Slate


It's been 19 months, 3 weeks and 3 days since my husband had a stroke. 

You would think that we would have some things figured out, like maybe he would be returning to work. Or that I would be handling things better. Or that life would be returning to “normal”, or at the very least we would be creating a new normal.

Instead, what is facing us is pretty much a blank slate. At this point our future seems the most undefined it's ever been. Last year at this time, I was working full-time. Al was still going to therapy. He was getting the help he needed and I was making the money, doing the chores, paying the bills, getting the kids to and from school, ordering pizza for dinner so often that the pizza place just answered by saying, “the usual?” At least I felt like we were making progress. I assumed things would be “better” in a year.

One year later. It feels like nothing has changed. But it certainly has. I am only working part-time now, which is a great help to my sanity. I honestly don't know how other moms work 40 hours a week manage to survive.  I was a wreck after one year of it. Of course, I did have the added fact that my husband was rendered disabled by a stupid CVA. I guess that might have added some stress. (ya think???) But I've never been very good at handling a lot at one time. I feel as if my brain came with limited juggling ability from the get-go. Maybe it's because I have serious ADD (self-diagnosed, but I KNOW I have it) and refuse to be medicated for it because I'm already a walking drug factory. The pharmacy people know me by name, too.

I can't complain too much, though: we had a great summer. It just went too fast. We had a 2-week vacation to Mackinaw City and Mackinac Island, and the Upper Peninsula of Michigan where my parents live. As soon as we returned, my in-laws flew my husband to their home in Venice, Florida. It was a nice break for my husband to get out of his dull routine, and a nice break for us (shhh, don't tell him I said that.) The purpose for his visit was that his parents had contacted a variety of people to give a “second opinion” of sorts on his progress. They had Al visit with a physical therapist, an orthotist from Hanger, a podiatrist (to help him with some recurring foot issues that have resulted from his AFO), and even an acupuncturist to try to re-awaken his face. In addition to seeking outside input, they also did some intensive home therapy with him on a daily basis, helping him into their pool and making him ride a stationary bike.

During that time, his therapy group met, via phone call, with his company to determine whether he would be truly able to return to his previous position as IT Administrator at Lear. They emailed him in Florida stating that their final recommendation would be that he not return to his position at Lear, since Lear cannot accommodate him on a part-time schedule, and since his position required a lot of physical activity: going up and down several steps, several times aday, walking over moving lines, carrying computer equipment, working in a fast paced environment rushing to the floor when emergencies are at stake.

OK. Fine. I completely understand, and I know there are agencies out there that can help a disabled man find a decent job, since he still has quite a sharp mind, and he has a lot of experience, both in networking, as well as with his MSW. What I don't understand is the snail's pace at which all people involved seemed to move. We had met with his PM&R doctor several times in early spring and made it abundantly clear that our goal was to get him back to work, even though her very first words to him were “Well, you don't have to go back to work.” What a very bizarre thing for a doctor to say to a man in his 30's with a family to provide for. She might just as well have said, “Just accept your fate, stay at home and collect disability.” The last time we met with her, which was in May, she agreed to contact our therapy group to get the ball rolling on Al's return to work. She said, “Maybe you can go back as soon as next week.” In retrospect, this convinces me that she has no clue what it takes to get a disabled person back into his job. A few weeks later, we met with Al's OT, who said she would hand our case over to yet another OT who specialized in back-to-work transitions. Granted, we had a 2-week vacation in there, and then my husband left for Florida for 6 weeks. Not much time for them to meet with him, but then to have an email finally saying it's a no-go seemed just a little too curt for my tastes. I guess I just wonder why no one came to this conclusion months ago, since we had actually had meetings with HR at Al's company and made it clear to them that he wouldn't be able to return full-time, at least not for the first several months. It seems they could have simply closed the door then.

All of this to say, here we are, staring at sort of a blank slate. It's clear that Al should continue some sort of therapy, as he has not had any voluntary movement return to his lower left arm, but he is able to move some muscles in his upper arm. With the electro-stim sleeve and continued therapy, we are still holding out for the best possible scenario, which is for him to completely regain the use of his hand.  As for his leg, the PT in Florida, as well as the PT's here, have agreed that all of the muscles in his left leg actually work; it's just a matter of training them and strengthening them in the right way. This is obviously very encouraging, but therapy is very helpful for him to learn exercises that will continue to target the muscles that need training.

But we have already been through 2 therapy groups and 2 physiatrist / PM&R docs, and we are ready to move on to #3 in both. Before I go on further, is it just me, or should a physiatrist be active in helping to orchestrate therapy, treatment, and even back-to-work goals? Because my experience so far is that we've met with the docs we've had, maybe once every month to six weeks, and they haven't necessarily helped us draft a plan, something we can see and actively follow.  I wonder if I'm just living in a fantasy world.  Please share your thoughts / experiences if you have any with PM&R docs.

So, we feel like we're starting from scratch, although my dear hubby is definitely further along than he was a year ago – more movement, better balance, more independence, etc. But it's a tough spot for a young father of 4 to be in – wondering if, when, and how he will return to work. And a mother of 4, and caregiver to her dear hubby, not able to work full-time, given my other responsibilities.  And I hardly feel like I can come to grips with what all of this means for our family, even though I've 19 months to digest it all.

I feel a bit sheepish to add this as an afterthought, but I am full of faith. I DO believe that God has a plan for us, and that He will be faithful to lay it out before us, and continue to provide for us as He has done for the 15 years of our marriage, and throughout this whole stroke ordeal, and for all of our lives. It's just that I'm kind of a perfectionistic control-freak, and I don't like not knowing what's going on. My husband on the other hand, is a bit more challenged, I think, to believe that any good will come of all this. It's hard for him to see how he will ever provide for his family again, and it's hard for me to convince him that “In all things God works for the good of those who love him, who have been called according to his purpose.” (Rom. 8:28)

However, our kids are sweet and loving, and they pray over Daddy faithfully, and they love his kooky sense of humor. He already has a lot going for him – a good relationship with his kids, great Christian friends who help in every way they can, a fabulously capable wife (ha ha, that's a bit of a joke, since some days I can barely remember who I am and what I'm doing), and above all a God who has never abandoned nor forsaken him.

In writing this, I am renewed in my belief in that last statement – that God will never forsake us.

Romans 8:31-39: “What, then, shall we say in response to these things? If God is for us, who can be against us? He who did not spare his own Son, but gave him up for us all—how will he not also, along with him, graciously give us all things? Who will bring any charge against those whom God has chosen? It is God who justifies. Who then is the one who condemns? No one. Christ Jesus who died —more than that, who was raised to life —is at the right hand of God and is also interceding for us. Who shall separate us from the love of Christ? Shall trouble or hardship or persecution or famine or nakedness or danger or sword? As it is written:
“For your sake we face death all day long;
we are considered as sheep to be slaughtered.”
No, in all these things we are more than conquerors through him who loved us. For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.”


Sorry it's been a long post, but I'm trying to catch up on all that I've missed writing about!

Saturday, August 11, 2012

Things are Looking Up

So, after my Debbie Downer post from a few days ago, I should really share about some of the exciting changes that are happening.

Some time in the spring, Al started to go to therapy less frequently because our insurance only covers 60 units of therapy per year.  His therapy group (he goes to Origami in Mason, MI) wanted him to save some of that therapy for when he returned to work so that an occupational therapist specializing in return to work could accompany him.  So, we spoke with our PM&R doctor, and she said she would get the ball rolling.   That was at the end of April, maybe beginning of May.  We heard NOTHING from her or from Origami until almost the end of June.  The OT specialist at Origami finally emailed Al and said she had spoken with Lear, Al's employer, and they were all to sit down together on July 13 for a meeting.

We went on vacation on June 24, and we were gone for 2 week, with the plan that Al would attend this meeting when we returned.  During our vacation, we got a message from Al's parents, who live in Florida, saying they had consulted some different therapists and doctors, and they wanted to fly him down to have a different set of eyes look at him to see how they could better tweak his rehabilitation.  We were planning to return home on July 8; they were poised to reserve a flight for him on July 9!  Talk about sudden!

After a short discussion, it really seemed like a good idea to me.  I haven't been the best at chronicling Al's day to day recovery, mostly because there hasn't been much, but also because I work during the school year and it's hard to get to blogging!  Suffice it to say that, since Al wasn't going to therapy regularly and had not yet returned to work.  He was stagnating in a major way, and he was becoming very depressed.  I figured that a new environment, new opinions about his health, and basically some time away would do him good.

When he first arrived in Florida, he was complaining about the heat.  It made me laugh because his parents have a gorgeous new house with a/c of course and a walk-out lanai that leads right to their pool.  What was even funnier is that it was hotter here in Michigan than it was in Florida.  His parents live on the gulf, so I'm sure they have their share of humidity, but what I think most people don't realize is that Michigan is extremely humid, too.  Lansing is in a basin that used to be primarily swamp land.  When you get some heavy humidity, you simply step outside and get drenched.

Anyway, Al has been through many appointments and day-in, day-out home therapy at the hands of his parents.   They get him into the pool every day so that he can do some weightless exercises.  They put the electrostim sleeve on him every day (which we had taken a break from because it was so tedious and didn't seem to be doing anything), and they are trying different techniques to conquer the tone and spasticity that works so darn hard against his best efforts to move his arm.

He has also been to a podiatrist to fix some problems with his toes that have arisen from wearing a brace all day, every day.  He has had his AFO re-built a number of times since the material they usually use isn't strong enough to keep his foot from rolling.  He's popped the bolts out several times just by walking.  His parents have sought the aid of a therapist who has come to the house to work with him one-on-one.  And he has even received acupuncture in his face to help it to re-awaken.  

All in all, my hubs has been gone almost 5 weeks, and it will be 6 total when he returns on August 21. 

The next step for us once he returns is to find yet another PM&R doctor, since the 2 we've seen haven't been on top of the case as much as we'd like them to be.  We will also have to decide about where to continue rehab since he has 30 units left for the year.

It's so hard when you are thrown into something like this, and you don't really know who is going to offer you the best help.  And once you find out that a provider isn't pulling his/her weight, you've lost several months of potential treatment or advice.  

But I'm grateful for this 6 weeks of intense therapy in Florida.  Hopefully it will be a jumpstart to a great new wave of progress!

Tuesday, August 7, 2012

The Pain of a Stroke

I can't say that I know what it feels like to have a stroke. Except that it must just feel like everything on the affected side is asleep and it frustrates the heck out of him after a year and a half that he still can't move his body the way he wants to.

What I can say is that I feel like my heart is being broken over and over again.

Because I am selfish.

I want my needs met by my husband.

And there is no way he can meet my needs the way he used to. I feel like the Lord has given me a breakthrough this summer; that He helped me to realize that I was relying too much on my husband to meet all of my emotional needs. And when he had the stroke, he couldn't do that any more. I think God led me to finally let go this summer. And now I'm grieving a unique kind of loss – the loss of my husband. He isn't dead. He is still mentally aware and intelligent. But something emotional is gone, and I don't think we will get it back. Now it's the “acceptance” time for grief.

So I guess I'm the one on the road to recovery now. It has really been a freeing time. A time for me to realize how much more I need to rely on the Lord than on anyone else in this world. A time for me to recognize that I can get through this with His help. A time to understand that I am much more capable than I used to think I was.

The tears are fewer and farther between now. I love my husband and I'm committed to him forever. But losing an emotional component of our relationship has been more challenging than losing anything physical.

Wednesday, May 9, 2012

Grief rears its ugly head again

Life "should" be back to normal by now.

My husband "should" be recovered.  He's young, the doctors say.  He's resilient.  But recovery is taking forever.  And may never be complete.  Sometimes when he's sleeping, I look at him and imagine that his body is whole again.  But when I climb in bed next to him, his left hand (his "affected" hand) often migrates over to me and clunks me with the brace that keeps his hand from curling into a tight ball.  His arm still moves on its own, and I try to push it away, but if it's being particularly stubborn, it will snap right back over to my side of the bed again.  If I stretch my legs out a little too far, I stub my toe on his night splint, that keeps his foot flexed in the night.  It doesn't take much to destroy my little fantasy of my husband being back to normal.

He struggles to sit upright to get out of bed.  He awkwardly dresses himself, a task that takes at least 5 times as long as it should.  But it's slow going, putting everything on with one hand.  Especially socks.  I hated helping him with his socks, and I'm glad he can do it by himself now, but it's not easy for him with one hand.  I hate watching him go through the grueling process of doing everything in slow motion.  To his credit, he's more patient than I am!

I hate not knowing what the future holds.  How much healing and recovery will there be?  Will he ever start to have more hope that God has a good plan for his life?

Grief sucks.  I just wish we could "get over it" and "move past it."  But how do you move past something that has done so much damage?  And how do we know how much to grieve when we aren't even sure what has been lost or what will be restored?

I think I've used the word hate a lot in this post.  There are a lot of things I'm grateful for, too.  And I will remember them.  And I will encourage you, hopefully, when I recount them.  But for today, I'm just letting myself grieve.

Monday, April 30, 2012

Crossroads

I think we've reached a crossroads in Al's recovery.  This has been on my mind for several weeks now, and I have shared the concept with him.  It seems we've spent so much time focusing primarily on rehab that we've put our life on hold.  And Al seems to be waiting until he is fully recovered before he moves on with his life.

But according to every doctor we know, there probably is not going to be a full recovery.  He will regain much of his former ability, but probably not all.  It is a discouraging fact to grasp.

It's been 16 months since his stroke.  He has made a lot of progress.  But the progress comes very slowly.  The downside to all the physical progress is what I perceive to be some mental loss.  I don't think it's permanent, but Al has been home alone for a long time, without much to stimulate him.  I began to worry when he would forget very simple things and he couldn't recall the substance of a conversation with a doctor or therapist.  I wondered if his brain was somehow suffering further damage.  But I have come to the conclusion that it's most likely a lack of use.  There's only so much Al can do to stimulate his brain at home.

I started to realize that we need to shift our focus away from full-time rehabilitation to having Al re-enter his life, while still working recovery.

I think it's time for him to go back to work.

Al is a Network Administrator for Lear Corporation in Mason.  Lear is a worldwide company, and the Mason plant supplies one of the General Motors plants here in Lansing with seats for their Cadillacs.  Even a few days after his stroke, he was talking shop with his boss, who was impressed with Al's sharp recollection of everything that had to be done in his absence.  Now, a year and a half later, I think his brain has "atrophied" in a sense, and it will be very good for him to put it to use again.

There is the natural apprehension about stepping back into his career.  Thank God for his company, who still has him on their employee roster.  Their long-term disability package is great.  But he will definitely need some physical accommodations since he still has no use of his left arm.  It is a sprawling plant, so he will probably need some mobility assistance as well.  And of course, he won't jump right back into a 45-hour work week.  He simply won't be able to handle that sharp of a transition yet.

But the wheels are in motion.  His doctor is in contact with his company so that she can formulate a plan for him to return to work.  We will meet with her on Friday.

Stroke rehab is ridiculously complicated.  There is no real point at which the doctors can say, "You're recovered."  From what I understand, the process can take years, or even the rest of his life.  And even then, some abilities may be never return.  It makes the concept of "moving on with your life" so much more ambiguous.

But I think it's time.

Friday, April 13, 2012

Bioness L300

This video was taken at physical therapy back in December 2011.  It shows Al walking with his AFO and his cane.  Al still uses an AFO to walk because his foot continues to drop, and his ankle rolls severely.




This video was taken on the same day as my husband was practicing walking with the Bioness L300.



The Bioness L300 theoretically corrects his need for the AFO.  However, if you watch all 2 minutes of the Bioness trial, you will see that his foot starts rolling on its own because his muscles get so fatigued within that small amount of time.

Al already has an Axiobionics arm sleeve, as well as a leg sleeve (also from Axiobionics) that does essentially the same thing as the Bioness L300.  What I can't understand is that the Axiobionics sleeve isn't quite as powerful, for some reason, as the Bioness L300.  And it is a bit more cumbersome since the Axio sleeve is connected to the control unit (which Al wears on a belt around his waist) by cords, whereas the Bioness is wireless.

Not sure what's going to happen next - will we keep trying to strengthen Al's leg with the Axiobionics sleeve, or will we pursue the Bioness?  As you can imagine, electrostim equipment is not cheap, and it isn't covered by our insurance.  Al's parents have been generous in covering all of his electrostim, but we don't want them to spend more than necessary. 

Now that I have moved to a part-time position at school, I have more time to investigate these questions and to help come up with an answer to how we want therapy to continue.

Saturday, April 7, 2012

Ephesians 3:14-21

"Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be the glory in the church and in Christ Jesus throughout all generations for ever and ever.  Amen."  (Ephesians 3:20-21)

I went to a women's conference in the Fall of 2010 and was very moved by this passage.  I had the sense that God was about to show me how much more He could do than I could possibly ask or imagine.

In January of 2011, my husband suffered a stroke.  I lost all of my bearings.  I knew - at times I even had the tangible sensation - that God was carrying me, sustaining me, even giving me joy in the midst of watching my husband be rendered disabled.  Within a matter of hours, he became like a palsied little child right in front of my eyes.  And somehow, I had this inexplicable joy.  And so did Al.  He really didn't fear what was happening to him.

That is what happens when you are faced with a life-threatening or life-altering situation.  We all wonder how we could make it through when faced with death or serious illness.  You don't prepare for it:  God meets you with incredible grace in the moment that you need it.

However, somehow my faith slowly eroded.  I would have moments of absolute faith and courage, but then they would slip away and leave a sickening fear.  I watched Al improve greatly during the first weeks of inpatient therapy.  This was encouraging.  But his progress slowed as he moved home and had only 2-3 sessions of therapy per week, and otherwise he was left home alone all day, every day while I resumed my full-time job.

As his recovery slowed, so did my faith.  I let fear take over.  Like Peter who was called to walk to Jesus on the water, he started out with enough faith to do the impossible.  But when he looked at the wind and the waves around him, he started to sink.  When I looked around and saw that Al's recovery had essentially stopped and we had no idea what our future was going to look like, I started to sink, too.  I sank lower than I had ever before, culminating in my infamous  nervous breakdown.  Instead of keeping my eyes fixed on Jesus, I let myself be drowned in the waves of anxiety and fear.

Now, I know that losing faith isn't all my fault.  Giving in to depression isn't all my fault.  Getting Post-Traumatic Stress Disorder wasn't my fault.  Having to work a full-time job that was mentally and emotionally draining wasn't my fault.  (I do assume some fault because I know I'm imperfect and that life doesn't just happen to me.  That is definitely another whole topic in and of itself.)

But it's still hard not to blame myself for falling apart.

Happily however, God always has enough grace to take me back.  Although this particular kind of sin isn't my issue at this point, I was touched by this video - that Jesus wants me, even though I'm beaten, run down and have let my faith falter. 

Matt Chandler: "Jesus Wants the Rose"



Now we're on the precipice of Easter.  When Jesus shows His absolute love for us.  And we remember the power of God that is present in our everyday life, not just on Easter.  Power to resurrect, power to give us victory amidst what seems like everyday tragedy.  Power to bring good out of something bad.  Power to do immeasurably more than all we ask or imagine.

14 For this reason I kneel before the Father, 15 from whom every family in heaven and on earth derives its name. 16 I pray that out of his glorious riches he may strengthen you with power through his Spirit in your inner being, 17 so that Christ may dwell in your hearts through faith. And I pray that you, being rooted and established in love, 18 may have power, together with all the Lord’s holy people, to grasp how wide and long and high and deep is the love of Christ, 19 and to know this love that surpasses knowledge—that you may be filled to the measure of all the fullness of God.
 20 Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, 21 to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.

Friday, April 6, 2012

Good Friday Therapy

I have a hard time making Lent "worthwhile", in general, because I feel like I'm always dealing with major issues in my life anyway.  This year, in particular, if you've been reading my blog, you know I've been barely surviving, emotionally, mentally and physically.  Dealing with the aftermath of my husband's stroke has worn on me in such a way that I have felt like I was barely alive.  I had difficulty making the simple drive to work.  I would have to remind myself every moment where I was going and why I was going there.  And I would often cry my eyes out during the drive, feeling like I couldn't handle another day.  And I would forget what I was doing, midstream, in the middle of my work day.  I would get home and have absolutely no ambition to get dinner on or do housework, and I couldn't even face what needed to be done.  I can easily say that the last 6 months has been the worst 6 months of my life.

Now, there is finally some light and some hope in terms of the load I'm carrying, specifically due to my schedule.  And it's spring, which makes everything in my mental health and outlook improve due to the sunshine!!!

It's Good Friday.  In my Church Tradition, we observe "Lent" for 40 days, a time of fasting, prayer, and repentance.  It's not a time meant for self-deprecation.  It's a time for us to remember what Jesus did for us, and to remember how much more we need of His help and grace.  Today is the day we observe Jesus' death on the Cross. 

It's not too late to make something of my Lent.  To prepare myself for the celebration of Easter.  To ask God for renewed grace and help to carry my burden with new strength.

Thursday, April 5, 2012

The Electro-Stim Sleeve


This electrostim sleeve was made by Phil Muccio at Axiobionics.  (Side note:  Phil created electrostim equipment for Christopher Reeve after his paralysis.)  At first, we were interested in the Bioness H200, but the Axiobionics sleeve is much more comprehensive, targeting several muscle groups in Al's arm.  We are still interested in the Bioness L300 for Al's leg, but that is fodder for another post.

So, Al has been wearing this sleeve since around Christmas time.  He built up from 1 hour a day to all day, so now he wears it most days.  It exercises his "affected" arm for him, stimulating different muscle groups to keep them from atrophying and to hopefully help the return of voluntary movement.

One of the problems that Al has with his left arm is not only that it is still mostly paralyzed, but that it gets extremely spastic, especially when trying to exercise it and loosen it up.  Unlike stretching your muscles under normal circumstances, where the muscle would warm up and become more supple, stretching a spastic muscle sometimes results in increased tightness.  So, the electrostim sleeve forces his muscles to bend and work, basically by firing them and overcoming the spasticity with force.  There are 3 sets of electrodes:  one that flexes his hand, one that straightens his arm, and one that stimulates his shoulder muscles to strengthen them and prevent subluxation, the partial dislocation of the shoulder joint.  Subluxation is very common after a stroke because the affected arm just "hangs" loose instead of moving like it is supposed to, and it can be pulled out of its location.

The problem with the electrostim sleeve alone is that it is merely forcing the muscles to fire and overcome the spasticity.  For Al, it is his flexor muscles that tend to be spastic (I don't know if this is true with all strokes), so his tendency is to curl his arm up and in.  The sleeve forces the extensor muscles to work, but it doesn't address the spasticity of the flexors.

The remedy for that is Botox, which Al's physiatrist has been harping on for a long time, and his physical therapist finally convinced him to do as well.  The doctor who performed the Botox injection was extremely optimistic about using these two therapies together and was certain that Al would feel a world of difference in 2-3 weeks.

The Botox injections were done on February 16.  The difference is not noticeable.  It's very disappointing.

One theory is that they didn't use enough of the Botox.  They typically start with very small amounts of Botox because they don't know how someone will respond.  And since Botox blocks the message for the muscle to tighten up, they don't want to use too much so that the muscle will be completely useless.

So, we wait.  Again.  They can't do another round of Botox injections for 3-6 months after the initial ones.

We are both incredibly grateful for technology and the opportunities to try new therapies for Al's recovery.  However, it is quite disheartening to find them not working as we had hoped.

I am hoping that, since I will be working part-time from now on (and I will have the summer off!), I will have more time to work with Al at home, more time to research what to do next without having to wait several weeks between appointments.  That seems to be the other part of therapy that goes so slowly - working with health professionals who seem to have too much on their plates to meet with us much more than once a month.  I want someone to connect with Al weekly, if not more, to suggest more and more therapy ideas.  I am not satisfied with "let's try this, and get back to me in 6 weeks."

That's where we are physically, with Al's rehab.  Slow but sure.  Maybe not even sure, but slow nonetheless.

Tuesday, April 3, 2012

Fighting with Anger

I haven't written in a long time because I've been tired.

Exhausted.

I was angry for a long time.  I was angry that I was carrying all the weight in my family.  I was angry at God for not giving me the grace to keep doing it (or that I was just too stupid to find His grace.)  I was angry that I was so tired and that I had to keep running all the time, from one appointment to another, to work and then back, etc.

I went to see my therapist at the beginning of February.  I went a few times and then stopped because I just didn't have the time or energy to keep going.  I had just started back to therapy after taking over a year off due to caring for Al after his stroke.  I told my therapist about being exhausted and angry.  I just wanted her to say, "OK, you can't handle it.  I'll write you a prescription that says you can take the rest of your life off of work and any other annoying responsibilities."  But she didn't.  She's not an MD, and she knew that I had to figure out to handle it all, or most of it anyway.  I couldn't just abandon my family, as much as I wished I could hire a mom to do all the dirty work of parenting and I could just enjoy my children.

 First of all, she asked me why I was so angry.  I was angry because I felt like my husband had more ability to help me than he would actually offer  (which was probably not a realistic assumption, but it was still a strong "feeling").  So, she suggested that I accept the fact that I was a single parent, temporarily.  I'm not "really" a single parent, but I had been doing all of the things that a single parent would do.  So, what if I just had the expectation that I would have to act like a single parent for a while?  I would be free from the anger of expecting that my husband could do everything he once did.

She also said that I need to lower my expectations - or at least tailor them to what's realistic for my life.  Maybe we didn't have dinner together at the table every night, and maybe I didn't "cook" every night.  The truth is that's what happened most nights anyway - we ended up eating something very simple, and we hardly sat together at the table.  But if my expectation wast that it wasn't going to happen, then I wouldn't be disappointed about it.

It's hard to wrap my mind around lowering my expectations.  I'm a perfectionist - high expectations is what I do!!! I guess that giving myself some slack for family meals is OK, but it's actually much harder to let go of my expectations for house cleanliness.  I really don't want to live in a pig-sty, but I do most of the time, so it would be helpful if I expected the house to be less clean.  Maybe I should re-phrase that:  I have to let myself be OK with a mess in the house. . . .most of the time. . .

The good news is this:  after spring break (this week), I will be moving to a part-time job at my school.  After asking my boss at the beginning of February if my job could become a job-share situation (to which he said no), he offered me the opportunity of becoming the part-time librarian at the school.  We haven't had a librarian since the school opened in 2009, and the teacher who was running the library simply couldn't do it, having to teach classes all day and all.

I will work 18-20 hours in a quiet (hopefully) environment and still have the opportunity to pick up hours by subbing in the front office if need be.  I've never been so thankful for the prospect of earning less money.

Now that I'm relaxing in the Great White North of Michigan (although thankfully it's not really white), I can take some time to catch up on all our therapy - my husband's excruciatingly slow stroke recovery and then some.

Tuesday, January 24, 2012

Whirlwind Update

I have been exceedingly busy, and so have not had much time to blog.  I will flesh out these updates when I have time, but for now, suffice it to say, I've been busy (did I mention that???)

Last night, Al and I went to our family therapist to talk about "starting" family therapy.  She has already met and evaluated each of our kids, and last night was the first night we came away with a concrete plan.  We have truly awesome kids, but our home is unpeaceful.  I know that a large part of that is my fault because I am so often unpeaceful.  But we decided, together, to work on our relationships with our children.  How?  Turn off the TV and tune in to our kids!  Sounds so easy, but so challenging when I am so exhausted after work and on the weekends that all I want to do is veg out in my favorite chair with the remote in hand or computer in my lap.  But our kids need us, and we need them, so I am trusting that sacrificing some of "my" time will be met with God's grace, as sacrifices always are.

Another quick update:  we met with a new physiatrist today (physical medicine and rehabilitation doctor, i.e. physical therapy specialist) who is going to give Al Botox injections in his arm and leg to reduce muscle tone and spasticity and hopefully give him more "bang for his buck" in terms of therapy.  Al does not like this idea at all since it involves needles and poison, but it is a promising therapy, as many people have had great results with it.

Final update for now:  I joined Weight Watchers online.  With everything I have to do, I added keeping track of food and "points" (which I absolutely hate doing), but  I was given a wake-up call at a doctor's appointment the other day when I weighed in at 190 - holy crap!  Time to do something drastic!  You can read a little more about it in my other blog:   Jenny Sue Got Married.

I truly hope to give more thorough updates in the coming days - I haven't even taken pictures of Al's cool electrostim equipment yet, so that is coming too.

Thanks for staying with me!

Monday, January 9, 2012

The Problem of Suffering

It's a centuries-old debate, and as far as I know, it has no clear answer yet:  "If God is good and all-loving, then why does He allow suffering?"

It's definitely a question we've pondered from various angles since Al's stroke.  My understanding is this:  God IS indeed all-good, all-powerful, and all-knowing and has ultimate authority over all.  He does not inflict suffering upon us because of our sin - Jesus took the punishment that was ours due to sin, as He was Crucified on the Cross.  His mercy and forgiveness are a free and generous gift.

However, we still experience pain, disease and suffering.  God allows it (but does not inflict it) for a purpose:  Endure hardship as discipline; God is treating you as his children. For what children are not disciplined by their father?  If you are not disciplined—and everyone undergoes discipline—then you are not legitimate, not true sons and daughters at all.  Moreover, we have all had human fathers who disciplined us and we respected them for it. How much more should we submit to the Father of spirits and live!  They disciplined us for a little while as they thought best; but God disciplines us for our good, in order that we may share in his holiness.  No discipline seems pleasant at the time, but painful. Later on, however, it produces a harvest of righteousness and peace for those who have been trained by it.  Hebrews 12:7-11.  My understanding of "discipline" in this passage is not punishment for sin, but rather training in righteousness.  

(Side note:  I've written about this passage before, but especially in the context of Al's post-stroke disability, I love verses 12-13, "Therefore, strengthen your feeble arms and weak knees.  Make level paths for your feet, so that the lame may not be disabled, but rather healed."  Yes!!!)

This is how I have perceived "the reason" that Al had a stroke, in the light of the previous passage:  God allowed it to happen to him for a purpose, part of which is to train him/us in holiness, and also to teach us to rely on His grace more than we ever had to before.

Now, when it comes to Al's rehabilitation and healing, there are also many Scriptures which speak to this.   In Matthew 7:7-11 tells us, "Ask and it will be given to you; seek and you will find; knock and the door will be opened to you.  For everyone who asks receives; the one who seeks finds; and to the one who knocks, the door will be opened.  Which of you, if your son asks for bread, will give him a stone?  Or if he asks for a fish, will give him a snake?  If you, then, though you are evil, know how to give good gifts to your children, how much more will your Father in heaven give good gifts to those who ask him!"

In John 14:13-14 assures us, "And I will do whatever you ask in my name, so that the Father may be glorified in the Son. You may ask me for anything in my name, and I will do it."  

Those Scriptures, along with many others seem to promise me that Al's complete healing is a done deal.  I can ask (and I have asked many, many times!) for God to heal and restore Al completely, in Jesus' name.  I don't have a problem believing that what Jesus promised us in Scripture is true.  However, there are people who are not healed - good, holy, righteous, faith-filled people - who do not receive healing from their diseases, at least not until they die and receive their glorified body in Heaven.

There is also the line of thinking which says, "You have to have enough faith for God to do the healing".  But that seems to put a little too much pressure on me, the faith-filled-but-could-always-use-more-faith Christian.  I am more like the man who asked Jesus, "Lord, I believe.  Help my unbelief."  We will never have perfect faith, but I know many people who have stronger faith than I think I have, and still haven't been healed.

So, how should I pray?  Either I can pray with absolute certainty that God will heal Al, no doubt in my mind at all!  I would like to pray with that much faith, but I also don't want to be blind and deaf to what God wants to teach me / us while we go through the difficulty.  He is the genius Creator, so He knows how to orchestrate these things for our best benefit, right?  If I only focus on asking for healing, then I may miss out on the richness of drawing closer to God during a time of suffering.

I'm writing this post because there is an ongoing "debate" with a family member who insists that God's plan is for Al to be completely and totally restored and that we shouldn't settle for believing any less.  However, she also adds tidbits about how Al and I are such good Christians and that God will definitely heal Al soon because of that.  This is where the theology gets really tricky - DOES God reward us with health and wealth for being faithful Christians?  The corollary to that line of thinking would lead us to think that God withholds material blessings or healing from those who are unfaithful.  That doesn't ring true with me. 

So, please enter into this debate with me - not for the sake of convincing me of anything in particular (I'm very confident that God has a good plan for Al's life, and that He will bring the best out of the situation - Romans 8:28, Jeremiah 29:11, etc.), but for the sake of helping me muddle through this challenging philosophy that God will indeed bless us with our every wish and whim because we are "faithful" Christians.  (I only write that in quotation marks because I know that we could me MUCH more faithful!!!)

Also, I want to be as respectful as I can be about the whole debate, but it really comes up quite often in our discussions with this family member, so I would love the input.

Thanks for your time!