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!

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!

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.

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.

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.

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.

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.