Anxiety Relief

For years, I have had anxiety about money. All of my life, really.

And then, of course, my husband's stroke added a lot of anxiety. I had generic anxiety about everything the future held, because I had no idea what the future held (and I still don't). However, we are 10 months "into the future" since the stroke, right? And we're still alive and making progress and learning how to live again.

There is still anxiety, but I try very hard to put the Lord's words into practice, "Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." (Philippians 4:6-7).

Also, when dealing with anxiety about money, I cling to this verse: "Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes? Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? Can any one of you by worrying add a single hour to your life?" (Matthew 6:26-27)

I think that, even though my children have never gone without food, clothing or shelter, it was a long and hard lesson for me to learn that God provides for His people. Always. Since the stroke, we have had some amazing "windfall" moments that I still can't even believe.

At first, Al was covered by short-term disability for 6 weeks at full pay. Then, for the remainder of the 6 months after his stroke, he received 2/3 pay. Once the short-term disability discontinued, we were covered by long-term disability, and that was about the same time that Al's social security disability kicked in. However, it took MUCH longer for our dependent benefits to kick in, but LTD was only paying us the bare minimum, as if we were already receiving the dependent benefits. During that time, I had taken 6 weeks of FMLA leave (which is unpaid), and I had 4 weeks of unpaid vacation to use up in the summer. Money was tight to say the least, but we still made ends meet.

Now for the windfall moments. There were many, and I will simply list them because I am still profoundly moved by the generosity of people, and that God moved those people to care for us.

A friend of ours, who is suffering from MS and is confined to a wheelchair - and who undoubtedly knows what kind of trial we are facing - gave me an envelope. Al was still at the hospital and I was there every day, sometimes several times a day. Inside the envelope was a $50 bill, to which she attached a little sticky note, saying "for parking, meals or whatever." (She also told me that if I wrote her a thank you note, she would run over my toes with her wheelchair! She's a fiesty one, that woman! I could learn a lot from her.)

An envelope arrived in the mail one day from a person whose name I didn't recognize. I opened the card, and it was from a friend of my husband's brother, whom we had never met. But my brother-in-law told her about Al, and she was moved to help us. Her husband had passed away in the previous year, so she knew what it was like for me/us to be struggling with finances. She included a check for $100.

During the summer, with intermittent work and FMLA time at my back, money was tight once again, and I received a very much unexpected bonus of $750 from the company I work for. I had only completed one school year and had a vague memory of being told that I would earn a performance bonus each year. This one came at just the right time. And on the very same day, I received notification from Kohls that the balance of my Kohls card on the day of Al's stroke, was completely forgiven. They have a program called Account Ease, just in case a death or disability affects the family. I'm glad I chose to enroll in the program!

Toward the end of summer, after I had taken all of my unpaid vacation, and money was exceptionally tight, I had the brainstorm for a fundraiser. I really felt that it was an idea that came from the Lord, so I ran it by a few of my friends, who agreed that it was a good idea. I had a charity yard sale, and asked people to donate goods to the sale. My friend lent us her garage (since we don't have one) and she actually did much of the organization. By the time the sale started, her garage was completely packed with furniture, household goods, clothing, toys, etc. that people had donated. The sale was Labor Day weekend, and it was excruciatingly hot and humid. But from the moment we opened the sale on to the end of each day (Friday and Saturday), there was a non-stop swarm of people. I had no doubt that God inspired every one of those people to attend that sale.

That yard sale earned us an epic $1300! In addition, people who weren't able to donate or attend the sale sent us cash and checks to help out: $40, $50, $25, $100. One friend sent me a check for $500, and another group of friends - lay men who are living single for the Lord - had been saving up money from the day that Al had his stroke. They presented us with $500 in cash! In all, we were blessed with almost $2500 toward medical and other expenses.

Later in September, we received notice from Sparrow Hospital that they had "reduced our debt by 100%", meaning they had forgiven the remainder of our $4000 debt.

As I mentioned earlier, even though my husband received his social security benefits 6 months after his stroke, waiting for the dependent benefits was a grueling trial. Each month, we would make our mortgage and other payments late, our account would dwindle down to nothing, and the new batch of SSD would come in just in time. The dependent benefits didn't come in until this week.

This week, we received another windfall of 4 months worth of dependent benefits. Finally. Just in time for the holidays.

To top it off, we received another letter and a check from the group of men I mentioned above. They are celebrating 40 years of being a lay brotherhood and wanted to give a blessing to a needy person or family. Inside the letter was a check for $1000.

With that final check, I think God finally got through to me (I'm kind of thick-headed, wouldn't you say?). I really DON'T have to worry about money or material things. I don't have to worry about our mortgage payment and car repairs. God is enough and He is a God of miracles. Money truly is no object to Him, the Creator of the Universe. I think (I hope and pray) that I am finally done worrying about money.

Please remind me of that the next time that I am tempted to worry. Instead, please tell me, and please be reminded in turn, to "Cast all your anxiety on him because he cares for you." 1 Peter 5:7

Glimpses of "Normalcy"

Al has been inspired on several occasions to hobble outside and grill some type of animal carcass. In mid-September, it was hamburgers on the occasion of Faith's birthday. She had made out a menu for every meal on her birthday, down to the beverage. Breakfast: crepes with syrup and powdered sugar, orange juice and sausage. Lunch: extra cheesy macaroni and cheese with chocolate milk. Dinner: hamburgers (on the grill, NOT fried or broiled), ketchup & pickles, chips and root beer. And dessert, of course: Vanilla cake with chocolate frosting, and dirt pudding with gummy worms instead of ice cream. She's a little particular, can you tell?

So, Al was happy to oblige by grilling the burgers. It's something he enjoyed before the stroke, and now he can enjoy it again, and was able to all summer. I remember one particular night in February, as Hope and I visited Al in the hospital, we had gone down to the cafeteria to get dinner. We walked by a display of burgers, and they smelled so rich and smokey, as if they had just come off a charcoal grill on a hot July evening. I turned to Hope and said, "I can't wait until Dad can grill in the back yard again." She agreed and we both stood there and enjoyed the smell for a few more minutes.

That night, as Al was grilling the burgers, Faith wandered outside to keep Daddy company. It was one of those late summer evenings when the house was stuffy from the heat of the day, but the evening was refreshingly cool and breezy, so we opened up all the windows to let in a new supply of air. As I worked in the kitchen to get some food ready, I could hear Faith happily chatting with Daddy outside. It struck me that Al's responses to her were so fluid. His voice sounded normal for the first time since the stroke.

Once in a while, I'm happy to glimpse the "old" normal. However, I am sure that a new normal will move in at some point, as I'm finally beginning to accept the fact that much of the old normal may be gone for good.

Bring it on.

Sometimes It All Piles Up!

Since Al's stroke just over 10 months ago, I've experienced a tremendous amount of grace to deal with it. You know how people say, "I don't know if I could handle that", when they hear about a death in someone's family, or someone's child facing a life-threatening illness. I used to say that, and hope that I would never have to face such a challenge. And others would reassure me that I would have the grace in the moment to go through such a thing.

Well, that is exactly what I'm talking about. If someone had told me ahead of time that my husband would have a stroke at age 37, I would have freaked out and tried to figure out any possible way that I could prevent it from happening. I would have spent lots of energy worrying about when, how, and why it would happen. Instead, it came very unexpectedly, and God's grace met me at that very first moment when Al called me to tell me that his boss was calling 911. God's grace surrounded me and sustained me for many months afterwards as I was a single mom, and I took over every single detail of our household, including car maintenance and paying bills, which up until then, were solely Al's jobs. His grace was enough for me, so that I actually walked around with a smile on my face, and I floated a bit above the ground as he carried me through some really challenging times. I was able to tell people that God is good and that I fully trusted in Him.

Ten months later, I have no doubt that God's grace is still enough for me; He is still sufficient for me in my weakness. But some days, like today (the past few days, actually), it all catches up to me and overwhelms me. I succumb to everything that makes me feel sad and helpless about the situation.

I miss my husband's old walk. It sounds weird, but he had a distinct gait, with a funny little spring in his step that he doesn't have now that he has to lumber around with a half-obedient leg and a cane. And I doubt he will ever have that same walk again.

I miss my husband's smile. Half of his face is still numb, so he has to really force it for the left side of his mouth to smile, and when he makes that much of an effort, he looks like a goofy kindergartener saying "cheese" for the photographer instead of the man I married.

I miss my husband's laugh. He used to have a guffaw that I can't really describe, but it would come out when he thought something was especially funny. Now, as he so affectionately describes it, "I sound like a dumb-ass." He still knows HOW to laugh and has a great sense of humor, but the old laugh is gone. I hope and pray that it's not gone for good.

I miss having my husband wrap both arms around me. Only one is functional at this point. His one-armed hugs are still pretty strong, but there is something so secure about being enveloped in both of his arms.

I miss having my husband take care of me: little things like driving when we go somewhere together, or running to the bank to get money, or getting pizza on Friday nights, or picking up a few things at the grocery store when I didn't have time. Now I do all of those things.

I miss our sex life. Yeah, we're all adults here (I hope). I miss the closeness we used to share when his body was capable of doing what he wanted it to, and when he still had some libido. But that is on hiatus for a while, and I don't like it! We have other ways to express our affection and to be intimate, but there is nothing quite like the real thing.

There you have it. A few of the many challenges we face. I am always trying to give thanks for what I do have: my husband's life(!), my children, a job, provision for all of our needs. I am trying not to fall into a habit of feeling sorry for myself. But some days, it overwhelms me.

Family therapy

Now that I've "introduced" myself and my husband, now it's time to let you into a little bit of our family story.

As I mentioned in my post about my struggle with depression, I always wanted to be a wife and a mom. Therefore, I thought I was most well-suited to take on marriage and motherhood as my "career." The marriage part was fairly easy for me - I love being married, and our relationship has never had any major difficulties.

It was the motherhood part that took me totally by surprise! I always want to be 100% clear about this: I LOVE MY FAMILY and MY CHILDREN ARE FANTASTIC. But nothing in my life had really prepared me for the absolute sacrifice and laying down of my life that parenting entails. I came face to face with my own selfishness in a way that I never had before. It was hard to be in complete demand 24/7 by a tiny little human being who needed me more than anyone else in the world, even more than her daddy. I think that, in a way, I realized that my life would never be the same again, and I would never again have the same "freedom" I did before I had kids.

Having 2, then 3, then 4 kids right in a row definitely drained me physically and emotionally. I lost my temper a lot. I escaped a lot into video games or TV. I even hid from my kids from time to time.

I began homeschooling my first-born the same year that baby #4 was born, and it was kind of like a fresh start. Homeschooling a Kindergartener was e.a.s.y. Even with a newborn. I loved the schedule, and everyone seemed to get enough of mom.

I started schooling my second daughter the following year. It was still fairly easy, but child # 2 had a more challenging personality. And trying to find time to love, educate and mother 2 homeschoolers, and pre-schooler and a toddler was becoming more overwhelming. It was in December of that year when I was finally diagnosed with depression. I started taking Zoloft, and things became manageable again.

Two or three years into homeschooling, as I had more to teach the kids and eventually added one more student to the mix, I became overwhelmed once again. In all, I taught homeschool for 5 years, but during the last 2 years, I was "escaping" from the kids a lot more, i.e. sleeping in late, canceling lesson plans, taking 2-3 hour naps in the afternoon while my kids ran the roost. At the time, my doctor and I were on the verge of calling it chronic fatigue syndrome for lack of any better way to define what was going on with me. In retrospect, I'm sure I just didn't have my depression under control. I had stopped taking Zoloft due to the weight gain. Effexor XR kept me at a baseline that prevented me from wanting to die or do anything drastic, but I just wanted to escape because life was overwhelming and I felt like I had no control over anything.

I was doing what I always wanted to do. And I felt like a failure at it.

And all the negative stuff I felt about myself was fairly apparent to my kids. So, my young kids had a mom who was often depressed, occasionally screamed at them out of frustration, and once in a while told them "Just get away from me." Needless to say, my kids may have learned some less-than-healthy ways of dealing with emotions. The biggest issue in our house is anger and rage. None of us have a very good reign on our temper. We are all very good at speaking our minds and expressing ourselves, but sometimes a little too well as we have let many angry words fly (in the form of yells, screams, hisses, bellows, roars, and cries). And not only has the exchange of words gotten out of control - there are dents in the walls and holes in our interior doors due to the fury often expressed by our precious little munchkins.

For years, I had asked my husband to agree to family counseling. He never really thought our issues were serious enough to warrant counseling. Until now.

Since Al's stroke in January, the kids have done remarkably well. But they have, understandably, had a hard time with the fear and anxiety that came with it. They saw Al one day as their fearless, capable, strong Daddy, and the next time they saw him, he was lying in a hospital bed with slurred speech and completely unable to move half of his body. It was a very scary time, but he often reassured them with his whacky sense of humor. He was at the hospital for 6 weeks, during which time I was a single parent.

Once Al returned home, it wasn't much different since Al rested a lot and wasn't able to handle much commotion. Our son even asked him, "Now that you're home, do we still have to obey you?" I think there was a real lack of understanding of who Dad had become. He was still speaking slowly, so it may have seemed as if he wasn't as mentally competent as he had been.

One night, our daughter and I had a long, heated discussion about Daddy helping her with her homework. She was in 2nd grade and she wanted me to help her with math. I was doing the dishes, so I asked her to have Daddy help her with her homework. I told her it would be good for him to help her. She insisted that he wouldn't know how to do it. Second grade math! I still don't quite understand if she was just a little afraid of how Daddy had changed, or if she seriously thought he couldn't do 2nd grade math.

Al has tried to become more involved in our parenting efforts, but he remains quite limited by his physical disability - he can't even physically best our 6-year-old. And he can only take so much chaos. It seems the kids still aren't taking him seriously.

A few months ago, Al finally agreed to pursue family counseling. We have only met with our counselor 4 or 5 times, the first few times as a couple, and then one time with Hope, our oldest. The counselor wanted to meet with her first, and then gradually meet with the other kids.

As of yet, we don't have much insight to share from family counseling. This is just a short tale of the journey that has led us here.

Introducing ME

The first several posts of this blog have been devoted to my husband's stroke. Now it's time to introduce myself and my own therapy (of which there has been only a small amount). I have dealt with depression since I was a teenager. However, I wasn't diagnosed until 2005. I had given birth to my 4th child in 6 years and I was exhausted. I remember clearly having a meltdown with my husband - I told him I couldn't handle all the demands of my life any more and I was probably accusing him of not helping me enough and not being sensitive enough to my feelings, blah, blah, blah. Then I left to go to a meeting. Instead of fighting back, my husband simply let me leave and then called up a good friend that we've known since college, who also happens to be an MD. Al spilled all of my issues to Dr. P., who candidly said, "She's depressed, bro." Al promptly made an appointment with our family Doc who concurred that I was indeed suffering from depression. (Dr. P wasn't our family Doc at the time, but he is now.) It was a mystery to me as to how I could suffer from depression, but I always knew something was "wrong" with me. I have a very blessed life - I'm married to my best friend, we have 4 amazing kids, and I truly love being a wife and a mom. We have a great, supportive Christian community that we are involved, and in general, our life is very fulfilling. How does someone who is so blessed get depressed? I've discovered over the past 6 years that there are a lot of causes for depression, and it seems I have a little bit of each. First of all, I grew up in a home with a father who was angry almost all of the time. In retrospect, I'm quite sure he was suffering from depression, too, and probably still battles it on a regular basis. My mother was always very even keel, but our family didn't talk about "deep" things very much. So I battled with the natural emotions of adolescence, and I didn't have a way to talk through them. I kept them in and thought that I was abnormal for feeling sadness and mood swings. Well, maybe I didn't keep them in as well as I thought, since I have a distinct memory of crying while I was doing the dishes, and my dad asking me, "What the hell are you crying about???" (Disclaimer: my dad is a great guy and I love him; he just didn't know how to respond to girl emotions.) So between normal teenage angst and living in a home with depression, depression got into my system. I am also a vicious perfectionist. But I'm also kind of a slacker, so I let myself down a lot! When I went off to college, I didn't really have a vision for what I wanted to do with my life, so I was a mediocre student at best. And then I felt guilty for not pursuing a high-powered career. To be honest, all I ever really wanted to do with my life was to be a wife and a mom. In 1996, the first part of that dream came true when I married my best friend, Al. In 1999, the other part came true with the birth of my first baby. How, then, could I still be depressed??? Having 4 kids in 6 years is a little stressful on the body, as well as the mind, since I was a stay-at-home mom with 4 young'uns, ages 5 and under. So, as much as I loved my kids and my home and being the wife & mom I always wanted to be, there was constant stress on my body and mind for 6 years straight. The way Dr. P described it to me was that my brain really was fried, for lack of a better term. Chronic stress = brain frittata = lack of ability to deal with normal stuff of life = depression. Hey, my doc could explain it better, but that's because he went to med school for 8 years and I didn't. To make a long story short, I was very much relieved that I actually had depression and that I wasn't just failing at life. Since having been formally diagnosed with depression, I have tried a few different antidepressants. The first and best was Zoloft. It worked wonders, but I quickly gained 20-30 lbs., which I have yet to lose! After 6 months, I went off the Zoloft, hit rock bottom, and then tried again with Wellbutrin (didn't do anything), Lexapro (curbed my appetite, but made my moods kind of flat - not much up and down), and finally Effexor XR, which is what I am taking now and have been for a few years. It does the trick and has probably led to a little more weight gain - I am now about 50 lbs. overweight and I really need to get on track with the weight loss thing - BUT, it's better than being chronically depressed and suicidal, right? Even with all of the possible causes of my depression - family history, perfectionism, chronic stress, etc. - I have always known that I myself needed to work on one thing to get better: my thought life. Clearly, perfectionism involves a lot of skewed self-talk like, "I have to be perfect," "People won't love me if I'm not perfect," "If I can't do something perfectly, then I have failed at it." etc. So, I know that I need to teach myself positive (and truthful) self-talk. About 2 years ago, I started seeing a Christian therapist so that I could talk through some of my thought life with her and try to develop better thought patterns. However, I stopped going when my husband had his stroke, due to sheer lack of time and ability to get away. Oddly enough, I haven't experienced much depression since Al's stroke. I know for a fact that it was due to a LOT of grace from the Lord, and probably lack of time to actually become depressed. Oh, sure, I've had my moments of anger, grief, frustration, sadness, etc. and yes, some depression, but not nearly as much as I've experienced in the past. There will be many more posts to flesh out all of my depression and anxiety issues, but this is the start.

This Will Take How Long???

As I mentioned in my "timeline" post, I was unaware at first about how long stroke recovery can actually take. When Al was finally diagnosed as having a stroke, 3 CT scans and an MRI later, I thought, "Well, good now we can start working on fixing this." My sad impression was that Al's left side had simply fallen asleep (although I knew that it much more complex than that), and that it would take some jiggling and massaging and a little PT here and there to wake his left side up. I mean, after all, he wasn't paralyzed in the way that I always thought of paralysis, which was complete lack of feeling or movement. By the time the stroke was complete, Al could still feel and move most of his left side to some extent, so I assumed it was just a matter of exercising those parts back into full functioning. I seriously thought it would take 2-3 months. Period.

Ignorance is bliss, but I was slowly immersed in reality as Al endured 6 weeks of inpatient therapy just to be stable enough to walk to the car, get into the car, and climb the 5 front steps of our house. He still relied heavily on my assistance to walk around the house, go to the bathroom, get a shower, and get his food.

OK, so he wasn't back to normal after 6 weeks. I figured a few more months of outpatient therapy, combined with his immersion back into his *real* life would be all it took to get him back to *normal*.

He definitely made more improvements with outpatient therapy. He became more stable so that I didn't have to help him walk everywhere in the house. In fact, we ditched the gait belt pretty shortly after we came home - we used it for maybe a month, tops. It just seemed to say "old man", which was a statement that neither of us wanted to shout from the rooftops, since he is only 38, and I, 41. We felt we were prematurely becoming "old" with this whole ordeal anyway, so to get rid of one of the symbols of dependence was helpful. Besides, I enjoyed having to grab the waistband of his pants once in a while to steady him - it gave me another chance to pinch his tush.

By the time he was discharged from therapy for the first time, it was summer. June 1 was my first goal for Al to be able to go back to work. That was clearly not going to happen, so I thought maybe he would resume work in the fall.

However, he received no therapy during that time, since his physiatrist was working on reducing his spasticity in order to maximize his future therapy. June, July and August passed with no therapy and not much improvement.

Finally, in September, he was re-admitted to outpatient therapy. I thought, "This is it! This is the final push he will need to get back to his normal life!" After about 6 weeks of tweaking his gait and pushing him to use his still non-functioning arm, he was discharged again. They sent him home with exercises to do and told him that just coming to therapy wouldn't help him improve - doing the exercises daily at home would. So he was left to pursue the rest of his recovery on his own.

We have new potential for help with his recovery, though, since his parents have done some research and found a Bioness representative nearby. They took him to a consultation last week, and the equipment looks very promising. The Bioness "foot drop system" uses sophisticated technology to his foot when to lift and flex during the process of walking. The "hand rehabilitation system" uses the same technology to activate the muscles of his arm and hand so that he can grasp objects and use his hand in a more normal way.

I am excited about this, yet also a little concerned that a) our insurance may not cover it, since it is a fairly new technology, and b) the testimonials given were all by people who were still using the equipment, but so far, I haven't seen proof that it can lead to long-term independence without the equipment; i.e. is he going to have to use it for the rest of his life??? That part was unclear, although the theory seems to be that the repeated activation of the affected parts will eventually create new pathways from the brain to those parts, in sort of a reverse pathway regeneration.

Al is excited because Bioness reminds him of the 6-Million-Dollar Man, his childhood hero. I can hear him softly humming the theme music as he fantasizes about leaping over buildings, etc.

In any case, although we have new hope, the process of recovery is long and arduous. I'm getting pretty tired of it - I can only imagine how this is dragging on for my husband, who is at home alone every day and faced with his limited ability every moment.

Stroke Rehabilitation Begins

Here, I will compose a very general timeline of what has happened over the past 10 months to bring you up to speed on where Al is now.

The stroke occurred on January 5, 2011.

January 11, 2011: Al was transferred to the Sparrow Inpatient Rehabilitation Center. Same floor, same hospital, different feel - more like an asylum than the cozy, hotel-room feel of the ICU. The original estimates of Al's hospital stay were 2-3 weeks, and I had the ignorant notion that he would be all better in those 2-3 weeks. Soon the 2-3 weeks turned into 4-6 weeks of inpatient therapy, and the "all-better" estimate, in my mind, was becoming more like 6 months. I figured that Al might be able to go back to work by June 1. The doctors and therapists let me go on in my naive thinking for a while, but gradually let on that stroke rehabilitation takes many months, and even years. In fact, a stroke victim isn't considered fully recovered until after the 2-year mark.

(To read more, visit my other blog and read, Chronicle of a Stroke, One Month and Beyond.

February 17, 2011: Al came home from the hospital, 6 weeks and 1 day after his stroke. The stroke had left him moderately paralyzed on his left side. He came home with a wheelchair, which he didn't need in the house, but was very useful for trips outside the home. He was able to walk with the aid of a leg-length brace (a knee-ankle-foot-orthosis, or KAFO), a quad cane, and a gait belt, which I used to help him keep his balance for the first several weeks. He was unable to do much except sit down and watch TV and use his laptop one-handed.

I stayed home from work to be with Al for several weeks. I mainly helped him work on daily exercises, drove him to and from his outpatient therapy appointments, and tried to keep on top of parenting our 4 kids, which was pretty well outside of Al's skill set for several months.

(To read more, visit my other blog and read: Chronicle of a Stroke, Month 2 and Chronicle of a Stroke, the 3-Month Mark.)

February - June, 2011: Outpatient Rehabilitation at Sparrow Professional Building. Al attended outpatient therapy approximately 3 times a week for 2 hours a day. One hour a day was spent in Occupational Therapy, practicing upper-body useage and everyday activities, and Physical Therapy, which focuses on the lower body, walking, and balance. During this time, Al made some improvements, but we were discouraged by the lack of encouragement from his therapists, as well as the apparent lack of experience that most of those therapists had with stroke victims. They seemed to treat Al as a victim of a sports injury rather than a stroke patient. And neither did they send him home with exercises to do or goals to try to reach.

June 2011: We sought the help of a physiatrist, a physician who specializes in physical and occupational therapy. He began treating Al with Baclofen, an anti-spasticity drug. His primary focus was to get the spasticity and tone under control before prescribing further physical and occupational therapy. His reasoning: going to PT and OT without getting the spasticity under control would be like trying to drive a car with the parking brake on. We spent a good portion of the summer tweaking the Baclofen dosage, as well as adding Ritalin to stave off Al's chronic sleepiness and potentially boost his stroke recovery, a theory that is supported only by various anecdotes from other stroke survivors.

September - October 2011: Al entered his second round of outpatient physical and occupational therapy, during which he "tweaked" some of his skills. During the last week or two before his discharge, the OT challenged him to become more self-sufficient in his ADL's (activities of daily living), specifically to take a shower by himself and get himself dressed. Al passed both tests with flying colors.

That all brings us up to today, November 7, 2011. Al regained quite a bit of his mobility, balance and independence, but he is far from fully recovered. He has the use of his left shoulder and minimal use of his upper arm. He has no use of his lower left arm, hands or fingers. The left side of his face is still numb, although he can still speak fairly well and just needs to be careful about chewing thoroughly and swallowing. He still uses a cane to walk, although he challenges himself to walk without it regularly, and the KAFO has been broken down to be an AFO (ankle-foot-orthosis). He is beginning to drive, cautiously and only short distances. Otherwise, it seems as if we're at a standstill. Hopefully that is not really the case, but it's difficult to tell how things will progress from here.

Chronicle of a Stroke, Day 3

Originally posted on January 17, 2011

January 7, 2011.

In the wee hours of the morning - maybe 3 or 4 AM? - the nurse came to put a new IV in Al's arm. I'm not sure why, but he already had 2 in his right arm, and they were both bothering him greatly. So the nurse decided to try his left arm. I was glad he wouldn't feel that one as much, but I was relieved at the same time to hear him say "OW!" I knew his arm wasn't completely dead!

Around 5 AM, the nurse came in to take Al's vitals, and at this point, he awakened easily and was using fairly easy speech with full sentences. I was thrilled to hear his voice! He was also able to lift his leg and feel more in his left arm. Throughout the day, we waited for confirmation that he could be moved back out of ICU (although, to be honest, I was thankful for the private room and quiet environment.) However, the stroke team decided that Al should still spend another night in ICU for further monitoring.

However excited I was about his alertness, I was still scared. My fear for his life was dissipating, but I was still afraid the unknown future. I was slowly starting to realize what a stroke does. It doesn't just cause temporary numbness and tingling. Al had lost most of the feeling and mobility in his entire left side, and some of that had returned, but I had been hoping that it would all just gradually return, like a sleeping hand or foot slowly wakes up again. But that isn't how it works after a stroke. The brain has to create entirely new pathways to communicate with the affected side.

As Al began to feel more awake, he told me he felt like he could just get up and cruise around with a walker. But what he and I didn't fully realize was that even though he thought he could tell his left side to move, his brain simply wouldn't obey. As one physical therapist put it, "His brain is ignoring the left side of his body."

I went home once again to get a shower and make a few phone calls. I was pleasantly surprised to find my house entirely clean. A few of my neighbors had rallied to take care of the mess that had been left behind in our post-holiday rush. Shortly after arriving home, my friend Jan came by with all my laundry, fresh and clean. Oh, the blessings of friendship!

Back at the hospital, later on in the afternoon, I was trying to doze and I prayed that I would fall asleep quickly. The thought crossed my mind that maybe this was one of those awful nightmares, and I would be so thankful to wake up and have Al sleeping next to me in our own bed. And he would be perfectly healthy. Sadly, I soon realized that this experience had far too much detail to be a dream.

As afternoon drifted into evening, I made sure Al had dinner and his beloved bottle of Sprite. I asked him about 48 times if he was OK and if he needed anything else. Then I finally convinced myself to leave. I went to pick up my children at my friend's house at around 7:30, and when she learned that Al was still in ICU, she offered to have them stay one more night. It was an arrangement that everyone was happy with, and I went home to sleep. I was tempted for a few moments to just head back to ICU and sleep next to Al a second night, but as I stopped by Phil and Michelle's house to pick up a few things, Phil convinced me to go home to sleep. I had to admit that my own comfy bed was much more appealing than the recliner at the hospital. I took a Unisom and was able to sleep straight through until 8 AM. To be honest, I could have slept longer, but I wanted to get back to my hubby's side.

Chronicle of a Stroke, Day 2

Originally posted January 16, 2011.

January 6, 2011

I had been dozing in the chair next to my husband, content to hear him breathing. When the nurse came in to wake him, I realized that he was still as groggy as the night before. He had a hard time waking up and keeping his eyes open. His speech was getting more labored and muddled. I figured he was still fatigued from the previous night's ordeal. However, when the stroke team came in to visit him, they were visibly concerned at his overly sleepy state and his complete lack of sensation or movement on his left side. They ordered yet another CT scan (CT #3!) to find out if there were any new developments. (All this time, and we were still on the waiting list for an MRI!)

The next 24 hours were the most blurry, perhaps due to lack of sleep and the surrealism of it all. I had decided to go back home (thank goodness the hospital is only 6 blocks from our house), and get some more clothes to send to my friend's house for my kids. Some time during that hour (or was it two hours? Maybe 3? I can't really remember), I got a call saying that Al was going to be moved to Neuro ICU so they could keep a closer eye on him. I think that's when I fell into a full-fledged panic. I called my mom and sobbed to her over the phone that Al might have had a stroke. I told her that the idea of telling Al's parents was terrifying. We hadn't called either family until then because we wanted to have answers before worrying them, and we were hoping all would be well by the next day.

Once I returned to the hospital, I got the definitive word – first from my husband, and shortly thereafter from the stroke team, that the 3^rd CT scan showed an area of stroke.

Damn it! It really was a stroke. And I was afraid it would take my husband away. Even if he survived, I wasn't sure what he would be like when it was all over. I was slowly learning that a stroke isn't necessarily an instantaneous event. I would later learn from one of Al's nurses that a stroke can progress for 3-5 days. I was growing more worried since Al's condition had already deteriorated quite a bit from the night before; I didn't want to know how much worse it could get.

I called Al's parents, and thankfully his dad answered. For some reason, I was able to hold myself together enough to tell him the news; I'm sure I wouldn't have been so composed if his mom had answered. There was no tactful way to say it, so I just came out and said, "Al had a stroke. It's in the area of his brain where his tumor was. He's in ICU. He can't feel or move anything on his left side." It seemed my words were so blunt, but there was really no other way to say it.

There had been a flurry of phone calls for the past day, but at one point, I realized that our good friends Michelle and Phil may not know what was happening yet. I called and left an abrupt message: "Al had a stroke. We're in the ICU. Just thought you'd like to know." Phil was there within the hour. He looked sad and concerned that his friend had once again landed himself in the neuro ICU. (A few years back, Al had flipped his scooter and managed to break his scapula and 3 ribs. Neuro ICU for the first night was just precaution, and then he spent 2 days in the neuro / ortho step-down unit.) And obviously even more concerned since a stroke is much more ambiguous in terms of damage and extent. He visited a while and then offered to retrieve anything we needed from our house. I asked for my laptop so I could get online and update people en masse, instead of trying to catch the now-steady stream of phone calls. A while later, Phil's wife, Michelle returned with the requested computer and my warm bathrobe, which turned out to be a gigantic blessing later in the night when I slept in a vinyl chair beneath a frigid window.

At around the same time, our family doctor – and long-time friend of Al's and mine – showed up to check on us. His reaction concerned me the most as he looked over Al and tested the feeling on his left side. As I stepped outside the room with Dr. Pete, he told me more than he had dared in front of Al. He voiced his concern about the density of Al's stroke, and how it was devastating to see it happen to a friend. I asked the scariest question of all: Was there a possibility that Al would never regain the use of his left side? Dr. Pete admitted that it was a possibility, but not a very big one. Al is young, and he had learned to walk again once before, after his childhood brain tumor. But I still cried and Dr. Pete hugged me as he got ready to leave.

Al and I settled in for his second night in the hospital. He was still as sleepy as ever, so it didn't take much to get him ready to nod off. I, however, had to take a long walk to use the bathroom, and then try to make myself as comfortable as possible in a vinyl recliner.

I had slept for maybe an hour when I heard Al's nurse come in and try to wake him to take his vitals. She started out in a loud whisper, “Albert, wake up.” Nothing. She got a little louder, “Albert, Wake Up!” She started tapping his shoulder and leaned her face in close to his. I was quickly growing concerned. He simply wasn't rousing. After a few more minutes of poking and prodding, Al began to mumble something incoherent. I tried not to panic, but my fear was that the stroke was taking more away than just his movement. I prayed to God that his mind would still be intact. As the nurse's voice had escalated to a yell, Al did not open his eyes, but stated in a very determined, deadpan voice, “You're yelling in my face.” Ha! His mind was still there! He told me later that the nurse had breath that would wake the dead, and he had been trying to formulate a tactful sentence that would convey the message to her.

After the vitals were taken, we drifted back off to sleep; Al more deeply than myself, I'm sure. Still, I was able to sleep more soundly than the night before, knowing Al was breathing a few feet away from me.

Chronicle of a Stroke: Day 1

This is the beginning of Al's Stroke story, which I originally posted in my other blog on January 15, 2011.

January 5, 2011

Five days after the New Year, three days into a new school week. We were still winding down from the holidays, and our bags weren't even unpacked from our recent trip up north. Near the end of the work / school day, I received a call from my husband. It seemed a little odd because e-mail is our standard mode of communication during the work day, and we had already bantered back and forth quite a bit. It was also just a little different that he was calling me from his desk phone instead of his cell phone. Oh well, I was sure he just had a quick question about the evening's activities or something.

I answered cheerfully, and he told me he was hoping my co-worker would have answered. He started saying maybe he should explain to her what was going on, and she could relay the message to me, because he didn't want me to worry. OK. I started to feel a little uneasy. No, I assured him that I would be fine, and that he should just go ahead and tell me what was going on. I prepared myself for the worst - by the way he was acting, I was sure he must have lost his job. But I was completely wrong.

He began by telling me that he had been having short periods of numbness and tingling down his left side for a number of weeks, once or twice a day. He hadn't mentioned it because he didn't want to worry me. But now, he was having increasing numbness on his left side that hadn't gone away. He was calling to tell me that his boss was going to call 911. He didn't want me to be blindsided by getting a call saying he was transported by ambulance to the hospital. But he seemed very calm and collected, so I was sure the 911 call was just a precaution – they didn't want him driving himself to the ER with limited sensation on his left side. He had also had similar symptoms a few other times: once during a time of high stress in his life, and the doctors concluded it was just anxiety, and another time when he developed Bells Palsy, where the left side of his face was numb and limp for a few weeks. What I didn't learn until later was that he had already fallen down and hit his head, and that his boss saw that the left side of his face was drooping.

OK, I promised not to panic or worry as I hung up. Then I quickly tried to come up with a plan for my 4 kids who were just getting out of class and making their way into the school office. I had to figure out a way to quickly tell my co-worker what was going on while fighting back a little bit of panic, all without my kids noticing. She, of course, told me to just go and not even worry about getting my desk cleared up, etc.

I went into the copy room to make a phone call. I got through to one of my besties, Heidi, and asked if my kids could come over after school. If my kids could live anywhere else, it would be at Heidi's house – her kids are my kids' best friends, they live in a gigantic, wondrous house filled with fun things to do, and they have a fabulous sledding hill in their back yard, as well as a frozen pond for skating just across the road. I told her what was happening, and she hesitated only for a second – being a busy homeschooling mom of 8! - and said, “Sure, bring them over!” So, I quickly herded my children out the door, trying to do my best to answer their questions about what was going on, I simply said, “I have to go and meet Daddy somewhere for a little while.” They pressed me for more details, but I told them they would have to wait.

Once the kids got settled with Heidi, I headed back across town toward the hospital. However, I hadn't eaten much since lunch, and it was going on 4 PM. I figured the ER visit would take a while and I should get some food so my blood sugar didn't plummet. I tried to hit the McD's drivethrough, but there was a tremendous line, so I just ran in to get take-out instead. All the while, I was thinking, “This would seem kind of selfish if anyone knew that my husband was being whisked to the hospital in an ambulance.” But knowing what I know about my blood sugar levels, if I don't eat regularly, I can become an incredibly emotional mess. And I was already close to it.

However, I was able to keep myself from panicking. I talked myself down, reasoning that there was most likely a simple explanation. At moments, I almost felt annoyed that we had to deal with another issue. I was afraid, but reasonably sure that it would turn out to be nothing and we would have spent our precious evening in the ER instead of warm and cozy at home. I figured that maybe I would be able to take the next day off if we were a long time in the ER.

Once I arrived at the ER, I was led to a room where I found my husband's coat, but he had already been taken away to have a CT scan. I was glad for a few minutes of quiet before they wheeled Al back in. The first thing he said to me was, “The lengths I go to to get a day off of work!” He told me that his boss already told him to take the following day off, and he had made an appointment to see our family doctor first thing in the morning. At this point, I was still sure that they would be running a few tests and come to the conclusion, once again, that this was somehow anxiety-related. I decided that, yes, I would take the next day off, go to Al's appointment with him, and spend the rest of the day at home with my hubby. That would be nice.

Shortly after Al's return from the CT scan, an X-Ray technician came in with a portable X-ray machine. “Wow,” I thought, “They're pretty quick with these tests.” Not the slow-moving ER I had experienced in the past. I was hoping we'd still be able to get done and get the kids to bed at a reasonable time.

After the X-ray, I was able to get a bit closer to Al and I noticed his left eye was wide open. The Bells Palsy a few years earlier had left it slightly more wide open than the right, but at this point, it was even more noticeably wide open. And his smile was droopy on the left. But he was still my goofy husband, talking about getting to stay home from work the next and playing his new video games from Christmas.

While we waited to see doctors, he had to go to the bathroom. We pressed the call button, and in came a male nurse. He brought over the urinal and started to undo my husband's belt buckle. I stepped in and said, “I can help him.” And then Al added his 2 cents: “It's OK, she's had my pants off before.” Ahem. He definitely hadn't lost his sense of humor.

Once we took care of the potty, I noticed his lips were dry, so I dug out my recent Burt's Bees purchase: “replenishing lip balm with pomegranate oil.” I spread some on his lips and put the tube back in my purse. A few minutes later, I realized that the lip balm was actually kind of pink and sparkly. What a nice touch!

Not too long after, a neurology doctor showed up and told us that the CT scan and X-ray didn't reveal any problems. They had Al do a few tests, including strength tests of his right and left limbs. He was able to lift both left and right legs, and left and right arms, although the left side seemed notably weaker. The doctor left and returned shortly with another neuro doc, specifically a “Stroke Fellow” (sounds funny, doesn't it?). That's when they started using the word, “stroke”. I was sure they were mistaken, and that eventually they would come to the conclusion that this was all due to stress or some funny side-effect of medication.

Once the doctors left the room, Al and I had some quiet, and the room was dark. Suddenly, Al became very drowsy. “I hope they don't mind if I drift off”, he said, and fell asleep as soon as he had said it. I assumed that he was starting to feel the stress of the day and just got tired. However, when the stroke team returned, they were much more concerned about his marked drowsiness, and his deteriorating sensation in his left side. They asked him once again to move his left leg and arm, and he was barely able to do it. They ordered a second CT scan – a CTA, which uses a contrast, inserted through the IV, to get a more enhanced picture of the brain, and they would also scan his heart and major arteries from heart to brain.

Once again, the CTA came back negative. “See? It's not a stroke,” I thought, figuring that at least they were getting closer to the diagnosis. The stroke team continued talking to us about our "options": did we want to give Al a TPA, a clot-busting drug, just in case this was a stroke that was not yet showing up on the CT scans? "How should we know? You're the doctors!!!" (I only said that in my mind, but I thought it was kind of ludicrous that they were asking US what we wanted to do.) Administering a TPA carries a small risk of brain hemorrhage, a risk we weren't willing to take unless the doctors were certain this was a stroke. And they wouldn't know that until they could do an MRI, for which they had him on the waiting list.

Meanwhile, the orders had been put in for Al to spend the night for further tests. He got a room rather quickly, and once he got settled, I went home for some sleep. I had called Heidi earlier on in the evening, and she offered to keep my kids overnight and get them to school in the AM.

I got home, had something to eat and went to bed at around 11. I slept fitfully for about 3 hours and then I woke up at around 2. I called Al's nurse and she told me he was sleeping peacefully, but that he had "returned" his dinner, due to the dye from the CTA scan making him nauseated. Poor guy.

After I got off the phone, I succumbed to the anxiety and emotion of the past several hours and had a good cry. I think I was slowly starting to realize that there may be something serious going on with my hubby. I started to fear the worst. What if he died while I was gone? What if he drifted away and I could never talk to him again?

I prayed. I got on Facebook to see if there was anyone to chat with, I did some laundry, I tried to sleep some more. Nothing worked, so I took a shower and got ready to go back to the hospital at the very reasonable hour of 5 AM. Once I got there and found out my husband was still alive, I breathe a sigh of relief and dozed off in a chair next to him for the next few hours.

The Stroke

My husband had a stroke on January 5, 2011 at the age of 37. To say that it was "unexpected" is an understatement.

Al, however, said he had always felt like a ticking time-bomb, as if he knew in the back of his mind that something like this was bound to happen to him.

When Al was 6 years old, he had an inoperable brain tumor, a cystic astrocytoma, to be exact. It was too deep in his brain to be removed surgically, and there was a cyst attached to it that continued to fill up with fluid and press on the motor nerves for the left side of his body. After the first surgery, the doctors put a shunt in so that they could more easily drain the cyst. That was all they could do, or so they thought. But his parents consulted the best surgeons in the business and eventually convinced one of them to do radiation on Al's tumor, even though the medical evidence at the time showed that radiation would be useless on that particular type of tumor. The bottom line is that after a year of treatment and surgeries to drain the cyst, the tumor was completely gone. Even the doctors agreed that it was miraculous - there was no reason that the radiation should have worked, but it did!

For 31 years, Al has been tumor free. We often used the large, horseshoe-shaped scar on Al's head to witness to others about God's healing power.

However, Al had always wondered if his past would come back to haunt him.

And in a way, it did.

Once the doctors determined that he was indeed experiencing a stroke, they told us that it was in the exact location of his tumor 30 years ago. Our doctor explained that the radiation must have damaged the vessels in that part of his brain so that the stroke was inevitable.

Now, we are working on Al's rehabilitation once again. And we are actively putting our hope in the God that saved Al's life 31 years ago!

Welcome to My Blog!

I'm Jen. I love to write. Writing is therapeutic, cathartic, and a great escape for me. My family has gone through several kinds of therapy over the past few years: I began therapy about 2 years ago to deal with anxiety and depression. My husband had a stroke on January 5, 2011, and has been subjected to physical, occupational, speech and recreational therapy for the past 10 months. Now our entire family is endeavoring to begin family therapy so that we can deal with our various levels of fear, distress, and anger since Daddy's stroke, as well as the depression and anxiety that existed before the stroke.

I will attempt to write along these 3 threads in this blog - my own personal therapy, my husband's stroke rehabilitation, and our family therapy - although I'm sure there will be much overlap of the 3 arenas.

I will also include many "flashbacks", since we are 10 months into the stroke drama. Try to keep up!