From the Inside Out

It’s been almost 5 months since our lives were turned upside down by a stroke. Oh, how I’ve learned to despise that word. I had no idea how many people (young and old) experience strokes and how devastating they can be. I guess you can never fully comprehend something until it happens to you.

Since my father’s stroke, I’ve had numerous friends whose loved ones have also experienced strokes. Sadly, some were worse, but many weren’t as severe — for which I am thankful. A massive stroke is a special kind of hell that traps sufferers in their own bodies until the brain heals itself…if the brain heals itself.

My Dad is making progress, but it continues to be painfully slow. I think the worst part is that he still cannot communicate. That has to be the single most frustrating experience for all of us, especially him. The therapists equate it to being in a foreign country where no one speaks your language. At times, he can’t understand us, and we can’t understand him. Just imagine how difficult and lonely it would be if no one understood what you were saying for five months.

Yes, we’re learning how to overcome it, and he understands more of what we’re saying every day. Unfortunately, we don’t understand much of what he says. However, words (and some phrases) are beginning to come. They pop out randomly. He doesn’t have control over it, but it’s better than nothing. It’s fantastic when he opens his mouth and utters a word or a phrase that’s intelligible. I pray that his speech will continue to improve until one day he no longer has to struggle to communicate.

Since my father’s stroke, I’ve met a few people who have conquered their strokes. In fact, I recently met a man who experienced a massive stroke (including paralysis and the loss of communication skills) like my father. I had no idea. His speech was perfect, and he was participating in a 32-mile cycling event. I love hearing stories from those who have regained their lives after a 1-2 year battle. It’s encouraging.

I pray for the same experience with my father. If anyone can do it, he can. But, it doesn’t mean that I don’t battle with my doubts. I have those internal struggles just like everyone else. I guess that’s normal. No one can say with any certainty what the future will hold. God promises that He will never forsake us, but He doesn’t guarantee that our lives will always be rosy. Sometimes He heals, and sometimes He doesn’t. It reminds me of an old song we used to sing:

I don’t know about tomorrow,
I just live from day to day.
I don’t borrow from it’s sunshine,
For it’s skies may turn to gray.
I don’t worry o’er the future,
For I know what Jesus said,
And today I’ll walk beside Him,
For He knows what is ahead.

Many things about tomorrow,
I don’t seem to understand;
But I know Who holds tomorrow,
And I know Who holds my hand.

I may not understand it, but I’m not alone. God knows exactly where I am and what I’m going through. He gives me strength. He gives me comfort. And, He holds my hand.

It’s been four months since my dad experienced a massive stroke. I’d like to say that things are back to normal, but real life isn’t a fairytale. Sometimes you have to walk through hell before you can reach heaven. Right now, we’re in the “hell” part of the journey. I’m still hoping for a happy ending, but we’re not quite there yet.

I feel like a broken record every time someone asks about my father. I reply that progress is slow. It’s the truth. Honestly, I think most people really want to hear some type of quick-fix miracle recovery story. They aren’t too interested in hearing the hard truth, the stressful, heart-breaking saga that continues to drag on for months or sometimes years. The reality is that you can’t just bounce back from a massive brain injury, no matter how much you want it to happen. My father is fighting with every fiber in his body to recover, but his life–and my mom’s life–are on pause right now. It’s a weird state of limbo, not knowing when or if it will end. I know it’s terribly frustrating not only for us, but also for him — most of all for him.

The good news is that he has been making progress in outpatient therapy. Recently, I reminded my Dad that he couldn’t move his right leg. It’s been paralyzed since the stroke. He grabbed his right leg immediately with his left hand –to show me that he could use his hand to lift it. I acknowledged that he could move it using his left arm, but he couldn’t lift it unaided. I placed his left hand to the side and asked him to raise his right leg. He looked at me and promptly lifted it two inches off the floor! I was flabbergasted. With a look of shock on my face, I glanced at my Mom and asked if she’d ever seen him do that before. The look on her face displayed her answer before she gave an audible reply. It was the first time since the stroke that he had moved his leg on command. In the midst of all of the dark moments of the last few months, it was a small triumph.

We’ve also experienced a few small victories in speech and cognition over the last couple of weeks. My dad can’t speak or write yet, but sometimes words (and even phrases) will just pop out randomly. It may not seem like a big deal to those of you who are reading this, but trust me, it is. For four months, it’s been like trying to communicate with someone who is speaking a foreign language. I can’t fully articulate how sweet it is to comprehend even one word. Small victories, indeed.

My family’s journey through hell is full of bad days intermingled with some good ones. I hope that as we move forward, the mix will change, and we’ll see more good days in our future. Each baby step of progress is a victory, and my hope for recovery rests in a continuous series of small victories.

I believe that everything you face in life is supposed to teach you something. Sometimes you have the clarity of mind to understand the lesson you are learning while going through the experience. At other times, you don’t have a clue. I think I’ll look back someday on this situation and understand it more fully, but for now, I’ll just say that it’s taught me to appreciate life (and those who are important in my life) more. Don’t ever take your loved ones for granted:

…Savor each moment with them; it’s special.

…Don’t let the challenges in your life drag you down or tear you apart.

…Life is fleeting; take time to enjoy it.

…Don’t ever forget to tell people you love them; find a way to show them they are special.

Today marks eleven weeks since my father experienced a stroke. The ensuing days have been arduous, trying, and emotional for everyone involved. Each day seems to bring more questions than answers. Doctors and therapists refrain from offering a prognosis for the future. Because every brain responds differently, they simply don’t know “when” or “if” full recovery will occur. I’ve quickly learned that this is one of the most frustrating aspects to having a family member who has suffered a stroke. It’s a day-by-day battle that can stretch for weeks, months, and even years.

My Dad is still paralyzed on his right side and is unable to communicate anything more than a “yes” or “no.” The good news is that he started an intensive outpatient therapy program on June 4th. We’re hoping to see more progress with this program which is designed specifically for people with neurological injuries. He receives therapy five days a week from 9 am - 3 pm and has weekends off.

We had our first family meeting with the new doctors and therapists today. It was our opportunity to hear their initial assessments and ask questions about the therapy he’s receiving. The meeting consisted of a case manager, two physical therapists, occupational therapist, speech therapist, doctor, and psychotherapist. Each one went down the line and gave their report. I wasn’t surprised by any of the information they shared. Much of it we already knew — after all, we’ve been experiencing this for 11 weeks whereas they are just getting to know my Dad.

I did feel that they had a good grasp of his condition, understood his gaps, and had a plan to work on those areas. Was it the information I wanted? No, I want someone to say that they can heal him, and he’ll be fine in a few months. Of course, that never happens. Not that I expect it, but there’s always a small part of me that secretly hopes to hear it anyway. Only the future will tell the full story. I just have to be patient, allow God do His work, and let the therapists do the jobs they are trained to do.

There are some small improvements, though. I guess you would call them baby steps, but like the quote on my blog says, I’m thankful for the little things because one day I may look back and realize they were the big things. Each baby steps brings him closer to regaining what the stroke took away. And for today, that’s enough.

They say patience is a virtue. I guess it’s a virtue I need to develop more because I have so little of it. My life is spent trying to be as efficient as possible so I can get more done in a day. It’s a matter of “hurry up and do more” and then more and more — as fast as you can. I have very little time to stop and wait for things to happen. I make things happen. I am impatient.

Maybe that’s one of the reasons why it’s so frustrating to watch the stroke recovery process with my Dad. Recovery is not fast. It’s not a simple fix, not something that will be over in a day, a week, or a month. It is long-term and painfully slow. It requires lots of patience.

I would do anything to change our current situation. Oh, how I wish things were different, but it can’t be reversed. That’s something I have to accept now — regardless of how difficult it is. The only thing I can do is look to the future and pray for a full recovery.

Each day I go to the hospital hoping for a small sign, some tiny indication of progress. Some days I get it; on other days, I don’t. I try not to be discouraged. Everything I read about recovery tells me that it takes time. The trusted team of therapists, doctors, and experts reinforce that fact. I’m not looking for a miracle (although one would be nice), but I wish the process was faster. I wish desperately that they could tell us when (and if) things will start working again. They can’t.

The brain must re-learn how to process speech. It has to figure out a new way to control now useless limbs that were once controlled by the area damaged by the stroke. It wasn’t a fast process the first time he learned language and other skills, so it makes sense that it would take a good amount of time now. It doesn’t mean I have to like it, though. I’m impatient. I want more.

Watching someone you love dearly go through a stroke is something I wouldn’t wish on anyone. Few things in life are worse. You can’t imagine the pain and the helplessness you feel as a caregiver. It’s frustrating. It’s emotional. And, once again, it requires an enormous amount of patience.

Maybe it’s one of the valuable lessons I’ll learn as I go through this process. When my Dad recovers, maybe he’ll open his eyes to find a more patient, more compassionate daughter at his side. It won’t be easy, but I’ll fight to have patience while he fights to regain his life. I know he can do it and so will I.

It happens in a blink. One moment you are living your life, and before you know it, something happens that completely changes it forever. During his sermon on Sunday, my pastor compared it to playing with a familiar children’s toy, the Jack-in-the-Box. You know the game. You turn the crank, enjoy the rhythm of the music, and then all of a sudden, the “Jack” pops out. It’s unexpected and sometimes shocking.

My “Jack-in-the-Box” moment occurred seven days ago. It started as a normal Wednesday. I worked from home in the morning, went into the office in the afternoon, and came home for dinner. After eating, I continued working on the slides for a presentation I was giving the following day. If I remember correctly, it was shortly after 8 pm when I received the phone call. It wasn’t your average call. It was one of those dreaded calls — the one you never want to get.

My father was being rushed to the hospital with a possible stroke. I jumped in the car and rushed to the emergency room. After various scans and tests, the doctors confirmed that it was a stroke, and my mother authorized a course of treatment. I won’t go into all of the gory details about that night. At this time, I’m too emotional to relive those frightening moments, even though they will be forever etched in my memory.

The next seven days seem to blur together — an unsavory cocktail of stress, worry, fear, unstable emotions, and sleepless nights. During that time we had many ups and downs as my father’s condition evolved. The stroke occurred in the left side of his brain affecting his speech and leaving him without the ability to control the right side of his body. He’s always been fiercely independent and strong, so it was incredibly difficult to see what the stroke had stolen from him. Fortunately, many patients recover from this type of a stroke, and we remain hopeful that he will be able to regain these functions after extensive rehab.

Until then, our lives have been interrupted by this “Jack-in-the-Box” moment. We don’t know exactly what the future holds, and that’s frightening. All we know is that it will be a long and frustrating road to recovery.

We’re just now beginning to walk down this path, and my blog posts may be less frequent as I spend as much time as possible with my family. On those days when you come here and don’t see a new blog entry, please take the time you would have spent reading my blog to instead say a short prayer for us. We need as many as we can get right now as we journey through the next seven days and beyond.