Chapter 8: Blame It On the Brain

I had a hemorrhagic stroke, or as I refer to it, a brain bleed. A vein in my brain ruptured and started to bleed out in my brain. This causes a lot of damage to the brain. And logically, the more you bleed the more damage that happens. I’m told that mine was a moderate bleed.

Looking at the scan, it looked like the size of the bleed was about the width of a quarter. Sometimes I think that’s not too big, not too bad, it could have been worse. Other times, I think, Wow! That was a big chunk of brain I lost.

I had several scans and MRIs throughout this process watching and hoping for the bleeding to stop growing and start diminishing. I was very blessed with this too; the bleeding stopped increasing after the first day.

Then, the therapy started and we focused on my healing, while we waited for the blood to be absorbed into the brain. The doctors needed a picture without the blood blocking the view to see the full damage and if there were more weak veins to be concerned about.

When I looked the pictures of the first scans, I saw a shiny white spot. This was the blood on the brain. When I finally saw my last picture, I saw a big black spot.

I looked at the doctor and said, “This looks like a big hole.” He told me it was a hole. Larry and I looked at each other, and then Larry asked, “Will this get smaller through time?” Unfortunately, no.

Apparently, when blood touches brain, it kills the brain. They had told me that blood kills brain tissue before, but I guess it hadn’t really registered what that meant. It doesn’t just mean I hurt my brain. I have a HOLE in my brain! Literally.

The brain is an amazing thing. I have really come to appreciate my brain. There is SO much that I can and have retrained. New pathways have made connections and I can teach my body to walk again, to move my arm again. I really am awed at all we can learn and relearn.

There are some things that can’t be relearned.

Some memories are gone. Every now and then Larry or one of the kids will bring up a memory that I have no recollection of, none. Usually with memories, a person can tell you things you did, said, experienced and at least a vague memory will come back. You say something like, “Oh, yeah.” or “That sounds familiar.” I do have those, but I also have complete blanks…nothing. Memories and experiences can’t be retrained; they are just gone like I never did those things.

I also struggle with words. The right word eludes me. I feel like I should know this word, but can’t find it. Or I say the wrong word and don’t even realize it. Here’s a couple of examples.

Tiffany calls me on Skype and I want to see the grandbabies. Sadly, they have already gone to bed. I tell her, “You’ll have to reschedule their birthdays so I can see them next time.” Tiffany pauses and says, “Bedtimes?” “What did I say?” Well, they both started with a b.

Another time, I was visiting with a friend and telling I was looking for to Crocodile time. She looked at me really weirdly. You could tell she was trying to figure out what I talking about. Then, she started to chuckle and said, “Christmas time?” “Yes, what did I say?” I don’t even realize I am saying the wrong words! But, after she explained, I had to laugh with her. Crocodile was ridiculous!

I have friends tell me that they do this too. But, I do it all the time now. I feel stupid! No, I feel like I am less. I have lost knowledge that I used to have. I literally can feel that there are things missing. It wasn’t a gradual loss and change that you have as you get older. I’ve felt that in the past and there is a definite difference. It’s a scary feeling, a sad loss.

I don’t want you to think that all I do now is have a pity party! It would be easy to fall into a major funk and I would be lying if I didn’t say I feel those funks from time to time. But, mostly I try to stay focused forward and try to find a light side to life.

So, when I say the wrong word or struggle to say a word that just will not come, I stop and say, “Stroke brain” and smile. My kids having taken to saying, “That’s just Momma’s stroke brain” when they can tell I am feeling down on myself. I am learning to laugh at myself. Another blessing.

When I do stupid things, I now just say, “Blame it on the brain.”

Chapter 7: Family

I can’t mention enough all the love and support I received from friends and family. It was awesome and very humbling. Thank you, thank you!

I have learned during this journey, that my stroke was a huge adjustment and challenge for the whole family. This is not just my trial.

So many people reached out to me, asking me how I’m doing. But, I think we often forget the loved ones who are coping with this “whammy” in their lives too.

I was not myself for a long time. I’m still trying to “find” Cathy in many aspects of my life. And I’ve come to accept that some things will never be the same.

As I mentioned previously, a stroke is not just about physical damage; it’s also emotional and memory damage. This affected the way I interact with people. For many months, I was really mentally disconnected from my life, my family, and my emotions. My only real emotional response was crying. I either cried or was almost emotion-less.

Honestly, the crying is an improvement of sorts. If you know me well, you know I am a worrier. Larry calls me a professional worrier. After the stroke, I didn’t worry…about anything. I remembered enough about me that I knew that I should care about some things, but I really didn’t.

Dinner for the family? Laundry? Dishes? Homework? House cleaning? Emotional support for my husband and boys? Someone will take care of all of it. Or nobody will. These responsibilities that were my life a few days ago, were no longer there for me. All of these things just didn’t even occur to me.

Looking back it sounds so cold! How could I have been so selfish? It didn’t feel that way at the time though. I felt like I was watching the world through the wrong end of a telescope and was completely disconnected. It was all happening “out there” and wasn’t really part of my life.

Needless to say this was a hard adjustment for all of us. I scared everyone with my near-death experience. And now mom/Cathy is back, but not the mom/Cathy they knew.

Tiffany asked her Dad when do we get our mom back? Sometimes Larry still wonders out loud if I’ll ever fully return. Honestly, I wonder too.

Larry later compared dealing with a stroke to the stages of mourning. We’re long past denial now, mostly into the acceptance phase, but sometimes a little frustration still pops up in our lives. We miss what we’ve lost.

When I first had my stroke, Larry was scared and stressed. Then, he was so caring and by my side 24/7. As my physical drooping and speech disappeared quickly, he hoped that the rest would heal quickly too. Larry soon went into fix-it mode. He was my cheerleader and great supporter as I went through therapy.

Unfortunately, this isn’t a quick fix. And his support often felt like pressure to me and I would get frustrated and, yes you guessed it, cry. He in turn felt like I wasn’t trying enough. We had to turn to the therapists and the psychologist often for counsel. Often it was not what he wanted OR what I felt, but a little bit of both.

Larry’s need to get it fixed ASAP is gone. I feel like we are a team working through all these challenges together. We both want me to continue to heal; but we both realize what we thought was healing (all better) and what is actually healing (steadily moving forward) is a better fit for dealing with a stroke. We still have our bumps, but that’s life; what couple doesn’t?

I appreciate those who reached out to Larry, who asked how he was doing. Sometimes I wonder whether he or I experienced the deepest loss. We have always been very close, affectionate, best friends as well as companions in raising a family.

Since the stroke I find it difficult to be as affectionate—I just don’t “feel” the way I used to feel. I don’t want to do many of the things Larry and I used to do together—crowds, noises, risks, feelings make me cry. He isn’t sure who he will find when he returns home from work every day now—a fragile, crying woman, a disconnected woman, or a wife who is happy to see him return. It changes from day to day. I need more from Larry than ever before in our lives and I probably return less. We’re still struggling to find our footing in this changed life.

Larry read this before I posted it and wanted me to add that there are also tender mercies in all we’ve been through. We’ve discovered how much love and support we have. We’ve discovered even greater depth in our commitment to each other. And Larry says I’ve become kinder, more thoughtful and more patient. He says I’m more beautiful too but I think he’s been fibbing about that for years.

Thank you, hubby. I do love you more than I can say.

I now see people’s struggles and illnesses as family challenges. We all struggle together, and we all grow together. Thank goodness for families. And family…Thank you for your patience.

One Year

One year ago today, I had a hemorrhagic stroke.

Larry asked me, "Who celebrates a tragedy?"

I'm not really celebrating. But, I did find that I kept thinking about it, a lot!

I guess, it was one of those subconscious thoughts that we don't always give voice to. I thought I would be all better by now.

I have been working hard on getting better. I have improved so much! But, I haven't really come to terms with the idea that some things have changed forever. I kept thinking I would eventually be "back."

I am NOT saying that I am giving up. But, I am saying that some things will never be the same; and some things are going to take a much longer time than we thought.

I know I should be celebrating how far I've come today. Instead, I find myself crying. I think I am finally mourning and really accepting that the "old Cathy" is gone.

As the day ends and I have cried myself dry, I am thinking that maybe this mourning was a good thing. I think I am ready to face my "new" me and accept me.

I have come a long way. I am learning so much from this journey. And the new me is okay.

So on with the journey. I will post again tomorrow with Chapter 7.

Chapter 6: Emotional Rescue

I really didn’t know much about strokes before I had one. I knew they could be deadly and I knew that they messed you up physically. I didn’t know they mess you up emotionally.

After going to physical therapy for a few weeks, my therapists recommended that I see the Rehab Center’s psychologist that works with stroke victims.

This recommendation may have had something to do with me crying almost ALL the time. When things felt scary or difficult, I cried. When I walked for too long, I cried. When I got tired, I cried. When things were overwhelming, I cried. When I was frustrated with all my crying, I cried.

One day while working with the therapist, Shane, suggested we try the elliptical machine. I really was nervous, but wanted to try. We went over to the area of the hospital that had these new state-of-the-art machines. A good friend was in charge of this area. He met us and visited with us while leading us over to the machine. Unfortunately for him, he got a trapped. The machine was against a wall; he ended up between the wall, the machines, and my therapist. So, he got to watch me try the machine. I didn't even do one rotation and I started to cry. It took me by surprise. The feeling of being unbalanced overwhelmed my brain. And really, before I understood what I was feeling, I was crying...hard. Sorry Brent.

So because of this event and many others, they suggested that I might be interested in talking to someone about my stroke. Really?!

There is someone who specializes in talking with stroke victims about how to deal with this? And it’s not recommended at the beginning of your recovery when all the other therapies are prescribed?

They were very careful to make sure I was not offended by the suggestion. Just that this might help me. And here I’ve been talking to my speech therapist (Thank you, Paul) because I desperately needed, wanted information.

How do you deal with a stroke emotionally? How do you cope? Physical restoration is in progress. But, not emotional. This is a huge challenge! And I felt like I was getting few answers. Then, I find out that there is help for this part too. Why don’t they offer this to every stroke victim right off the bat?

“No two strokes are alike.” I heard variations of this statement from Day 1. I realize that many of my challenges are my challenges alone. But, there are many challenges that other stroke sufferers have too.

(Part of why I am writing this is to tell others who are dealing with a stroke themselves or with a loved one….you are not alone. I am dealing with this thing and that; and you may be dealing with some of these too. I mentioned crying a lot on Facebook and got back a few responses like this: “I remember my Dad cried a lot after his stroke. And he doesn’t usually cry much.”)

I would often say something to my neurologist about what I am dealing with. THEN, he would tell me why. For example,

“Doctor. I am crying all the time. Some people say I might be dealing with depression, but I don’t feel depressed…just emotional.”

“Mrs. Macfarlane, I am not surprised that you are emotional. The brain bleed was in the sensory part of your brain.”

Wouldn’t it been helpful to be told that I might be more emotional because of the location of my stroke? I often thought, “Why wasn’t I told this before?”

Many times Larry would ask questions (because my brain was still foggy, and I would forget. He would ask, and I’d think…oh yeah, I was wondering about that.) Anyway, we would ask a question and be told, “No two strokes are the same, but this is often a result from a stroke.” Why wasn’t I given more info on what I might be dealing with? Are they worried about legal ramifications? I don’t know the reasoning. But, it was frustrating not knowing if what I am dealing with is stroke or me dealing with the stroke.

So, YAY!! I got to go to a psychologist. It was so nice knowing that most of what I was dealing with was stroke. And then, how do I deal with this? I learned that some things I could fix right away. But most were going to be a process. But, I had someone who would talk to me. This was huge for me. Now I was on the road to recovery physically and emotionally. I've found it's a long road.

Chapter 5: Therapy

Before I left the hospital, I was given three choices.

Option one: I could stay at the hospital. Initially, I wanted to stay. Then I got all the lovely details. If I stayed, I would be moved to the “rehab” area of the hospital and have lots of therapy--not too bad. But if I stayed, I would have to stay for at least 10 more days--the most intensive part of the therapy I needed. I wanted to stay until I felt better, but not that long! I passed on option one.

Option two: Go home and have a therapist come to my home. This sounded pretty good! Then again, there was fine print: in order to have a therapist come to your home, you must be homebound. Okay, I’m not going anywhere. My home and my bed, especially my bed were beckoning. But homebound means you can’t go anywhere! (except to the doctors.) I couldn’t have Larry take me on a drive. I couldn’t go outdoors. I couldn’t leave my home, period. I didn’t really think I would go anywhere, but I didn’t like that I couldn’t either. Call me a control freak but I passed on option two.

Option three: Go home and have someone bring me back to the hospital for therapy 2-3 times a week. I chose door number three.

Therapy sounded promising, hopeful and not too difficult, really. Boy, was I ever wrong.

Physical Therapy

This is where I learned to walk again. I started trying by using a walker. It turns out that stroke recovery is completely different than recovering from a physical injury. The main difference I learned was NOT to push through the pain. I would walk around the house with the walker and do a few loops. My foot would start to drag and I would tell myself, you can do one more. I found out this was a big no-no!

I wasn’t teaching my leg to walk. I was re-training my brain. If I taught my brain that dragging my foot was the way to walk, then I would always walk with a limp. I was taught to only walk as far as I could do it correctly. As soon as I perceived that I was struggling to do something correctly I was supposed to stop and rest. That turned out to be only a little therapy and a lot of napping at first.

There are many ways to learn to walk again. For me the one that clicked was walking on a treadmill. It was very scary and too fast at first--at least in my mind. But, the rhythm of it helped me walk steadily without limping. I started out ridiculously slow and I tired out after just two minutes of walking. But, I was walking!

The next physical therapy was learning to climb stairs. My fun lesson here was, “The good go to heaven and the bad go to hell.” So I go up leading with the good leg and I go down leading with the bad leg. It was a great way to remember. I still think of it when I use stairs now. :-)

Occupational Therapy

Where physical therapy was all about large muscle movements like walking and climbing stairs, occupational therapy was about the little stuff. This was to help me use my arm and more importantly my hand again. They have all sorts of tools and exercises to help regain fine motor skills. It was also helpful in stopping the “claw.” My hand wanted to curl up into a claw and then curl up protectively against my chest. (A year later it still wants to do this.) They also tested my grip strength. I could grip 40 lbs. in my right hand and 2 in my left! I had my work cut out for me.

There were all sorts of creative exercises for me. Most involved very interesting props and tools--many of which were made by boy scouts as Eagle Projects which I thought was a wonderful idea. They included: put the pegs in the right holes, drop the washers onto the dowels, pick the beads out of the therapy putty, etc. Sounds fun, huh? It was torture! These little tasks were unbelievably difficult. Lifting a small metal washer off a peg and placing it on another one would take 30 seconds of intense concentration and slow, trembling movements—only to drop the washer and have to start over. Little by little, over many weeks, I got better and faster at these movements. My coordination, strength and endurance started improving.

My favorite exercises were learning how to do everyday skills again. They had all the things you use at home, like a hair dryer and toothbrush and toothpaste, at the rehab center! I re-learned how to blow dry my hair—nearly impossible. I re-learned to brush my teeth, shake out a piece of laundry, fold a towel. Simple, right? Hardly. When your left arm doesn’t want to cooperate, these are an incredible challenge. Imagine trying to get your one year old to fold socks. That’s about how much coordination I had. I was thrilled when I could finally lift my arm up to my head. Then, I had to be able to keep that arm up!

Speech Therapy

For many stroke victims speech therapy is the hardest part of recovery. For me, because of the part of my brain that was damaged, speech wasn’t a huge problem. Thinking was another matter so for me this was more “cognitive therapy.” I struggled to think and have words come to mind. After a battery of tests, my therapist Paul knew where my weaknesses were.

Here I had to read books out loud. This was to help with inflection. Apparently I spoke in a bit of a monotone now. No emotion.

I was also given exercises for swallowing. The left side of my throat wouldn’t always close and I would end up choking.

I was given challenges to try and multi-task. That was hard! I could barely come up with one thing to do, let alone try to do two!

Paul was also a long-time friend. So I admit, I shared a lot of my worries and questions with him. He was great about listening and finding answers for me, if he didn’t know.

Recovery

Larry was super supportive and took me to therapy for weeks, leaving work and cancelling trips to be there for me. Eventually I felt emotionally up to letting someone drive me. And after a few months I felt up to doing the exercises on my own, at home.

I was so blessed. After lots of work I could start to see a light at the far end of a long tunnel. I felt I was eventually going to get my life back—or at least something close to what it was before.

Story of My Stroke Continues

Sorry it took so long for this post. I took Christmas off. And then it was hard to get going again.

Chapter 4: Learning My New Life

I’m home! Now what?

It was scary to be home. Last time I was there, I was alone and scared. Now, my family was all around me and I was still scared. I didn’t want to think about what happened here a few days ago, and I didn’t want to think about what would come next.

There were some wonderful things waiting for me at home. First my boys were all there ready to welcome me home. My boys can be so awesome! As I've said before, family is everything.

And then there were the flowers! Flowers, flowers, and more flowers! I love flowers!

Some of them were the most beautiful flowers I’d ever seen--and they were all around me!

My house was filled with messages of love, concern and sympathy. It really helped me feel stronger and comforted. I honestly can’t remember ever feeling so loved and supported beyond my own family.

Friends and neighbors began to drop by with meals, gifts and just lots of hugs and caring. These too helped keep the fears and worries at bay. They helped me stayed grounded and focus on today.

Larry arranged to have our daughter, Tiffany, fly out for a week and stay with me. That was HUGE. I really felt like a lost child in many ways. Having Tiffany there helped, but I admit it was a little weird relying on her so much…the first reversal of roles I’d experienced. I just wish she could have stayed longer.

I cried when she left. But, I'm always crying now.

My wonderful sisters came and cleaned my home, washed my sheets, kept my home a home for many weeks. That was HUGE too. Everything I had done before--all my roles in life--I couldn’t do. Taking care of my husband, children and home were all beyond me.

I’m overwhelmed and honored to have such wonderful friends and family. Thanks everyone. I love you.

I slept a lot--a lot! Those first few weeks, months really, I think I may have slept as much as I was awake. Sleep is very healing for the brain. It’s amazing that our bodies just know what to do to heal. My body demanded tons of sleep.

When I was awake, I had no strength and no real use of my left side. It’s weird that you can be in good shape and, whammy! Something happens and all that strength seems to be gone.

It was very difficult not being independent. I wanted to help all the helpers but physically I just couldn’t do it. I would get exhausted just trying to walk, get dressed for the day, or take a shower. I would do one thing like get dressed, then nap. Do some therapy, then nap. This was draining not just physically, but mentally--especially mentally. I would have a harder time thinking what I should be doing next if I did too much…where are my socks? What was I putting on? Why am I out of bed? Why am I standing by the toilet? Yes, really that one happened.

What a crazy new reality.