Chapter 15: Bizarre Experience

I mentioned earlier that since the stroke, I get overwhelmed easily.  Sensory overload. But, I also continue to try to not give up on things I enjoy.  Keep on trying, right?               

This lead to an experience I won’t try again for a while.

Larry and Devin got tickets to go to see Brian Regan’s comedy concert.  Devin invited his girlfriend, Lisa, and Larry wanted me to go.  I really wanted to go, too.  I enjoy Brian Regan, who doesn’t?  He’s hilarious and no potty mouth.  And I wanted to spend time with my family.

I decided that I wanted to give it a try.  It wasn’t music.  It wasn’t spiritual.  It wasn’t going to be deeply touching.  I kept telling myself that humor would be different.

Right off, it was overwhelming…big concert hall, lots of people.  But, I had considered this.  I waited in the hallway, away from the crowds, until the performance began.  When the lights dimmed and the warm-up act was introduced, I slipped in.

The opening comedian was good and I chuckled and smiled.  I started to relax.  Then Brian came on.  He was hysterical!  Everyone laughed and laughed, including me.

But here is where the bizarre came in…I was laughing and sobbing AT THE SAME TIME!  Who knew you could do that? The more I laughed, the harder I bawled.  I soon was very grateful that everyone was laughing so much, so they couldn’t hear me.

There was one girl sitting on the other side of Larry who noticed what was happening.  I think she watched me almost as much as she watched Brian.  Two entertainers at one time!

I didn’t leave.  I didn’t want the family to not enjoy their experience.  And finally I got to the point that I was so exhausted, that my body just shut down.  I felt a little catatonic.  It was time for my body to sleep and re-boot.

So, now I know, loud laughter is not my friend. Humor and strokes make for an odd mix.

Chapter 14: Sleep and Then Sleep Some More

After having my stroke, I was told the best healer for a stroke was sleep.  They told me to sleep often.  This in my opinion felt more like giving approval to sleep tons because I sure wasn’t struggling to get to sleep. 

Those first few weeks, make that months, after my stroke I was asleep more than I was awake.  Slowly it tapered off to a long afternoon nap and a very long night’s sleep.

I thought by now I would not need a nap, but no.  I am still napping, still sleeping the night away.  

I don’t know if this means my brain is still healing…I hope!   
But if I don’t get my sleep, I am in more pain.  I get overwhelmed easier.  I cry more. I'm no fun to be around.  I don't even want to be around me.

So I guess I just keep sleeping.  Just call me Sleeping Beauty. :-)

Chapter 13: The Stroke Diet

I may not be as active since my stroke, but with my new stroke diet I am staying slim.

My sense of smell and taste has been tweaked.  It is now slightly off.  

I can no longer trust my sense of smell.  I sometimes think something smells sour or spoiled.  At first, I used to throw those things away.  But one time I had something that I thought smelled burnt and Larry walks up to me as I’m taking it out of the oven and tells me that it smells delicious.  Delicious?  Really?

That got me to thinking that maybe it’s me, not the food.  So I often let my family decide if something is spoiled.  But, if it smells bad to me, I’m not going to eat it.

My taste has changed too!  So many foods no longer taste good to me.  My body is definitely better off for it; most of the foods that I don’t like anymore are not really good for me anyway.  I miss having those yummies.  But, why eat fattening food if it tastes gross?

For example, I used to love French fries.  The first time I had a French fry after my stroke was supposed to be a treat for me.  I took a bite, with a smile on my face and was shocked to realize it tasted horrible! 

I still remember loving French fries.  They still look delicious, so I’ll have one every now and then hoping... and, yuck!  Nasty!  Sadness!  I miss my French fries.

Another feature of this diet is poor memory.  I struggle to follow the directions I read.  If I get interrupted, that’s it.  Did I put in the salt?  Did I add all the sugar?  I can’t tell.  It’s all white!  I can’t remember what I just did.  Frustrating.  I find myself bursting into tears and give up. 

So are there any cookies in our house?  Brownies?  Very rarely.  

I can still make main dishes.  You just look at your pan and see, “Oh, I forgot the carrots.”  It’s really hard to figure out what is missing when it’s all white stuff.

I do still try from time to time.  I had an assignment to bring a dessert for a family gathering.  So I focused, kept my finger on the recipe, and made them when no one was home.  No distractions.

I took them to the dinner with my fingers crossed.  I tried one and thought, “Darn it, not very good.  I must have done something wrong.”  But Larry tried them and told me they were good.  I guess he was right.  They got all gobbled up!

So there you have it.  My new diet.  All you have to do is have a stroke or some other brain injury, find that food no longer smells or tastes good and that cooking desserts is not that fun.

Chapter 12: Blessings

I think with any challenge or trial in our lives that it is important to look for the good things that are happening.  No time in life is a complete disaster.  Though I admit that there have times that it has been hard for me to find the good.  I've had to look a little harder and pray more often to find the Lord's blessings in my challenges.

But I know He is always there.  I know that there are always blessings and tender mercies extended my way if I just look for them and recognize them.
I have had a few health improvements from my stroke.  Yes, it’s true, I have had some positive in the health area too.

I used to struggle with some sciatica pain on my left side.  After my stroke, my left side has been pretty numb.  So, no more sciatica pain!  After two years, unfortunately the sciatica pain is coming back.  But, that means my left side is awakening again.  So it's all good.

Another wonderful blessing has been the end of my migraines!  I used to get a severe migraine headache once a month.  Yes, it was at that time of month.  I guess in a way I was blessed because I knew exactly when it was coming, so I never planned anything on that day.  But, I am very grateful that I no longer have them.  

I don't know if the migraines were a symptom or warning sign of my stroke.  The doctors never indicated this was the case.  I don't know if the migraines started from the sensory part of my brain or from my left side.  But, whatever the reason, this is a wonderful thing.  I am so grateful that my migraines are gone.

I am grateful for the blessings I continue to receive as I go through this new life.  I am continually looking for the Lord’s hand in my life.  I know He blesses me more than I often recognize.

Chapter 11: Challenges

Whew, big sigh.  This chapter has been hard for me to put into words.

I would say that I have two main challenges since my stroke.  I have lots of issues that I am learning to deal with, but those are like pesky insects in comparison to my large burdensome elephant challenges.

So, in this chapter, here’s the first:  I cry a lot!  I don’t just cry; I don’t just have tears rolling down my cheeks. I sob. My body shakes and it’s noisy! 

If something is overwhelming, I cry. 

As I mentioned before, the stroke happened in the sensory part of my brain.  So if I have any kind of sensory overload, I cry.  Too many people, too much noise, too much chaos, too much touch, too much emotion, you name it; I can’t handle it. 

(I guess I am grateful that I don’t react with some other emotion like uncontrollable laughter or intense rages.)

Anyway, this means things that many of the things I love most I now struggle doing.

Swimming.  I love to swim.  I’ve begged Larry for a pool for years!  Now, I try getting in the pool and start to cry!  Ridiculous!  Too much water surrounding me, touching me and I don’t know how to cope.

Music.  I used to use music to exercise with, do my chores to, lift my spirits, and touch my soul.  Now music becomes painful.  It still touches me, but it also overwhelms me.  We have season tickets to the Broadway musicals at the Capital Theater in SLC.  After a couple of attempts, I have had to give them up….for now.  I am too distracting for those around me trying to enjoy the show.  And unfortunately I ruin it for Larry too.

Church.  Now that’s a big one.  I need the Spirit of Lord with me to help me deal with my new life.  Even though I cry every week, this is one I will not give up.  With Larry’s (usually appreciated) motivation, every week I go to church—full of anxiety.

Many of the people in my ward must wonder what my problem is. It seems like so much going on, people visiting, organ music playing! I’m on the verge of tears by the time I walk into the chapel and as soon as I feel the spirit—waterworks. And I won’t shut myself off from feeling the spirit; what’s the purpose in going otherwise?

I sometimes cry myself dry by the end of the meeting. I hope the congregation doesn’t think I’m upset at Larry or something! Right now I’m only making it to sacrament meeting. I’m still trying to build up the courage and strength to go to the rest of my Sunday meetings but so far it’s more than I can take. The crying exhausts me! But, I know I’ll get there in time.

I also have anxiety now.  I struggle to do even the smallest things. 

Leaving my house to go to the Post Office and mail Kyle a package is a BIG deal.  I end up sending it weeks after it is ready to mail.

Reaching out to people is a BIG deal.

Coping with spur of the moment issues, which is just a part of everyday life, is now a BIG deal.  “Mom, I need…” And I break down and cry.  My brain can’t deal, can’t process how to respond, so I just cry.

I was a very independent woman before this.  I think part of this challenge is for me to learn to rely on others.  I am also much more sympathetic with anyone who struggles with fears.  I’ve learned lots of things can feel scary.

I am pushing myself to leave my house and if I cry, I cry.  This is who I am now.  Hopefully not for the rest of my life, but I need to deal with it in case it is.  I’ve gotten to the point where I am not really embarrassed by my crying anymore.  But I also don’t want to draw attention away from whatever should be the focus.

Please know that I may not always reach out to you because I’m just trying so hard to keep it together and not cry.  But, I really want to keep my friendships. You are all important to me.

Part of sharing all this is so you understand.  Where is Cathy?  Why isn’t she going to church, to wedding receptions, etc?

What can you do for me or for your friend or family member who had a stroke?  Don’t feel awkward about reaching out.  I really appreciate a “Hi.”  A squeeze on the arm or a pat on the shoulder helps.  Don’t feel you have to do it all the time, just every now and then.  It’s a great emotional boost.

Thanks for listening, for understanding…it makes the journey easier.

Chapter 10: Quirks

I thought I'd start out with a little humor.

Who knew what odd things would happen to you when you have a stroke?  Your body gets so many wrong signals from your brain.  Can you re-train that?  I don't know.  So far, not happening for me.

I joke and tell my brain, "No, this is wrong."  "Hey, up there, reboot!"  Mostly I have accepted, adapted, resigned myself to some odd quirks.

First quirk, I drool.
Drooling is for dogs, not people!  Luckily I am aware that I am creating more saliva.
So, I swallow more when I'm awake.  I only drool at night when I'm asleep.
Little pools of moisture all over your pillow the next day?  Not so attractive.
Lots of pillow case washing.

I found this very helpful at Christmas card time.  Licking envelopes?  Licking stamps?  No problem for me.  Never once got cotton mouth.  Now isn't that something to be proud of?

I finally went to the dentist about a year after my stroke.  For several months, when I was living in my fog, I didn't always remember to brush my teeth.  I know, gross.  Anyway, I didn't have any cavities!
I was very surprised.  My dentist told me saliva helps break down plaque.  So my saliva is good for some things. ;-)

I suspect I am just creating more saliva out of my left salivary gland.  I'm not sure; I haven't tested it.  But I do have supporting evidence...

My left eye often waters.  My left nostril is frequently flowing.  Yes, my left side must think I am all dried up!

So, if you need help with your mail, let me know.

Part 2: My New Reality

Chapter 9:  All Better?

“You’re all better now, right?” 

That question always takes me by surprise.  How should I answer that?  Uh…no?

I suspect people want me to say yes.   I know I look all better.  But, I’m far from all better in many ways.  To me, this is an awkward question.

I am grateful that I look like I’m back to normal.  I am grateful that I don’t slur my words or limp or use a walker.  I have come so far and I am blessed that my stroke didn’t leave me in a wheelchair or unable to communicate as it does with so many. But, strangely, sometimes I wish my injury were a little more visible.

When you are in a cast or have a bandage wrapped around your head, people can see that you have an injury.  It’s obvious.  And you are treated accordingly.  I have a hole in my brain that will always be there.  I can just imagine if the hole were visible… everyone would know that I have a problem.  But, that would be really disgusting.  I am VERY grateful you all can’t see my injury.  

That leaves me with sharing my struggles with those who really want to know and coming to accept the fact that most people will just assume I’m all better.

I mostly get asked, “How are you doing?” 

I have learned how to respond to that.  “Fine.”  “Plugging along.”  “Getting better.  Slowly, but surely.” 

I so appreciate being asked.  To me you are saying, “I still care.  I am aware that you are still struggling.”  But, I know you don’t really want me to bring out my long list of ailments.

This is a bit of a lonely journey.  I got tons of support at the beginning and then life moved on.  We like the idea that when we get hurt, we get better.  We heal. 

With a stroke, or any brain injury you often can’t ever completely heal. This was one of my hardest challenges of the stroke; I had to accept that I might never be the Cathy I was two years ago.  But, I am continually working to improve what I can.  And I am learning coping strategies with the things that look like I may have to deal with the rest of my life.

Part two of this story is for those of you that really do want to know my long list of ailments.  Thanks so much for those who have asked to continue with my story.  Or perhaps you are dealing with a stroke and maybe some of this will resonate with you.  Or maybe this will give a glimpse of how to deal with someone who is dealing with a stroke.  Or maybe you are just curious.  In any case, here we go.