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.

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.