On being afraid

If there is one overwhelming and pervasive fear that rules my dreams at night or during the day or right this minute it is that the possibility of my sons experiencing a stroke is increased by my flawed genetic make-up . I know how they think and deal and react and would hate for any of them to have to be in this disassociated state, unsure of who they are and how they feel .  I know they are strong enough to conquer the physical roadblocks but the mental ones are so , so hard and so daunting .  Every day I yearn to be who my wife and children need me to be even though it is  becoming harder to remember some days who that really was , I still feel the deep love and commitment for them that I always did but I worry about seeming to be an imposter to them .  It is becoming harder to act like Phil , when it seems like an eternity since he has been around.  Learning to be afraid is like learning you are lost , you dont know where you are or how long you will be there but you are painfully aware that you are lost. Eentually if Phil then and Phil now ever meet up there will be some interesting stories to be told of lost journeys in a dark and unfamiliar place . I so wonder where I have gotten to and will keep trudging along with the search party for a while longer.

Lost in stroke land

I am not the same guy that lay down to sleep on july 28th 2014 ; he was confident , fresh from the battle of a  stress filled work day and was very comfortable in his own skin . I awoke to numbness and panic and the knowledge that I was in dangerous territory . I woke my wife and headed to the e.r in a cab and walked into the hospital ;  I  awoke again in a different city with my family gathered around and I was someone else ; the confident warrior had packed his bags and I was alone in a body that was broken and alien ;  it didnt feel the same and the places that I drew on for strength , emotion and stamina were not where I'd left them . I no longer felt like the old me , someone had broken into the place where I'd lived for over 50 years and had stolen all of my stuff , my brain , that traitorous thing had let itself be hijacked , I was sending signals out and they were not getting through . I understand why  my left side stopped working but not why the right side felt so different , why the commands I was sending out were being interupted , sure the right was moving the way it should but it didnt feel the way it always had, my sensations and emotions were no longer in my control , where I would once have dropped something and gotten mad I now cried uncontrollably and had no say over it tension became something I breathed like air , I tasted and felt in my veins , where I once fuelled my determination with anxiety I now cowered in its presence.  I have become intensely aware of fear lately.and throughout this storm of emotion and terror stood the anchor of my former self , my beautiful partner , no stranger to this kind of fear herself , treating me each and every moment of each interminably long day like the familiar old guy she married all those years ago , this is the single greatest gift I have ever received.

Great Read on Dealing with a Stroke Survivor

http://www.brainline.org/content/2011/07/lost-found-what-brain-injury-survivors-want-you-to-know.html

Lost & Found: What Brain Injury Survivors Want You to Know

Comments [353]

Barbara J. Webster, Lash & Associates

I need a lot more rest than I used to. I’m not being lazy. I get physical fatigue as well as a “brain fatigue.” It is very difficult and tiring for my brain to think, process, and organize. Fatiguemakes it even harder to think.

My stamina fluctuates, even though I may look good or “all better” on the outside. Cognition is a fragile function for a brain injury survivor. Some days are better than others. Pushing too hard usually leads to setbacks, sometimes to illness.

Brain injury rehabilitation takes a very long time; it is usually measured in years. It continues long after formal rehabilitation has ended. Please resist expecting me to be who I was, even though I look better.

I am not being difficult if I resist social situations. Crowds, confusion, and loud sounds quickly overload my brain, it doesn’t filter sounds as well as it used to. Limiting my exposure is a coping strategy, not a behavioral problem.

If there is more than one person talking, I may seem uninterested in theconversation. That is because I have trouble following all the different “lines” of discussion. It is exhausting to keep trying to piece it all together. I’m not dumb or rude; my brain is getting overloaded!

If we are talking and I tell you that I need to stop, I need to stop NOW! And it is not because I’m avoiding the subject, it’s just that I need time to process our discussion and “take a break” from all the thinking. Later I will be able to rejoin the conversation and really be present for the subject and for you.

Try to notice the circumstances if a behavior problem arises. “Behavior problems” are often an indication of my inability to cope with a specific situation and not amental health issue. I may be frustrated, in pain, overtired or there may be too muchconfusion or noise for my brain to filter.

Patience is the best gift you can give me. It allows me to work deliberately and at my own pace, allowing me to rebuild pathways in my brain. Rushing and multi-tasking inhibit cognition.

Please listen to me with patience. Try not to interrupt. Allow me to find my words and follow my thoughts. It will help me rebuild my language skills.

Please have patience with my memory. Know that not remembering does not mean that I don’t care.

Please don’t be condescending or talk to me like I am a child. I’m not stupid, my brain is injured and it doesn’t work as well as it used to. Try to think of me as if my brain were in a cast.

If I seem “rigid,” needing to do tasks the same way all the time; it is because I am retraining my brain. It’s like learning main roads before you can learn the shortcuts. Repeating tasks in the same sequence is a rehabilitation strategy.

If I seem “stuck,” my brain may be stuck in the processing of information. Coaching me, suggesting other options or asking what you can do to help may help me figure it out. Taking over and doing it for me will not be constructive and it will make me feel inadequate. (It may also be an indication that I need to take a break.)

You may not be able to help me do something if helping requires me to frequently interrupt what I am doing to give you directives. I work best on my own, one step at a time and at my own pace.

If I repeat actions, like checking to see if the doors are locked or the stove is turned off, it may seem like I have OCD — obsessive-compulsive disorder — but I may not. It may be that I am having trouble registering what I am doing in my brain. Repetitionsenhance memory. (It can also be a cue that I need to stop and rest.)

If I seem sensitive, it could be emotional lability as a result of the injury or it may be a reflection of the extraordinary effort it takes to do things now. Tasks that used to feel “automatic” and take minimal effort, now take much longer, require the implementation of numerous strategies and are huge accomplishments for me.

We need cheerleaders now, as we start over, just like children do when they are growing up. Please help me and encourage all efforts. Please don’t be negative or critical. I am doing the best I can.

Don’t confuse Hope for Denial. We are learning more and more about the amazing brain and there are remarkable stories about healing in the news every day. No one can know for certain what our potential is. We need Hope to be able to employ the many, many coping mechanisms, accommodations and strategies needed to navigate our new lives. Everything single thing in our lives is extraordinarily difficult for us now. It would be easy to give up without Hope.

Created with the assistance of the "Amazing" Brain Injury Survivor Support Group of Framingham, MA.

Excerpted from Lost & Found: A Survivor's Guide for Reconstructing Life After a Brain Injury by Barbara J. Webster. © 20ll by Lash & Associates Publishing/Training Inc. Used with permission. Click here for more information about the book.

Saturday, November 26, 2011

"Where are You!!!"

you called me on my cel at 7:20 am and yelled that "they" were trying to take you away; that men were watching you and trying to touch you; that you were being put in the basement.  You had to leave.  You said " come and get me".  I told you that you needed to stay and get well.  "I will leave without you then, As soon as no one is looking I am out of here!"

I knew that you could not do that, but it was like talking to another person.  "Are you trying to sell the house, is that it?  Why won't you come?" you yelled.  "Come and get me, or I will go live elsewhere."
the nurses came and as they slowly calmed you I listened and worried.  Work was hell that day.  I called the desk and they assured me that you hadn't been moved, that you were just confused.

I was so scared for you that that day I decided to find your mom no matter what, I tried everything and got lucky.  As soon as she found out where you were she was on her way.  I also got hold of my cousin Lisa and she offered to visit you on Sunday.

The fact that you would wake up for the next few days knowing someone who loved you was there, meant the world to me.  I knew you were confused and afraid.  The nurses confirmed to me you were not being moved; that you were still in your bed, so I needed to have people with you.

I found out the reason you hadn't had the MRI was that the basement had a flood and they had to shut down the MRI.  I spent the week with you and watched.

Wednesday, November 23, 2011

"A BAD DAY"


Phil's Side;

When I arrived in Toronto I rushed to the hospital but you had suffered another "attack", the third one, through the night and were heavily sedated and  were being taken for another test.  A Cranial Angiogram"  where tubes are inserted into your groin all the way up into your neck.  This test was so they could insert a dye into your head.

I had to hold your legs down so that the incision wouldn't reopen; you also were not supposed to sit up or lift your right leg.


My Side:

apparently I knew you were there because when you arrived you began to rub my feet and I cried out " Where have you been?"  To this day I don't remember this.

Phil's Side:

After the test the Dr. said that it was informative and would help determine what happened.  he also said your headaches would get worse and they did for the rest of the day.  You were in pain and asleep.  I had to leave to get back to North Bay and I coyldn't tell you I loved you and that night without being able to talk to you and knowing you would wake up looking for me was the worst night in my life.  i rode back home in tears, afraid for you.  I called the nurses station on the 8th floor 2-3 times a dayto see how you were.  I hated to be away from you but I had to work to pay bills.

I think the nurses started getting irritated by my calls, but they were nice and told me you were ok.  That Saturday things got scary.

Catch the Signs

This commercial came out recently; it's great because it makes people aware of how fast a stroke can happen and educates people on the steps to take when it does; at the same time if you have had a stroke you can relate to how Phil and I feel every time we see it.  It's a little eery to us.  Phil says it's like being in a crowded elevator and you can't breathe.  It really freaks me out, with a heavy feeling in the pit of my stomach.  It is a good commercial because it grabs your attention....

https://www.youtube.com/watch?v=7mSceRPcvZY

http://www.tipdisease.com/

http://www.heartandstroke.com/

Monday, Tuesday November 21st, 22nd

My Side:

I remember arriving at emerg with my nurse, but time has kind of stopped at that point.  I spent most of Monday waiting for tests and I sort of remember emailing from a nurses laptop, only because I still have those emails, which I have decide to share...

• me

• Nov 22, 2011

To

·         PhilMcCoy

found computor in lounge area sadly no mags or books.  seen doc he said he looked at my scans quickly last night but he is going to have the radiologists look at them closer but he didnt see what he thought he would see that clot down the center of my head.  so he ordered more tests i think he said mri and mra.  I miss you guys i wish i wasnt here.  Have no clothes, brush, toothbrush no money to buy anything to read.  been sleeping alot I hope you are too I dont want to worry that your not sleeping then you get sick.  How are the boys tell them i love them.  hows Karolin doing tell her i said hi.  reason im emailing is because none of the phones dial out long distance have to get nurse to do it.  only one computer here so dont know when ill get access.  if your on now email now before i go back for breakfast.

love you miss you xoxo

From: Phil McCoy <philmccoy@pronorth.com>
To: "'dardoo2003@yahoo.ca'" <dardoo2003@yahoo.ca> 
Sent: Tuesday, November 22, 2011 7:21:26 AM
Subject: Re: hiiiiiiiii

I love u sooooo much , everyone fine just worried, will call hospital and find out if I could ride back with u if I get there.hoew can I get money to u ? I can't sleep yet. Find out if u can how long they intend to keep u so we do not end up with u here and me there.I miss u so much, call me if u can

•  
• Nov 22, 2011

·         Phil McCoy

dont come yet they are very strict with visiting hours i am in the trauma/neurology clinic.  dont want you to send anything ill find something to do.  you have to get some sleep please do it for me.  i think im doing the tests today and if they let me out i have to find my own way home but if they send me back to the hospital i will probably fly there.  what did everyone say when you told them i had to fly.  laugh their heads off. so maybe you could try to figure that out for me.  i need pants, underware, bra coat hairbrush toothbrush to go home with .  again i donet now when that will be.  but if you can come down with a truck for the day and be able to go back that night my room number is 946 on the 9th floor love you get sleep

• Nov 22, 2011

To

·         Phil McCoy

i would know more after the tests today so im going to go back to my room in case they come looking for me and ill email you when i know more hopefully by supper i should know

see ya love ya say hi to everyone

Subject: Re: hey  

ya but i havent had the rest of my test done yet still waitning for the mri

From: Phil McCoy <philmccoy@pronorth.com>
To: "'dardoo2003@yahoo.ca'" <dardoo2003@yahoo.ca> 
Sent: Wednesday, November 23, 2011 6:14:22 PM
Subject: Re: hey

Ill be there around 8 actually will have a big coffee , if u are unable to fly home I have arranged for u to bus , do you want your coat brought down just in case

From: Darlene McCoy [mailto:dardoo2003@yahoo.ca] 
Sent: Wednesday, November 23, 2011 06:11 PM
To: Phil McCoy 

• Nov 23, 2011

To

·         Phil McCoy

well cant hog the comp it just came back on when i got on it going to check avon make sure everything went thru then give to someone else (the comp that is)  love you cant wait to see you t omorrow say hi to the boys tell them i love them

The last email was on the 23rd and that's it, I don't remembe anything else.

Phil's side:

At first the tests kept you busy but the MRI that you needed to assess your condition did not appear to be coming any time soon because there had been a flood in the department and it was shut down.  You were given a long distance code that you could use to call home.  You called me and told me they would not supply you with underwear so I packed your stuff and headed down.

My Side:

It is kind of eery looking at these emails, simply because I don't remember anything of Wednesday, or the doctor talking to me or you getting there.