Susan Cotter Marshall


I had my stroke on Ash Wednesday, (Feb. 21st) 1996. I was at work when it happened, and because of some basic medical knowledge, I knew what was happening. I had gone to the copier and started to feel like I was going to faint. I walked into the break room, heard a "rushing" sound in my ears. I told my boss to call 911 and my husband; then I fell over to my left, I couldn't swallow and my vision was messed up. I knew I had had a stroke.


I was brought to our local hospital and I remember arriving, but I don't remember anything else. No tests - nothing. I was then transferred to the University Hospital in our area, where I'm told the "fun" began. I write "fun" because I have no memory of the next three weeks.


My husband called my family together because my neurologist wasn't sure I'd pull through. In the ER the doctors placed a shunt in the front of my skull, put me on a ventilator, and inserted a nasal-gastric tube. I was then sent to Intensive Care. After I was weaned off the ventilator, I had a tracheotomy, and a more permanent feeding tube called a "peg." Everyone knew I was going to pull through when I ripped out everything; the shunt, trach and all IV's. Of course I had to be placed in restraints after that, and apparently I wasn't amused.


This whole time as I wrote earlier, I have no memory of. What I do remember are what I call "dreams." In my head I was everywhere but a hospital. (Must have been the morphine!)


After I "came to" I was transferred to rehab. At this point I couldn't even sit up without help, couldn't speak because of the trach, and was getting all my nourishment through a tube. My days consisted of two hours of physical therapy, two hours of speech therapy, and two hours of occupational therapy. They were all relentless and I'm better off for it today.


My entire hospital stay, including rehab, was two months and two days. I've relearned how to walk, talk and write. I came home in a wheelchair, which lasted about a month; I then used a cane, and even though my balance is gone I don't use any type of aid when I walk now. It has now been almost eight years. I'm unable to drive or work outside my home. My independence has been lost and I think that's one of the hardest losses I've faced. I am alive though. A decent sense of humor has helped - immeasurably.


I'm married for the 2nd time and have two children, Lisa 21, and Corey 18, by my 1st marriage. I have two labs also - mother and son, yellow and black respectively.


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Dear Susan,


Thank you for the attitude adjustment. Where shall I send the check? I'm so inundated at all times I've seldom come here to the Stroke Network site. I typically allow my list of "should-do's" to get in my way of doing anything that could be beneficial to me, the caregiver. I have much to say, stories to write, videos to edit, social media marketing to do, calls to make, letters to write, shopping to do, bills to pay, laundry (stop: I'm getting a directive from my wife, one moment please). I'm back, this is how it goes all day and night. My wife Isabel is going to so some painting; now she's all set upand in a good frame of mind. What a relief. It' s a good moment. These are good moments.


Speaking of good moments, I logged in here to the StrokeNet and I got stoppedin my tracks again. I was feeling especially frustrated at my inability to manage my time. I intended to find a place to write something about time. All day I've been trying to do our income taxes. Pretty simple now that it's just my wife's teacher's disability retirement income; it barely covershousing and utilities and part of the food bill but thank God we have it (and akind and understanding landlord).


So I wanted to share my biggest "caregiver mistake" regardingtime. It is a mistake to think that time is mine. It is not. "Can't seemto find the time. Time to myself. If I had the time." (I'm backagain) See why my writing is disjointed? Stop and start stop and start all thelive long day. That's me.


Sometimes I think I'm no more than a glorified waiter. There's another one, "glorified waiter", a caregiver thought that's really a complaint; it's a statement of resentment. Peel away the layers and one might find that they resent the fact that the person they're caring for is seemingly “stealing” the caregiver’s time (StoP: had to clean Isabel’s glasses, then deal with another emergency and subsequent lecture: I had mistakenly laid a clean eyeglass cleaning cloth on one of my wife’s paintings… Stop: back again, she needed a spoon.


Certainly, I would love to have the time to simply sit here and write uninterruptedly. Is that realistic? It’s not, considering my new job: caregiver, actually sole caregiver. If I can find a few moments here and there throughout the day and night to write something, that’s one thing. But to expect to have any time Stop… Isabel is showed me that the neighbors can see into her art room, she wants me to put up a fence to block their view.


For someone like me, who is a journalist by trade, who now needs to find a way to work form home, this whole caregiving gig is quite stifling. I created a video blog, CaringForMissLeyva, where I’ve been attempting to chronicle our new life as a small family surviving a stroke.


It’s helpful for me to realize that time is not mine, it’s God’s. It’s all God stuff and God time. Stop. There is no guarantee that we will be given more time. This moment is all there is. I may get more moments and minutes and hours and days. These may come to me as I am, or in some other state of being, either mental or physical. Stop: small emergency cleanup.


The point is that we caregivers who are at times resentful for our new station in life need to take stock and realize it’s a pretty good gig compared to waking up in the hospital and realizing that we can no longer walk, or talk, or read, or write, or communicate, or see, or hear well.


Thank you Susan for sharing your story. The image I have of you standing at the copier and hearing the rushing sound in your ears is something that will stick with me. It is a reminder that any day I don’t have a stroke of my own is a good day. And a reminder that as much as I know about strokes and rehab and recovery, I haven’t any idea how devastating a stroke would be if it were to happen to me. I shudder at the thought. It makes me appreciate all my blessings.


At any given time we are all so deeply blessed in so many ways it’s impossible to comprehend.


Sincerely, Rick Griffith, Caregiver

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