Caryn’s Story

December 24, 2008… A day that will stay forever in my mind, this was the day my life as I knew it was taken by a Stroke. I have rebuilt it with the help of my amazing family and have been able to reach so many people throughout my experience and I am so thankful for that. Love your life… It’s the only one you got!!

I thought I would post a copy of my speech I gave at USM for New England Rehabilitation Hospital so here it is.

“Hi Everyone, it’s unbelievable to be here with all of you people today. People who do so much for me and my recovery. Day in and day out you’re a part of the reason I get up every morning and say to myself…Every day is a second chance and I am stronger than this challenge, so thank you all for what you do.

I want to start off by thanking the New England Rehabilitation Hospital and Sharon Hartl for asking me to share my story with you. It’s a pleasure. This gives me the opportunity to help with the awareness of strokes, and especially what specific challenges young women face, from my perspective with a small child at the time of the stroke.

So I’m gonna let you all know that I’m going to be reading a good portion of my story, I due this because of memory and speech issues or Aphasia as you all may know it, caused by MY stroke. Notice I said MY stroke. I say it that way because it is MINE, no-one else in the world has had this stroke but ME, not any of you, not my parent’s, not my brothers, not my boyfriend, and not my son. There are so many types of strokes depending on where and how it happens in the brain and the amount of time it goes untreated all these variables go into the degree of how things will play out in the end. How I choose to deal with the stroke…that is MINE, the fact that I am choosing to overcome it and the challenges I face DAILY those are MINE too. It took me 6 years to figure this out… but I finally did it!

I have had so many people in my corner since day one of my stroke and that has with a doubt played the biggest role in my recovery. I am so grateful that my family has been with me every step of the way, from moving into my parent’s house right after being released from New England Rehabilitation Hospital, to speaking to you today. My mom is here with me today and I’m just gonna say this… this woman is superwoman. I never would have made it through to the other side of this experience… I like to call it instead of an experience… an uphill climb with a lot of bumps and boulders thrown in along the way. I never would have made it through if I did not have the help, the guidance, the support, the unconditional love, the patience, my parents also known as the grandparents willing and ready to become the mother AND father figure to a petrified little 7 year old boy when his mommy had a stroke, that he couldn’t quite grasp.

Support is such an intrical part of recovery. I don’t care if it is a family, or close groups of friends people need that group of people who care, people who can speak for them when they can not. That is why I have such a hard time moving away from that topic, it’s a huge reason why I am speaking to you now. None of this would have happened without my true line of support, and that is my family, and believe it or not… you. You helped my family through it when the stroke happened. They didn’t know the first thing about how to care for a stroke survivor, who would, unless you’ve been there. And your helping me through it even now.

Now I’ll get more into my story. On Christmas Eve 2008, good timing right? I suffered an ischemic stroke in the basal ganglia region of my brain. Basal ganglia is most known for a person’s voluntary motor control and routine behaviors like cognitive and emotional functions. I remember I just dropped to the floor when my stroke happened I didn’t know where my arm was nor could I feel it, didn’t know where my leg was, couldn’t feel that either… so I didn’t even realize until I felt around with my left hand that I was laying on my right arm. I could not feel anything on the right side of my body at all. The thought that I was having a stroke never crossed my mind because I had just turned 29 years old and I was healthy, wasn’t overweight, didn’t have high blood pressure, plus I thought strokes only happened to older people… Which is what I’m trying to spread the word about. Strokes don’t discriminate!

At the time my 7 year old son Kobe was home with me. He asked me if he should call someone for help. Now that should have raised a red flag for me that I wasn’t making any sense and I was speaking some kind of foreign language to him that he wasn’t understanding. But in my mind what I was saying to him was exactly what I was thinking… it was perfectly clear… in my head. So my response to him was NO. I figured I was sick, it was no big deal, and that I would figure it out, or it would pass as time went on. I dragged myself on the floor into my bedroom and to this day I don’t know how I made it onto the bed with only my left side working but all I wanted to do was sleep. So that’s what I did, climbed into bed and took a nap. Then 6 hours later the ambulance arrived to bring me to CMMC.

I want to mention here that this is the most important part of my story and the main reason why I’m trying to get the word out about strokes especially in young people because had I been aware of the early signs of stroke, it could have made the difference in getting the clot busting shot if given within 3 hours of the first symptoms, however for me, too much time had gone by for the shot to be helpful.
This is where I’ll talk about the warning signs of a potential stroke and the acronym F.A.S.T. I’m sure you’re all aware of this being in the medical field but I’m gonna go over it anyway because maybe there’s one person out there today who hasn’t heard of it and if nothing else it helps me keep it straight and not messing it up on a live tv interview… which actually happened on Sundays Heart Walk…yup embarrassing.

So here we go F.A.S.T stands for: Face dropping Arm weakness Speech difficulty Time to call 911

I remember going into the hospital ER, I remember my mom and dad being there. I’m not really sure why but I remember nothing else of my 7 days in the intensive care unit. I don’t really remember even coming to New England Rehabilitation Hospital. What I do remember though in those first few days is the woman they had asking me if I could tell her why I was there… and I told her that I wasn’t sure but it felt like I was hit by a Mac truck. There are bits and pieces that I’ll remember when someone asks about those 30 days at New England Rehabilitation Hospital. During that time I dealt with right side paralysis and loss of speech, also known as aphasia. I was very angry and FRUSTRATED that I knew the right words in my head but couldn’t verbalize them. A good example of this is when we’re in the hospital room and I asked my mom for a paper towel and got really mad at her when she said there weren’t any, so she started pointing things out in the hospital room trying to figure out what I wanted… then she asked me ok what do you do with the “paper towel” and I said hang a jacket… ah ha… what I really wanted was a coat hanger. In my mind I thought I was asking her for a coat hanger when in reality I had said paper towel. Or when she was driving me to therapy because I didn’t have my license back yet, and a song comes on the radio and I sang every last word, then looked at her like what the heck… I can’t say 5 words to you and have them make sense but I can sing a whole 5 minute song!! This is a small example of how my aphasia affected me.

In the blink of an eye, your life can change due to a disease or an affliction. Your goals, your dreams, and your priorities are forced to take a different turn. You are grateful for the little things, and worry less about big things. You leave behind the history of yesterday and determine how you will use today’s energy.
My journey has been quite a challenge but because of the support of my family, therapy, a positive attitude, and the help of the American Heart Association I’m able to stand here and speak to you today. I am standing here for ME, for MY stroke, the stroke I am overcoming, for my family, my son, for my friends, and most of all for the women I meet who can’t believe that someone like me could have a stroke.
I want to share a quote that I recently read that really personifies my challenges over the past 6 years:

“It’s like being in a fight in the ring where the opponent has the upper hand and you have no clue how many rounds you’ll be fighting, but they appear to be never ending”

I am here for all of you so we can recognize the signs and symptoms of a stroke and act F.A.S.T. in the moment… Remember face drooping, arm weakness, speech difficulty, time to call 911.
I Thank you for being here today and listening to my story. May is National Stroke Awareness Month so thank you for what you do every day, day in and day out for stroke survivors.
Because of people like you, I am no longer a stroke victim, I am a stroke survivor.”

– Caryn Pillsbury

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