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My Stroke Journey

My Experience By: Bill Carroll

So it all started with stress. Yes stress, the number one contributor to high blood pressure and then the chain reaction of crap that happens inside your body that just snowballs into something you’ll never be able to control when it happens... a stroke. Of course there are lots of ways your body does what it does and then results in a stroke but mine was pure stress driven which became something else that became something else and it was a chain reaction of things developing in my body into the worst nightmare I have ever endured...This will be the condensed version for FB but for my actual book I’ll be much more thorough in the story leading up to this memorable day.

Over a period of time (about 4 to 5 years is my guess) going through which had to be the most stressful time of my life, inside a situation that wasn’t right for me turned into and resulted in experiencing the most horrific year of my entire life. 2016. The year my so-called “9 Lives” was depleting rather quickly over a 6 month period (writing this as of December 2016) I had already used up 8 of my “9” lives per-say. Well, here is my story...

Thursday May 5th 2016 at 11:30 a.m. will forever change my life. I was sitting in my studio at work, Centennial Broadcasting’s WBQB & WFVA radio station’s Production studio where I create commercial spots among other things every day. I was actually recording a client, someone whom I’m actually friends with and while she was voicing her commercials, like a blanket, an uncomfortable whoosh, all of my hearing on the left side of my head just disappeared. Gone! Like someone stuck a cork into the side of my head completely closing off all sound. Now, I wasn’t a stranger to this feeling because it had happened before in the past few weeks leading up to this day but it only lasted from a few seconds to half a minute and that was it and thought nothing of it, not knowing I was actually starting to have TIA’s (mini strokes) and didn’t even know it. I didn’t know why it was happening but for about 6 months leading up to this horrific day, I've had many headaches, slight paralysis in places, dizziness and most symptoms of a stroke but not as intense as it was this day. I should've listened to my body telling me, screaming at me that I was about to have a really bad day, a bad rest of the year!

So there I sat, My hearing completely gone, now my left foot, leg, hand and now face starts to get tingly and heavy. Becoming more & more numb and not being able to hear her anymore because now my right ear was closing up as well, I was getting a little nervous but more for the fact not to disturb her recording believe it or not. I know that sounds crazy but I thought it would be a bit embarrassing. Stupid to think that I know, and now let’s add my head getting fuzzier and fuzzier with tunnel vision slowly kicking in and extreme vertigo.

She finished and said thank you and I was fighting all feelings at this point trying to act normal while I was losing control of all normalcy with my body. Extreme discomfort and pressures and uncontrolled actions that weren’t normal anymore. As she was leaving the studio, I lost all peripheral vision, all feeling in my left side, all hearing on left and partial on right sides and now extreme vertigo and “heaviness” was coming over me. I couldn’t focus on anything anymore and dropped to the floor with panic setting in and at this point really getting scared. I managed to get myself up and wobble to the door and open it and walk like a drunk man to the area’s couch that we have in the common area downstairs where only myself and our Promotions Director reside in the building. Everyone else is upstairs. I had a very hard time focusing on thoughts and wanting to say something, anything but it just wouldn't come out. Our GM was there talking with our Promotions Dir and came out of his office and looked at me and noticed I didn’t look so good. I was hunched over sitting on the edge of the couch rocking back and forth trying to focus, calm myself and attempt to take control of my body again and fight every single horrible uncontrollable feeling I was experiencing. He said I hoped I felt better and went upstairs not even really noticing what I was going through. I wanted to grab his attention but nothing would come out of my mouth. It was the strangest feeling. Sean, my co-worker attempted to chat with me knowing that I was out there on the couch and he tipped back in his chair to look at me while talking and all I really heard was this hollow, underwater sound coming from his face and then he looked concerned. He asked me what was wrong and all I could get out was to say “call 911” in this slurred weird way. Once he understood what I was saying, he knew I wasn’t joking and he panicked and tried to call 911 on our brand new phone system which none of us really knew how to use yet for simple things like that. I kind of heard him yelling in the intercom to someone how to call 911 and the next thing I new, half the building flew down the stairs and surrounded me.

What felt like just seconds later, the ambulance shows up and paramedics everywhere kept asking me things and trying to say things and it was all a blur really because I was now fighting most parts of my body that I no longer had any control over. It was so scary and I really thought that was it for me... My time was up. Let me tell you, that’s one of the worse feelings ever. Next thing I know I was being helped by 4 people to get me onto the stretcher and into the ambulance. trying to concentrate on each part of my body that was fighting me including my thoughts. What happens next I really don’t remember much of.

In and out of consciousness, the next thing I really remember was being inside a CT scanner inside the ER of Mary Washington Hospital trying to stay still. With my blood pressure topping out at 240’s over 130’s and everything all fuzzy still, I never felt so lousy and lethargic than ever before. Like my body ran a marathon and then some. From nurses and doctors all around me doing all kinds of things and cutting my clothes off and hooking me up to many wires and tubes, all I could do was pray and think of my family, my daughter, my life just passing me by at 200 MPH. With my body not cooperating for a while and still out of control and my hearing just 100% gone on my left side and about 50% gone on my right, I had a very hard time understanding or hearing what was happening in the room as I was trying to listen to at least some kind of answers and explanations to what was happening to me.  For those that do know me, I was trying to make positive comments and keep myself in an "up" mood but truthfully I was screaming inside, terrified as to what was happening and would could still happen.

I’m up in ICU for a couple of days now before they take me to the Stroke Floor where I continued my incredible journey through this horrible nightmare. While in ICU, 2nd stroke hits me pretty hard with all same symptoms happening in the same order and then number 3. Oh my God number 3 was horribly intense. Much worse to me than the 2nd one but a bit different than the 1st because this time I really thought I was going to die.

My friend Dani, whom I’ve known for decades came down from New York where she lived to be with me and she was the only one with me at this time besides the nurses and doctor that was working on me and trying to get me stable. I remember this horrible seizure-like twitching of my right leg that I’ve never experienced before. Very prominent and violent-like in a way. I kept mentioning it to the nurse for a few minutes before it really hit me and then all hell breaks loose again with my body with the same things happening to me but this time everything was so much stronger, I really thought that was it for me. I remember not being able to see well when I opened my eyes but they were slammed shut as I tried to fight all symptoms and issues that were blanketing my body. I managed to roughly say out loud to Dani about my family and daughter things like, “please take care of them” and “I wanted my daughter to never forget me” and “I wish she was here with me” and things like that. I remember calling out my daughters name. For some reason that’s all I could think of when you think you’re going to die. Very terrifying and I kept on trying to fight everything that was going on with my body at this point. I was determined not to die just yet. I kept telling myself that there was more for me to do. More to do with my life and a bigger purpose. I don’t think I’ve figured that out yet until recently but I think it’s becoming more and more clearer to me but that’s another whole story in itself.

In the hospital on the stroke floor for quite some time now getting to know all of the techs, nurses, specialists and most of the personnel. It’s like you’re introduced to a new family of sorts. All there with one purpose. To help me understand what’s happening to me and to keep me safe and help me heal. I never looked at a hospital like that before. To really see what these people do for a living yet it’s what their calling is. They’re there because they want to be and possess a desire and passion to help people like me in my situation.

Well, it’s a Wednesday now and I’m about to be discharged I heard. I kept telling everyone around me as well as the nurses and hospitalist that I wasn’t ready to be let go yet. Still felt weird and not well enough yet to be out of the intensive care I have been receiving. By this point I’ve learned so much about my body and what was happening to it that I just knew something wasn’t right yet. Boy was I right.

I was discharged and was brought to my exceptional friend Mike’s house so I wouldn’t be alone. Both my sister and Mother had been visiting as well so we all went there. Still feeling not so good, I pretty much was resting as much as I could. No one would let me do anything of course and I remember some of my symptoms coming back but thought they were under control. I was so nervous inside but didn’t tell anyone how I was really feeling. So early the next morning both my sister and Mom left to go back home which was at least a 7 or 8 hour drive for them. I rested all day and was still feeling lousy. Well, less than 24 hours discharged, at hour 22 it happened again...

Sitting at the dinner table with everyone I started to feel really strange again and I mentioned this to everyone. Symptoms started again and this time got stronger and stronger. From the hearing loss to extreme dizziness I was beginning to get all numb on my left side as well as feel a major heaviness throughout my entire body. Getting scared again and completely blanking out, I remember everyone telling me to relax but all I heard was a tunnel sound, like the Peanuts Gang sound for when adults speak. That “Mwah Mwah Mwah Mwah” sound. Funny I know but there was nothing funny about hearing that and not being able to even sit up any more... I remember losing peripheral vision and everything going black sitting there. Now I’m in and out of consciousness slumped at the table and the next thing I know I wake up in an ambulance. Good God was it a scary feeling that was, not knowing how I got there nor how all of my friends were feeling at this point.

Back to the hospital I go less than 24 hours from being discharged. No hearing on left side, left side completely numb, tunnel vision and my blood pressure in the 130’s over 120’s again. Back at ER seeing familiar and new faces. Not the place I wanted to be but felt much safer “just in case”. What I was also really feeling was how much I was putting out and worrying my close friends. Yes, I actually felt that way. I know it’s silly as they all kept telling me to hush and I was crazy for thinking that way but I couldn’t help it. I felt like a burden to all who were helping me. You see, I was always the strong one helping others in all kinds of capacities and now here I am in my life having to completely rely on others to help me with almost everything. I still have a hard time with it but have learned some important life lessons throughout this whole process too from those close friends. They have helped me with so many things on so many levels that I couldn’t imagine my life without them. People always say when you’re in need you really find out who your true friends are... well, I sure did and am so thankful for them each and every day.

Now back up to the stroke floor I go seeing everyone again. Scared out of my mind still for what has happened and what could happen. My inner spirit and strength was being completely sucked out of me. The major fear of the unknown still and now just very concerned as to why this keeps happening. A new cocktail of meds now and just trying to adjust to how they make me feel along with the affects of the strokes are doing to me, it was so hard to concentrate on any positive anything, besides the fact that I’m still breathing.

So back in for almost another week getting even more tests done from blood tests to brain scans, to dopplers to MRI’s and Cat Scans. A lot during this week is a bit of a blur to me but I remember one significant thing that happened. I’m scared, tired, uncomfortable, weak and feeling downright miserable on so many levels. Then, one afternoon, into my room walks this man. I’m guessing in his 70’s, short and cheerful with a warm calming voice, popped into my room and introduced himself. He was a volunteer, a stroke survivor himself he stated, volunteering his time one day a week to go and visit with other stroke victims and there to answer any questions that they may have about what they are going through. I asked him a lot of questions actually as I felt very comfortable with him. He even told me that I asked him more questions than the normal survivor would. Loved his presence and he had such an impact on me that day, that I wanted to do what he did and to someday return to the hospital as a volunteer as well as an 8 time survivor and help ease the fear and unknown to new survivors. Well, that’s exactly what I did. I contacted the hospital’s volunteer program people and am taking it from there. He had such an affect on me that all I could think of was to instantly have the need to help other survivors and victims such as myself.

 

Almost a week later I was again discharged petrified out of my mind which wasn’t good adding to the already stressful time I was going through. Still no real answers from anyone about what was happening to me and now a crazy list of meds and specialists that I had to see each and every week, I was now back to my own home by myself to endure my life still scared outta my mind in fear of having yet another stroke. When will it happen, where will I be, will it be stronger than the others and will it kill me or leave me severely disabled. All of these emotions and thoughts just racing through my already damaged brain every single moment of every day and night.

Let’s fast forward to 2 weeks and here comes number 5. In my house trying to relax as best I can and by myself I was feeling weird again and having more symptoms. "Really?" I was saying to myself... "is this really going to happen again to me?" I prayed and prayed that it wouldn’t and the symptoms started to get stronger and stronger. I managed to call a couple of friends and I fought as hard as I could the familiar issues that I was experiencing once again knowing very well what was happening for a fifth time to me. I actually got so mad sitting on my couch that I refused to call 911 or anyone for that matter for about 45 minutes, that I was having another one.

Well, panic was setting in and I gave in to my inner voice or something that was telling me that it was time to get help.... next thing I know the friends show up and an ambulance. Ugghhh, 3 places now that I’ve been picked up by ambulance and I have to tell you, those medics each time were so nice and calming for me. Unbelievable service and bedside manner from these selfless people. Back to the hospital I go. This stroke wasn’t too bad... well, at number 5 I think it’s a walk in the park now even though inside it’s doing more damage than good and I still didn’t know what they were doing to me just yet overall. So back to the stroke floor I go for more tests and now there was a team of Neurologists trying to figure out why this keeps happening to me. After just shy of a week again, here I go being released with no real answers but a list of doctor’s appointments as well as in-home occupational and physical therapists and MORE meds. All kinds of complications and issues I was having to my hearing, eyesight, body strength just gone, balance, sleep, sentence structure and grammar and now reversing letters in words every time I write or type. Just feeling downright horrible and very bad and detrimental to my career and passion, losing my abilities that is so important to my life and what I do for a living. Yup, even more depression and fear kickin’ in on top of everything else I was going through with this whole horrible nightmare I’m experiencing.

Fast forwarding again and leaving out a lot of details about trying to heal, appointments of all kinds and finally being able to go back to light duty at work, I was still feeling physically bad as well as having so much emotional and mental turmoil over this whole ordeal. Weeks going by starting to VERY SLOWLY get some kind of answers to all of my medial questions and learning so much about my body and what the affects of the strokes has had on me, I still, with the stresses of my own life's issues (divorce), haven’t been able to really start to properly heal. Learning now what temporary and permanent damage that the strokes have left in their wake within my body, has added new stresses and more emotional heaviness to my mind, body and heart. For instance, my hearing...

I knew I needed to go and see an audiologist to find if the strokes had done any permanent damage to my hearing because each and every time I had one, I would lose my hearing 100% on my left side for quite a few days and it would slowly come back volume-wise but not normal like it used to be. Being an audio engineer at a very early age, I’ve had intense and incredible training to my hearing so the way I hear everything day to day and with my job, it was exceptionally tuned and vital to my career and passion for what I do every day. So naturally I was VERY hesitant to go get the real answers and face them. So, I finally found the courage to do so and went to a hearing specialist after my 8th stroke even though through this timeline of events with my stroke journey, I haven’t experienced the rest of them yet but wanted to explain what I was feeling when I got this part of my issues looked at.

I was petrified walking in there not knowing what the outcome of my visit may be. They were so nice from the very start which eased my fear a little but I knew my heart was pounding the entire time and my blood pressure was majorly elevated which isn’t good anyways. So after some extensive testing and seeing the inside of my ear and eardrum on a huge monitor, which was very cool by the way, I was seated to hear the results. My heart pounding even harder and anticipating the worst news, she began to show me on a chart what I had lost in terms of certain frequencies which I kind of already knew but just to what extent. I have lost mid to high frequencies in my left ear and certain sounds in that range actually physically hurt me to hear now. This is VERY bad to my career and playing music live but I knew something had happened to me. So what did I do? I lost it. Broke down and became quite emotional right there in the office. I couldn’t help it. It was VERY overwhelming for me to find out the answers and the specialist was so nice and understanding because she knew that I was very nervous with any negative outcome of my visit. So now to deal with this issue and top of everything else.... wow. Could it get any worse? Sure it could be worse, everything can always be worse but damn, let’s throw more at my already delicate emotional state and pile more onto my plate. I really don’t know where my strength was coming from but I kept telling myself I just needed to pull myself together and get on with my days and take on each issue separately and come up with a way to deal with it to the best way I could.

Now let’s go a month or two forward and it brings me to Halloween. Oh boy, Halloween night working a radio station event as the entertainment is something that I love to do and haven’t been doing live gigs for awhile because of my health, I thought I was ready to do one. Well, I was feeling pretty weird again all day and very lethargic as that is a daily feeling for me anyways, a new way of life unfortunately but nonetheless, I was excited to do what I do best on one of my favorite holidays. Packed house all night, tons of people happy to see me, asking me how I was doing and being so nice was a great feeling. Of course in my head and heart I think I’m invincible but yeah, no, not so much nor was I ready to deal with all of that flashing lighting, loud music, standing for a long time and dealing with heat of the room for a long period without being able to cool down. All of this going on and fighting the “weirdness”, I was not realizing what my body was about to do to me again. During the very last song of the night it finally hit me like a blanket of fear and uncontrollable feelings I was having as my body started to react to stroke number 6. Boy was I mad. Complete hearing loss on left side, extreme dizziness, nausea this time and tingling all over. Oh, and let’s not forget the tunnel vision and heaviness I was feeling as well. I had to sit down immediately or I was going to fall to the floor. I was fighting every feeling so not to be embarrassed or found out of what I was experiencing. I actually grabbed the microphone during all of this and managed to slur out a “thank you for coming and have a good night” exit message to everyone as I brought down the music, not being able to actually hear myself. THAT was very strange to say the least. It was like talking under water and with extreme weakness and dizziness. NOT GOOD. Luckily the buddy of mine who has been my “legal guardian” just in case I ever died was also there and was trying to keep me calm.

Well, my physical condition worsened and yet again I find myself being put into an ambulance. This time my blood pressure was so high they had to take it 3 times just to make sure. 240’s over 130’s and when the medic tried to put a line in me my pressure was so high that it instantly blew and my blood squirt right out of me like a geyser that it streamed all over the techs pants and onto the rigs floor. I couldn’t believe it. Again falling in and out of consciousness, I remember hearing the medic telling the driver to step on it as they were very concerned with my BP being so out of control. Naturally my anxiety yet again skyrockets with my blood pressure and major fear sets in... again. Back in ER, not being able to hear on left side, numbness, weakness, heaviness, the usual. I remember asking for my nightly meds as I routinely take my medication. They wouldn’t give them to me for some reason even though I repeatedly asked for them.

So finally I received a room after a few hours and 1 of my meds for blood pressure and I’m feeling horrible because I usually take quite a few meds just for my blood pressure alone a few times per day. Hours have passed and still no hearing and extreme pressure in my neck because of my blood pressure not stabilizing. I kept asking for my regular meds and sure enough... BOOM, another stroke. Number 7 comes over me with all the same symptoms and this happened the very next mid-morning but my hearing was already gone so that just continued to bother me and made me perpetually weak all over. With still not the proper normal medication I was taking... again that night.. number 8 came along and put me in my place. I couldn’t believe it. 8 different strengths of strokes all within a 6 month period. The nurses kept telling me I was a walking miracle. Now mind you, after the first 3 I had to learn to walk again and stabilize my balance as well as teach myself to comprehend sentence structuring and such as well as articulation in speaking. Still to this day I reverse letters in words, have eyesight and hearing issues, weakness, neck problems from the spinal stenosis caused by the stress, soreness and let's add the side effects from all of the medications I take  as well. I still get winded very easily too just walking from A To B.

It's now 2 years later, as of the writing of my journey, I’m up to Specialist number 13, 14 CT Scans, 17 MRI’s, countless dopplers and intense physical therapy. Keeping my appts with everyone and everything hasn’t been easy and trying to do my job efficiently so I can at least pay my bills has been the most difficult time in my life that I can remember. The fear, the frustration, the emotional and mental toll and strength it takes each and every day is hard to explain, imagine and to deal with. A handful of strokes that were doozies but most of them TIA's (mini-strokes). But they all of an affect on me. Not fun at all. I believe my number is up to 24 in all as of August of 2019. Even had one while working a gig. Boy was THAT fun. Being unable to do anything because your body decided to shut the important things down on you like your balance, your hearing, your clear vision, your strength and the ability to keep your food in your stomach. I keep asking myself, "when is this going to end?"

What do I want from all of this? Peace for myself, bring my experience to other stroke survivors and turn it into strength for all of us and bring awareness to all who need to know the signs of a stroke and what to do for someone who is experiencing one. This is what The Stroke Journey is all about. I pray each and every day to give me the strength and more courage to help me through this awful terrifying experience, still.  But, I am still breathing, am surrounded by selfless, caring true friends, so that's a start,   ;-)

Thank you for taking the time to read my story, my journey...    ~Bill Carroll

[For updates on Bill's incredible journey visit our Facebook Page and go to the "Notes" section]