It was my first day at Parkwood and my first supper. Lunch and supper was eaten in a common dining room. It was a room that had windows facing the elevators. My dinner was a ‘modified diet’, aka baby food consistency.
A few things happened on that first day and a few weeks later that has stuck with me this entire time.
The first was the unexpected arrival of my mom. She had mentioned the day before she couldn’t make into London. Therefore I wasn’t expecting her, to see her familiar silhouette walk off the elevator was so overwhelming. The sun was shining through the windows behind her and was casting a halo like glow around her. It was the stuff you see in movies. Music should have accompanied that moment. I was so happy I couldn’t stop crying long enough to eat. Eventually they took me to my room since I was more than likely disturbing others.
The second thing I think of often happened a few weeks later, just as I was getting in the swing of things and making some progress. I was eating in the dining room and could hear a woman crying. It was a gut wrenching cry. It was all too familiar cry to me, since I made that noise on a regular basis. The word in the dining room was a type of hushed buzzing. I finally heard that the patient was being transferred to a nursing home the next day.
Was that her destiny? The miracle maker of a hospital didn’t work for her. I never met her and am completely unaware of her condition. I can say that my condition was limited and the overall prognosis was not positive. I can say that I had huge support and many people telling me things would get better. I had the advantage of people telling me stories of people achieving things that doctor’s didn’t feel very optimistic about. I’ll bet she didn’t believe nor had the support I did. Telling me it was going to get better. I think of that day when I am feeling sorry for myself and need to be reminded that things could be so much worse. Sharing that right now is making me appreciate today for what it is and not what it could have been had I not hd the stroke
I often referred to dinner time as the Swiss Chalet club. Which would make my mom furious since she likes Swiss Chalet Dinner was at a strikingly early 4:30. I made the comparison to Swiss Chalet because whenever I ate at the restaurant there was a room full of older people. The dining room was full of older people except for 3 of us being the youngest by 30 years. Sadly the other two other younger patients left soon after I was admitted. So it was me with the older people. The food was nowhere near Swiss Chalet
The meeting of everyone in the dining room allowed for discussions. This didn’t happen on a regular basis but one patient ‘Gladys’ was very vocal and initiated conversations while she was a patient. (I would see many patients come and go because my stay was so long. 51/2 months) Gladys would ask how everyone was doing in their therapies. I suspect she was trying to compare notes and seeing where everyone was and how they were doing up until that point as a way to measure her own success. Initially I was hesitant to share since my recovery was said to be out of the ordinary, likely since I was so young compared to everyone else but soon I realized it was giving her hope. Hope and then she would start to believe it could be done. So I thought if it’s giving hope then age difference be dammed. Believing in herself was half the battle. Mind over matter.
Two good friends of mine were getting married a week after I was admitted. It wasn’t unusual to be allowed to attend different events or be allowed to go home for the weekends. It was unusual I was allowed to go to the ceremony so early on in my stay.
Another friend of mine made sure I looked good. She outfitted me from head to toe. She did the shopping, made a few selections and let me pick which I liked the best. I know she does not want to be mentioned by name. As trivial as it may seem it was a big deal. I went to the wedding self conscious of the wheel chair (and necessary head rest) but not by my outfit. So thank you.
Monday, September 27, 2010
Tuesday, September 21, 2010
Being Admitted to Parkwood
I looked forward to the new phase but was scared as hell. I may have seen a lot of repetition and my days were the same but at least I knew what to expect. A kind nurse even gave me a nibble of chocolate as a going away present. It was fairly hush hush until it happened. I didn’t even get to say goodbye to the nurse’s that cared for me the most. They really made the difference. I have a new admiration and respect for nurses. They really have to be special people to do what they do. Thank you.
It was a strange sensation to be viewing the city from the back window of an ambulance. Prior to the stroke I had been living in London. The strangest part of it all was the route to the hospital was very familiar to me. Parkwood Hospital was only 2 blocks from my house. I was traveling on roads that took me to the local grocery store, video store, restaurants and my running route I had run for 6 years. It felt good to see the way things had been. I was riveted despite the cute ambulance attendant and the conversation with him. It just seemed like I should be out in the cars participating in my surroundings not watching them from the ambulance.
We pulled up to the entrance and I was wheeled in the automatic sliding doors than in the elevator to the 3rd floor and down the halls. It was like it was happening in slow motion. I remember looking around me trying to take in all of my new surroundings. Just talking about it takes me back to being on a stretcher and viewing things from a laying down position. I was trying to read the signs as I zipped by, I was just happy and proud I could read and understand them.
I was deposited in my new room that I shared with a much older woman. My new nurse pulled the curtain since she had to take a rectal swab to ensure I wasn’t bringing in any bacteria or disease. This procedure that was slightly embarrassing. But at that point I was used to being poked and prodded. I have come to learn that in those situations your body is not your own anymore. Privacy went out the window. I’m far less modest now.
After the nurse shared with me the lay of the land and what to expect she left me on my own. The poor woman sharing the room with me had to hear me. I just cried in disbelief that this was really happening. Thankfully I wasn’t alone for long. Mom couldn’t make it (it was the first time since being admitted) but it would be soon time for Mike to be off work.
It was a strange sensation to be viewing the city from the back window of an ambulance. Prior to the stroke I had been living in London. The strangest part of it all was the route to the hospital was very familiar to me. Parkwood Hospital was only 2 blocks from my house. I was traveling on roads that took me to the local grocery store, video store, restaurants and my running route I had run for 6 years. It felt good to see the way things had been. I was riveted despite the cute ambulance attendant and the conversation with him. It just seemed like I should be out in the cars participating in my surroundings not watching them from the ambulance.
We pulled up to the entrance and I was wheeled in the automatic sliding doors than in the elevator to the 3rd floor and down the halls. It was like it was happening in slow motion. I remember looking around me trying to take in all of my new surroundings. Just talking about it takes me back to being on a stretcher and viewing things from a laying down position. I was trying to read the signs as I zipped by, I was just happy and proud I could read and understand them.
I was deposited in my new room that I shared with a much older woman. My new nurse pulled the curtain since she had to take a rectal swab to ensure I wasn’t bringing in any bacteria or disease. This procedure that was slightly embarrassing. But at that point I was used to being poked and prodded. I have come to learn that in those situations your body is not your own anymore. Privacy went out the window. I’m far less modest now.
After the nurse shared with me the lay of the land and what to expect she left me on my own. The poor woman sharing the room with me had to hear me. I just cried in disbelief that this was really happening. Thankfully I wasn’t alone for long. Mom couldn’t make it (it was the first time since being admitted) but it would be soon time for Mike to be off work.
Monday, September 20, 2010
The Transfer
My days at University Hospital were numbered, and really it was about time for me to leave. My health concerns had cleared up and a bed had opened up. It was common for discussions about a patient to occur at the patient’s room door. The doctor’s assumed the patient couldn’t hear what was being said but I had. I had not heard the entire conversation. I had heard something about just before or just after the long weekend in May.
I couldn’t help but look forward to the long weekend. In the past I had looked forward to the long weekend because it was a type of kick off for the summer and some serious partying would occur. This long weekend held a different significance it meant....... moving forward. I didn’t look forward to weekends while in the hospital since it meant that my routine was interrupted. The normal staff had the weekends off. But this weekend couldn’t come fast enough. I had never been formally told that this was actually happening. Nonetheless I was convinced of what I had heard.
The day finally arrived.
It began the same as every other morning. It wasn’t until a few hours before it was actually going to happen that I was officially told I was being transferred. That’s when the anxiety set in. I can only guess the reason for the anxiety. As boring as things were, at least I knew what to expect. It was bittersweet. I was moving on but leaving behind the comfort of familiarity.
I couldn’t help but look forward to the long weekend. In the past I had looked forward to the long weekend because it was a type of kick off for the summer and some serious partying would occur. This long weekend held a different significance it meant....... moving forward. I didn’t look forward to weekends while in the hospital since it meant that my routine was interrupted. The normal staff had the weekends off. But this weekend couldn’t come fast enough. I had never been formally told that this was actually happening. Nonetheless I was convinced of what I had heard.
The day finally arrived.
It began the same as every other morning. It wasn’t until a few hours before it was actually going to happen that I was officially told I was being transferred. That’s when the anxiety set in. I can only guess the reason for the anxiety. As boring as things were, at least I knew what to expect. It was bittersweet. I was moving on but leaving behind the comfort of familiarity.
Monday, September 13, 2010
My daily Life at University Hospital
The tube was out and I was relearning how to talk. Thankfully, I’m a talker so I am getting lots of practice. My stay at University hospital was very boring. Each day was almost identical to the one previous. It was the sameness that I grew comfortable with and looked forward to the same things day after day.
Days started with a shower. The shower procedure very unique. I would be transferred onto a 'shower bed' that was water repellent (like a raincoat) with wheels. I was covered only by a blanket and wheeled to the shower room. It was suggested that I continue to use the soap and shampoo I would at home. This way I had familiar smells around me. The nurses would shower me as I lay on the shower bed since I couldn’t do it myself. Without fail the nurses would comment on how nice my shampoo and soaps (Aveda) smelled. It did provide a small comfort to have the familiar around me during a very unfamiliar time.
After personal hygiene was taken care of and my hair was brushed the next thing on the agenda was to lie in bed watching TV. Sometimes my TV was interrupted by a therapy team. Physical Therapists and an occupational therapist would come to my room for 1 hour of therapy. My very first therapy was full of tears it was then confirmed for me(the doctors likely knew, but I didn't).....I couldn’t sit on the side of the bed without falling over.
Before their initial appointment it hadn’t occurred to me to even try. I guess on some level I knew that that would pose some problems. The cause of the instability was the fact that I had NO balance.
Over time I progressed to standing with support. I would look out the window and see the parking garage and busy road. This road was significant since I would travel either running, walking or via bus along this road to get to University. How some things come full circle? I was once a student at the campus and would trek around University Hospital to get to my classes. Now I was a patient within the building that was a nuisance to walk around. (What I would give to be able to walk on the campus, even in the cold and slush)
Therapy was pretty basic. Stand in place or move and\or stack cones. Never both at the same time, that would be too complicated. Stacking things was much like the games I would get my younger brother to play when he was a baby......This is what I was reduced to. The thing that stands out-is that my brain was alert and could recognize the activity was very simple and infant like but my body would not cooperate and easily do the task. My movements were very jerky and erratic and would even miss the target altogether.
After therapy I would have an afternoon of more TV, except I am not into soap Opera’s so TV wasn’t that exciting. I’m not sure what I watched- likely HGTV. What I am sure of is the countdown would have begun for visiting hours. Occasionally I would have someone unexpected in the afternoon. A friend or someone that knew m,e that was at the hospital for another reason and would stop by. Later on after work it was mostly my family; Mom, Dad, and Mike. After supper time ( not mine since I wasn’t eating) Jon might come if he wasn’t working. This was also a time when others would come. So I enjoyed the evenings since they were filled with variety. The early afternoons was a time I had to amuse myself, even though it was only a few hours, went so slooww and dragged on forever.
It occurred to me in early days I realized I was not dressed for visitors. I only had the pathetic hospital gown and NO bra. I was self conscious about that for a bit but that thought went away when I started being dressed in some of my comfy clothes that I would have worn bumming around the house but still No bra. That must of been of serious importance since in my delusional haze I had a dream I ran home and got one.
Going to the bathroom was out of the question so I had to wear adult diapers. I got to the point that I would hold it almost all day because it was embarrassing to alert the nurse I needed to be changed. Just admitting that is embarrassing but that was the reality. It wasn’t until I had been discharged from all hospitals that I thought about an alternative-the bedpan. When I was admitted into Parkwood I was put on the toilet on a regular basis (when I had to go). But due to my no balance the nurse stayed with me. Bowel movements became less private.
At the time it felt like hospital stays were going to be create huge hole in my life and at the time were consuming my lifebut looking back on it...it’s just a small blip. I've now learned not to sweat stuff because it will improve OR with the passage of time seem less and less important in the grand scheme of things.
Days started with a shower. The shower procedure very unique. I would be transferred onto a 'shower bed' that was water repellent (like a raincoat) with wheels. I was covered only by a blanket and wheeled to the shower room. It was suggested that I continue to use the soap and shampoo I would at home. This way I had familiar smells around me. The nurses would shower me as I lay on the shower bed since I couldn’t do it myself. Without fail the nurses would comment on how nice my shampoo and soaps (Aveda) smelled. It did provide a small comfort to have the familiar around me during a very unfamiliar time.
After personal hygiene was taken care of and my hair was brushed the next thing on the agenda was to lie in bed watching TV. Sometimes my TV was interrupted by a therapy team. Physical Therapists and an occupational therapist would come to my room for 1 hour of therapy. My very first therapy was full of tears it was then confirmed for me(the doctors likely knew, but I didn't).....I couldn’t sit on the side of the bed without falling over.
Before their initial appointment it hadn’t occurred to me to even try. I guess on some level I knew that that would pose some problems. The cause of the instability was the fact that I had NO balance.
Over time I progressed to standing with support. I would look out the window and see the parking garage and busy road. This road was significant since I would travel either running, walking or via bus along this road to get to University. How some things come full circle? I was once a student at the campus and would trek around University Hospital to get to my classes. Now I was a patient within the building that was a nuisance to walk around. (What I would give to be able to walk on the campus, even in the cold and slush)
Therapy was pretty basic. Stand in place or move and\or stack cones. Never both at the same time, that would be too complicated. Stacking things was much like the games I would get my younger brother to play when he was a baby......This is what I was reduced to. The thing that stands out-is that my brain was alert and could recognize the activity was very simple and infant like but my body would not cooperate and easily do the task. My movements were very jerky and erratic and would even miss the target altogether.
After therapy I would have an afternoon of more TV, except I am not into soap Opera’s so TV wasn’t that exciting. I’m not sure what I watched- likely HGTV. What I am sure of is the countdown would have begun for visiting hours. Occasionally I would have someone unexpected in the afternoon. A friend or someone that knew m,e that was at the hospital for another reason and would stop by. Later on after work it was mostly my family; Mom, Dad, and Mike. After supper time ( not mine since I wasn’t eating) Jon might come if he wasn’t working. This was also a time when others would come. So I enjoyed the evenings since they were filled with variety. The early afternoons was a time I had to amuse myself, even though it was only a few hours, went so slooww and dragged on forever.
It occurred to me in early days I realized I was not dressed for visitors. I only had the pathetic hospital gown and NO bra. I was self conscious about that for a bit but that thought went away when I started being dressed in some of my comfy clothes that I would have worn bumming around the house but still No bra. That must of been of serious importance since in my delusional haze I had a dream I ran home and got one.
Going to the bathroom was out of the question so I had to wear adult diapers. I got to the point that I would hold it almost all day because it was embarrassing to alert the nurse I needed to be changed. Just admitting that is embarrassing but that was the reality. It wasn’t until I had been discharged from all hospitals that I thought about an alternative-the bedpan. When I was admitted into Parkwood I was put on the toilet on a regular basis (when I had to go). But due to my no balance the nurse stayed with me. Bowel movements became less private.
At the time it felt like hospital stays were going to be create huge hole in my life and at the time were consuming my lifebut looking back on it...it’s just a small blip. I've now learned not to sweat stuff because it will improve OR with the passage of time seem less and less important in the grand scheme of things.
Tuesday, September 7, 2010
Motivation
At a time when things were looking very bleak, a few questions nagged at me. The first was; how much better was this going to get? At that point I was still lying in a bed with limited movements, my talking was jumbled, I wasn’t eating. People would try to reassure me that things would improve. They were right, but at the time I had a hard time believing them. However those stories would echo in my mind as a collective unit that things can get better.
In the beginning my gut response to the thought it would possibly was to cry (when wasn’t it). I thought ‘Here I am lying in bed with limited movement, how was it going to get better?’ It appeared to me that that was it. I wasn’t moving part of my body, breathing on my own, nor talking without effort. It was going to get better!? But people persisted not knowing my inner thoughts that would refute their well meaning success stories. I’m glad they shared these stories since they later had an impact on my recovery. Eventually I started to believe them.
It was when I was transferred to the Rehabilitation hospital (Parkwood) my attitude had swung to more consistent positive mindset. Fortunately the many success stories coupled with the following gave me additional motivation; I shared a room with a woman 88 years old. I was told she came to the hospital in bad condition and was being discharged using a walker. I thought this place performs miracles. In addition an article was published in the newspaper ranking Parkwood hospital as the best stroke recovery hospital in Canada. I clung to those two positive thoughts daily.
The most important motivating factor in having a positive attitude was meeting with a woman around my age who had experienced a stroke and had a recovery that I could aspire and strive for. Her father told me that I was further along than she had been at the same time in her recovery. The most significant event that made me so hopeful was just meeting her and seeing her walk towards me as I sit trapped in a wheelchair. It really did emphasize the results with my own eyes. It gave me the inspiration to push forward with an idea of what could happen. I had the all important hope now I just had to believe it and work hard. The skys the limit. I belive now more than ever, that you can achieve whatever you set your mind to!
In the beginning my gut response to the thought it would possibly was to cry (when wasn’t it). I thought ‘Here I am lying in bed with limited movement, how was it going to get better?’ It appeared to me that that was it. I wasn’t moving part of my body, breathing on my own, nor talking without effort. It was going to get better!? But people persisted not knowing my inner thoughts that would refute their well meaning success stories. I’m glad they shared these stories since they later had an impact on my recovery. Eventually I started to believe them.
It was when I was transferred to the Rehabilitation hospital (Parkwood) my attitude had swung to more consistent positive mindset. Fortunately the many success stories coupled with the following gave me additional motivation; I shared a room with a woman 88 years old. I was told she came to the hospital in bad condition and was being discharged using a walker. I thought this place performs miracles. In addition an article was published in the newspaper ranking Parkwood hospital as the best stroke recovery hospital in Canada. I clung to those two positive thoughts daily.
The most important motivating factor in having a positive attitude was meeting with a woman around my age who had experienced a stroke and had a recovery that I could aspire and strive for. Her father told me that I was further along than she had been at the same time in her recovery. The most significant event that made me so hopeful was just meeting her and seeing her walk towards me as I sit trapped in a wheelchair. It really did emphasize the results with my own eyes. It gave me the inspiration to push forward with an idea of what could happen. I had the all important hope now I just had to believe it and work hard. The skys the limit. I belive now more than ever, that you can achieve whatever you set your mind to!
Monday, August 30, 2010
Laughter the Best Medicine
My niece and nephew have always been a source of laughter and Joy. When they lived closer I would make special trips just to visit and get my “fill”. They always make me laugh with what they say or do. They were faced with a very grown up issue at a very young age. Andrew was only 5 and Abbey only 3. They proved to be resilient and took it all in stride. As far as I know they haven’t been scarred from this event.
When they would file in the room I would be so happy I would cry. One particular visit stands out in my mind. Aaron, my brother, had Andrew in his arms. Behind him strode a little girl(Abbey) with a mass of curly hair bouncing with each step. Abbey had a purpose that showed in her long strides and pumping arms. Amanda his wife pulled up the rear carrying coats and bags.
Andrew being older and having more of an understanding of the gravity of the situation had a cautious approach. This is completely reasonable since they were entering a hospital room with beeping and hissing machines running to and from what was the fun aunt. Not the motionless crying aunt. Prior to the stroke we would be played tag, or little sticks hockey or any number of kids games or toys. Now I was lying on a bed, just happy to see them. Abbey on the other hand was just fearless and did not show any nervousness. Often she would sit on the bed with me completely unafraid and curiously tryed to push at the buttons that would adjust the bed.
Abbey is the cause of gales of laughter. She has proven this time and again over the years with her dramatic and no nonsense personality. Unfortunately in this situation I don’t fully remember the details but it is funny nonetheless. My sister in law has filled me in and we have laughed about it since.
The observation room wasn’t equipped for patients having visitors, therefore there weren’t chairs. A little girl would need to stand on a chair or sit on the bed to see, so the only logical place was to sit at the foot of the bed. At that time it was Amanda and Abbey. The visit was usual; they came to see me lying in the bed waiting for me to pull through....It was a serious time. At the end of the visit it was discovered that Abbey had been sitting on my pee bag with everyone being completely unaware and proceeding as usual.
Fortunately as easily as I cry I also laugh. It seems like I find the funnier things in life even in terrible situations. I know a good laugh makes me smile and can make the grave situation not so intolerable. It helped me deal with the crap, and there was a lot of crap. Instead of looking back on what a terrible time it was, Amanda and I have chosen to laugh at it instead. It is just more fun. This time it is tears of laughter not sorrow. Thanks Amanda
When they would file in the room I would be so happy I would cry. One particular visit stands out in my mind. Aaron, my brother, had Andrew in his arms. Behind him strode a little girl(Abbey) with a mass of curly hair bouncing with each step. Abbey had a purpose that showed in her long strides and pumping arms. Amanda his wife pulled up the rear carrying coats and bags.
Andrew being older and having more of an understanding of the gravity of the situation had a cautious approach. This is completely reasonable since they were entering a hospital room with beeping and hissing machines running to and from what was the fun aunt. Not the motionless crying aunt. Prior to the stroke we would be played tag, or little sticks hockey or any number of kids games or toys. Now I was lying on a bed, just happy to see them. Abbey on the other hand was just fearless and did not show any nervousness. Often she would sit on the bed with me completely unafraid and curiously tryed to push at the buttons that would adjust the bed.
Abbey is the cause of gales of laughter. She has proven this time and again over the years with her dramatic and no nonsense personality. Unfortunately in this situation I don’t fully remember the details but it is funny nonetheless. My sister in law has filled me in and we have laughed about it since.
The observation room wasn’t equipped for patients having visitors, therefore there weren’t chairs. A little girl would need to stand on a chair or sit on the bed to see, so the only logical place was to sit at the foot of the bed. At that time it was Amanda and Abbey. The visit was usual; they came to see me lying in the bed waiting for me to pull through....It was a serious time. At the end of the visit it was discovered that Abbey had been sitting on my pee bag with everyone being completely unaware and proceeding as usual.
Fortunately as easily as I cry I also laugh. It seems like I find the funnier things in life even in terrible situations. I know a good laugh makes me smile and can make the grave situation not so intolerable. It helped me deal with the crap, and there was a lot of crap. Instead of looking back on what a terrible time it was, Amanda and I have chosen to laugh at it instead. It is just more fun. This time it is tears of laughter not sorrow. Thanks Amanda
Monday, August 23, 2010
When will I talk?
The tube in my throat was scheduled to come out. I would finally be able to speak! Say goodbye to the one sided conversations where visitors would talk to one another and I would follow along quietly participating in the conversation in my mind. I finally would actually be able to speak the things only I could hear.
The conversations sounded like me but no one could hear but me. A calming one sided conversation I had with myself; was my voice telling me everything was going to be fine. FINE????!!!! I am not sure why I was telling myself that when things were at their worst. Basically I was just lying in a bed. At the time I thought my life was over. For about two months I did a lot of crying. At least until things were getting better. Life as I knew it was over. But you know....... this life can be a struggle but it isn't so bad. I try to make the best of it.
The thought of the tube coming out had me scared to tears.(of course) Was it going to hurt? More importantly, what if I wasn’t going to be able to breathe? That was an irrational thought since the doctors had thought of that. To prepare, over the course of a week or so, a plug was inserted into the tube forcing air in through my mouth and nose instead of the tube in my throat. Every time the nurse would enter the room with the pink coloured plug I would panic a little in my mind. However throughout the day I wouldn’t give it a second thought.
Tears ran down my face onto my pillow just before the tube was painlessly removed and a band aid was placed over the hole. A band aid? Leaving a scar that is a permanent reminder. Having it removed was a snap so I am not sure why the tears? It was likely the fear of the unknown?
The biggest problem was not the removal. It was the fact that I still couldn’t talk. I would move my lips but nothing would come out. MEEE NOT TALK??!!! That is unheard of. (I’m a talker) So the one sided conversations would continue. Visitors were talking over me, about me, and no one heard what I had to say.
Thankfully only a few days later I spoke. It wasn’t clear and has taken years to get it to this point. But I could talk. What a relief. I never really thought I wouldn’t talk. However the unthinkable had happened so I thought what if I didn’t?
I consciously made my first word be my then husband’s name. Mike. I wanted to surprise him with something positive when he came in the room. It was far from clear but eventually I would be able to have a conversation with him. Later on a friend told me she heard him say that all he wanted was to be able to sit and talk to me. Well that came true and........
Mike told me that he would stand outside of my room listening to me practice. In order to make my stay more comfortable pictures were brought in and posted along the shelf facing me. This was supposed to give me a feel of home. To practice I would say the names of the people in the picture. Andrew, Abbey, Fisher (my dog at the time, she’s dearly departed and I have a new dog) Mike, Jon, Aaron, Amanda..... you get the idea.
As the months and years have passed, I have gained an inflection, better rhythm and don’t to catch my breath when talking. It is not so monotone and flat. More like before. A few people have even mentioned their surprise on how much better it has gotten. I even sounded like the old me when I had a cold. I didn’t really want to get over that cold.
However I am still aware that it is far from perfect. I need to be careful not to talk quickly. Which is hard since my brain will move fast. When I’m tired, laughing or crying it makes it more difficult to hear. The biggest obstacle to learning to speak clearer is that the words I am trying to say are perfectly clear to me in my head but not to the listener. So I am not aware when it is not coming out right unless I see a quizzical or a blank stare—I’ll then repeat myself and speak slower and enunciate.
The conversations sounded like me but no one could hear but me. A calming one sided conversation I had with myself; was my voice telling me everything was going to be fine. FINE????!!!! I am not sure why I was telling myself that when things were at their worst. Basically I was just lying in a bed. At the time I thought my life was over. For about two months I did a lot of crying. At least until things were getting better. Life as I knew it was over. But you know....... this life can be a struggle but it isn't so bad. I try to make the best of it.
The thought of the tube coming out had me scared to tears.(of course) Was it going to hurt? More importantly, what if I wasn’t going to be able to breathe? That was an irrational thought since the doctors had thought of that. To prepare, over the course of a week or so, a plug was inserted into the tube forcing air in through my mouth and nose instead of the tube in my throat. Every time the nurse would enter the room with the pink coloured plug I would panic a little in my mind. However throughout the day I wouldn’t give it a second thought.
Tears ran down my face onto my pillow just before the tube was painlessly removed and a band aid was placed over the hole. A band aid? Leaving a scar that is a permanent reminder. Having it removed was a snap so I am not sure why the tears? It was likely the fear of the unknown?
The biggest problem was not the removal. It was the fact that I still couldn’t talk. I would move my lips but nothing would come out. MEEE NOT TALK??!!! That is unheard of. (I’m a talker) So the one sided conversations would continue. Visitors were talking over me, about me, and no one heard what I had to say.
Thankfully only a few days later I spoke. It wasn’t clear and has taken years to get it to this point. But I could talk. What a relief. I never really thought I wouldn’t talk. However the unthinkable had happened so I thought what if I didn’t?
I consciously made my first word be my then husband’s name. Mike. I wanted to surprise him with something positive when he came in the room. It was far from clear but eventually I would be able to have a conversation with him. Later on a friend told me she heard him say that all he wanted was to be able to sit and talk to me. Well that came true and........
Mike told me that he would stand outside of my room listening to me practice. In order to make my stay more comfortable pictures were brought in and posted along the shelf facing me. This was supposed to give me a feel of home. To practice I would say the names of the people in the picture. Andrew, Abbey, Fisher (my dog at the time, she’s dearly departed and I have a new dog) Mike, Jon, Aaron, Amanda..... you get the idea.
As the months and years have passed, I have gained an inflection, better rhythm and don’t to catch my breath when talking. It is not so monotone and flat. More like before. A few people have even mentioned their surprise on how much better it has gotten. I even sounded like the old me when I had a cold. I didn’t really want to get over that cold.
However I am still aware that it is far from perfect. I need to be careful not to talk quickly. Which is hard since my brain will move fast. When I’m tired, laughing or crying it makes it more difficult to hear. The biggest obstacle to learning to speak clearer is that the words I am trying to say are perfectly clear to me in my head but not to the listener. So I am not aware when it is not coming out right unless I see a quizzical or a blank stare—I’ll then repeat myself and speak slower and enunciate.
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