I obviously have a blog, but the last post was in 2014, so 4 years ago!! So I am dusting off the blog, and posting here. Who knows if I will actually keep it updated, or even post on it at all!! Regardless, you can find my story on here.
This will give the story of how I got sick, some science, so you can understand what I got, and life lessons that I learned, that I think we can all benefit from. Here it is:
My Journey
Cokeville Fireside 9/25/2018
Introduction:
I am Shanna Taylor. I’m 28 & I had a stroke. Yes, a stroke!! I was 27 when it happened. In November of last year, 2017. I will get to my story in a minute. But I first wanted to get into some science! Yes, I know, BLAH, science. But, I didn’t know what a stroke was, or what Meningitis or Encephalitis was & I had all 3! I had NO idea what I had. So, let me tell you what they are first, and then I’ll get to my experience right after.
Meningitis is an inflammation of the three membranes that cover the brain. The fluid inside the membranes goes into the spine, which is called spinal fluid. Meningitis can occur when fluid surrounding the tissues become infected. Which happened in my case. There are usually 2 types- viral and bacterial. Bacterial symptoms are usually more severe. They both can result in death. 20-50% of adults who have this condition die. Even with proper treatment.
I had bacterial meningitis. So, it’s basically when the lining of your brain swells because of infection. I had an infection from strep throat. The infection was called strep. They think it was carried into the fluid around my brain by the ear infection I had. The infection got into my blood stream, by the ear infection and traveled to my brain and caused swelling. Meningitis can cause deafness/hearing loss, balance, seizures, paralysis/spasms, speech problems, loss of sight/vision problems. That is just the effects that can happen on ONE of the THREE things I had. So, it’s a huge miracle that I am here speaking to you, and not with a whole lot of permanent effects. MacKay, my husband, has a friend at work who has a wife that had Bacterial Meningitis and Encephalitis, like me, but not a stroke. She is in a wheel chair, has seizures, and a lot of complications from the sickness. So, he thought that’s how I would be. It’s a HUGE miracle that I am doing so well.
Encephalitis is inflammation of the brain. Rarely life-threatening. Usually from an infection or the body’s immune system trying to get rid of the infection, and mistakenly attacking brain tissue. (Lupus) In my case, it was from an infection. I got Encephalitis because the infection spread from the lining of the brain, to my brain, causing it to swell. So, basically, it’s when your brain swells.
A stroke is widely known; however, I didn’t know what it was. I thought it was something like a heart attack, and that it was bad to get, but I didn’t really understand it. So, let me explain it a little, in hopes to have you guys understand it more!
A stroke is a heart attack for the brain. The brain needs oxygen to operate at high level. The oxygen reaches the brain through blood that is being pumped by the heart. A stroke is a condition that occurs due to a blocked or burst blood vessel in the brain. When blood vessels fail to deliver oxygen-rich blood to the brain, parts of the brain start to die. Within minutes, brain damage can begin and the parts of the body that were controlled by the impacted area of the brain will stop working.
A stroke is considered a severe medical emergency. Usually strokes are caused by blood clots or blockages in the veins. In my case, all blood flow was restricted because of a swollen brain, and so oxygen flow was very slim, thus causing a stroke. The stroke didn’t just affect one side, like it does with blood clots, but my entire brain was affected because the lack of oxygen was to my whole brain. It affected the right side of my body. Those parts went limp and would not work. However, because it was my whole brain, I have some effects on my left side too. More on that in a minute.
Alright, we will start at the beginning. Before all of that happened, I was just on a cruise ship with my husband and son. A 5-day cruise to Cabo, Mexico. Our boy was 4, at the time and we left our little girl at home with my parents, she was 2. It was a company cruise, so MacKay knew a lot of people there, including his sister, who also works there, and her husband. Before we got on the ship, we spent a day in L.A. We drove all night to get to L.A. When I woke up early the next day, in the car, I felt a tickle in the back of my throat. I thought a cold was coming on, and I was bummed it was coming on for the cruise. I had MacKay go to a drug store close, to get some emergen-c and vitamins to fight it. Some people thought I caught the infection on the cruise but no, I took it with me.
When we got on the cruise, I did everything we had planned and got to have a lot of fun, I was just fighting a “cold” the whole time. It progressively got worse. We went to Cabo, Mexico. We did our excursions and had lots of fun on the beach. That night, I remember watching Wonder Woman on the big screen on the top floor of our ship and it hurt my head too bad that I had to turn and watch the reflection from the glass wall. That should have been my first indication something was terribly wrong. MacKay had to help me back to the room, I leaned on him quite a lot, not feeling well at all. My ear was hurting. I remember MacKay saying to me; “I wish you weren’t so tough and would just go to the doctor.” I laughed it off and said it was too expensive (It would be thousands of dollars), and that I didn’t think I needed it. I really wish I would have gone!! Hindsight.
The next day (3 days into the cruise) we were to go back to Cabo and sight see. I was feeling crummy, so I sent MacKay and Brent off the ship without me. I had thrown up the night before, and just didn’t have it in me to explore. When they were gone, I stayed in our room and tried to sleep, but my head hurt too bad. So, I finally gave up and took a shower, and I remember I just sat down and let the water just poor over me. I felt terrible. They eventually came back and wanted to go eat lunch. I told them I didn’t feel well enough to go out, but to bring something back for me. They brought me back a panini and I remember it tasting so dry and bland, I threw it away. That was my last memory for 6 weeks. A nasty panini!! MacKay and my family have since told me what happened, so I will fill in the blanks. My head hurt so bad that he left a note for his company’s doctor to come over. She was right next door to us, (which is miracle 1) His company has two in-house doctors that were on the cruise with their spouses. (miracle 2) Tamera got the note and came over. I was awake and talking, so I’m not sure why I can’t remember. She gave me a pain shot, and I was able to fall asleep right away. MacKay tried to wake me after a few hours and he said I was snoring, but my eyes were half open. He couldn’t arouse me, so he ran to get Tammy. He thought it was a reaction to the pain shot I had been given. She came in and tried to talk to me, but said I was in a manic state. She got the other in-house doctor (whose room was only 3 doors away from ours) and he came in. Mark shined a flashlight in my eyes, and they wouldn’t dilate. One eye was also different than my other eye, which worried them. They knew that was a brain issue, because my eyes didn’t dilate, and told MacKay to get me to the cruise doctor right away. At some point, I must have been somewhat awake, and Tammy asked me to put my chin to my chest. I couldn’t do that. That’s when she suspicioned that I had meningitis. (The swelling of the lining of the brain) Her sister had gotten it a few years ago, and that was one of the things that showed it may be meningitis. The reason you can’t touch your chin to your chest is because the swelling in the lining is too much, and you cannot do it. I started getting delirious then and flailing around (which must have been terrifying) They rushed me to the cruise hospital, where I saw the doctor there.
Mike, my brother in law took Brent, my son, around the ship, so he didn’t have to witness any of that. My sister in law was with MacKay and I. MacKay wasn’t mentally in a place to give a priesthood blessing, he had some shock, but he wanted me to have one. So, Jenny went to the front desk and asked them for one of his good friends’ room number, so she could call him. The front desk did not want to give it to her, stating that it’s against policy to do that. Jenny told them that she had a very sick girl in the hospital and needed to get ahold of Terry Menlove. He is like a priest in our religion, and we need him to give her a blessing. They reluctantly gave her the number. (Miracle #3) He happened to be in his room (Miracle #4) which does not happen often on a cruise, and he picked up on the second ring. She quickly explained the situation and he said he would be right there. He beat Jenny to the hospital when she was only 1 floor away, and he was several. He gave me a blessing and blessed that the doctors would know how to treat me. Up until this point, there was just speculation. As soon as the blessing ended, the cruise doctor walked in and said; “I have this gut feeling that she has meningitis. I am not supposed to do it on speculation, but I am going to give her the antibiotic.” (Miracle #4) See, to tell if its meningitis, you must do a spinal tap. The infection will show in the fluid. They couldn’t do that on the ship. The doctor decided to give me the antibiotic anyway, and he saved my life. I would have died if he had waited till we were on land to do the spinal tap. The lining of my brain would have kept on swelling. So, call it a "gut feeling" but I know what it was. I have no doubt in my mind that the blessing was a way we communicated with our Savior, and he heard our prayers and the spirit whispered to the doctor what to do. God hears us. He loves us. He answers prayers. Sure, without the blessing, He would have known about my struggles, but He was waiting for us to call on him and believe He could do it.
“…Knock and it shall be opened unto you” Matthew 7:7
We have to knock. We have to seek HIM out. Yes, he already knows what we are struggling about, but he is waiting for us to ask Him for help. WE HAVE TO KNOCK.
MacKay is not a facebook guy, but he posted this for me.
Above is the timeline. Each hospital stay, how much I can't remember, etc.
I got to the California Hospital on November 17th. My father in law was able to come join MacKay. Jenny and Mike took Brent home to my Mom. A few days after I was in the hospital in California, my family was able to come. My Mom, Dad, sister and brother. They were all sick with worry, and not knowing if I was going to live. Again, I can’t even imagine what they had to go through. For them to wonder if they would lose a child, a sister. I don’t even want to think about it. My father-in-law said that it was amazing because I was doing really bad before they got there, frothing at the mouth and it really scared him and MacKay. But, when my family got there I started to improve. When they had to go home, I declined. My Mom said that when my Mom and Dad came the second time and MacKay went home so he could go to work, I got better when my parents came and declined after MacKay left. Family and relationships are a huge thing. And they were obviously big in my recovery.
I slept for almost 23 hours a day. My brain was healing and still very swollen, so I wasn’t awake much. But when my family got there, I recognized and named each of them, which they were ecstatic about, and I was quite annoyed, saying; “I know you guys!” My family came for 3 days. While they were there lots of things happened! I had a lot of experiences with the other side, and other things that would just take too long to explain here! I will share a few experiences with you though.
One of them is: when my Mom and Lindsay (my sister) walked in, I was awake and staring at a corner. I looked over to them and said; “Hi” then turned my attention back to the corner. My Mom asked what I was looking at. I said that there was a lady in the corner. I noticed how puzzled they were, and I asked; “You can’t see her?” My Mom said they couldn’t and asked who she was. I said that I didn’t know her, but that she knew MacKay and I. We still don’t know who she was. I think, that the veil is very thin. We are not alone. There are those on the other side, either felt or seen, that are responsively helping. There are angels coming to help us in our time of need. They are not always seen, but they are there, helping each of us in dark times. They want you to succeed! They want us to get through this hard time. They are there to help us.
Another time my parents came into my room in the morning. Usually I was asleep, but this time I seemed very anxious and excited to talk to someone. When they asked me what I was thinking about, I said, very excitedly “They are being nice to my kids.” My Dad thought, “How does she know that?!” We think now that someone from the other side must have known I was worried about them and came to tell me they were alright. When I had been home for a month or so, probably February, I was getting ready at my desk in my bedroom. I have a picture of my Grandma Henderson on my desk.
My, at the time, 2-year-old daughter asked who that was. I told her Grandma Henderson, she said; “Oh yeah! She held me and talked to me and she is nice!!” Jaylee was like 11 months old when her Great Grandma had died. There is no way she would remember her, and up until this moment had always seen this picture on my desk but had never said anything about remembering her. I was shocked. I think both of my grandmas were there comforting my kids while I was away. It is a comforting thought. You guys, God cares. He sends people to help us. He loves each one of us like our own loved ones do, even more actually! He responds to prayers, that we don’t always know all the answers to or even why. Sometimes even the silent worry we have, he knows about. I never said a prayer for my kids, and that they would be ok, I was too sick to even think clearly. But God heard my silent worry. And he sent people down to watch over my kids. He knew that’s what I needed.
My family left after 3 days. When MacKay had to go back to work, he had my parents come back down, and he drove home with his Dad. Around that time, they told my family I had also had a severe stroke. Up until that point (about 2 weeks into the hospital stay) the doctors didn’t tell them that I had a stroke, they said I had stroke-like symptoms. But in fact, I had a major stroke. However, even though I was in the hospital while it happened, and they didn’t catch it, the medication they would have given me, they were already giving me for Meningitis and Encephalitis. So, it didn’t make it worse! Just the knowledge wasn’t there. What a miracle that they were already giving me that medication!! I was transferred to Utah after 2 weeks and 1 day in the California Hospital.
I flew by a tiny plane with my Mom, and my Dad drove their car back. I was transferred to the Specialty Hospital by Provo Canyon.
I still slept a lot but woke up more there. They started getting me out of bed to do Physical Therapy. My first PT was just wheeling me in my wheelchair downstairs and sitting me in front of the window in hopes that the sunlight would wake me up. It did not. You can see in the picture that I had to have a board for my head or it would flop. I lost my muscles to hold my head up. I finally started to wake up for PT when they tried to wake me up. One PT session that I remember is me on a hand & foot bike. They had to tie on my right hand, because it would just fall off, I couldn’t grip at all. My PT thought I would go about 2 minutes, I went 20 minutes and then was tired. My PT was so excited and shocked! To get me going my sister-in-law; Sara told me to say something that I wanted every time I pedaled one hand. It started out as Chips and Salsa, lemon bars, and it quickly turned into me saying; “Brent, Jaylee, Brent, Jaylee” They became my motivation. I wanted to get back to them. This still gives me chills. They were my motivation. My kids.
The brain injuries that I had, affected my speech. I couldn’t talk very well, or I would say words that were close, but not quite right. I had one of my first PT sessions where I watched other patients play bowling on the WII. I sat there and thought, all these people are old, and I can’t do what they are doing! That’s the first time I realized how bad it was. After that, I was wheeled back to my room and right before I fell asleep, I told my parents; “I didn’t realize the extension” and then I passed out. My parents talked about what I had meant, and they concluded that I meant that I didn’t realize the extent of my condition. That’s the exact moment when it hit me. I didn’t realize how bad it was. I hadn’t tried to sit up, I was sleeping most of the time, but when I started trying, I would just tilt over. I didn’t realize that I couldn’t lift my right hand, or my right leg. I couldn’t stand, I couldn’t walk, I couldn’t feed myself, shower myself. Think right. It was when everything just hit me like a ton of bricks. I couldn’t do BASIC things.
My PT, Drew was able to get me to stand one day. With help, of course, and it was really scary. I thought I was going to fall! I have a video I will show you, of the first time that I stood up. You can see on my face my terror, and then acceptance. You can also see how hard it truly was for me.
In PT I had to play the WII (which I hated because I hate video games) And I couldn’t stand on the foot pad. So, Drew placed it underneath me as I sat. The object of the game was to sit and shift my weight to miss objects in the water, and to also not hit the bank. I was in a boat. It was extremely hard for me. You can see his excitement as I would do something good. He had to get me side grab bars because it was hard for me to not tilt to the side, so those helped me stay up-right. But I love this picture of his excitement. It reminds me of my excitement when my kids would do something relatively simple for us, but incredible for them! It just touches my heart that there are people out there, who are rooting for you. Helping you do things that you can’t. And getting so excited when you make progress!!
There were certain things that I would say a lot. One thing I came to say all the time was that; “It’s trivial” My mom would ask if I wanted her to do my hair, because she knew I liked that, and I would respond with; “It’s trivial” She asked me another time if I wanted to do my make-up, I said; “It’s trivial”.
I usually care about my appearance and tried to look nice. But things were put into perspective for me. The things I usually cared about were just “trivial” things. When things happen to you, you find out what really matters. I had always heard things like that but had never really understood it until then. I started caring only about the things that actually mattered; my husband, my children, my family, my recovery. Everything else no longer mattered at that point. It’s an important lesson for all. Put our time in things and people that matter the most to us, don’t spend our time and effort on things that we think other people want us to do and what they think. Find out what matters to YOU and spend time doing those things. You will be so much happier, I promise! Think of those things that you spend time doing, but don’t LOVE it, and think; “It’s trivial!”
· Compassion. I see people now with a little hobble in their step and I wonder what their story is. I have compassion toward them, I want to talk to each of them.
· Love & appreciation for life.
· Miracles are real, and they happen all the time.
· A deeper love for those who helped me.
· Love & gratitude for Nurses. They are the real heroes!!
· Awe at the knowledge of PT’s OT’s and Speech therapists. And amazement at their compassion and love!
· A more positive outlook.
· Not be a Sunday Mormon. That I need to LIVE what I believe. Pray more, read and STUDY my scriptures more. Lean on my Father in Heaven more.
· To give back & serve more.
I was transferred to the Utah Valley Hospital after 2 weeks in the Specialty Hospital. They had a rehab center and I was able to be transferred. I spent the majority of my time there. 5 weeks and 1 day. I missed all the major holidays! I missed Thanksgiving, Christmas, New Year’s Eve and New Year’s Day. I also missed my husband’s birthday! When I was at the Utah Valley Hospital, they started giving me medication to wake me up. To be accepted into that Rehab Center, I needed to be able to do, at minimum, 3 hours of therapy. But I slept SO MUCH. They had to wake me up, so I could perform. However, I was able to work up to 5 hours of therapy a day!
PT is Physical Therapy. My Physical Therapist was named Tyler. He shares my love for laughing, and so we had a good time with joking back and forth. One day, he was a little late picking me up at my room. When he walked in, I said; “Thanks for gracing us with your presence!” He laughed and said that I wanted a hard session!! The next day when he walked in, I made sure to grovel and say that the best Physical Therapist just walked in. He again laughed and said I wanted an easy day. We had a fun relationship, and always joked about his love for the Utes and my love for the Cougars with the inevitable rival. (GO BYU!) When I left the hospital, my Mom got some little gifts for the nurses and therapists that helped me. I gave Tyler a BYU key-chain, and then gave him a UTE shirt. But after I gave it to him, I told him I had found it in the garbage. hehe
He worked hard with my balance, leg work, core work, getting me to walk again, run again, etc. It was really challenging! I used to be quite fit. I played volleyball, did cheerleading, and ran track. To not be able to do simple things, like roll over was frustrating. Usually after the 3rd time of trying something, I would get it. So that was encouraging!! I just had to work my tail off!!
This was me walking for the first time, over Christmas break. As you can see here, it was really difficult for me. I was so glad that those bars were there for support! Isn’t that how the Lord is for us though? A support to grab onto when we are unsteady? That’s kind of a cool way to think about it. Tyler, my PT told me that there was nothing wrong with my arm or leg, but the connection from my brain to my right side. I just have to train it to remember that I actually HAVE a right side. That really helped me understand that I must do things over and over to train my brain. Eventually it would start to remember.
He also told me something that really stuck with me and helped me learn to walk again. He knew I was a mother, so he asked if I had building blocks at home. I told him we did. He then compared walking to those. He said; “You have to stack the blocks. If you bend your leg and try to put your weight on it, you will fall, just like if you put too many blocks and the base isn’t strong, it will fall.” Something in that just CLICKED! It really helped me to walk correctly. I think the same concept is also true for our testimonies.
We have to “stack the blocks.” We can’t jump the gun and say that we have a testimony of the Book of Mormon or Bible if we have not read them. We need to stack each building block of our testimony piece by piece. We need to have testimony of the Holy Ghost, that the spirit can guide you, that families can be together forever, the Atonement, personal revelation, the covenants we make, all of it. We need to be able to stand on our own, not relying on your parents’ testimonies. You need to have, now more than ever, a testimony before you leave home. We can’t get up in testimony meeting and say; “I’d like to bare my parents’ testimony…” We need to study and pray to find our own. If we try to skip steps, we will fall. Tyler also said that I was too young to learn to walk with a cane or a walker. He wouldn’t give those to me. He wanted me to learn how to walk without relying on things to help me. I am forever grateful that he did that. I know that one of the biggest reasons that I can walk this good, is because he taught me to do it without relying on other things. Just my knowledge of “stacking the blocks” and my legs. That’s it. It again reminds me of building our own testimonies. A walker or cane wasn't there for me to rely on, my husband, my Mom, my Dad couldn’t do it for me, I had to do it on my own. We need to learn to rely on ourselves. Then we will be able to walk better, more confidently, more assuredly. We will trust ourselves without relying on someone else.
I was able to start jogging, and this was really scary for me to try but it felt really great to do!! I asked to do it again and again!! As you can see, I could barely lift my feet off the ground then! They also worked on stairs. They had a portable wood stairwell I practiced on. I went from using the railing, to not using the railing. I did NOT like the feeling of falling (even if my PT was there to catch me) and I would grab out for the railing when I stumbled. It was a process to get me not to rely on it. It was my crutch. Tyler knew that I wouldn’t progress unless I learned to do it on my own. He was 100% correct. I was relying too much on the railing and not enough on myself. That same concept can be applied to testimonies. If you rely on others; your parents, peers, etc. then you can’t progress. You must work and rely on yourself. It doesn’t just come on its own. You need to work on it to be able to rely on it. The railing is always there, in case you stumble, but you can rely on yourself to climb until you can’t anymore.
I also worked on getting up from the ground without holding onto something. That is still a difficult thing for me. I can do it, it’s just a bit shaky. Walking around “toys”, (small cones and things that they had around the room) picking up “toys”, having to carry around a large bean bag, as if it was my 2-year-old, etc.
My two-year-old came in during PT one day, and I was able to practice picking her up. You can see how difficult it is for me! Now, I can throw her in the air! I did all of that in physical therapy and it physically got me ready to come home.
OT is Occupational Therapy. They worked with my arm, gripping, wrist strength, fine motor control, etc. This is where they work with the things you normally do for your occupation. Since mine is staying at home with my kids, we did lots of laundry folding, meal planning, writing out how I would need to simplify, or change things that I used to do without thinking about it. We also did things on the computer to have to re-learn to type. Played games like Quirkle and Jenga to work on problem solving and fine motor control. I found that my left hand would try, without thinking much of it, to do the game piece moving. I literally had to sit on it as to force my right hand to work. It reminds me of not using the easy way. We need to not rely on the easy way. The easier and faster route was to use my left hand. And boy, did that hand want to!! We have to literally set us up for success by “sitting on our hand” and making ourselves go the slower, not as easier, route to teach ourselves the right way to do things.
Speech is Speech Therapy. They did a lot with working my brain. Problem solving, writing, spelling, attention, etc.
Speech was definitely the hardest for me. It would give me headaches for the first few weeks. But that is where I was able to relearn to write, problem solve, all of that! They were a God-send. But, it was hard work!! Give me physical things to do, and I can do them all day! I was coached my whole life, so if you tell me to jump, I ask how high with tears streaming down my face! However, the speech work was exhausting to me!! This quote is so amazing, and really spoke to my heart. If I were to have just thought; “Well this is the way I am now!” I would not be here today. I would be in a bed like my California doctors said I would be. Instead of trying to be ok with my situation, I was determined to change it. I never wondered; “Would I be able to do this again? Would I be able to play volleyball again? Sing again?” I just thought it would take some time to do those things. I wonder if I would have thought that, would my recovery be different? Would it be this amazing? Probably not. Anyone can better their situation by choosing to be positive then by choosing to be negative. I say choose because it is a CHOICE. Choose to be positive, no matter what life throws at you!!
I talked to my Outpatient OT- Leslie (when I was out of the hospital, I went back for a few months to get therapy) She said that in her line of work, positive people get farther in recovery. If you choose to be bitter, that won’t help you at all, it will only stop your progression. Choose to be grateful instead. Grateful for the things that you CAN do. Grateful for the miracles that the Lord gives you every day. Even simple things that we often overlook. Like our families, or that we can walk, jump, laugh. Every simple thing that we can do, may not be so simple to someone else.
I was released from the Utah Valley Hospital and I walked out of the hospital. I didn’t have a wheel chair, I didn’t have a walker, not even a cane. I just held my husband’s hand and walked out. It is really amazing that I was able to come so far. Tyler said that I had come farther, faster, then anyone he had ever worked with. I was able to go home, finally after 2 months of being in the hospital. My family, my in-laws, they all thought that they would need to help me do basic things for another 18 months or so. I didn’t realize that. I thought that if I was coming home, I was good to go! So again, with the mind-set, and not letting myself think that I couldn’t take care of my kids. But I did know that I would need a little bit of help. I asked my Mom to come over and help me until I could do things on my own. But I only needed help at home for about 1 week. It shocked everyone. My mother in law thought I would be staying over there, and she would help me with the kids. My parents had stairs I couldn’t climb easily to beds, so she assumed I would be there for months. When I didn’t stay there at all, she kept some kids’ clothes, knowing she would need them to watch the kids overnights sometimes. She eventually gave them back, because she wasn’t taking the kids! My Mom was shocked that she wasn’t over to my house more. I couldn’t drive, so my mother-in-law took Brent to preschool and picked him up for me for a few months until I got my driving privileges back. I had to work up to that. It was my pedaling foot that was affected, so I had to make sure I could switch to the brake fast, and think clearly enough to drive, etc. I worked on all of that in Outpatient Therapy. But I had to be driven about 20 minutes away by my Mom twice a week.
Outpatient Therapy is PT, OT and Speech, just coming back once or twice a week to do them. That’s where I worked on running better, agility, jumping, shoulder strength, fine motor control, eye therapy, and speech work. I did a LOT but would bore you with the details!! This is a video of me doing jumps for the first time. You can see that I was struggling at the end!!
My Outpatient PT Alan told me something very profound. He said; “Failure is good. It tells the brain; ‘There is something wrong here, and I need to fix it.’ So, it tries.” That really hit me hard. That comment was the reason I tried so many things, even though I was scared to. And I realize now that it can be true for all walks of life! Failure is a good thing. It’s not something to look at negatively or to have us give up because we failed. It tells our brain that something is wrong, and it tries to fix it. If we just give up, our brain cannot fix it. If we try, it may take a while doing it, but our brain learns, and it fixes it.
What I am up to now:
I can drive now, I was able to get my driving privileges back in April! I am walking up stairs without a railing, I can run, jump, play volleyball again, and am exercising with a friend.
In June, I was able to run a 5K. It’s 3.1 miles. It was for the Stroke Association in Utah County. It’s to raise money for other events that they do. I got the email about it a few months out from the event. There was no pressure to run, but they encouraged us to invite family and come watch! They were going to have a survivor walk at the end, for all stroke survivors. I thought about it, and REALLY didn’t want to run it. I had just mastered walking, so to run a 5K was overwhelming. But then a thought hit me; a lot of people who have had a stroke can’t physically run the 5K. I can, but certainly don’t want to. I realized then, that I probably should do it, for those that can’t. So, my sister and I signed up. We trained hard for a month and ran it as fast as I would have run it before! It was an amazing experience. It shows, that if you set your mind to something, with a goal in mind, you can accomplish it. Having a goal made it so much easier. Having a REASON to run and a purpose kept me waking up early and getting it done.
I have also been able to sign a team up for rec volleyball, starting in November. I played a game with my team and some friends at my church a little bit ago. I worried about my reaction time. But I was pleasantly surprised. It was so fun and gave me the confidence I needed to play rec again. We just got signed up, and I am SO excited to play!
I am now on the board for the Utah Valley Stroke Association. There are only 3 other stroke survivors on the board, and like 20 something other people. We plan activities, do the social media, fundraising, etc. It has given me some purpose, outside my own home and I am loving it!
I just went on a hike a few weeks ago, and not just any hike! It was boulder hopping.
I had to go from boulder to boulder. I was kind of worried about it. MacKay said; “Your first hike, and you want to go boulder hopping?!” My uncle said it was very therapeutic. You had to study where to step next, not just walk. I thought it would be really good for me, so I agreed. My Dad and I went. I did really well!!! There were some balance issues, and I had to climb more than I would have before. BUT I DID IT!!
If we do our part, the Lord can do his! If I were to just sit at home and except what happened to me, and not try things, the Lord could not do His part. We have to try. We have to fail, and then try again. He will help us.
Deficits I have:
I have to deal with only a few “trivial” things. I am not complaining in any way. I am so grateful to be where I am and will take any deficit or issue I have with a smile. But I will list them here, so you can see that I still have things to overcome or that I have to live with.
· Hair Loss- I have lost half of my hair. I used to be able to tie my hair up and wrap a pony tail holder around 3 times. I am now up to 6 times. Sierra Bass (Pope), my friend from high school, wrote me about hair extensions that she sells. The Halo. She said they weren’t clip ins(which is good for me with not much hair to clip onto), and that I can get them through her. I thought about it for a week and I just couldn’t stop thinking about getting to wear my hair down again!! So, I told her we would do them for my birthday. She gave me a KILLER deal on them. I have LOVED them!! I only wear them to church, date night or special occasions. But I love to be able to actually wear my hair down!!
· Left ear hearing loss- I have some hearing loss in my left ear. That’s one of the affects on my left side, even though my right was affected. My hearing loss is somewhat of a rarity. Let me tell you why: I got my hearing check by an ENT (Ear, Nose and Throat Doctor) The results said that I could hear beeps just fine, with some mild hearing loss, but I got 0 out of 100% of the words I had to repeat, right. They said that the connection between my ear and my brain was severed some how. They said I would ear extra fries, not exercise. haha! Ain't that the truth!! I recently went back though and got it re-tested after 2 months and got 100% of the words I repeated back, right. The doctor was shocked. He said it is really quite miraculous, and that no one gets 100% again. Granted I did guess on one, but I guess I guessed right!
· Loss of sensation on the left side- literally like a line down the center of my body. The sensation just doesn't feel right. It's hard to test hot and cold with my left hand. I can now tell whether it's hot or cold, but it's not the severity that it is on the other hand. Or when MacKay tickles my back, it's like nails on a chalkboard for me on the entire left side, but feels great on the right side. Weird!!
· My emotions- They have improved, but they aren’t all the way back yet, I still haven’t full on cried. Just teared up.
· Double Vision- I have a tiny bit of double vision. It has mostly cleared away on its own, but if I lay on my right side, I see double. So that is a strange feeling!!
· Brain Damage- Sometimes, when I am reading to my kids, I will insert a word that isn’t in the book. I catch it right away, but it happens a lot. Or when I am talking to one kid and the other one is just jabbering a close distance away, I insert a word that the farther one said in the conversation I am having with my other child. Or say things that are close to the word I am thinking of, but not quite right. Like “Give him a round of a hand” instead of “applause”.
o MRI- When I went to my neurologist for the first time in March, he got my MRI results from back December. As he was reading it, he gasped. Me and my husband just kind of sat there wondering what was going on! Was I ok?! Did I have a brain tumor now?! After what seemed like forever, he finally spoke and said; “The gasp was good. If you were to ask me what the person with this brain would look like today, I would say they would have major paralysis and a lot of problems. I cannot believe how well you are doing.” He then made me walk in a line, one foot directly in front of the other. He just couldn’t believe I could do it so well.
I went and found my patriarchal blessing when I got home. I wanted to see if there was anything that was in it that would hint to this trial. As I was reading it, toward the end it had a simple phrase that gave me chills and made me tear up, knowing that the Lord is so aware of us, and what we are going through /will be going through. I have chosen to share it with you, even though it is very special to me.
“You will be a happy person, notwithstanding discouragements and trials knowing that your Heavenly Father has a plan for you and that He will help you to meet every challenge that mortality presents.”
When I was in the hospital, laying in bed, my Mom asked me how I was feeling. We knew then that the stroke had affected my emotions, so she was wondering if I could feel anything, or if I could, was I depressed? This had happened to me so young, and unexpectedly. Was I ok? I looked at her and said; “The only feeling I really feel is joy.” She was so relived!! And how great is that, that all I could really feel was joy. It’s a huge blessing that the Lord let me feel that one emotion. I do have some emotions back, some are not all the way back, but I have them! Then she asked me if I was depressed because of all this. I told her; “You know, there is nothing I can do about it, so I just have to move on.” She was so grateful and from then on and tried to have that attitude toward it too! My Dad had told his siblings that he didn’t think he could be positive if I weren’t. When I read that, my heart was deeply touched. What we do matters. It affects people. When we go through a trial, we cannot change the trial, or what happened to us, as much as we want to!! All we can change is how we choose to react to it. We can choose to be bitter. Or we can choose to have joy! Be grateful for the things we do have, the things that are going right. We can choose to be positive. Even in our thoughts! Yes, we can all have a little pity party. But, then move on to things you can actually change!!
I know that my background with sports & cheerleading, of being coached, that I learned mental toughness. I know that I would not have climbed out of this without being mentally tough. I also think that the lessons I learned in the musical, show choir, band, etc. helped me with pushing through things that were hard, and being able to come out on top.
A big thing in my recovery, and just in my life, is humor. I love humor, and often make light of heavy situations. I think that’s how I try to see the good, or the funny in each situation. When I was in the hospital, I would tell people who came to visit, or my nurses, that I “stroked out”. They each would be so surprised. Like; "Can you say that?!" And I think it would lighten it for people and show them that it’s ok to laugh! I have a letterboard at home and had my Mom put this quote up when I got home. People who came to visit me loved it!! Isn't it true though? All you can do is just move on!
Another quote I put up is this: (I did this one myself, it's REALLY good OT for my right hand! Even if I have to sit on my left hand and make the right one do it!)
I joke about this all the time. Even if it has nothing to do with my affects! Or if I forget things I now say; “Stroke Brain! It’s fine…” I think it’s important to laugh at yourself. I think it gives you a different perspective. It also gives others permission to laugh about funny things that happen, instead of not knowing if you will get offended. I love humor!!
On a more serious note- the hardest part, for me, wasn’t learning to walk again. It wasn’t anything I had to relearn. The hardest part was having to see my family suffer. Was seeing the sacrifices that MacKay made for me, to see the trouble I had caused everyone. The efforts that they made for me were incredible. I just felt terrible that I was making them go through this. When I was home from the hospital about a month, a spoke in front of our Stake Young Women. When I was preparing for my talk and getting everyone’s pictures of the past few months, MacKay sent me his and I saw, for the first time, this picture. My heart just broke for the look on his face. See for yourself:
It’s truly heart breaking. MacKay is not a selfie kind of guy. But he took this one, and it shows just a glimpse into what he had to go through.
What my whole family had to go through. MacKay, my Mom, Dad, brother and sister, my in-laws, and my 2 kids. They had to be without a Mom for 2 months. The reunion was very sweet. It felt so great to be home with those two.
My friend asked me what I had learned from all of this. It’s been a great question to think about and reflect on. I think I would say now, that I have learned:
· Love & appreciation for life.
· Miracles are real, and they happen all the time.
· A deeper love for those who helped me.
· Love & gratitude for Nurses. They are the real heroes!!
· Awe at the knowledge of PT’s OT’s and Speech therapists. And amazement at their compassion and love!
· A more positive outlook.
· Not be a Sunday Mormon. That I need to LIVE what I believe. Pray more, read and STUDY my scriptures more. Lean on my Father in Heaven more.
· To give back & serve more.
I have also been asked what I would say to someone who went through or is going through a major crisis in their lives.
I would say to
· Change focus, if needed. Try to focus on the positive. Change your perspective and try to find the good. See life through different lenses.
· Allow yourself a pity party for a minute or 50, then pick yourself up. FEEL your feelings. Give yourself permission to feel, but then move on to things that you can change.
· I would also say all the things I have said here; have humor! Laugh at yourself,
· Believe that God is there for you
· Just KNOCK.
Our Savior and our Heavenly Father is there for all of us. Individually. They love us and want to see us succeed. They just want us to believe in them and ask their help.
I saw this picture and fell in love with it. The caption said; “This tree fell a long time ago, but it never gave up.” I know that if we never give up, we can thrive. Maybe not the way we had planned, but we still thrive. And sometimes, the Lord’s plan for us is much greater than the plan we had for ourselves.
I had so many people praying for me, fasting, putting my name in the temple, donations, cards, freezer meals etc. All the donations were needed, the freezer meals used, and the prayers felt. This gives me an even stronger testimony of ministering to others. Serving them in their time of need. It was very much needed, all of it.
In closing I want to say this; if you choose to be happy, your life will be better. Choose to be positive through your trials. ESPECIALLY through your trials.
Remember that storms will pass, and it’s up to us how we decide to come out on the other side. Choose JOY.
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