our headbangers ball

K, well actually it was about three weeks ago and I am just now getting around to posting this. Been a little busy. My son graduated from high school and I just focused on him for a while. One thing at a time right!?!?

I went to my last appointment for the semester at the USU Speech Therapy department. There’s no fixing the brain damage but we can go around it and make new neuron pathways of thinking. So I guess I could say I am building a new brain.

Krista was waiting for me as usual. I gave her a small gift for all her hard work. We chatted for a while, then she got out my treatment plan and progress reports and we went over them together. I have made great strides since I started speech therapy last fall. It  helped my with my memory and problem solving skills.  Next Krista gave me some homework for the summer, just a few things to keep me sharp. Then she told me that I did not need to come back. I was shocked. They, Krista and her supervisor, feel that I don’t need speech therapy anymore.  I was elated!  So with all the graduating going on around us, I am considering myself graduated from Speech Therapy. Even though there was no ceremony, no cap and gown, I was just as proud, relieved and glad it was over. Time to move on I guess. One thing accomplished and on to the next one. Now if I can just remember to do my summer homework.

I hated going to speech  therapy. You see it’s just that some days it feels like a huge undertaking to go anywhere, but once I get there I’m fine. First I have to get ready, then take a break before I leave, then get in the car and drive to my appointment, getting lost almost every time I went. I finally strategized by writing the name of the street on my parking pass that hangs from my mirror so all I had to do was glance at it and know exactly which road took me up to the campus, then taking a break as soon as I got parked and getting into the building just as soon as I could so I would not be late.   All those tasks get our hair a little ruffled sometimes, but to some one with a TBI it seems impossible and very overwhelming.                                                                                                                               

Krista was always ready and waiting for me. We would chat for a few minutes, then I felt better. I liked speech therapy once I got there. Kind of. I always felt like I ran a marathon by the time we were finished. I will admit that it hurt my pride a little to walk in with all the kids going to therapy and I was the only adult. Sometimes people would ask me where my child was and I would respond “I am the patient.”, “really?” they would say. Then I would explain my TBI to them and they understood.  

We would begin with a few memory recall exercises like recalling whats on the other side of the card that she showed me a few minutes earlier. The thing I hated most was when she would play background noise and then have me practice memory recall or simple directions. Sound easy? It wasnt for me. I could not perform this task very well a year ago. I would draw a blank and not be able to focus, then I would feel a little ashamed as I tried to remember what she wanted me to recall, knowing it wouldn’t come. Sitting there like an idiot I would finally admit defeat and give up.  Now, I can do it. Randy first, then Krista taught me strategies on what to ignore and what to keep. What to focus on and what not too. I was horrible at this last year at this time. But now I can pass with flying colors. Another one of my favorites (I am being sarcastic here) was listening to a tape player recite instruction on what to draw on a piece of paper that I had in front of me. I would hear the instructions then I would have to remember the instructions I just heard for a short time until I heard a beep, then perform on paper. Next, I would get handed some homework to do. Usually a paper with a story on it. I was supposed to take a highlighter to each paragraph, marking only the important stuff, then at the end I would summarize the story in my own words in a short paragraph. Now I highlight everything I read. I am a yellow highlighter addict. I really need to find some other colors.  Lastly we would record what we did on an index card so I could remember and reflect on what we did that day and what my homework was.

Talk about tired. I could hardly wait to get out to the car and collapse in the seat and take an extra long break. The noise and straining to think and remember really takes a toll on me. I would soon be frustrated and my brain would just shut down. So I would hear and understand nothing. After my break I would start the car and be on my way. Forget shopping or anything while I was in town, I am done for the day. I had to make sure and take all my breaks and maybe some extra so I wouldn’t be brain-dead the rest of the day. We worked hard, Randy, Krista and I, and my progress shows. I am done with speech therapy.

We hugged and then Krista’s husband took a few photos. We both teared up a little. We said our goodbye’s. Then I walked out to my car and started my break before the drive home. I didn’t make it all the way through my break cause I started crying. I do  a lot of crying in the car after appointments. I never used to be such a boob. But it’s one more step, and each one means so much to me. It’s part of the pathway to a better me, a healthier more functioning me and I did it. It wasn’t easy, but I did it. It’s also not over. I still need to practice my strategies and keep doing my homework.  I will have to go back to therapy if I lose my progress.  I will keep my strategies in place, and glance at my index cards now and then. 

I hope Krista will be proud of me for summarizing my experience. Sorry Krista, I do get a little long-winded.  So I am slowly becoming Diane. Part of the old me and part of the new me. The Diane I am getting to know and like.   

Special thanks to Randy and Krista. So glad you will be out there somewhere helping people like me. You’re good at it. Thanks for being my friend and my therapist and helping me in so many ways. 

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I received many emails and comments from you to make sure I relaxed and took care of myself. Thank you! I love that you care about me so much. I care about you also. I think I want you to understand a little bit more though. I just want you to know how difficult it sometimes is. You see I have been given this second chance. I don’t want to spend it in bed.

Paul asks God to remove the thorn in his flesh. And believe me, so have I. “But he said to me, ‘My grace is sufficient for you, for power is made perfect in weakness.’ So, I will boast all the more gladly of my weakness, so that  the power of Christ may dwell in me.” I found this bible verse recently after I was diagnosed with my Traumatic Brain Injury. You see I didn’t want to talk about it or deal with it. In fact I couldn’t for a long time. But now, I can after a lot of hard work. That verse is one of the reasons I started this blog. I need people to know what is going on and sometimes I need your help. I need your help finding constructive new ways to rest and excuses that make me feel better about it. So please post your ideas. After all we can’t do it alone. I would help any of you when you ask, in a heartbeat.

This past year I have gotten a lot better about taking care of myself. I had to because everything came crashing down around me the end of the year 2008. But that’s a whole other blog. I take my 5 minute breaks, I exercise, I try to stay active and I also spend a day or two in bed occasionally. Our lifestyle is slow motion. It’s just so hard when there is a house to clean, family to cook for, weddings to go to, dinner with friends and family, conversations with friends and family, graduations, after school conversations with Katie, homework, talks with Jon, phone calls from Shellie, special moments with Dan. It kills me to miss out on these things. My wonderful kids don’t deserve a mother that stays in bed all the time. What about Dan? Through my journey I have  become finely tuned to what really is important in life. It’s time spent with family and friends. They need me and I need them. We need each other.

It’s ok that this has affected me, but I won’t let it affect my children. I want them to grow up and be the best they can be.I want to be there for them when they need me.  Not sleeping or not being able to function. Katie is so young, I don’t want all her memories of me to be laying in bed or on the couch. or not being able to attend all her school and church activities. I am a completely different mother with her after the car accident than I was  before it with the other two. It’s just not fair. We have things to do and see and experience. I am not going to miss out on this second chance I got.

It’s God that gives me the strength to get up and go on. Remember after the accident? He told me I would be ok. So I know I will be. It’s also all of you who read my blog, my family, my friends and especially my kids and Dan. You are the reason I don’t give up and stay in bed.What do Dr.s know anyway?? ha ha I know what your thinking. But many a Dr. has told a pt. that he will never walk again only to see that patient walk later on. I have a moderate/severe Traumatic Brain injury, people with that diagnosis can hardly function, but I do. I shouldn’t be here. People don’t survive accidents like the one I was in but I did. So when they tell me to rest, I listen, kind of. I really try to balance my resting and pushing myself a little bit. I especially need to stay healthy. I know what happens to me when I don’t exercise. I can’t move. I also know what happens to me when I over do it. You are the reason I don’t give up and also the reason that sometimes I do give up and stay in bed.  It’s so I can be with you later. And don’t feel bad if you come to visit and hear that I stay in bed the whole day after you leave. Don’t feel bad if our conversation leaves me dizzy and a little brain-dead and then I take a long break when we’re finished. It’s just how I recuperated. Social situations and conversation are probably one of the hardest things for me to get through and it wears me out. Plus having the pain on top of all this. Somedays it’s a lot. But I wouldn’t miss those moments for anything. So, that’s why I don’t rest sometimes.

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I figured you may have wanted an update on my appointment following my recent CT scan. So here it is.

Dan and I drove to Salt Lake City on thursday for an appointment with my Thoracic Surgeon.  My heart was beating fast the whole way. Big thumping palpitations in my chest. I was irritable and nervous. I hate Dr. appointments because I have to talk about the car accident in detail.  They also want to know how I am feeling now. Sometimes I just don’t know how I feel cause I have gotten so good at pushing those feelings away and surviving the day.  So it’s hard on me to have all this information ready for them. Dan, as always, was trying to make me feel better and make me laugh at dumb things along our trip. He is so gifted in seeing the lighter side of things.

We arrived about a half hour early. We get in the elevator and push the button for floor #2. As soon as the doors close Dan and I do a silly, crazy make out session only to compose ourselves just as the door opens on the second floor. We walk into the office and I let them know I have arrived then sit in the waiting room. I try to read a book while Dan gets some work done. I look around the office unable to focus on my book and think of all the patients that come here. Usually they have some sort of cancer or disease. Wow. I begin to think I am so lucky! There are so many people worse off than me. I hear the nurse scheduling a ct scan for a patient at the desk. He has cancer and they need to check the progression. I think maybe I should leave because I don’t have cancer. Nothing is wrong with me, I am fine. So I ask Dan if we should leave. He says no. He knows I am just being silly and trying to avoid another appointment.

The nurse calls me back and we wait again in an exam room. The Dr. comes in, he’s a good friend so we chat for a few minutes. He’s been to Switzerland recently teaching. He teaches all over the world, but mostly at the medical school in SLC. We hear about his kids and we tell him about ours. Then we get down to business. He asks and I tell him whats been going on lately and about the increase in my symptoms. He remembers my last appointment and has looked at my scans and does an exam of my scars. His diagnosis comes next. He says that the scar tissue is actually less than my last scan. Thats good news. Yay! Then he wants to know details of the car accident again, like how we were hit, how fast we were going and how fast we stopped. Dan and I both stiffen and struggle through the answers cause we don’t want to  think about it.

He continues on and explains to Dan and I the reason for my symptoms. He says it is a “really bad injury” that affects my whole core and body and that ” he is sorry and hates to tell me this, but It will probably never get better and I will be in pain for the rest of my life and it may hurt more as time goes on. Injuries like this just never heal….” and that he would ” throw himself on top of my body to keep anyone from doing surgery on the scar tissue” because it will only make things worse. He tells me some things I can do to help me deal with the pain and try to be as comfortable as possible. Some I am already doing and some I will include in the near future. He knows I won’t take narcotics, but convinces me it’s time for an almost narcotic. He explains how keeping the inflammation down as much as we can is important and will be very beneficial to me.  He also wants me to think about a breathing test and a pain clinic. We talk about resting and taking care of myself, meditation, physical therapy etc… I can hardly listen to his voice at this point.  I feel like I need a break. I hear the words “pain for the rest of your life” echoing in my head. These words feel very heavy. I am already tired of being in pain. How can I do this the rest of my life? He gives me hope by telling me what I can do to get through all this. I look at Dan and feel better just seeing his blue eyes. I look at the Dr. and start listening again.

We go out into the hallway and he walks me through my last two CT scans, which we have all seen a hundred times, showing me what my insides look like and explaining again what we already know and showing me where the scar tissue has reduced. He emphasises to just rest on the days I don’t feel well. I won’t. I never will. Not until I have too. I don’t want to end up “resting” for the rest of my life! I get up each day and exercise cause I know it makes me feel better. Even though it takes me a long time and takes my breath away. Sometimes I am soooooo incredibly exhausted that  I just sit there till I have strength to do the next set. When I do the next set, sometimes I scream from frustration cause its hard. Then I cry because it hurts and I am mad because it has to be this way.  I wonder why I put myself thourgh this. But I keep going. I won’t stop.  I only spend one or maybe two days a week in bed “resting” But that’s only after I absolutely cannot go on that I give in and let myself rest for the day. 

We thank him and shake hands. He hands me my new prescription and we are on our way. In the elevator Dan posts on Facebook that he heard the Dr. say ” that my wife will be a pain for the rest of my life”.  Ha ha. Oh Dan. He asks me where we are going to go to lunch? I want to go to Diamond Lil’s. I am going to drown this all out with prime rib. He opens my door and I climb in the car. I am feeling so relieved that I don’t need surgery and that I can handle all of this. It’s like a big weight has been lifted off my shoulders. Another appointment done and I just need to do what I am supposed to and take care of myself. Keep my already slow pace, exercise, therapy, eating right and resting, knowing it works. Then I cry for a minute remembering “the rest of your life” part. Then I put a smile on my face and head to lunch with Dan. I want this to be a fun day.

We ended up having a wonderful time. We took the long way home and stopped at Sportsman’s Warehouse to drool over the new wooden canoe’s and fun hiking stuff. We got some good news and some bad news today. But that’s life. In a couple of days I will be over it and moving on. I just can’t help but think about all the wonderful family and friends I have.  I also can’t help but wonder how I am going to get through the rest of my life like this. But we all have our trials. I would pick mine over yours any day. Although I really feel that none is greater than another. Deep inside is a burning hope that I will nourish and never let disapear. I will get through this and have a good time doing it.

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I just returned from my 8th or 9th CT scan. I think I’ve had one or two every year since the car accident. But I’m not sure  how many due to being unconscious for a few of them. Dan teases my by saying ” they still can’t find that cat?’ He is so good at putting humor into everything I have to go through and making me smile. I have treated myself to breakfast at Crumb Bros. I am sitting here enjoying my treat after fasting  and drinking ick that makes my insides glow and thinking about what to write in my blog. I am also thinking how lucky I am. When the scan was completed I poke my head around the corner and look at it with the technician.  Of course he can’t say much, other than echoing what I state that I already know about. I can read x-rays, so we look in detail at my insides. Noting the rise of my diaphragm on the right side. It looks like a question mark laying on its side. The high part being the damaged side. You can see that it’s pushing on things. Done with my unofficial diagnosis, I will wait for the doc to call me.

You see, my insides are all stuck together with scar tissue. My liver is stuck to my diaphragm, which is stuck to my lung and for some stupid reason it is rising up towards my lung and pressing on it. You would think that gravity would work the same way as it does on every other body part, like my boobs for instance.

So every breath I take is painful. My diaphragm is paralyzed on the right side and so I use my neck and chest muscles to breathe. I can feel pressure and stretching with each deep breath. So for that reason I forget to breath. I find myself taking these short, shallow, panting breaths to avoid the pain. All these shallow breathes don’t help my anxiety at all. I constantly have to remind myself to take a deep breath.  Slowly I breath in and out like a normal person would. Welcoming the air but hating the pain. It doesn’t feel normal to me. It feels unnatural, more like an exercise. But we all need to breathe, so I do. Big cleansing breaths until  I forget again and pant. I try to hike and walk a lot to keep everything stretched and working. Dan is my  encouragement king. He patiently waits for me with a big, cute smile on his face because I have to stop often and catch my breath. Most of my memories of our hikes is me looking up at him, waiting for me. It was a lot farther in between breaks now than it used to be. But now I am going backwards and not making so much progress. It hurts more to breath and I am out of breathe just from walking up our stairs.  I also have moments when the scar tissue is tightening its knot in the form of painful muscle spasms that leave me breathless with tears in my eyes.  They are getting stronger and more frequent. That is why the Dr. wanted another CT scan.

I have hand-picked a few Dr.s by interviewing the staff on the phone and then the Dr. at the first appointment. You would not believe how many providers out there really do not know what to do with me, but will fake it until I find them out.  I realize, after all, that Dr.s are human and that I am responsible for my medical care. So I keep lots of notes and talk with people I trust like Dan or my family. I keep copies of all  reports in a file and make sure all Doc’s involved have a copy also. Let’s see, to date I have a wonderful general physician, a neuropsychology, a thoracic surgeon, a cognitive therapist and a speech therapist.  Dan plays a huge roll in all of this too. Together all seven of us try to keep my quality of living the best it can be. So I can enjoy my second chance.

So, the report is back to the General physician and now on its way to the Thoracic surgeon. I’m just waiting for him to call me. We agree on many things and one is to try to avoid surgery because it only causes more scar tissue wich increases the problem. A surgeon separated all my stuck together parts a few years ago, but it only lasted a few months. Breathing was so easy and wonderful during those weeks. In fact the first thing I said to my mom when I woke up afterwards was “I can breathe!” But it’s probably not worth having surgery for a few months of relief. So we will wait, discuss and decide. In the meantime I will keep on keepin on and enjoy my hikes and walks with Dan.  It’s amazing what you can accomplish just by sticking one foot in front of the other.

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Really in the bigger picture of things we are living happily ever after, or trying  too. But we all know that sometimes it just doesn’t happen that way. I really don’t like to write about this part. But I need to. So I will. Some of it I have never talked about before. What I see and feel next does not make me very happy.

The nurse lifts the blankets to remove my catheter. Oh my God! I have a catheter. I don’t even want to know how they got that thing in there. With one swift motion the nurse removes the catheter. I try to block out this procedure as much as I can. I guess that’s why I didn’t have to get up and use the bathroom. Now I will. I have no idea how though.

I haven’t eaten for six days. The thought of eating hasn’t even crossed by mind. Only pain and thinking through what happened is all I can think about. All I know is that I do not ever want pizza again.

 I get up enough nerve to look in the mirror. My hair looks horrible. A very long curly matted mess mixed with blood and glass. Why didn’t anybody fix my hair? Dan said he was afraid to touch me. I guess when you’re hurt nobody is concerned about your hair. I hurt too much and am to sleepy to do anything about it. My face looks worse. I have three big cuts running from above my forehead up into my hair to down along my jaw line. They are about as thick as a pencil. There are numerous cuts on my face especially around my eye, some have stitches, and it is very swollen. The  swelling won’t go away for about six months. I reach up to touch it and glass falls out of my hair. I continue assessing my body. Under my right breast I have a tube an inch around inserted into my lung and another coming out just a few ribs down. This keeps my lung inflated. It’s draining fluid and blood. I can feel it pressing my ribs apart.  In between the tubes is a bandage covering an incision that goes from my breast around to my back. This is where they took out two crushed ribs(i won’t know that for 6 years after complaining to a thoracic surgeon that the pain in my side won’t go away) and repaired my lung and diaphragm. Where my pelvic bone is crushed it hurts so bad I have to keep moving to try to relieve the pain and keep pillows between my legs. But I can’t move. Not without great painful effort.  It takes all my strength to push myself to a new position, even with the nurses helping me. On my abdomen is a large bandage covering a 7 inch incision, I think to repair my liver ,spleen and diaphragm and stop the internal bleeding. Next I find a tube the size of the little plastic tube that holds ink in your pen on my upper left chest. That was for saving my life. They gave me a healthy dose of medication that restarted my heart when it quit. I gently finger that tube in amazement of everything that has happened. I push away feelings,  and push my favorite little morphine button and sleep. This is all too much to take in. Why did this happen, why did I live. Little do I know the struggle ahead of me. There are some moments when I wish I wouldn’t have lived.

I make faces at the Physical Therapist as he comes into my room. “Time for more torture” I say, with a smile on my swollen face as I quickly push the button for more morphine. It takes us ten minutes for me to get out of bed and to pack up the I.V. pole, the big tube and box that looks like a portable vacuum that is keeping my lung inflated, complete with the large blood filled tube stuck in between my ribs through my skin. Soooo gross. With the help of a walker we go together down the hall. It takes three of us to hang onto everything attached. Dan is always with me, every step of the way. He teaches me to walk again. To climb stairs. To swallow right. I try to be positive but this all hurts like hell. I don’t even care if my butt is showing through the back of my hospital gown or that my hair is a hideous, frizzy mess. Later I will find I need to learn how to write and read again. It comes back easy enough. Activities come pretty natural, but slow. It will be years before I can watch a movie all the way to the end and know whats going on, I still have trouble reading books.

I had a team of five Dr’s working on me the night of the accident.  One a good family friend. They have all made it to my hospital room, some daily, some once or twice during the week. They each tell me that they can’t believe I made it. They tell me how lucky we are. They didn’t think I would live. I don’t feel lucky. I sleep, push the morphine button and try to stay awake when visitors come.  I remember falling asleep mid-sentence while talking to a friend.  I dread therapy because it hurts and makes me unbelievably tired. They are always waking me up for something. Maybe because I am always asleep.

Time for a bath. The nurse helps me get to the bathroom. She helps me undress. I can hardly move. There is an old person chair in the tub. It’s for me. Painfully and slowly the nurse helps me to the chair. She bathes me. I am not even embarrassed because there is no way I could do this by myself. She has to do everything. Tired and wanting to go back to bed I hang my head. The floor of the tub is red with blood and filled with pieces of glass. She has to wash my hair three times to get it all out. She scoops the glass out into a bucket. I have never seen so much glass. I have had this in my hair for days. When we get finish and get back to the bed there is blood and glass all over the sheets. I sit in a chair, numb, while they change my sheets. I can’t brush my teeth or fix my hair. I really have no idea how I have made it through this. I am just hanging onto the fact that God told me I would be ok. I have no idea when that will be.  So much pain and so much sleep. (Dr. Baker will remove glass from around my eye for over a year, and I will remove some on my own for five!)

I am doing so well that they let me out of the hospital on Friday. Exactly one week after the accident. Dan and I are shocked. I think the Dr. is crazy. So does Dan. It’s too early to go home. I can’t think, I can’t move. I cry. I am not ready to go home. 

Busy day. After I show them I can eat, two bites of tomato soup, then I can go. The nurse takes all the tubes out of me. Therapists come to teach me how to use the stairs and get into bed. I can’t be left alone, I can’t lose weight, I can’t fall, I have to ride in the back of a car or as far away from an airbag as possible. So many instructions and so many meds. I have to depend on somebody else to do everything for me. 

We don’t have a car so my mom takes us home. This is all too much for me. I feel like I am in a fog. I don’t remember much of this day. They help me get settled in the back seat among a mountain of pillows my mom got for me. I lay down and cry till I fall asleep because I don’t want to be in a car again. Next thing I know is I am home. Everyone is there. My sister has moved into my house with her kids to take care of my kids. She has it all ready and cleaned. She tried to keep things as normal as possible for them. This is the first time I have seen them since the car accident. I can’t hug them and I can’t pick them up. We gently hold each other. Then exhausted I go to bed. Surrounded by prayers, balloons and hundreds of flowers. Desperately hanging on to being ok. I have a long road ahead of me. But I can do it. I will get through this.

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I have become fast friends with Krista, my speech therapist. She is newly married, blond, beautiful and a little unsure of herself. I think she’s wonderful. When she gets her confidence on she is incredible. It looks good on her. You can tell that she really cares. She knows her stuff. Krista will be a very good therapist when she graduates, because she is now. She is patient when I unload my thoughts and feelings on her. She listens and really figures me out. We are working on strategies for getting through my day.  She gave me some really great conversation strategies that help me remember what it’s all about when I talk to people during the day. I have become a copy cat. I repeat what you are saying to me in my head as you are talking to me. Then I pull out just a few important facts or throw it all away. Summarize and paraphrase. Don’t feel bad that I might throw our conversation away. If we are just chatting then I tell my brain I don’t need to keep the information. You know, the brick theory from my earlier post.  My favorite so far is the day she handed me a package of green, squishy earplugs. The kind you can smash into a hard little ball and after a few minutes they resume their shape. The first chance I get to try them out is at home. Before dinner. The reminder on my phone goes off for my break. I yell at Dan and he and the kids take over dinner. I open my bedroom door and quickly close it before I worry about what they are doing to my dinner. I have to let go and let them help me. Evening time is the hardest because my brain is full and tired. I can only take in so much information because my process speed is slower.  I crawl onto my big log bed followed by my buddy, Harley. I reach over and push my five minute timer, to the bottom of which I have taped a fortune from our favorite chinese restaurant. It reads ‘ Put up with small annoyances to gain great results. Its my reminder to not let my breaks annoy me more than I let them heal and help me. Then I hear Dan disappearing into the den to the computer and Katie and Jon beginning to argue over who is supposed to do what with dinner. Oh great! I pull the pillow over my head to try and drown out the noise. It doesn’t work. aaaarrrrggghhh. I am not getting a very good break. Where is the peaceful breathing and restful daydreaming. I know if I don’t get a good break then I may end up crashing and being total useless to my family and myself. Sometimes I end up getting so overloaded that Dan sends me to bed. I want to be with my family tonight. Connecting and involved, not confused, angry and distant. Oh well, I may as well give up now. It’s too much of a distraction hearing them through the pillow. I throw it off my face. Wait. I happened to glance over at my timer and see the package of ear plugs. I rip them open. I smile really big. I roll them between my fingers just like the directions say to and place them in my ears. Slowly they expand and drown out the world. I breathe deeply. I empty my head and rest and renew. If Krista were here I would hug her. My smile gets bigger. It’s the best break I have had in a long time.  Now I have a set in my purse and at home. I take them wherever I go. I never thought such happiness would come from a set of squishy green earplugs.

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I go to speech therapy on Thursday’s of every week. Even though my speech is fine, I am from Idaho after all. I go to improve how I think things through. To build new neuron pathways. I go to the University Speech therapy program and the students are WONDERFUL. So good about figuring me out and making me work hard to improve and build new pathways of thinking. We can’t fix the damaged areas of my brain, we have to go around them and build new pathways. It’s hard. it’s very hard. One of the hardest things I have ever done. I am only in therapy for an hour but I am so exhausted when I am finished that I sit in my car for about ten minutes before I can leave. You see, to have a conversation with somebody is not typical for me. Each word they say feels like a brick. The more they say to me the more I have to hang onto and hold a heavy brick. Each word adding another dusty, rough edged brick. I hold them not knowing where to put down each one. I end up carrying this heavy load around and that exhausts me. So needless to say I have some very heavy conversations(lol). I leave the conversation feeling weighed down, confused and tired, knowing your lips were moving and hearing you speak, but knowing little about what we talked about. I hear only the first two or three minutes of words, I even understand each word, but to remember them and process them into a summary of our conversation seems impossible, or so I thought, before Randy and Krista, my speech therapists, taught me where to put my bricks. Some I throw away, and others, just a few, I file neatly into nice little bundles of remembering and understanding. So these new pathways are like constructing subway tunnels, that I get to build, just Krista and I. With a big pick and shovel I work away at my pathway every week. No big machinery for me, I have to do this all on my own. My only guide is Krista and her supervisor and all they can do is encourage me and tell me how. I can now repeat to you the summary of our converstion. While you are speaking I repeat what you are saying to me to myself in my head, kind of like being a silent copy cat. I then pick out just a few important words to keep.The rest of the day I feel tired yet energized, confident, but mostly hopeful. Things are moving forward and I will soon enter the little world of understanding and remembering that most of the rest of you live in. Then about 6pm I crash. I crash hard. My brain closes its doors and boards them up fast, I cannot think anymore. I have run into and hit this very brick wall I have been carrying. This is very hard on my family and I try to ignore it. I think they do to, but that doesn’t work. So I go down fighting, literally. Then my husband so very carefully looks at me and gingerly says ” is it time for a break honey?” Sometimes I yell “No! I am fine!” when I am obviously not and head to the bedroom for a break as the words explode from my mouth. We have to have a sense of humor with all this because at this moment I do not know what I am doing. But peace and refreshment come in the form of my hourly 5 minute meditative breaks. I use earplugs and just relax for five to ten minutes, thinking really nothing at all, just focusing on my breathing. Towards the end of the break I can actually feel my brain opening its doors again. I get up and go on. Kind of Jekyll and Hide I think. But who isn’t?

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