Tuesday, February 9, 2010

thankful....

I had an angiogram done on 1/25. It has been two years since the last one. The results were really good. The clips are holding and no other signs of problems with that aneurysm. Also, Dr. Boulos told me that my bypass which had shut down shortly after surgery was now open. He says this "never happens, once a bypass shuts down it stays that way". For some reason, I needed to use that bypass again. I personally think it is just a reminder that God is in control, not science, or medicine or even skilled doctors. These are merely tools God uses at His command! The sedation that was used really affected me this time around and with the high risk of stroke from the procedure, Nate and my mom were worried for some time after. My memory was like Swiss cheese again. I could retain little to no new information. It is normal for those with TBI (traumatic brain injury) to respond differently to sedation drugs and take longer to "come out of it". It was a terrible feeling! It was like I knew I had asked these questions and should know the answer but just couldn't. It reminded me to be thankful for how far I have come since the early days of diagnosis. I am thankful I have learned strategies for remembering things and piecing events together in a meaningful way! I also am so thankful each day for the days and events I have gotten to be part of since surviving my aneurysms. I was able to not only go to, but got to be in my sister's wedding, I got to meet three nieces and a nephew. I was able to attend Ellie's wedding and Cory's wedding! I was able to go to Jessie's baby shower and meet each year at the outlets in Waterloo for Christmas shopping. I am thankful each morning for waking up and getting out of bed all by myself. I am thankful I can look at a cereal box and recognize it is a cereal box!!! Most of all though, I am so thankful that God sent me a man to love me unconditionally through sickness and health, in good times and bad! Nate is amazing and not only does he still tell me every day that he loves me but he shows me too by protecting me and trying to make life easier for me every day. The snow is always scraped from my car when I go to get in it, the washer fluid is always full(and I could go on and on). These are only a very few of the MANY MANY things I am thankful for, and praise the Lord for daily! There are just so many little things I am thankful for each day now that I used to take for granted. I certainly don't have things all worked out but I am so thankful for so many blessings.

Monday, February 1, 2010

My Story!!

the now, infamous road!
Here is my story : In Luke 8:39 Jesus says," Return to your house and describe the great things God has done for you." I hope this gives you insight into my world now and should describe the great things God has done for me! Enjoy!
this is the bank I went over and the trees I missed on the way!

At my sister's wedding, not knowing
 the coiled aneurysm was growing!
February 1, 2005. I reported to my first job feeling fine and was driving to the second one when a brain aneurysm in my right middle cerebral artery burst, instantly filling my head with blood. I passed out and apparently drove off the road and over a 60 foot bank missing every tree and not rolling my Jeep Cherokee. Someone in a blue pick- up truck found me and called 911, then left the scene when police responded to the call. I was rushed to Albany Medical Center and my husband, Nate, was contacted. When he arrived at the hospital doctors told him to say his goodbyes; there was very little hope of my survival. At that point my left side was completely paralyzed and my head was still full of blood. When it looked like I may live, after the clipping surgery, Nate was then told he may want to check into nursing home facilities because the reality was that I would most likely be a "vegetable". When I finally woke up I thought it was 2002, but I could speak, and I recognized Nate and my family. When I was medically stable I was taken to Sunnyview Rehabilitation Hospital since I still had no use of my left hand and had very poor balance! About a week after being released from Sunnyview I had a very stiff neck and Nate says I looked up at him and said that my head hurt. He immediately put me in the Jeep and headed for Albany Medical Center, only 4.6 miles away. By the time we got there, I couldn't walk on my own. Scans showed an aneurysm at the base of the first one had ruptured. My artery was in such bad condition after my first rupture that doctors were unable to check for any more weak spots without causing further, possibly massive damage to my brain. So the second aneurysm was coiled to stop the bleeding and avoid 2 craniotomies in a month’s time. The bleeding stopped and a shunt was placed to relieve all the pressure in my brain (my ventricles weren't working due to all the bleeding). After the shunt was placed, I regained some of the use of my left hand. It was moving again and now I would just have to work on improving my fine motor skills. Months after being released from the hospital, my doctors cleared me to fly to Oklahoma for my sister's wedding. After returning from the wedding, I had a six month check-up and Dr Boulos found the second, coiled aneurysm was growing again. It was also discovered that due to the lack of blood through the arteries I had a “stroke” probably right after the first rupture. So to fix this growing, now giant aneurysm, Dr Popp and Dr Boulos would have to preform a bypass around the clipped vessel to give me enough blood to feed my poor little brain. Since the vessels in my arms and legs appeared too small, the neurosurgeons decided to use part of my temporal artery for the bypass. After 23 hours of surgery the aneurysm was clipped and the bypass was working. The surgery was so risky I honestly prepared for not waking up. When I did wake up I told Nate that, "I knew I was at Albany Medical Center because there were no golden streets(as I refered to heaven)". My bypass has since shut down because in another unexplainable way my clipped artery has expanded enough to let the proper amount of blood flow through it. Dr. Popp, the lead neurosurgeon on my case at the time, put his hand on my shoulder and with a humble reverence said "It was the hand of God that got you to this hospital alive in the first place". With tears streaming down my face I shook my head because here was the man that God used to save my life and he took no credit for it. It was so evident that God had spared my life even he, a renowned neurosurgeon, was willing to admit it. By the way, if you do the math, my chances of even surviving 2 ruptures was 1/10 of 1%. I really have very few memories of that whole year and I only know the story as it has been told to me. I like Don Piper’s quote in his book 90 Minutes in Heaven, “You prayed, I’m here”. I think that about sums it up. Thank you for each of your prayers for me! And so I ask you, do you know for sure you would go to heaven if you died? The Bible clearly tells us that the only way to heaven is to trust in Jesus blood to cover our sins that separate us from God. It is only by faith in Him we will be assured eternal life in heaven.

Days after the last surgery since, I was actually
 closing my eye that had been swollen open (yes open)!
When I was first diagnosed with a Traumatic Brain Injury (TBI), I had a wide range of emotions from,  "well, duh, just look at my head" (still swollen and stapled together from the craniotomy). To being surprised I had not aced the neuropsych test and fooled everyone! I had just lived through an aneurysm that burst while I was driving to work. Doctors had told my family that if I did miraculously live I would probably be a vegetable for the rest of my life. So what, if I couldn't count backward from 100 by 7, I was convinced I could never do that, not even before the assault to my brain. I remember being truly surprised that I hadn't fooled the neuropsychologist. I thought I had done so well ordering things, recalling names and repeating stories. I also remember the psychologist wheeling me out of his office after telling me I had a TBI. My dad was there in the waiting room and saw the look on my face. I said to him "I keep thinking this is all a dream and someone is going to pinch me and wake me up and I can just go back to my 'real life'". So, through tears I decided that it was okay to have a TBI; a small price to pay for still being alive, but this TBI (that I totally didn't understand) wasn't going to affect my life, I thought! I could do anything I set my mind to, right? What I didn't know was that indeed it would affect every aspect of my life. I would have to relearn to relate to people and what was appropriate to say. I have a tendency, like most brain injured people, to just say whatever I was thinking at the moment. As you can imagine this was a poor way to make friends or keep the ones you already had. I was also noticing my inability to multi-task in any way (talking on a cell phone while walking through a store was a disaster, crashing into people and products set up in the aisle). I could also no longer make a quick decision to solve a problem. Even going to get ice cream usually resulted in just picking the first flavor I saw and dealing with it later because I was too overwhelmed to make an actual decision. I wasn't even sure what I really liked anymore, anyway. "Are you sure you want bubble gum ice cream, honey" Nate would ask well aware of what I was doing, but not knowing exactly how he could really help me. I was stubborn, I was determined, and I was going to be independent again. Nate could have easily ordered for me because at that point he knew me better than I even knew myself, (doctors told him to let me make decisions even though it was very hard and that it would be, “good therapy” for me). So, Nate let me order for myself and I ate bubble gum ice cream.I was sick of being treated like a child even though in many ways that is exactly what I had become! At times I was mildly aware of it but most of the time I was just annoyed at the world. I was like a child at 25 years old, needing someone to hold my hand when I crossed a street. The first time, I went back out into the "real world" ,without a wheel chair,I was with my dad. We walked through the parking lot and into the store. I was determined to get inside the store (one track mind) and didn't even know I was actually crossing the street. My dad grabbed my arm and asked "did you look both ways before you crossed the street". My response was something like "what's that?". Lee Woodruff speaks of her husband asking what a mortgage was, I wondered what crossing a street meant. I also felt totally stripped of an identity. I first realized this in a meeting with an employment specialist for people with disabilities months after my injury. “What are you good at, Lisa? What are your strengths that an employer might want to know about?” she asked. I sat there, so exhausted from already answering questions. “I don’t know, I honestly don’t know”, I said as tears filled my big blue eyes. I sat there a moment trying to regain my composure (and looked for my tissue supply that I now carry because I find myself always crying)! I think I then said (with that kind of sarcasm that masks insecurity and pain), “Well I can cry anywhere, at any time, at anything, does that count?” “Well”, she politely smiled “I think you are friendly and eager to learn”. She was attempting to fill in some of the blanks for me. I can’t remember what else she said to me about myself, but the blanks would just simply have to be filled in, by me, over time! What I used to do with ease was now confusing, exhausting, and well, just plain frustrating! Being told I was acting like a child just made it worse for everyone! I didn't feel like I had any control over anything, not even myself! Cooking for the first time was my first inkling that things weren't just going to go back to normal right away. I could tell a therapist how to make spaghetti, but it is very different to actually do it. I was in a quiet isolated room without distractions then. Sequencing, I would discover, was now going to be a challenge even in the best situations. Distractions would only magnify the deficits. In everyday life I would constantly have to be reminded “look both ways, then cross the street”, or “shut the door, lock it, and then you can leave the house”. So, when I actually went to boil the noodles, the exhaust fan would be on which, in turn, added to the confusion for me. Then, there was the problem of figuring out how to actually "turn the stove on" (Step #1, which I so easily spouted off to the occupational therapist days before). I didn’t know my left from my right. I was spatially challenged, so the pictures by the knobs on the stove were only more confusing to my poor damaged brain. So, with a little help from Nate, my ever-patient husband, I got the stove turned on. Then I started the meat browning, Step #2. But, to get to browning the meat I had to think about each step; get a pan, find olive oil, pour into pan, put meat in pan, find a fork, use fork to separate meat. It is exhausting!! I was on a roll now, but then, as the meat was browning, the timer Nate had set for the noodles (knowing I would forget how long they had been boiling) went off. Oh no, what did that mean? How do I get the noodles off the stove while I am supposed to be watching the meat? I literally now had no idea what I was supposed to do, and now there was a timer going off. Things were boiling and browning, and the silly exhaust fan was still roaring in the background. I was quickly learning that things that would have just normally dawned on me, now didn’t. It seemed like I was unable to solve even simple problems I faced like what to do with boiling noodles! So out of sheer frustration, I threw a dish towel (that was over my shoulder) at my poor innocent husband, amongst my tears of frustration. I didn't even know how to make spaghetti and I didn't know how to deal with yet another loss either! Nate tried calming me down and made me simply step away from the stove telling me he would take care of dinner that night, possibly an instinct of self-preservation! That was the very first of many "meltdowns", as I call them. Once someone had specifically showed me how to do something I could then relearn it and duplicate the action the next time. I am thankful for the ability to relearn as pain staking and slow as it may be! Trying to balance the checkbook a few days later had a similar result, and this time my mother was also there to witness it unfold. Being the kind of girl who had it balanced to the penny each month it really bothered me that during my months in the hospital it had been neglected. This should be easy, I thought! Well, none of the numbers made any sense to me. Trying to put them from the register into a calculator was a nightmare. Numbers were lost and rearranged from the transfer to the calculator! I had a hard time even dialing the phone. Numbers did not retain their original order. Taking a shower also now required a nap afterward. There are “so many steps”. I have to think every time I take one; remove all clothing, start water by turing both all the way on and gradually shutting the cold off until you reach desirsed temerature, step into shower, place hand on wall for balance, to wash body; find loofa, find body soap, open container, squeeze soap into loofa, wash body, rinse body, rinse loofa and so on through washing my hair and using conditioner, if I had any energy for it!. I felt defeated, and frustrated that I was not able to understand. I was still determined this wasn't going to affect my life like this. I was going to prove the doctors and therapists wrong. Their silly tests couldn't prove anything, I thought! Acceptance would take a long time and many things would simply have to be relearned. Eventually I was just thankful that most things could be relearned, it was just the fatigue that has not been overcome yet, even years later!The other thing I still struggle with, even now, is conversation. Though most people would not be able to tell I have this problem, it is the most frustrating part of the disability, after the fatigue. Nobody can really explain why this is so exhausting other than by a shrugged shoulder, and “it’s all a part of your brain injury”. The best explanation is just that language is very complex! Whatever part of your brain that takes care of “doing things without thinking” was very damaged for me. Now everything took careful thought and consideration including conversation. Part of the problem was not being able concentrate on anything for more than a few minutes. I would slowly have to build my tolerance back up but, even still, it remains a challenge for me. I have grown very accustomed to saying “I don’t understand” or “I forgot to listen, could you say that again, please?” I hear words but my brain just doesn’t always process them in a meaningful way. Other times, I am still trying to process what was just said and figure out if the response I gave made any sense at all. Most people are able to listen to a person and formulate an immediate and spontaneous response, but this is exhausting for me. Not only do you have to “think quickly” (which I no longer am able to do), but you have to retrieve the correct words you are looking for which is another problem for me. So, sentences like, “do you see that gray bin at the reference desk” come out like this: “it is by that, ummm…., bin over there”, because I can’t remember the name for the color and what the name of the desk is. I know that this can be a common problem for anyone distracted or fatigued, but for me this is how I live, reaching and fishing for words! This makes for talking to people in general, and especially in large crowds with lots of noise and distractions, only mildly tolerable at best (and that’s on a good day)! I also have a hard time with the actual processing of language. I hear things differently than they were actually spoken or my brain just leaves out words that are unfamiliar or confusing to me. It makes it impossible to understand the sentence. Here is a classic story about my auditory processing deficits; I was in a store buying socks (because I can't get enough crazy socks) and the cashier said to me "I don't like wearing socks; I just go bare foot most of the time". I just smiled because I hate it when cashiers talk to me; I am so focused on all the steps of paying that I don't want to chat. However, I decided I should not be rude, so I said, “You would get along with my dad, he even throws hay with bare feet". She said, "He must have calluses" but I hear “he must have cows" so I politely answer “no, we have horses". She gave me this really funny, puzzled look (one that I am getting used to seeing) and I immediately knew I had answered her question in the wrong way. So, I said, “I must not have heard you correctly". She then told me what she really said. I agreed, and paid her for the socks. This happens to me all the time, and is worse when I am extra tired. Recently I was asked, “Lisa, why did you want to become a teacher?” I sat there motionless and couldn’t remember. It seemed like a whole other life to me, why did the old Lisa want to be a teacher? After some time I remembered it was because I wanted to help people, especiallychildren. I wanted to make an impact on other’s lives and well, I also just loved learning. My heart was really with teaching children with developmental and learning disabilities (special education, minus the children who just had behavior issues). And, to be honest with you I really did not like “normal/regular” classroom teaching. I loved children with special needs! Then, it dawned on me. I am not teaching now because much like those children I loved working with, I have a disability that limits my ability to effectively teach. However, I have been given a different opportunity to help people by sharing my story with others, disabled or not! I can encourage and give others hope and share the love of a gracious and merciful God in a very powerful way, and, “ironically”, I have to relearn something new every day! I am truly thankful for many things about my new journey....... In his heart a man plans his course, but the LORD determines his steps. Proverbs 16:9