LINK TO MY RECOVERY VIDEO:
VIDEO CLICK HERE
LINK TO MY ORGANIZER:
ORGANIZER TIPS CLICK HERE
What is a Brain Injury, Anyway??? OR “Girlfriend’s Guide to Living with a Brain Injury ”
According to Lisa………..
*ABSOLUTELY EVERYTHING IS EXHAUSTING!! I live in a world now, where there is no such feeling of “well rested”, even 12 hours of sleep at night still means mentally exhausted!
*Feeling "numb" is normal. It feels like you are just watching the world go on but you are not actually a part of it. Perhaps it is sheer exhaustion and perhaps the brain can't keep up with such a rapid world!
*I have trouble switching or transitioning from one task to another; I find it nearly impossible!!!!
*I didn't have an appetite for years; I still don’t really have one, I eat meals at the same time each day to remember.
*Just because I can tolerate more things on a "good day" does not mean I can always or consistently tolerate them. On a "bad day,” my tolerance for any extra sensory input is greatly diminished!!!
*Dialing a phone number (transferring numbers), was a nightmare and beyond me, but being treated “like a child” only made me mad, since in my head, I was a fully functioning 25 year old!
*Talking too much makes me uptight, exhausted, and nauseous, due to “flooding” or too much information for my brain to process!! Language processing is still a struggle and sometimes I just stare blankly during a conversation because I am unable to keep up (the first clue is me repeating “uh huh” over and over; it is the worst on the phone.) But, I still can't help myself, I usually just keep talking, ‘paying’ for it later!!
*I have to write a number next to each activity in my day. At first I needed help; now I can do it myself.
*My short term memory is terrible but is slowly improving (when I use my “memory strategies” like writing EVERYTHING down in one place and using my daily checklists).
*I was an emotional basket case. I cried at every little thing until I was put on a mood stabilizer!
*For the safety of everyone, I am still only "allowed" to drive in familiar areas. I literally can't navigate while driving! I will either forget I am driving or forget to navigate! ONE THING AT A TIME NOW!
* My attention span is greatly diminished; making it very difficult to concentrate on any one task for too long and I am now easily distracted by anything around me!
*Personality changes, you ask?? Here are just a few...........
-Rarely do I get excited about things like I used to. Activities I used to really enjoy, have simply become exhausting and filled with "lots of steps; way too many steps to think about sequencing!" Things that you do “without thinking” take considerable thought and planning!! Now, I am generally apathetic and melancholy.
- Now I like and need time alone (I mean like no TV, no phone calls, no visitors, ALONE). I never used to be this way, I was exactly the opposite, and I loved having people around me 24/7!
- I would be getting mad and not even know it, causing some episodes of what seemed like "flash anger" out of sheer frustration!
- More frequent panic attacks due probably to my inability to cope with all the extra sensory input around me!
- I have a very, very hard time being “flexible.” I like to religiously follow a schedule and want an exact plan for everything!!
- As a result of my injury my brain no longer has a “filter.” I generally say whatever it is I am thinking which, on a positive note, has made me a bit more “outgoing” than I used to be.
* You can now label my injury as "Acquired Brain Injury"(Acquired from a subarachnoid hemorrhage/stroke). BUT, it has still been very traumatic to me!
For more details check out my blog at http://www.walkingtalkingmiracle.blogspot.com
WHAT MY NOTECARDS SAID ON THEM:
Hi! My name is Lisa. As a former teacher, I had originally planned a short vocabulary lesson to help you through your day. Then, being the overachiever that I am began planning an elaborate presentation about my story and recovery. It would of course satisfy all three learning styles; auditory, visual, and kinesthetic or a fancy word for learning by moving and doing. If you have a brain injury the thought of this probably sounds exhausting to you. Don’t worry, it did to me too! So, I am just going to share a VERY short version of my story and recovery then let you ask me questions. I printed out my “Guide to Recovery” for you since I had a lot of responses on my blog from people wanting to give them to family members to help them understand they are not making these things up. You can find links on my blog if you want any more information.
Okay, on that note here we go. I graduated from high school with honors and went on to attend a small private college in Western, NY. I graduated in 2002 with an Elementary Education degree. That summer I also married my husband, Nathan. I taught in a special education classroom until I entered a Master’s program to be a reading specialist. I never finished that degree because, on February 1, 2005 while driving to work an aneurysm or weak vessel in my brain burst causing a hemorrhagic stroke. I passed out immediately and was found unconscious but alive in my Jeep over a steep bank. At the hospital scans revealed the bleeding was so severe, blood now filled my head. Amazed I was even alive at this point, doctors tried to prepare my family for the worst! Realistically, there was little hope of survival. Doctors stabilized me by placing me in a medically induced coma while they prepared to operate. A piece of my skull was removed and a tiny titanium clip was placed to block off the aneurysm from bleeding any more. By the Grace of God I woke up from that surgery. My left arm and hand was completely paralyzed and lay limp at my side but, I recognized my family and spoke in broken, simple sentences. When I had enough of people talking, I would simply say “sleeping” and close my eyes right in the middle of a conversation!! When I was considered medically stable, I was sent to
here in . There I was obviously diagnosed with a brain
injury. You would think that would have
been obvious but I did not have any idea what I had really just lived
through. I was convinced I did great on
those tests and they would tell me I was just fine! I actually distinctly
remember asking my family over and over again if this was a dream or a joke!!
Obviously, I had little grip on reality.
I was sent home after all possible therapy was given speech, occupational and physical. My long term memory seemed fine so I had a memory of “normal life” like walking and talking with complete sentences and reading simple signs but, I had no ability to use these in any functional way now. That had to be taught to me all over again; even though I was convinced I could do all those things! I wasn’t home long before I had some residual bleeding which sent me back to the hospital to have coils placed through my femoral artery into another weak spot close to the first one. I also had a permanent shunt placed in my brain to help with the building cerebral pressure. After this episode my left hand started to respond to my brain trying to move it but, it still had a long way to go to be used again. This time I convinced everyone to let me go home and go to outpatient therapy at Sunnyview, instead of staying there again. I was tired of hospitals! Don’t worry, my father was able to take an extended leave from work and drive me to therapy three times a week. I really still needed help with everything at this point. My balance was terrible and I literally walked right into walls. I couldn’t figure out how to actually make a simple meal like spaghetti, even though I could rattle off how I remembered doing it. So with a husband and family by my side we stumbled through the daily ups and downs of recovery.
At a six month check up, we learned that the coiled aneurysm was growing and now classified as giant and at high risk for another rupture. Doctors were forced to go back in and clip this one too. They also had to remove my temporal artery and use it as a bypass around that artery with all the clips! This surgery is usually performed after a massive stroke in older people and was very, very risky but there was no other choice! I survived this surgery too but at this point was sent back to inpatient therapy at Sunnyview!! Here I learned how to walk AGAIN, and worked on using my left hand. We worked on simple life skills like getting in and out of a bathtub, or car. I learned how to walk up and down stairs and worked on using complete sentences when speaking. Therapists helped me try to focus long enough to read simple signs on doors and worked on making decisions like what to eat for breakfast, lunch or dinner. I still have to repeat to myself over and over what I am trying to accomplish to stay focused! I often was frustrated and mad at people for what I thought was “treating me like a child”. I couldn’t even recognize I could no longer actually do all the things I remember I used to do. I was sad sometimes; I’m not going to lie! It was only my faith that kept me going.
When I think about my whole journey the one word that comes to mind is EXHAUSTION. There are just varying degrees of exhaustion. Some days are better and I can tolerate more things. Some days are still miserable and I just crawl back into bed. Even 7 ½ years later there never seems to be any pattern to the good or bad days, they just are what they are!
I will probably never go back to teaching because it would be too confusing and exhausting for me! But, I do work at a library once a week for four hours checking books in and out for people. It took me a whole year to learn how to do this. Most people can train in two weeks! I started by checking books in and out for a year in the back of the library where it was quiet and had minimal distractions! In the early days, I had a job coach with me for the entire shift, which started at three hours. I’m pretty sure without the job coach advocating for me my gracious employers would not have kept me on staff since I took SO much longer to learn very simple things. I still have a job coach that helps me with things like, using memory strategies. For instance, I have a little list I carry around while I am there to help me answer people’s questions like; “what age do I have to be to get a library card?” I also used to carry around an alphabet strip but have now “graduated” from that. I can usually put things in order without it! I insisted on going back to work and living what I was convinced was a more ‘normal life’ for a 25 year old! My doctors insisted on having the right support while I stubbornly tried, they knew it would be impossible to talk me out of it!! I am pretty sure I could not have done it without my job coach by my side sorting out what confused me, which was pretty much everything. But, that is the joy of working at a library. I do my very best but at the end of the day it is, after all “just a book”. Even though I can still only tolerate very small amounts of time at an actual job it has helped me feel more like me again. I can remember my old self but can no longer identify with her!
Before you ask me questions, I would like to share with you how this slightly neurotic former special education teacher organizes her weeks! I admit, I got most of my ideas from PJ Long’s book Brain on a String. I use this note book with a folder for each day. I look at my planner to see what appointments I have and I put any necessary documents I will need for that day in my folder. My notebook is ALWAYS stocked with plenty of post-it notes which sometimes are used to sick on the dashboard of my Jeep to keep me on track. I also always have a magazine or book in case there is nothing good in waiting rooms! My grocery list is a pre-made one I buy at Target that keeps each food category together. This saves me from a lot of unnecessary walking back and forth to get things. I cross each item off as I put it in my cart and I try hard not to get distracted and off course. It is still a struggle as I am easily distracted by anything around me. If you see me in a grocery store I will be wearing sunglasses and a hat with a brim to block out as much florescent light glare as I can!
So, remember recovery is SLOW! Very, very slow. Celebrate the small victories because they are truly big ones!! Take a lot of deep breaths and drink a lot of water. My neurosurgeons tell me it is good for the brain!! I also brought my computer and would be happy to show you a video of pictures I made from my recovery and therapy, if you do not have a computer or are unable to use one. For the rest of you, there is a link on my blog if you would like to see it! Have a great day today amongst people who truly understand!!!
PS: here is a link to a video clip of me speaking--> please don't compare and contrast, I missed a few things, I know!! My humble apology to my co-presenter Artie! He did great and I'd like to include both presentations but, alas, this silly link refuses to fully download!! Fixating on it for days now, I have tried everything in my power with an unfamiliar program so here is the most I could get!
VIDEO CLICK HERE :-)