This is what I drank in training, and the Ironman. Now it's the Goofy Challenge

Monday, May 15, 2006

How I live with Tramatic Brain Injury

Ever since I woke up in the hospital after my surgery, I have had the biggest problem remembering things. The technical words are Short Term Memory Deficit. When people here the words "I have a memory problem" What follows is usually something like "yeah me to", or "I wish I had brain injury to blame for my forgetfulness “I find this along the same lines as "I wish I was blind so my hearing would get better" being said to someone who lost there vision. It's insulting. I know they mean well, but it still diminishes what I have gone through. I also have problems with people not understanding that this is a disability. I don't think I would have been approved of disability if this was some simple "memory issue" it is so much more. People just don't understand that it is not an excuse to "forgot to get the milk honey" Or "I forgot your birthday".

What people just don't get, is how I can remember some things one day but not the next. How can I remember to go to the grocery store, but forget why I went? I know I am there to shop, but shop for what? What do I need? What do I like? Do I like that toothpaste? Do I need toothpaste? Do I have milk? What kind of milk do I need, skin milk, whole milk, 2% milk? What size a bottle, etc. This happens with everything I need at the grocery store. It is so confusing. By the time I remember I need a 2%, 954kl bottle of milk. I forgot I need eggs. I get embarrassed. What’s worse is when a helpful staff member asks if I found what I am looking for. "I don't know what I am looking for". This often leaves helpful staff very confused. People don't get how I could not know why I am at the grocery store. Not to mention I must freak out security. Why is he walking down the same isle over and over again. Don't get me started about Malls. So many places so many people my brain just doesn’t stop. Its called flooding. Its like when to many programs run on your computer at once, it just slows everything down. I just grab on to Mandy and follow here around. I just hope no sales person talks to me while she is in a change room. In the months since I left the hospital I have come across some very affective strategies to get through what most people take for granted.

1) Post it notes are a god send. I have them every where in my house with a pen attached. By every phone, by the doors, in the bathroom.





2) I also need very specific goals. I have a long term goal, an intermediate goal, and short term or daily goals. They also all link together. My long term goals are say "graduate from college with a nursing degree", intermediate goals are "enrol in school", Short term goals are "contact college and find out how to register" All the goals link together. I also have a long term goal of running a marathon in October of this year. I have intermediate goals of distance, and planning the trip and hotels there. Short term goals are "run 5k today" I have to keep these things up to date or I will lose sight of the different goals. It also helps me keep track of what I accomplish. One pleasant side effect of the memory loss is that I look at what I did in the preceding month and impress myself "I ran that far", "I signed up for school...cool". If you look at the picture of my board above this is where I keep a log of all my goals. As I complete them I cross them off, and add new ones as they arise. Also my “daily to do list” is essential for every day tasks, It says things like "go to Safeway, get milk, do not buy anything else", "Bring book for Biology to Biology teacher, study Biology" "start looking for housing" "put gas in mustang" "go to gym do abs, and chest, light run" This was organized for me by a very patient Mandy. Thank you Mandy. I highly recommend people get a Mandy.

3) The third important thing is that everyone has to work with you. Not only do I need to make sure they right things down on the post it notes for me. I need to make sure they see me right things down to. It is not enough to tell me that my physiotherapy called and they changed the appointment. I will say "oh ok" and show up for the original appointment. So I have to make sure that I then right that on my note board, my day planner, and my calendar. If I do not, and I don't also take out the original appointment. I will get very confused. I also get grumpy when people tell me to "put it in my planner" I don't know why, I know I need to. I guess I just don't like being told what to do. It reminds me that I have brain injury. I just want to be normal again. But if they don't see me right it down. I probably didn’t.

4) Keep notes of everything you do, every day. I have to write down that I paid Visa yesterday. If I don't I will pay it again. I have paid my cell phone bill twice, in the same month. When your living off of disability that is allot of money. I have to right it down when it happens, which during a busy day, can be time consuming. Again if I don't right it at that minute, I won't remember it later.

5) Google has a new calendar feature. It is just like all other calendars with a day and month schedule, it also has a daily to do list. It has the option to remind you of scheduled events, if you add this reminder feature during your set up. So I get little flashes on my computer that say "Math in two hours prepare to leave" This is just another form of reminder, and I will take all I can get. The coolest part of this easy to use scheduler is you can allow others access to your schedule. You have to invite them for your own security, but when I told my fiancĂ© about this the possibilities seem remarkable. She can make sure I have added important events, plus keep track of events as I enter them, or complete them. It makes tracking several people's schedules a little easier. I highly recommend it for the Memory impaired, or busy family's trying to keep track of everyone’s schedules.

6) Very supportive people in my live. Without my Fiancé, my sister, my parents, and my friends understanding what I am going through, I would be lost. Professional help is also needed, I have had great Speech Pathologists, Physiotherapists, Occupational Therapists, and Social Service people. These people have experience with traumatic brain injury. Use them. There is no way I would get through this, without all these sources of information. I would not be training for a marathon, I would not be in school. Without the support of all these people to help lighten the load. I don't know where I would be.

7) Research. The best thing I did was to start researching Traumatic Brain Injury. I found books, I found support group’s. Check out your local government listings. Check out people with a disability information. One book I highly recommend is "Over my Head" by Claudia L. Osborn it is essential reading for traumatic brain injury survivors. I keep my copy on my nightstand. You can order a copy online at her website http://www.claudiaosborn.com/ she has allot of useful links to.

Another part of the research is that you will find very few answers. My Dr., Occupational Therapists, and Social Services all are very confusing to deal with. It is not from an unwilling to help. It is because there is no “How to deal with the brain injured” course they take. Don’t go along with the boat. Question everything. Talk to a Speech Pathologist as they seam to be the most knowledgeable. Also sign up with a support group. People who have been where you are now.

8) A good sense of humour and a belief that it will get better. I am lucky to be alive. I will never again be the person I was before. I have strange moods, I get frustrated, and on my bad days I feel hopeless. I lost so much, my home, my job, my memory, my privacy, my sense of who I am. I forgot everything. On the other hand. I am alive, I can walk and talk (I wasn’t ever supposed to be able to do that again) I am back in school after almost 16 years since leaving. I got engaged, and I am training for a Marathon. I don't know how much of this would have happened had I not had my accident. I don't really care. As long as I worry about what I once was, I will never realize my full potential.

After leaving home at 15, winding up homeless on the downtown east side of Vancouver, after 15 years of doing drugs. Going into recovery, being sober for over 5 years. Getting a job. Overcoming a stroke and having my skull removed for 30 days. Surviving Traumatic Brain Injury. I am alive, I am in love, I am starting college, and training for a Marathon. I am very lucky

6 comments:

Megan, SLP said...

Thanks for sharing this with others Dave (and thanks for sharing your blog with me). I'm glad you found the book helpful. What an amazing attitude and strength you have! See you soon!

Dave said...

I wont forget your book!!! lol

mandy said...

I'm really proud of you David. Really & Truly!

Dave said...

well I give all the credit to my Mandy, I recomend you get one. I can set you up? I know the right people....

Parry said...

I, for one, am not proud of you at all. I'd suggest you stop whining, but you'd probably forget to stop so you'd continue anyways. Wait... what was I talking about? Who are you? Good God, what is that awful smell?

Mandy said...

It's obviously you Parry...I mean if you smelt odd smells in Vancouver and then now in Holland (that no one else seems to notice), we can only logically claim that the smell emits from you!

Hope you are well! :)