old things.

Sometimes I miss my old life.

I recently came across a picture from from Tim's cousin's wedding (2009) and I almost can't believe it's me. The same feeling hits me whenever I see a picture from "before." I look happier, stronger, prettier, more energetic, more fun, much more hopeful....

....and I'm brought back to the reality that I can and will never be the same.

I'm trying to embrace the "starting over" aspect of this stage in my life, but it would be so much easier if I didn't have to.

Maybe I just had more "proof" then. As I take these dangerous strolls down memory lane, there are hundreds of photos from better times. There are dozens of songs and scents that instantly take me back to moments from THEN; when they are encountered, they excite and sadden me simultaneously.

But what about the NOW? Now that I'm "better," I am left with fewer people that I can count on.

As my hair grows out, I am becoming more disconnected. While I realize that many changes needed to be made, it's difficult to adjust to everything at once. Why does the NEW normal have to be so lonely?

My energy levels are not consistent. Sometimes I just want someone to come and sit with me-but I go through my address book on my phone and I have no idea who to call. So I don't. I write a blog post instead.

I just want to be happy or comfortable. I know that it's too much to wish for both-or either.

what tragedy does.

Sickness comes in quickly and forces you to face things that aren't comfortable. It strips you of security-even the security of knowing that you will make it through the day with no problems.

It makes you analyze your relationships in that it reveals who other people really are (it's easy to coast when you only depend on yourself). It makes you reflect-on your life, on your beliefs, on greater meaning.

You spend time waiting it out, hoping that your life will return to "normal" after a certain amount of days or months-but it can never be what it once was because you can't be who you were-and no one is who you thought they were. Or, at least, not who you need them to be.

So you try to rebuild from scratch. And it's exhausting. You try to be positive and consider it to be an opportunity to "start over," but your foundation has been torn apart.

Who knew that the cancer itself would be the easiest part to heal?

city of gray.

"I have woven a parachute out of everything broken."
-William Stafford
Every single day when I was in the radiation machine at Roswell Park, I would imagine what it would be like to launch this project.

http://www.kickstarter.com/projects/983470214/city-of-gray?ref=home_location


Next Friday is our project deadline. If it's not fully funded by then, the project fails and we get nothing. It is my hope that anyone who knows us (or happens upon this blog for whatever reason) will help us reach our goal by helping us spread the word and backing us, if you can.

what brain injury survivors want you to know.

http://www.brainline.org/content/2011/07/lost-found-what-brain-injury-survivors-want-you-to-know.html


This article was brought to my attention by another brain tumor survivor; I could have written most of it myself-particularly:

I need a lot more rest than I used to. I’m not being lazy. I get physical fatigue as well as a “brain fatigue.” It is very difficult and tiring for my brain to think, process, and organize. Fatigue makes it even harder to think.

My stamina fluctuates, even though I may look good or “all better” on the outside. Cognition is a fragile function for a brain injury survivor. Some days are better than others. Pushing too hard usually leads to setbacks, sometimes to illness.

Brain injury rehabilitation takes a very long time; it is usually measured in years. It continues long after formal rehabilitation has ended. Please resist expecting me to be who I was, even though I look better.

I am not being difficult if I resist social situations. Crowds, confusion, and loud sounds quickly overload my brain, it doesn’t filter sounds as well as it used to. Limiting my exposure is a coping strategy, not a behavioral problem.

If I seem sensitive, it could be emotional lability as a result of the injury or it may be a reflection of the extraordinary effort it takes to do things now. Tasks that used to feel “automatic” and take minimal effort, now take much longer, require the implementation of numerous strategies and are huge accomplishments for me.




One of the members of my medical team has told me that brain tumor patients have TWO brain injuries: the damage the tumor has done and then the surgery itself.

turning point.

You have all been through the trenches with me over the past few years-so I thought you deserve to hear something good: I've had a very good week! I'm sure it helps that I got to see wonderful people almost every day this week! Also-my car is back on the road and I drove for the first time in almost 2 years. I have had more than 2 good days in a row and am feeling very hopeful for the first time in a LONG time. :)
It's been an extremely difficult road-but I hope that this is the the turning point.

currently (not to be confused with "currency").

I feel as though I'm not enjoying my time because just living is quite exhausting. It takes double the amount of energy it should just to do "normal" things. Just to walk into a store is a huge milestone. I try REALLY, really hard-but sometimes it's just too much for my brain to process. It shouldn't be so stressful to go to restaurants. Every attempt at normalcy is a mental battle that I spend even more energy trying to hide.

I consider myself to be doing well when there are two or more days in a row where nothing goes wrong. This still doesn't happen often enough.

I need to get away-but how? It's been non-stop stress for 3 years and it is wearing me out. I don't even need anything fancy. I just need to be away from here. "Here" is calling the doctor and waiting for a call back from the disability office. Here is getting denial letters and lay-off emails. Here is waiting and hoping for the hours to go by quickly. Here is sitting on the floor blogging about how frustrating it is when it feels like the world is moving on when I can't-no matter how hard I try. Here feels like failure.

Maybe White Oaks Resort/Spa (or somewhere similar) will have a "brain tumor patient and spouse" weekend giveaway.

I just need life to stop raining...even for a few days.

what they don't tell you about the american dream

....is that sometimes you can work really hard and graduate with honors and devote yourself to your profession and then all of your hard work might pay off because you might get a teaching job in a location where there are literally thousandS of applicants per opening

and then you can pour your time, money, and energy into it because it is so meaningful and important to you and you know that it is your very purpose to be there and you know that this opportunity won't always come around

but then sometimes after all of that you might find yourself in a situation where you can't work anymore because you might get very sick and what will ultimately make you better might make you even more sick

but at least on the VERY bad days, you can imagine yourself healthy and back to doing what you love and it that might help keep you motivated by giving you a reason to get better

but the world moves on even when you can't and other people who are fine will move on without you, gaining time in the field when you are unable to

and then you might get a letter in the mail

and you might try to be positive, but all you will be able to think about is how unfair it is-how it feels like your dream was stolen from you by someone without a brain tumor....but it's not anyone's fault in particular ("just" life)

and then you can just hope for the best. because that's all you've been able to do for 3 years.

and then you can write a song.

http://soundcloud.com/tlipps/patiences-lament-reese (original)
http://soundcloud.com/tlipps/patients-lament-tim-remix (remix)