Use It or Lose It

If I don't do therapy, will I lose all my progress? 

As I began my post-surgery rehab, my surgeon stressed the importance of being diligent about doing both physical and occupational therapy. As I have said before, physical therapy comes naturally to me. I enjoy being physical. Still, I find occupational therapy one of the most frustrating things I've done. 

To move my fingers individually requires a lot of effort. It's hard to describe what I feel (which is not necessarily where they are in space or anything that they are touching...or that they are touching anything!) They feel stiff and heavy, and pressure is all around them, especially at the fingertips. They don't at all do what I feel like they should; it's hard to get them to work well at all. It's truly exhausting to use my fingers and hand.

It literally takes nagging or a lot of effort to get me to work on my fine motor skills. It's not that I don't care; it's only that I don't want to go through the trouble. Does that mean that it doesn't matter to me? 

No, I guess just hope I improve without effort.

News Flash: I won't. When my surgeon talked about the importance of therapy, he said "Use it or lose it." I desperately don't want to lose it, but if I am being honest, I need motivation to use it.

My big concern right now is writing and typing. I mean, using a hair brush and a tooth brush, among other things, is important, but I think I need to go one step at a time. As I type this with one hand I realize that I have gotten accustomed to ignoring "Righty." If I don't utilize my right hand then I don't really have room to complain. 

Sooo baby steps it is. I need to commit to using my right hand to brush my hair and my teeth (I can finish up with my left hand) and it's time to use this bad boy:

That's right; it's a really large keyboard. It's huge. People laugh when they see it. But it's easier for the fingers on my right hand to navigate the large keys. It's one of my occupational therapy tools. I think if I am actually patient and diligent about it, I will make progress.

Patience and progress seem to be the themes throughout this whole endeavor. I can be physically active as much as I want, but if I don't give my right hand the time it needs, I am bound to lose all the fine motor skills that I crave. Hopefully that is motivation enough.


If anyone has recommendations for thick pens (think the girth of one of those fat highlighters) let me know.

I Will Not Let My Foot Stand In My Way

I would say that frustration is a very familiar emotion to me. There are things that I deal with on a daily basis that aggravate me. I scream, throw things, totally break down sometimes. However, I have also developed my patience. Things that I wouldn't have time for in the old days, are now things that I have learned to take a deep breath and take my time with - writing my name, tying my shoes, holding something with my right hand, going down stairs, picking things up etc. But right now I am pissed off. Like, honest to goodness MAD. Why? Because my stupid right foot has morphed into something that is NOT worth "just dealing" with. My arch has seemed to drop, presumably because signals from my brain are not being sent to my foot when I walk, stand, etc. So when I walk my foot turns out and I push off the inside of it. It's hard to explain or describe but it makes wearing shoes very hard. As I have said before, I can't wear heels (for now!!) and certain flats and sandals are a no-go. Well, I have scoped these flats out for a while, inspecting them, trying them on in the store, telling myself that they would actually work for me! So I got them.

Aldo Corinette $80  http://www.aldoshoes.com/us/women/shoes/flats/91939776-corinette/36&flagid=f12studs

Look how cute!!

I got home and immediately wore them around my apartment. They are quite comfy and easy to wear. No pinching or potential of future blisters. BUT my damn right foot doesn't keep the shoe on!! It's like my arch/inside of my foot pushes it off! This is not okay for me! I was set on having a cute pair of flats to wear around, look stylish in, jazz up some outfits. But no! My right foot seems to not care about those things!

I don't know if this picture does justice to this dilemma. Can you see how my right arch/ankle (left of the pic) look different? NOT OK!!

Nope; I am not returning the shoes. I am not telling myself that "it is what it is" and just not wearing them. I am going to fix this. I am not letting this foot and ankle problem win. This is finally motivation for me to ask someone about this. Exercise and re-teaching my body how to move by using exercise, resistance, and weights, are things that saved me. I am going to use those methods again to fix this. By making my muscles do certain things, I in turn, teach my brain those movements, and train it so that those movements become natural. I can guarantee that this will be a long process; there is no fixing my arch/ankle/foot by next week. But it WILL happen. 

Don't you dare try to get in the way of me and something I think is cute. I'll run ya right over.

Will this help in the meantime?
http://www.skymall.com/shopping/detail.htm?pid=203251316&c=10640

This??
http://www.skymall.com/shopping/detail.htm?pid=69751722&c=10640#

To get these adorable flats go to http://www.aldoshoes.com/us/women/shoes/flats/91939776-corinette/36&flagid=f12studs

I Hate Weekends

The weekend is something that I am pretty sure most every person I know looks forward to. There is even a lovely song about working for it.  It means no work (usually), seeing friends, gettin' crunk (ha!) etc. But it's been only semi recently that the weekend signifies something positive for me. For a solid two, two and a half years, I DREADED the weekend.

Anyone who has had to stay in the hospital for a long amount of time can say that weekends mean the absence of visitors, doctors, noise, everything. At first I was ok with this. It was almost a relief to be alone, sitting in bed, and resting. I almost didn't mind not having any interruptions. But shortly after that it was dreadful. I cannot say that every weekend was like this. There were some that I  had company which helped tremendously. But there were those 2 days when I had no visitors, no doctors checking on me, no therapy. It was just me alone with my own thoughts, which believe me, at that time was a dangerous thing.

Things didn't get that much better when I moved home. Once again, the weekend meant quiet. No therapy; no workouts; no friends around to keep me company. Once again, the weekend was void of all things busy or distracting. And it didn't change that much when I moved back to New York. When I returned, it was easy to think about my life before my brain injury, when Friday night, Saturday, and Sunday were motivation to get me through a long week (when I wasn't working). But the second time around it was different. Not only did my closest friends trickle out of the city, moving around the United States, and my boyfriend (now husband) lived in Memphis, I learned that I was different. I had new limitations. I could no longer live the way that I used to live: full of friends, a boyfriend, and a care-free attitude.  Soon my weekends were filled with me only talking to the people at Starbucks and maybe the grocery store. Don't get me wrong, I love, and need, a little bit of "me time" but when it's consistent, t gets a little lonely.

NYC street fair on a Sunday afternoon in the early fall

I don't speak in absolutes (as a wise man once advised). Not all my weekends were dreadful. Obviously I had plenty of good times during the end of the week, looking forward to them. But I would say, on the whole, the weekend was always something I hated. Recently however, I have once again returned to the familiar life that I once knew. Between my husband, new good friends, and just me feeling better about my own self and life, I look forward to the weekends again. And if I am all alone, my thoughts aren't so dangerous anymore.

All You Can Do is Laugh

As I have said before, my brain injury was totally random. I was more or less sucker punched with the crazy symptoms, almost unable to wrap my head around what was REALLY happening. Then suddenly I was being told that I had to have brain surgery, which I definitely didn't understand until after the surgery. So it doesn't shock me that I had no idea what I was in for after surgery. My surgeon told me that I would go to a therapy hospital, where I would be put through the ringer doing physical, and occupational therapy among other activities that would help me. When I heard this, first of all, I didn't understand my physical limitations, and second of all, when I heard the words 'physical therapy' I envisioned myself running on a treadmill, lifting weights, maybe doing some resistance bands. I was a Division 1 college athlete, what do you expect? When I actually got to the therapy hospital reality hit me hard.

I was suddenly very aware of the fact that I was not in a state-of-the-art athletic training center. I was in another hospital surrounded with people who had sever brain injuries. I had done a little therapy in my first hospital, just "walking" and practicing brushing my teeth and hair with my right/"bad" hand. Though I could barely walk, and barely brush my teeth and hair, I still envisioned myself running laps and hand writing a term paper in weeks. That was not so much the case. I had to come face to face with my 'disabilities.' (I really hate using that word because I don't, and have never, thought of myself as disabled). DEaling with my own problems was intense enough but what really made an impact on me was what I saw every day. Every day my heart would break, and every day I had a new ridiculous story. I feel like being in the brain trauma unit of a therapy hospital and being comprehensive is  honestly like witnessing a different world that many don't even know exist!

Therapy Hospital - The Saga Begins

View from my room at my therapy hospital

I arrived at the therapy hospital in complete shock. Like I said, I had no idea that this was what it was. I thought I would get right to work doing therapy...not so much. I was put in my bed that was next to my new roommate's bed. The only thing separating us was the same type of hospital curtain you see at any hospital. She wasn't there when I got there as she was at therapy, but in her absence disco music was blaring from a little radio next to her bed. I was immediately worried. I was told that she was an 80-something year old woman named Connie who wasn't completely 'with it.' Aaaand more worried. I never REALLY interacted with Connie, but I came to LOVE listening to her!

Connie was hysterical. No, she wasn't really with it, but she was cognitive enough to talk to everyone who interacted with her. Every morning when the nurses would come in and get her ready for her day, they would obviously move her around, getting her washed and dressed, and I would hear her from the other side of the curtain saying in a thick Long Island accent, "Aaaah take it easyyyy! I'm an old laaadddyyy!!!" and when the nurses would ask her something, like what shirt she wanted to wear, or if she wanted to eat breakfast, she would always reply with, "oh whatevaah!"

One day, one of Connie's daughters was there (who were both wonderful women) Connie was kind of babbling, not saying anything sensible, she suddenly broke out into some sort of Italian song. It was actually pretty amazing that she pulled an entire song in another language from her memory during a moment where it seemed like there wasn't a whole lot going on. It was also quite cute.

Every other day, a doctor would come into the room and do mental exercises with Connie. I felt so lucky when I was in the room when this would happen! It was usually an exercise where the doctor/therapist, would read some sort of sentence or catch phrase and Connie would have to fill in a word. Normally, she was very good at this. The therapist would say things like "Ok Connie, finish the sentence: the radio isn't loud enough; please turn it..." and Connie would say, "up!" Connie got really good at this little game, advancing to harder sentences. Some would say that Connie just couldn't handle this exercise very well, but I kind of think that maybe she was just messing with the therapist. One day, the therapist said "Connie, finish the sentence: Jack and Jill ran up the...."  and Connie finished the sentence with,"Tunnel of loooove!!" another time, while playing the same game, the therapist said "It is raining cats and...." and Connie replied "Paaancakes!!"

Connie left to go to a less intense therapy hospital after about 2 weeks of me being there. I was honestly sad to see her go. I didn't know this at the time, but she was the perfect hospital roommate. She slept through the night, didn't say much, and when she spoke up, it provided me with such entertainment! My next roommate, honestly bless her heart, wasn't quite as low-maintenance (more on that later).  Connie, though she didn't know it, helped to keep my mood light in a time that I was starting to sink into a dark hole.

I could write a book about my experience at therapy hospital, from people ODing on drugs, and trying to commit suicide, to people who just had awful, life hanging things happen to them.  I also witnessed things that were probably ultimately sad (more on that in another post!), but really, all you can do is laugh.