Thursday Thirteen

Thirteen Things I’m Thankful For

Snowballs- We’ve been a little late with the snow totals this year (I’m not complaining).But when it came to someone’s birthday this year we faced the first year, in my memory, without snow. With a little creative thinking there were still a couple of snowballs at the party.

Professional Patients- As many specialists as I tend to see during the year I do not have a PCP. I often rely on other professional patients for advice. Specialists & the internet are great tools but it helps to talk to someone who has more experience from the other side of things.

Personal Projects- I’ve searched twitter high & low for as many CP related twitter people I could find & put them together. I only wish I could find more. But more importantly I’m glad I finally did it instead of just thinking about it.

Unplugging- I know everyone’s all into their smart phones but I’m really thankful that I don’t have one. There are days when technology is barely existent in my life. I may be in the minority in this one but I really like it.

That the holidays are over- I’ve probably already said this but I’m so glad the holidays are behind us for another year. Now that I’ve “leveled off” I can now see how stressed out & tired I was for an entire month. I wasn’t really enjoying myself. I’m ready for the steady stream of birthdays.

Sunday- This may seem like the most obvious one but when I say Sunday I don’t always mean Sunday. I like having one day a week where I can shut the world out as much as I’d like to & chill. It really helps the rest of my week so smoother.

My Hearing- You read right. I’m thankful I still have my hearing. Nothing’s happened to specifically raise concerns. It was during casual conversation that I’ve come to appreciate what people take for granted. I won’t always be so lucky so I’ll take what I can get while I have it.

Music- Nothing makes a day better than cranking up some tunes, no matter what kind of day you’re having. It became a running joke in college about how I was always listening to music when I wasn’t in class. I was “always jammin’” Music always makes my day better.

Cleaning- I’m actually not that big on cleaning on a daily basis but when things get too cluttered I’m more than happy to start pitching stuff. It makes me feel a lot better when things are less chaotic

Trying Again- It’s just great to get to try something again, especially if it didn’t go so well the first time.

Having A Platform- Sometimes I find technology overwhelming, see above comment on unplugging, but I am grateful for the platform it’s given me to be able to connect with people (see above about Professional Patients).

Military Men & Women- Now that all combat troops are home I wonder if people will remember that there are people constantly serving our country all over the world. We shouldn’t forget them because they don’t forget about us.

The Big Blue Wrecking Crew

2011: A Review

I meant to do this last month after finding it on another blog but reviewing the year one month ago was a lot harder then than it is now. Time does not heal all wounds but it does start to put a permanent scab over them.

1. What did you do in 2011 that you’d never done before?
I don’t think I managed this one in a grand sense. If anything I’ve rediscovered doing things I hadn’t done in years, thanks to chronic pain.

2. Did you keep your new year’s resolutions; and will you make more for next year?
Nope. I won’t make more for this year. If I do anything I’ll roll over the goals I didn’t get to last time.

3. Did anyone close to you give birth?
Yes. I somehow surrounded myself with family & friends who are very pro in the life department.

4. Did anyone close to you die?
Yes, mere days before someone gave birth. Life’s mean like that.

5. What countries did you visit?
None. I’m not a big international traveler, yet.

6. What would you like to have in 2012 that you lacked in 2011?
Control would be nice but that’s a pipe dream. I’d really like to be more easy going and more confident.

7. What dates from 2011 will remain etched upon your memory, and why?
July 8 –August 8. There was an anniversary. Profession of 1^st vows. Birthdays. A Death. A birth. A Wake. A Funeral. It all ended in such a blur I can’t remember many details, but I still can’t forget it.

8. What was your biggest achievement of the year?
Not completely cracking up post August.

9. What was your biggest failure?
Not getting a new job.

10. Did you suffer illness or injury?
I managed to stay pretty healthy. There were a few minor hip issues, but that’s pretty par for the course.

11. What was the best thing you bought?
Christmas gifts

12. Where did most of your money go?
Personal health care.

13. What did you get really excited about?
Seeing a friend in his first Broadway tour.

14. What song will always remind you of 2011?
This by Darius Rucker

15. Compared to this time last year, are you:
– happier or sadder? Sadder
– thinner or fatter? Thinner
– richer or poorer? Richer, I think.

16. What do you wish you’d done more of?
Connecting with people.

17. What do you wish you’d done less of?
Crying

18. How did you spend Christmas?
With family

19. What was your favorite TV program?
NCIS

20. What were your favorite books of the year?
Someone Like Me by John W. Quinn
Mrs. Mike by Benedict & Nancy Freedman

21. What was your favorite music from this year?
Anything that could keep my mind where I wanted it to be at that given time

22. What were your favorite films of the year?
The re-release of The Lion King

23. What did you do on your birthday, and how old were you?
It was so long ago I can’t remember exactly. I know I worked that night, awesome way to turn 27 really.

24. What one thing would have made your year immeasurably more satisfying?
If everything didn’t feel like it was happening all in one month, and then actually happen that way. Things would’ve been more manageable, and then more satisfying, if things were spread out.

25. How would you describe your personal fashion concept in 2011?
I can honestly say it was centered on uniforms & dress codes.

26. What kept you sane?
Friends & family.

27. Tell us a valuable life lesson you learned in 2011.
Life is not to be taken for granted

Make A Difference Monday

Wall: The Journey Up

Do I really need to say more?

The Girl In Bed A

I never really went in depth about my time in the hospital, for a lot of reasons. The biggest is that I was pretty drugged up and couldn’t do much, with or without drugs. And those times I did give you a look inside, I don’t remember it (see previous sentence about drugs). Another reason is it’s pretty difficult to look back on an event 2 & a half years ago and have people listen to you.

For the most part my stint in the big house was pleasant (I’ve said that before haven’t I?).

Towards the end of my stay I was sent to a new room. As I was wheeled down the hall I kept my eyes on the ceiling to lessen the effects of the tilt-a-whirl I had been riding for days (just the idea of being in a rolling bed wasn’t cool never mind it happening). I had no idea where I was going. I just hoped we got there fast!

It took me a few minutes to register what had just happened. I was in a bigger room but I felt squeezed in. I was still by the window, there wasn’t much of a view but it helped me focus on life after discharge.

Then I heard a voice, “Yeah, I don’t have my own room anymore. I said I don’t have my own room anymore.”

Crap I’m in Bed B.

In college I interned at a local hospital. After my first day I called my mother. I needed more of an education than I had been given. I didn’t want to talk to the wrong patient, and make a fool of myself.

“Bed A is by the door. Bed B is by the wall or window. Always. If there’s one bed in the room it’s still considered Bed A. If there are 2 beds in the room & one patient & they’re by the window they’re in Bed B.”

Once I had that straight, which took a while thanks to my nerves, I came to the conclusion that Bed B was probably the lesser of the two beds. I figured people forgot you were there. Nurses probably made mistakes more than they should and gave one patient 2 dinners while one got none.

Now I was the patient in Bed B.

Before I knew it someone was standing a few feet from the foot of my bed. It was my new roommate. “Did you have spinal surgery too?”

I actually had to think about how I wanted to answer this. The long answer was yes. The shorter, and reason why I was actually here was no. I settled on, “No.”

“Lucky you. Wait until your doctor makes you get up & walk, it really sucks.”

If I had the energy I think I would’ve said something. My mother later said I should’ve pulled back my blankets & given my roommate an eyeful, which included but I’m not sure was limited to an “A Pillow” a regular pillow to hold my PCA within arms reach, an almighty controller, a bucket, a teddy bear my grandma insisted I have, a Ven0dyne boot, an epidural & all that must come with it, in addition to a very bright yellow cast. Forget the technological comforts, there was enough essential technology. It was a full bed, but at least I had the window.

What’s worse was that the bathroom was closer to Bed B. The Girl in Bed A was ambulatory. I was far from it. I had to watch her walk to the bathroom multiple times a day bitching & moaning all the way. Even worse than that, she walked around with the back of her gown open 98% of the time.

I was pretty sure I was in for some of the longest days of my life. And I was trapped in bed with no way out, at least until they removed the epidural, and I wheeled myself down the hall at the earliest opportunity.

The next morning I sent my mother to find my day nurse from the day before. The previous 12 hours were less than pleasant; I wanted something/someone pleasant. Once a familiar face peered around the curtain the experience got better.

PT came for us every day, twice a day. I stayed in the room while she took a “stroll” around the unit. She did more work than I did by default & did make it known. There was very little to be jealous of but I found myself jealous of her anyway.

She could walk around. She could sit up without help. I was dying to “test drive” the hours of manual labor & modern engineering that went into me, especially after regaining sensation that I had lost sometime in the late 80s. Sometimes I didn’t care if I’d collapse as a result. I wanted to try, if only I could get out of bed. She complained before she even got out of bed and ate odor filled meals. Have I mentioned she had the back of her gown open a lot?

Eventually I found humor in the whole thing. A good thing about being in Bed B? You’re behind a curtain so you can laugh (and roll your eyes) to your heart’s content, as long as you can bury your face far enough in your pillow to muffle the noise & no one’s the wiser.

I’d like to tell you that we became best friends and that I talk to her almost every day. The reality is I asked daily (if not more often) if I could be moved to another room, any other room. If I wasn’t doing that I was hoping that she’d get discharged before me so I could have 10 minutes out of her orbit before someone else moved in.

As much as my time with “The Girl In Bed A” could fall into the unpleasant column of life experiences I wonder about her; if her post-op recovery was a success, if she’s O.K, if she grew up (at least a little) more from the experience.

Luxury Of Indecision

Anyone will tell you life is full of decisions. Each one has its own unique set of circumstances but the turning point is always the same, the point where your decision is made.

Group dynamics often spells for decision making. Living with 3 others we often used the fist to five method (which was taught to us, it’s not like we came up with it on our own) “fist” meaning 0, being an only child 98% of the time I gave ideas a three. Having little practice with that thing called compromise I figured giving a 3 would be considered the good compromise. Eventually though I was told that I had to pick any number except 3. I couldn’t always be “Switzerland.” However I held firm with my 3s, so much for that compromise thing.

Often times I would be angry with a decision, or how a conversation went to make the decision. I never let it show, or tried not to, because I was part of a group. What the group wanted I had to go with, because I was part of the group.

It wasn’t until later that I found out that the decision process wasn’t that wonderful for everyone either, because my “special needs” had to be taken into account, whether I voiced them or not. I was the first person with a disability any of them had lived with. They were the first people I had ever lived with that didn’t know I had a disability before meeting/living together. It was a learning process for all.

If you read Through My Eyes My Life With Cerebral Palsy you know that Laura’s doing a series on the process of moving as someone with a disability. If you don’t read Laura’s blog I encourage you to look into it even if you (or your child) are years away from it.

In my 20s (so that does include now) I found myself getting frustrated more easily with my peers (& friends). Things just seemed to work out so easily for them. The next phase in their life practically fell into their laps.

One job interview & they’d have a job. Two interviews & they’d have their choice of jobs. Better yet, they’d just get offers. There is a decision to be made, however when you’re handed something it’s really hard to turn it down.

Looking for somewhere to live was no different. Find a place & live in it, as long as you can afford it it worked out fine. Even roommates were a no-brainer, if they were even needed.

I’m no dummy I know it takes more “work” for things to work out for me. A 5 floor walkup in New York City is out of the question, on a very bad day I get winded after 3 flights of stairs. I need to look over every inch of a potential living situation (if available) before committing from shelving to flooring.

Accepting a job means more than just liking it & being qualified. Can I perform even when I’m not in the best shape? For me, if a job is so demanding that I’d need to take time off to recover than it’s not for me. Will I have to disclose my disability during the interview process, which I know I don’t have to do, but would do if it felt like the best decision. Well that’s still case by case for me.

It isn’t fair. But its how life works. And no one said life was fair.

Even if something were to fall in my lap. I’d have to think about it. A lot. And turning it down? It’s a lot harder when it’s just there for the taking.

People often ask me about my decision to attend college (& all other subsequent decisions). I never saw it as a big deal. I never understood why people saw it that way either. Now I know for sure, college is the easy part; the real world is slightly more difficult.

Making decisions is important, essential for daily life. However there’s always going to be someone who has to make more decisions than you when faced with the same situation.

There is indeed a luxury in indecision (as in not needing to make the decision at all)