New Podcast!

So I've been itching to do a podcast since my rehab days at Mount Sinai. Now that I'm proficient with my quad hands and audacity, I finally got it together. It's a work in progress so bear with me as my editing skills develop. It's also not easy with the nuvois device as it makes that robotic buzzing noise. Still, at least I can speak audibly and am psyched to get this thing going. In about a month, I'll go to Boston for another surgery toward getting the trach out but until then, I want to have some fun and enjoy the good weather.

The target audience is for the newly injured, those in rehab, transitioning out and their loved ones. It's to address issues with navigating the health care system, and to mobilize this group for a cure. It's also to inform the general public through reaching loved ones of spinal cord injury. There are many of my loved ones who are still in the dark about what my injury is and what it means. It's not something to feel sorry for but to be enlightened by, to examine oneself.

Finally, it's also to just have fun! (agosar!) To hear real people who despite all of what this injury entails find friendship and can have a flippin' good time! So there will be some music and smack talk in the mix as well.

Cirque du soleil

Yes, I had the privilege of seeing cirque du soleil thanks to the Urban outings program funded by the NYC chapter of NSCIA. Luckily, it was a gorgeous day since we had to wait outside the tents for a while. Now I've been to the circus once as a young child but did not know what to expect as an adult. For those who are thinking about seeing this show, it will certainly spark your inner child and you will be wowed all over again!

We had special seating in the front, the staff was very accomodating. One usher brought my popcorn and hotdog and when I moved to find the restroom, someone immediately came to lead me out. There was a wheelchair accessible restroom right outside the tent and someone waited for me to lead me back in. Doing trach care at the sink was difficult but it didn't matter since everything went so smoothly.

The whole production was on point. The one thing I noticed was that I kept trying to see how they organized the show and I just couldn't keep up with them! They had a huge scaffold up at the top of the tent above the stage and more and more contraptions kept coming from it for the next act. The format was classic circus: started out with clowns interacting with the crowd before lights went out. Then, an innocent central character seems to stumble upon a twisted jack-in-the-box, unleashing a phantasmic yet terrifying world. Where a dozen wonderfully costumed dancers entered the stage was also a carousel of sorts with other characters: a live band and vocalists! The sound production was was so impressive and there were acts where it seemed to become an all out rock concert. I don't want to say anymore except that if you have an opportunity to see KOOZA, it's well worth traveling to see and still great for kids!


Show continues in NY until June 7th! Here's a link to their site.

Patience

Yesterday was the first day I went out by myself on access-a-ride. The wrench in the whole trip was that my e-motion wheels didn't charge the day previous. I remember telling my CNA to make sure the charger was properly connected and that the light indicator was on. As I fumed in frustration at my bleeping wheels, imagining myself strangling her, I understood exactly why she didn't understand or carry out my instructions. She has a tendency to take the first two words I say and run with it without fully understanding. She is old school Jamaican and has a lot of cultural pride. She tends to brush me off when I'm being serious about something and it is the bane of my existence here! Jamaicans comprise the majority of the workers in healthcare now and for me, it poses real cultural barriers that really try my patience.

I'm not a very patient person. It's been something I've been struggling with especially now that I am physically dependent on people and have a lack of audible voice. If I explain something to somebody and they continuously don't get it, I have no quams unleashing my frustrations with them. If somebody rubs me wrong, I have no problem telling them where to put it. Although there's a satisfaction in being raw with people, the problem now is that people either a)can't understand what I say or, b)pretend not to understand (I suspect usually the latter). It also doesn't intice the person to want to help me later if I need something. So I've had to develop a lot of patience with caregivers (regardless how obtuse).

I've also had to develop patience with myself during recovery and realize that things don't happen on my time. Things don't happen necessarily because we want them to but to make us better people for God's glory. Maybe there is someone we are set to give hope and direction to but without God sharpening us with a little hardship, we wouldn't have the patience to minister to them. God has a tremendous amount of patience and mercy with us and he has exemplified this through his son, Jesus Christ. When we yield to God's spirit we realize that it's not about us but about an opportunity to fulfill his will for unity and ultimate fellowship. Instead of me getting my ego off, I should give thanks for God's love and mercy and show others God's love and mercy.

Romans 15:1-6
We then who are strong ought to bear with the scruples of the weak, and not to please ourselves.

Let each of us please his neighbor for his good, leading to edification.

For even Christ did not please Himself; but as it is written, "The reproaches of those who reproached You fell on Me." [fn]

For whatever things were written before were written for our learning, that we through the patience and comfort of the Scriptures might have hope.

Now may the God of patience and comfort grant you to be like-minded toward one another, according to Christ Jesus,

that you may with one mind and one mouth glorify the God and Father of our Lord Jesus Christ.

Boston news

Last tuesday, I went Mass General for a bronchoscopy to see what Dr. Mathisen could do about my tracheal stenosis. The plan is to regain more useable trachea before doing a resection. Next month, I'll get aT-tube in which is shorter than the trach I have now. Then a few months later, they'll do the resection, which is, cutting out the scar tissue from my trachea and sewing the good ends together. I'll then spend a week with my chin sewn to my chest while my trach heals! Pretty fuckin wild, they're gonna have to give me reeeaally good drugs to behave! It's funny, every time I go under, I try to remember going to sleep. Instead, I'm just waking up to them wheeling me into the PACU. This time, my mouth was swollen and sore from the scope they put down my throat. I can imagine them stretching my mouth to inhuman proportions, cracking jokes along the way. I don't care. I'm exactly where I need to be to get this thing out. Mass General is a huge hospital but very well organized. Unlike Mount Sinai, I didn't wait long for an X-ray and they never sent me anywhere without a nurse! My nurses were incredible and the trach care was on point. My dad was cool to arrage TV services for me. I watched "American Idol" for the fiirst time in ages. Did anyone dig that gothic/mideastern "Ring of fire" cover? That shit was wild!

I forgot to mention my birthday last month. I actually celebrated mine on fat tues. I went out for the first time to socialize at a bar/club with friends. It was also a fundraiser for the Nat. Spinal Cord Injury Assoc. So lots of chairs! I felt comfortable and got decked out. I actually wore make up! Bright red lipstick and stiletto mascara. I wore a white glittery mask and had a girly punk look, sporting red chucks and a leather bracelet. I had a red tank top giving nice cleavage and a sheer blouse over it with silver buttons that complimented my silver star earrings. I strapped on a decent buzz and had a good time. A few of my college friends were there so it was cool. We're all older and chiller now so no one was lining up shots. I should have taken pictures but I was having such a good time, I forgot. The only awkward thing was not being able to speak to people in a loud atmosphere. It felt good to dress up and feel like my old self again (somewhat). Happy 29th.

the evidence of things unseen

A couple weeks ago Alex, Rebecca, Dani and Liza braved the wintry roads to come see me! It’s been so long that I’ve seen Liza, it was good to see her and give her one of my signature squeezes. Of course I had to get an update on all the kids. They’re growing, talking, being themselves. Hopefully, when the weather gets warm, they can make it down to see the Bronx Zoo, it’s so close! We talked as usual and the time flew by. I can’t wait to get out of here so I can visit them. Being with them is like being home. -So- much of my family is in Ithaca. I’d imagine having a summer place upstate and a van we can pile in. I’d love for my mother to have a place outside the city to do whatever she wants; paint, write poetry. I’m trying to plan my life once I transition from here.

The other day, I got some sad news that my good friend John died earlier this month. He was a walking quad but had tracheal stenosis like me. Somehow the inner part of his trach came out and they couldn’t put it back in time. I am so upset about it but he doesn’t have to suffer through this anymore. He was dependent on oxygen and had serious coughing fits. He couldn’t travel. He was an older gentleman, fought in the Vietnam War, and raised a family. He had such an open, loving spirit, which is why it was easy for us to be friends despite our differences. I’m going to miss him dearly. The good thing is that all the wonderfully indescribable beauty that exists in this short life points toward a greater beauty in everlasting life with those who recognize the great I AM. So it is not the end for John.

I’ve been preoccupied with getting an appointment at Mass General Hospital to see the top tracheal surgeon in the country. The docs at Mount Sinai have been giving me grim outlooks and I can’t accept that. I joined a yahoo group for people with tracheal stenosis and they’ve been telling me to similar stories, doctors that say there’s nothing we can do. It’s going to be a long scary road with risky surgeries and recovery processes but I can’t give up. I have faith I will talk again and even walk again.

in the hood, in a nursing home

There’s a woman here who’s always placed at the front desk, in her wheelchair. She can move all her limbs to some degree but cannot walk. She constantly cries and reaches out to any staff walking by but cannot verbally communicate what she wants. The most everyone knows is that she wants to go to the dining room to eat but she cannot. She cannot swallow and so, has a feeding tube. Her vocal cords are probably paralyzed which may be why she can’t speak. I’m usually good at communicating with other non-verbal residents, but I’m not sure how much she understands. I mime to her but she doesn’t seem to know how to mime back. I can’t imagine how frustrated she must be and am trying all I can to establish some communication with her. The best I can do so far is sit next to her and hold her hand.

I moved to the fourth floor yesterday and so for it’s been a good choice. The nurses on the seventh floor were awful except for one and he’s only there 2 times a week. I am going to miss the CNAs and the other residents though. I just need better care at night with my trach.

Still no luck finding a doc to give me better odds about getting the trach out. Too risky. Can risk ability to swallow, speak or collapse trach altogether. It’s very depressing but I have to continue day to day and be thankful. I can breath, eat and communicate. It’s just hard with no voice. There’s no zest in my speech, the Nicky trademark. In a way it’s been good. I’m too quick to say what I think and it can be hurtful. Now, it matters less what I say but more how I respond to people. I just always felt that life’s too short not to say what you mean. I still feel that way. Say the good too. Say you’re sorry. Say how much people mean to you. I didn’t think about any of those things while I was slipping off the roof. I said what I had to say. But it takes more strength to just listen. To set aside verbal daggers and serve people because they need it. It’s not easy for me to do! It took being voiceless to learn that and I should be thankful even though it’s frustrating. Anyway, time for more routines-peace.

stem cell research advances

for anyone interested in the medical advances for neurological disorders, Dr. Wise Young is the man to listen to. He is a neuroscientist working out of Rutgers University and is at the forefront of expediting a cure for spinal cord injuries here and abroad. In the last several years, doctors have proven for sure that neurological pathways can regenerate. So where are the therapies? Many injured people have been selfishly demanding a cure like spoiled children throwing tantrums at dept. store. The two biggest hurdles are funding and organizing clinical trial studies. Although we are in an economic recession, investing in clinical trials would save money for insurance companies AND be profitable for pharmaceutical companies. The other day, he announced on www.carecure.org (www.sci.rutgers.edu) that he would post his articles on wordpress for consolidation and it is a wealth of knowledge. You can see it on http://wiseyoung.wordpress.com/ He breaks down the economic, political and scientific barriers to developing therapies. He mentioned that if a days worth spent on th Iraq war were spent on research, therapies would progress. If a million people spent aa dollar a day toward a cure that would definitely progress therapies. So I began--30 dollars a month to the V.M. Keck Center at Rutgers University where Dr. Young works. Living in a nursing home, I've come to understand how important these therapies for neurological disoeders are going to be for most of us one day. So many people, old and young suffer from stroke, often paralyzing one half of their bodies. Neurological degenerative diseases like alzheimers and parkinson's are more prevalent. If you've never been in a nursing home, I would strongly suggest you visit one and take a glimpse of your probable future. I certainly didn't think I would be spending my late twenty's in a nursing home...so I'm investing in the cure now. Dollar a day, to where Dr. Young works. I'm hoping to enlist other SCI comrades...

On a lighter note, I just got the new love and rockets stories from my secret santa!!! Tomorrow, I'm spreading christmas cheer by sharing my favorite cheesecake--S&Scheesecake from THE BRRONX!!-- with the third floor. HAPPY HOLIDAYS Y'ALL