Saturday, December 26, 2009

NYCSCIA Holiday Party

This year I got to celebrate with the crew at Galways Hooker's pub downtown. I was dropped off harshly by an African driver, leaving me right in front of a non-accessible entrance. Everything from how he put on my seat belt to how he got me across the street was either inefficient or downright dangerous. All I could do was shake my head.

I came super early and was the first person there so I went up to the bar and made friends with a guy named Jeff who worked upstairs. I wanted an eggnog with a shot of Maker's Mark, but no egg nog! So Jeff got me a glass of cabernet. It wasn't that great and just after a third of the glass, my head hurt, so I drank water for the rest of the night.

Slowly, other wheelies came in from Beth Abe and my buddy George, who informed me we had a reserved space in the back. I was wondering how all these chairs were going to fit in the bar! The bar was very high and already I had issues setting my drink down and feeding a drink to my man, Surg, a high level quad.

The high point of my evening was playing a game of pool, something I've wanted to do for months! They had 2 pool tables and I played in a game of doubles with George, Eileen from NYSCIA and her friend Pearl. To my surprise, George had never played and I told him that I used to play a lot. I had no idea how I was going to work it as a quad and indeed, it was very hard! But the eye coordination was still there and I immediately got two shots in! It wasn't graceful the way I held the cue stick, but boy there was just enough follow through to make everyone watch those balls go in beautifully, with precision! But that was about it, the other shots required more umph, more power behind it that I didn't have. Another goal accomplished!

I was very content to just hang out with George, his wife, and Ro and whoever was in the vicinity. I was tired and lost my voice and it wasn't even 8pm yet! It was very warm where we were and I was sweating under my turtleneck. I opted to wear only my columbia vest since I knew I would be warm, but still! It was almost like a Tau party without the cigarette smoke. I steered clear away from Beth Abe people. The closest I was to them was on the ride home on flippin' accessaride. This time, the driver was African-American, and super rushed to get home. So rushed, he was going the speed a car would go and swerving on the road! at some points, I was yelling for him to slow down, but of course, no one could hear me. I was so anxious about getting into an accident and I know that's not of God, but it's those moments where it's hardest to trust. Luckily, my dad was there when we pulled in helped me into bed.

Most disturbing was my urine was unusually bloody. Not just a few spots but the entire bag seemed tinged with blood, which could explain my lethargy during the night. I told my father to tell the nurse while I freaked out thinking what it could be. Since then I've been taking my cranberry pills religiously and lots of water. I think it was signs of a nasty UTI coming on.

I gave out the last of my gifts at the party--coffee! My father and a volunteer helped me wrap and ship out my gifts to friends. Christmas was pleasantly spent with my new roommate, Marilyn. Dad brought a turkey dinner from Whole Foods and Chocolate cake! To top it off, we had a *bit* of traditional coquito (rican egg nog + rum). We had colored lights around the bathroom door for that feeling... we got gifts. Dad was very sweet to get Marilyn gifts as well, body lotion and lip balm, aromatic candles (even though we can't burn them). He really worked hard to make us a nice Christmas evening. The next day we slept in because we didn't want to be bothered with the grumpy staff--I mean come on! I was having a lot of pain too so I just didn't want to be on my ass.

Right now, I'm enjoying some of my favorite gifts. I got a gift card to Barnes and Nobles so I swiftly got Crazy Love by Francis Chan and his second book, Forgotten God. It covers how American Christianity generally neglects the Holy Spirit and biblically sound doctrine. We don't give all of ourselves to Christ as he deserves and calls us to live as disciples. There's so much more I can write on that, but I'll save it for the next blog!

Wednesday, December 16, 2009

pressing toward the mark

It's been a while and a lot has been going on. I'm enjoying my new ipod! already I've learned to post video on the podcast, check it out! Latest download is Casting Crowns, a dynamic rock christian band and it's great to have portable music!

My therapy program here ended and I need to continue especially for trunk and balance control. I have a difficult time holding myself up in thte chair and propelling all day and it's depressing. I need more therapy.

Yesterday was the monthly SCI support group meeting. We go around and say what we're doing, goals, etc. I did'nt really feel like sharing. I don't feel anybody there cares. A couple of guys share and they talk about how they've gotten closer to God all this but it's clear they still dabble in the world. I hear one kid talk about how high he gets and he's sporting this marijuana ring, and he says how he used to be down about being injured but his friends said life goes on he should "do him." Now the whole "do me" mentality is far from christianity and I told right there on the spot. I told him, Jesus came here to be a servant, not to "do him." No one needs to be a biblical scholar to know that. The two tried to tag team it, justify it like it meant to do what they enjoy--which it does. But they included music, poetry, weed. They just threw that in there! Like the serpent in the garden, they make it sound so innocent and well, God never said...I've had issues with these things as well and I had to seriously pray about them and ask God to lead me to His truth. When I made the commitment to follow Jesus, His spirit began to convict me and it's been hard! Reallly hard! But clearly His word says, "If anyone desires to come after me, let him deny himself, take up his cross daily and follow me." Luke 9:23. But this is the process of becoming a new creation. I'm learning we're constantly being sanded down and a big part of thaat is through fellowship with other believers. You can't just have a bible and wing it. I realize this kid is not in fellowship, maybe I should invite him.

I still struggle with my shortcomings. I don't always give people much grace. I've been praying about this. I've been praying to forgive those staff who wrong me, for God to have mercy on them. Most of all, I pray for God's angels to protect the residents here while giving me the wisdom to navigate the system.

It's getting cold and I don't like going out but I just got scheduled to continue therapy at mt. sinai 2 days a week! I hope it goes well...

Saturday, November 21, 2009

The unfolding

I've been hard at work in the gym! The days are flying by and it is indeed true that days are getting shorter. There's just not enough time in the day/evening to do, write, read, see, say all I want to and I'm not even working! Christmas is around the corner and I'm already planning gifts but I haven't thought about thanks-schmanks! I like some turkey and whole cran-sauce. Other than that, I like peace and quiet. No drama. Pumpkin pie is a real treat! All that they have here at the facility. When I think of thanksgiving- giving thanks, I don't want to over do it this year like the past. I want to eat the right portion and not be in a coma.

I did an interview for Wheels of Progress (WOP) which culminated into more than we thought it would be! I started talking about how the nursing home system institutionalizes people and how it makes them lose motivation to keep them there and out of the community. I even gave specific examples of people who have the function to thrive in the community but lack the resources or the motivation to get out. Then, at the support meeting, another nail in the coffin! A T12 paraplegic who uses a POWERCHAIR speaks about how he wants to get out of Beth Abe, but doesn't know if he wants to work again. He's been here several yrs.

WOP is going to be a different organization. It's for people to progress to the community, work, give of themselves, not be in a nursing facility for an extended amount of time. After being here, I have different thoughts for what I want for my parents later...But as for younger people who are disabled but capable, we can have the option of living in and contributing to the community, working again, going back to school, being an athlete. You just need the drive. I see WOP as the resources and services to point you in the right direction: Residency, PT/OT, transition guidance into the community in a nutshell. As I speak with founder, George Gallego, I will fill in any gaps but I hope this idea will spread like wildfire! The nursing home system is sucking up money it doesn't have through insurance and it's so much cheaper for us to stay in our own place while getting the help we need. I'm excited to take part in this new project, see it unfold and take flight!

Thursday, November 5, 2009

I'm really tired of my routine here! First of, waking up in pain really sucks. I spoke to a "pain specialist" again to change meds. This time, I'll up my topomax dose. It's just all trial and error.

Another big issue is my roommate turns on her television at 7am when I like my last 2 hours of rest. I'm forced to listen to the news and all these stupid day time talk shows I couldn't care less about. After a couple months hearing it day after day, it really began to get me annoyed. I asked her to lower it in the morning. At first she did but now she complains about my humidifying machine! So I've resorted to turning on my television to tune out Regis and the Wendy Williams show. It's so ridiculous! Although I have been enjoying cartoon network. The best part is that a) it tends to be louder than adult tv, b) it doesn't have the same annoying commercials! I'm not even a TV person. I like quiet. I like reading and writing. I research online. Listen to music (on headphones!) Occasionally, I watch TV before bed but not consistently to drive someone nuts. I give her ample time to be in the room alone but I rarely get any alone time. It's important around here! I'm surrounded by loud ass people who have mutilated the English language and they have no regard for personal space. You truly are an inmate here and the more dependent you are, the tighter the leash. I-N-S-T-I-T-U-T-I-O-N-A-L-I-Z-A-T-I-O-N.

Other than that, I've been doing pretty well in therapy, getting stronger, doing push ups on the mat! I've been working a lot on my trunk since my posture/balance is poor. I'm going to get fitted for a brace, but really focus on strengthening as to not rely on the brace. My endurance still sucks on the arm bike but it increases every week. On the pulleys, I focus on triceps. The main thing that blows in the therapy program here is that the transferring technique. If you cannot transfer yourself, good luck getting some good mat time. I'm minimal assist which is the only reason why my therapist will get me on the mat 2-3 times a week. Much of the time, the mats are not used, the therapists and the aides are chatting, laughing. More and more people with spinal cord injury from Mount Sinai Rehab are getting funneled into Beth Abraham. Quads, in particular, are not getting mat time or practicing transferring skills. Moreover, we are not learning daily living skills like bowel and bladder management. I like what I do with my therapist, but I do notice that people are getting comfortable and residents lose out. I was hoping to have a dialogue with a therapist from Mount Sinai on teaching transferring technique here. I think it would be beneficial and why not? MS brings in enough money! But so far, I have gotten dodged and I'm not sure if it's intentional due to strained relations between me and certain admin there. Maybe I'm paranoid?

In either case, my spirits were lifted by 2 comrades that came to visit me today. They encouraged me to continue to voice my thoughts and contribute my ideas to the cause. I feel honored and respected. I know many people stand behind me but sometimes discouragement sets in. So I will "pen" more of these ideas as I go along.

Tuesday, October 20, 2009

New sensations

The nerve pain I've been feeling in my butt and legs seem to be indication of other things going on in my body lately. It started out with a raging UTI. The nerve pain in my lower extremities was so intense! Like fire and ice! I knew something was up, so I had the doc check my urine just 'cause 9 times out of 10...

More recently, around routine time my butt really began to burn so I asked the nurse to check me. I had pooped a hard, fist sized turd! Now that would obviously cause some pain! After that, I notice that every time I get stimulated and begin to move my bowels, my nerve pain goes away. It's like a warm wave of goodness and I feel so relaxed. It's the relief of me moving my bowels! I can also feel when someone rigorously stimulates me during routine. I can't feel their actual finger, but I feel something. It's hard to explain. It's a new sensation I'm feeling and I have no idea what it means in terms of return of feeling. I still can't feel on the surface nor have I gained function in my hands, legs, or torso so it doesn't mean much but it is strange and worth noting.

I started therapy again downstairs since I've been so weak. I've lost a lot of weight so my father has been feeding me any way he can! I'm working hard and tired most days. Outside is less appealing. I miss my Ithaca fall time: walking through leaves, the warmth of staying in and only occasionally hitting the porch. That was a different life ago and although I miss it's simplicity, I was very lonely for my family then. Ah well. Here's to another hibernation. Drink some scotch for me!

Monday, October 12, 2009

Autumn changes...

I got a hair cut finally!! I need to take a picture and post it. I used Hopey's pic you see on the blog page. Hot bitch! Plus, it's easier to have it short, I like it short. I even waxed my eye brows--gasp! the women convinced me. Wasn't bad at all. It looks good! I'm not comfortable in hair salons around here. Everyone speaks spanish and you don't know what's going on. I understand some but they get on that rapid fire tip... I just wanted to make sure she knew what I wanted and was going to follow through. It worked out well.

I'm also out of bed more which is good. I put my foot down and demanded to get treated for the UTI. The nerve pain has subsided somewhat and I can sit up in bed.

I discovered that my asthmatic symptoms are actually indication of more stenosis. When I push the tube slightly down, my breathing clears AND my voice gets louder!!! My initial instinct was correct and once again, I'm having visions of ringing Dr. Weiser's neck. I called to schedule a broncoscopy and his assistant scheduled an office visit so we can "discuss options." I don't want to lolly gag at another office visit, have my insurance pay a couple hundred dollars for him to do nothing. So I'm making an appt. with maass gen again for a bronc. if Dr. Weasel can't get his shite together.

Thursday, October 1, 2009

I feel like I'm in the ark, begging God to say "you can come out now!" After Richie's message on Genesis 8, the humanity of the situation gave me clarity. It was crazy to believe there would be a flood coming, to build a big ass ark. Then to stay in that ark with all those animals! I'm sure it stank, I'm sure there were arguments. But it took much patience before they could safely leave the ark.

Right now I feel like I'm in a cramped, stinking ark wanting to jump onto land before it's really dry but God hasn't called me yet. God is slowly making moves though. I just have to keep praying and keep focused. This is so hard. My breathing has improved but I'm weak in the chair. My posture is terrible, my nerve pain has gotten worse. My bahind is on fire! I'm sick of being fed pills day in and day out! Waking up in this condition is the worst. The burning sensation starts up right away and I'm reminded of my condition. I'm trying to think of how my life will be once I can leave here, away from any institution.

And this is the light version! Those who know me, know how I would usually dish it. Especially when it comes to people! It takes every ounce of will power... you wouldn't believe the stupidity, the greed, the audacity. But then, there are the gems. People working here who are absolutely selfless, dependable, true servants of the trade.

This weekend I spent most my time in bed because of nerve pain. I'm almost sure it's because of a UTI at this point. I had the doctors check my urine and blood just in case. I tried going out sunday for a hair cut but had to turn around. The only way to relieve it is to lay on my side. I even take percocet which only relaxes the pain enough for me to rest. So I haven't been up to too much. But I did get a lot done at the doctor's office, getting my flu shot, filling out medical forms, getting much needed referrals. Tomorrow, I go to an allergist and I may have to see the urologist again but all this is necessary to maintain my health, whatever is left of it!

I got caught up with my case and things are coming along. Nothing surprises me, people's testimonies speak exactly how I pinned it all along. Their accusations hold no weight and regardless of their positions they with suffer greatly for what happened to me. Period.

Friday, September 4, 2009

Psalm 25

A lot has been going while I've been recovering from the surgery at Mass General. One, it's obvious that I'm up against much spiritual warfare and I have to use serious discernment. Serious. Two, I have a lot more to plan for the future so more of my energy has been moving in that direction. Where do I want to be? Certainly not in this part of the Bronx! I need to be close to my doctor, my parents, amenities, but I don't want to be too crammed in. I have no idea how to choose property, etc, so I need a little help from my friends... It's hard to think about owning a house a year or so from now when I've never been able to own anything. It's inevitable but I still can't wrap my mind around it. My parents aren't poor anymore but they live in the same neighborhoods, paying off debts with the hopes of accruing enough for a down payment somewhere better.

Having a taste of the ER reminded me of why I don't like the idea of living smack in the city. A part of me says "plan an escape route, keep north!" But I have to remember what brought me here and no circumstance is greater than the God I serve. I can't help but to be reminded of scripture, that we are increasingly in the last days. People say, "well, there's always been sickness and war.." No, there has not. And I'm sure my young generation alone has seen enough wars, increase in STDs, diseases, mass murder, and natural disasters to say somethin's up.

To pass my time here and keep my mind biblically grounded, I've been searching out Christian Hip Hop or "Holy Hip Hop." I found a site called Rapzilla that reviews albums and even lets you download some songs. Finding stuff I liked was difficult (much like secular hip hop) so I consulted with someone from the church. His highest recommendations was labels Reach Records, lampmode, and cross movement. I'll post a mix soon, but top artists on the list are Hazakim, Lacrae, Shai linne, Stephen the Levite, and Kaboose. This is new territory for me so there's still lots for me to explore! This is not to say that I still don't enjoy a lot my old music. I will always love the Smiths (sigh). But I recognize that the closer I grow to Christ, the farther I grow from the world and it's a good thing. I'm not captive to a lot of the world since the accident and that has been a blessing. I'm not captive to cigarettes or alcohol, or loneliness, or wondering what my purpose is. I now know what real love is. I see the decaying of humanity and the earth and truth of God's word unfolding. Sometimes it's baby steps across a stream and sometimes I feel like I'm jumping in the ocean. I really like my "Deez nutz" shirt. Watching "Robot Chicken" was my guilty pleasure. But I haven't turned on the television in 2 weeks. All I think about is seeking God's word and knowing who He wants me to serve next. That's better than fulfilling my own desires. Not to say that I won't be tempted but it's part of the walk. The biggest challenge right now is giving people a piece of my mind "Nicky style" if anyone has heard that and now that I have my voice back it's more tempting. If there's one thing I can't handle is people trying to pull one over on me. So please pray for me on that front! Self-control, wisdom, discernment, guidance, deliverance.

Tuesday, August 4, 2009

It's time

Tonight's the last night before heading out to Boston and quite honestly, I don't know what to do with myself. I'm thinking I want to eat steak--medium rare. My dad will prob. pick it up from the Greek diner down the block. Stec suggested Jake's in Riverdale, but when I looked into it, it still would have been a trek on bus and train. Apparently the owner got convicted of cheating the city $525,000 in tax dollars this past April. Crazy.

Richie and Solomon came by with pizza and hung out for a while, it was a blessing! We talked about all sorts of things and I shared my nervousness about Boston. I don't like not knowing how I'm going to wake up. And quite honestly, I'm tired of throat surgery. I'm tired of this trach nonsense. But I have to do this if I'm going to get rid of this thing. This isn't even the worst of it. This is small potatoes. So I submit myself again and I have faith things will be for God's glory. I have done so much already! We prayed and I'm really not shaking in my boots. I just want it over with. I'm anticipating the warmer, more professional care at Mass General and the quick recovery.

I was hoping to have some time to visit Spaulding rehabilitation center before I checked into my room but I don't think that's going to happen. Fooey! I really wanted an opportunity to check out another SCI rehab site but it's hard when I'm imprisoned here. Ah well.

So 6:30 is my time of departure. I will not be a happy camper! One has to be very cautious waking me up that early...

Friday, July 24, 2009

What a world! What a world!

So I've immersed myself in rapidshare communities and now I'm in this lonely space between being neo and jedi master. I've been "rapidsharing" ever since my friend let me in on it last summer when I got my computer. Basically, it's people uploading files (wether music, video, or other) onto a server run by a German company, obtaining a link for it and then giving the link to others to download either for free or by paid subscription for a faster speed. I think I first downloaded Jimi Hendrix' Blues album and got slowly hooked from there.

It's cumbersome to download movies for my CPU speed and space it's perfect for music here and there and I do love uploading files as long as it's not over my 5 Gigabyte internet down/upload limit. I've been uploading music mixes and DVD rips but my circle of peeps have been unresponsive so far, and I have the feeling they are not into rapidshare, since none of them share links. There are a few, though, that are mac geeks, linux programmers, and java junkies that know the deal and probably run some of the sites I'm on!

I started with RapidFind.(apparently the first rapidshare forum) I was hoping to learn the ropes of uploading and downloading larger files on a mac while be embraced by a cozy international community. I was respectfully, yet sternly, reminded to "code" my links and edit my signature. I had trouble downloading rapid uploader for mac and could not get any results. Finally, I just resorted to finding another community *sniff, sniff* I remember downloading Ironbutterfly from Katz forums and liked the layout so I registered there. By then, I finished uploading a DVD and decided to post it. All went well, with no chastising afterwards! very cool forum, no snobbery. So if you don't know what rapidshare is, get on the beat train! Not saying you should be an addict but at least be in the know. check out

I borrowed a really bad copy of "knowing" from Jonathan just because I've been really wanting to see it. Something about numbers predicting disasters and eventually the end of the world... interesting and creepy but most definitely conflicting. Physicist, recently widowed with a son, son of a preacher. Anyway (spoiler!) at the end of the movie, his son is "saved" by angelic aliens from the firey tribulation about to take place on Earth that was prophesied. Meanwhile, physicist, played by Nicholas Cage, is not a believer in God but suddenly goes to reunite with his pastor father, mother and sister before being obliterated by excess sun flares. It ends with him saying, "this isn't the end," meaning, we're going to heaven after this. What's missing here? What are the requirements for getting into heaven? Obviously, his father believes Jesus is that requirement but he is a skeptic. The crazy woman who heard voices 50 yrs. ago and prophesied the disasters with numbers-not the scriptures-read the bible but did not speak of Jesus, spoke of the end of the world which is not scriptural. I wouldn't mind so much if was at least original and intelligent but I saw right through it and it was unenjoyable. It was all around a unoriginal mess of a movie.

The best movie I've rented so far has been Miracle at St. Anna, so if you haven't seen it, I suggest you do so. It's about a valuable remnant of an Italian church destroyed by the Nazis that traces back to the travels of a black platoon in WWII getting separated in Italy. Multi-faceted, makes you want to see it a few times to catch the details. Why it did not win an Oscar, begins in C-O-N and ends with SPIRACY. That's all I'll say about that.

Stay tuned for the next podcast, me and JHood (Jonathan) will probably just smack talk about life here. Peace.

Monday, July 20, 2009

More steps of faith

So far, exercising has been good. I invested in a protein shake recommended from the care cure site but haven't noticed any changes as of yet. it has only been 2 weeks. Make sure to check out the latest podcast episode located on the right. Interesting music mix. For those who don't understand why I speak in this strange robotic voice, I have tracheal stenosis and so air cannot pass through the vocal cords. I use a device that vibrates the cords for me, thus producing sound. I will be going to Mass general in Boston on Aug 5 for a different kind of tracheostomy tube and then will go back for a resection surgery. I am very scared but I must move forward and trust that God works all things for good no matter how much we dislike it.

Despite the hardships I have been blessed in many ways. I've been able to see my own short sightedness on some issues, my own selfishness. Through my own suffering I am able to truly have compassion. Most of all, I can honestly say I know who my God is and that is Jesus Christ who is a true historical person who fulfilled prophesies, performed miracles and made claim to his divinity in typical Jewish fashion. Too often, people are putting doubt on the divinity of Christ because of comparisons of mythological gods which have no real bearings and have no real evidence to back up assertions for their claims. Everyone at some point needs to face the fact that there is a God. If so, why aren't we seeking him? Then there's the question of why Jesus? Don't all religions basically teach the same thing? No they don't! They are very different particularly in the nature of God and what our goals as human beings are. No other religion has the the historical, archeological, extra biblical and theological evidence to support it. It was one thing to feel it in my being, but how was I to answer questions about my faith? How was I to look to God for answers, to trust his word? All of a sudden, all the ugly past Christian mishaps came back and although what I experienced on that roof was real, how did it fit with the Book called the Bible? I mentioned in a post some time ago that I began reading about David, abraham and Moses again and although they were the "heroes" of the Bible, that they too, made mistakes, had doubts, were afraid, were angry with God, didn't always do what he asked. But through it all, God was faithful. He kept his word. Another thing I noticed was that throughout the Bible, God has shown to operate through his word. From the very beginning, he created with a word, complex worlds with complex organisms and biosystems. He he healed just by saying you are healed, spoke easily of what was really in people's hearts and no malice passed from his lips. To have this consistently in books by many authors over a period of 1500 years is a staggering amount of proof that God's word accomplishes what he sets it out to do, regardless of how much we mess up or try to cast doubt on it.

Now don't get me wrong, I didn't come to this conclusion easily. After all, we want to do what we want to do, right? I have a friend who's a priest and everyone's "cool" that he's a priest as long as he's not trying to tell them that Jesus is their Lord and Savior. But if you had important information about life after death, wouldn't you want to let your close friends in on it?

This is the reality of the situation: The time we are in now is the time predicted in scripture that God will reveal himself soon and will judge the nations. We are all sinners. But Christ who is sinless died for us so that we can be righteous before God when judgement comes. Take the time to read the Gospel. Here is a great DVD called All roads do not lead to God by Christian Apologist, Charlie Campell:

If you're not into rapidshare, I suggest just going to the website, and browsing their store or helpful articles. If you find the video helpful, I would urge you to pass it along. Here are other resources:

Saturday, June 20, 2009

Time to exercise!

I've been busy with the podcast and other projects and haven't been able to blog. I've also realized that the podcast acts more as a information/support outlet for those newly injured and so I will try keep it as such although the music is fun!  I've been doing some interviews with people I know within the first few years of injury about their adjustment and transition into life and so far, it's been going well. Next week, I'll focus on curative therapies in the near future, how to stay informed and get involved. 

Today, I went to try handcycling with the Achilles track club in Central Park. They are a group of athletes that offer a supportive atmosphere for people of all abilities to exercise and race. They also bring a few handcycles for people to use so it is a great opportunity to delve into adaptive sports. They didn't have hand adaptations for me but they helped me on and I got the feel of it. It was very cool! It was faster than rolling in the chair and lower to the ground so I was a bit nervous but I had my buddy George by my side for support. Monday I'm going to call and ask if they have quad grips/modified chair. I'd really like to continue but I may have to put it on hold after my T-tube surgery.  It is more practical to get a table ergometer as I need the exercise indoors and out! 

Saturday, June 13, 2009

Funky Soul mix

Here's a funk/soul mix I put together for your enjoyment. I've been diggin latin soul/boogaloo and funk from the late 60's/70's and excited to share it! I don't have my records, but bet yo ass I'll be recording and posting those as soon as I break out of this joint! If you want just the tracks to burn on CD, email me or leave a comment and I'll upload it via rapidshare for downloading. Enjoy! 1. It'ss a New day by the skull snaps 2. Liberation conversation by Marlena Shaw 3. Funky song by Ripple 4. Funky miracle by the meters 5. Hercules by Aaron Neville 6. Compared to what by Robberta Flack 7. Fever by Marie Queenie Lyons 8. Big T by Tito Ramos 9. New York Soul by Ray Barretto 10. I'll be a happy man by The Latin Blues band feat. Luis aviles Make sure to listen with some good speakers, some of these basslines are sick!

Here's the rapidshare link for download:

Password: withthesehands

Monday, May 18, 2009

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.

Wednesday, May 6, 2009

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.

Thursday, April 30, 2009


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.

Wednesday, March 25, 2009

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.

Friday, January 30, 2009

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.

Wednesday, January 14, 2009

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.