Now we're moving!

I'm not sure if I mentioned, I made a proposal to NYCSCIA about funding the Vitaglide Pro for Beth Abraham. I started training at Asphalt Green, and I thought, man, there should be accessible equipment like the vitaglide at facilities like this. Then I thought, why not at Beth Abe? There are quads that really need it and do not have access to training like I have.

Even more, there are more and more younger people being funneled into Beth Abe long term and are cut off from therapy quickly. Our fees never change and we do not even get maintenance therapy. So the board thought favorably and chose a 50/50 funding strategy, where Beth abe pays for half (very fair!) I then met with head of PT and gave her the low down. Her main issue was money and if there was space. I made sure to add the dimensions to the proposal and said Beth Abe paying for at least half was very fair considering the money we bring in. Then she said something that really surprised me: "shouldn't this be in an independent gym?" "But most of the disabled are here" I answered. It just seemed like she wanted any way to wiggle out of the idea.

Look at this guy! that's what I'm talking about! I want to see the quads in here getting a good work out like every body else!

I put her in contact with George, president of the NYSCIA and she said thought the chapter would be paying! George put it on flip mode and said quite the contrary! So now, admin is meeting tomorrow to discuss funding for the vitaglide to give their decision. I drew up a petition but it's been hard chasing people down and explaining the vitaglide. I presented it at the SCI support group meeting but only 4 people showed. They were supposed to give me statements but who am I kidding! I want to shoot over a couple last points before hand and hopefully things will work in our favor...

Onward and upward comrades!

Getcho szhit togetha!

So I may have to switch gears with my therapist because apparently there's a specific section of Asphalt that is for PT. I hope I can continue to work with Leslie but if my insurance will not cover her, I cannot continue to pay out of pocket.

I submitted a proposal to the chapter to help fund a Vitaglide Pro for Beth Abraham. My biggest worry is the obduracy of Beth Abraham! They just suck so much! Even when a good thing comes their way! They'll pretty shit up and but never give real access to anything. They'll boast of themselves in the music program. What music program!?? They have all this equipment but don't know what to do with it! They have a great space for therapy but they don't utilize it! The Tilt table isn't used! The thing that bugs me most is that they have a pipeline from Mt. Sinai to bring all these young cats with SCI and yet they don't have the appropriate program to maintain SCI ADL levels, independence. 

At Mt. Sinai, I showered in a chair and mostly cleaned myself. Now, I resign to shower on the bed, because their chairs here suck and my feet drag. 2 people have to wash me because there always has to be 2 witnesses against me in this place.

There are paras in power chairs, who do not do their own bowel routines! There is no motivation or education here to get them to the appropriate level. This is the place Mt. Sinai--a model SCI System--has chosen! The bottom line: because it's the best of the shit pile. Well, I think there are good points in Beth Abe and as long as I'm here, I'll do whatever I can to improve it. These are the things I think about when I envision Wheels of Progress and how transitions should run. This can be somewhat of a drawing board.

I've been utterly enjoying Darcy James Argue's Secret Society and their new album Infernal Machines. itunes describes it as "steam punk jazz" and that about hits it right on the head. "Take the A train" meets...I dunno, my fist! But on a serious note, most times I find jazz too chaotic for me to enjoy unless it's fused with something else. This is much more musically grounded and still solidly jazz. Here's a couple songs from the album, if you want more, I have all the songs in rapidshare...enjoy!



3. Transit
4. Redeye

The beat train

I'm back on the beat train of training again and it feels good. I met my new trainer, Leslie at Asphalt Green and we began with simple body mechanics, zeroing in what I can do, ways I can reach out my arms by counter balancing and right away I saw results. She made me aware of when my posture was off, when I used my head to compensate, so I could correct myself. It felt good. She is intense, energetic, knowledgeable, but also kind and down to earth. Afterwards, she gave me a couple of nutrigrain bars and made sure I made the accessaride ok.

I got prescriptions from my doctor for the training and FES at Mt. Sinai. I do have muscles firing in the abdomen that I want to stimulate, especially on the left side. I do not want this scoliosis to get worse and permanent. Right now, it's correctable with therapy.

I had an idea to propose to the chapter that beth abe should have quad friendly equipment where they can work out themselves without help setting up. The Vitaglide and the Uppertone provide that. I'm going to explore that a little more and see which one profits the most people. More quads here are motivated to go into manual chairs but they need to go to the next level when it comes to training: shoulders, back, triceps, trunk control. I've been looking at these pieces of equipment and they provide that. Best of all, they provide elements where quads can securely put their hands in. I'm so tired of going to the OT room and seeing paraplegics dominate the weights while quads sit and watch because they need to be strapped into the friggin pulleys and it's not even effective.

Anybody with me say "I'm on that beat train!"

More crazy love

I'm finishing the book Crazy Love and in conjunction with our reading in Acts, I've felt a difference in my daily walk with the Lord. Crazy Love is Chan's personal realization of something--a big something--missing in the American Church and his spirit led response to it. He goes back to remind us of the primacy and magnitude of God using the imagery in Isaiah 6 and Revelation 4. That all of us, whether we believe or not, will come before the throne of God. We will stand naked before our Creator, the same who made the Earth and the Heavens, time, gravity, creativity. When I was 3, I remember going to the museum of Natural History. There's a huge life-size blue whale hanging from the ceiling. When I first saw it, I was terrified! My knees felt weak, heck I think I pissed myself! I still have the picture of my mother pointing up in awe, while I'm crying in sheer fright of the magnitude of that beast! I also get overwhelmed when I'm faced with the sea. I'm reminded of how vulnerable I am. We must be reminded of how powerful God is and that we are accountable to him.

Chan smacks his readers with the reality of who God is but also reminds us of God's love for us and because He loves us so much that He gave His son, Jesus to become mortal to die, take our sins that we can have favor in God's sight is something we should always praise Him for. Our lives should be dedicated to Him! For a closer look at what crazy love is about, check out www.juststopandthink.com and www.crazylovebook.com

What about all these Natural disasters?

Since the earthquake in Haiti, especially, people will question the love or even the existence of God. Do not let the enemy deceive you! The presence of natural disasters is not 'God's punishment.' We have been suffering sickness and death ever since we disobeyed God in the Garden and the Earth has also been experiencing degradation, leading to more sickness and death. The increased number of disasters are fulfilled prophecy to the end times to Christ's coming as spoken of in the scriptures:

Nation will rise against nation, and kingdom against kingdom. There will be famines and earthquakes in various places. Matthew 24:6

What freaks me out is the increased number of movies spouting deceit like 2012 and Legion, things that have nothing to do with the Word of God. The Bible is not an archaic book that has no relevancy to us today. In fact, it was written specifically for us in these times! I'm exhorting all who read this and do not know Christ to honestly pray and seek God. I'd rather see more people into eternity than just ho hum and keep this to myself for PC-sake. The Bible is the truth spoken from God. How do you know men didn't just write it? If God is powerful enough to create the universe, He can preserve His word. Moreover, the Bible is historically reliable, consistent, and Jesus has fulfilled hundreds of prophesies. For more detailed proof, go to alwaysbeready.com These are the technical evidences for unbelivers that make Jesus as Messiah beyond a shadow of a doubt: prophecy, miracles, biblical consistency, archeological discoveries. Spiritually, God reveals himself through his holy spirit and that is unexplainable. Or at least hard to explain for me. I think Solomon shared a great testimony in my interview with him and I give God all the glory to whoever it can reach and save:

I'm just really irate at all the apostasy going on, people not teaching sound doctrine, but most importantly, not serving and loving each other the way Jesus commanded us. It is hard and it requires his supernatural power that we can call on the Holy spirit for! More and more, the world is getting worse and even some Christians are being deceived (i.e. Pat Robertson!!) But God has already warned us of this in the Bible which makes His truth just that much more uncanny, it's slapping us in the face:

"And many false prophets shall rise, and shall deceive many." Matthew 24:11

"And because iniquity shall abound, the love of many shall wax cold." Matthew 24:12

I already started Chan's other book, Forgotten God centering on our neglect of the HolySpirit. I hope to get more feedback from believers here and have an honest dialogue on the subject.

In other news, training is going great and I hope to get more quads moving here soon too!

Music Review Coming up!

-NOA

I'm sitting, letting a WEFUNK set seep in. Still haven't downloaded any funk, jazz, break or the like and WEFUNK is the cure. If you dig old skool hip hop skillfully mixed with soul, funk, latin, afro-beat, breaks, electro and the like, look no furdah.

So Mount Sinai cancelled my appt. to find a more appropriate therapist for my injury level but this stalling is getting me vexed. The longer I'm out of a regular training program I feel myself getting depressed, weak. My trunk, especially, is weak. The fact that I still can't transfer myself is very frustrating! I'm so close! I'm so tired of depending on these people! The institution as a whole keeps cutting down on staff so you have to wait longer, the CNA's are more frustrated, over worked and less willing to do what they have to. But the rates have gone up and the beds are not full. What's going on? Each resident pays about $15,000/month. That's straight robbery if you ask me.

I want the new year to start off right, with activity and motivation. Right now I feel a bit stagnant and I don't like that. However, I have been focused on prayer and that takes much diligence! It's hard to find quiet anywhere anymore. We have been talking about that at church, reading through the book of Acts. Even Jesus led a life of full of prayer himself, and he is the son of God! But he was setting an example and lately, I have been going back to his example prayer in Luke 11:2 and letting it flow from there, putting more detail to each section. Thanking The Lord for saving me from the roof, for being faithful throughout, for putting my life back together. My neck is broken but I have gained eternity. I'm not lonely anymore. I have family nearby. Life on Earth is not perfect, but I feel whole with Jesus and I just want more and more of him.

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!

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...