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“Hey Raul, sorry about waking you up.” It’s my lawyer. She’s not calling that early, it’s 1 pm. I don’t really keep regular hours anymore. I go to bed at 5 am and wake up at 2, this is early for me.

“That’s okay.” It’s instances like these I wish I could reach up and rub the sleep out of my eyes.

“I have some good news. I just got off the phone with the state’s lawyer…”


“She said that the state has evaluated you at the acute level of care retroactive to August 8th.”

“Um… really?” It was Tuesday and I wasn’t supposed to hear from them ’til Friday. Even then, it was only supposed to be a settlement offer.

“Yes, really. You can get 24 hour nursing care immediately.”

“Are you sure?” I asked, not knowing what other sounds to make.

“Yes, I’m sure.” She giggled.

She kept talking, going over details. Instead of offering a settlement, the state just bumped me into the acute level of care – the level we’ve been arguing I belong in for the past three years. By just putting me at that level, they can avoid negotiations and paying my lawyers; Their parting “fuck you” to us. Our lawyers aren’t going to charge us because they’re pro-bono, but they need the money.

I was processing everything she was saying, but I didn’t feel anything. I’d thought about this moment so many times, I thought I’d feel something.

Everyone around me has been celebrating the whole week. People keep congratulating me, saying how amazing it is. And don’t get me wrong, it is. It’s been a very long three years filled with stress, frustration and hardship. I’ve been to the hospital more times than I can count, there’s a collection of wristbands behind my bed. My parents are certainly not getting any younger and they have their own health issues. So this is good and I should feel awesome, but I don’t.

I’ve been thinking about it for a few days, trying to figure out why. At first I thought it just hadn’t hit me, but it’s been almost a week now. Now I think I just wanted more. While this is a great result for me, it does nothing for anyone else. Countless others will have to go through the same thing and they might not be as lucky as I was. They might not have awesome friends and family or great lawyers. Yes I won, but nothing has changed. I still want to change something.

I’ve been fighting battles my whole life. Whether it be with my disease or something else. I think I’ve realized that there will always be something to fight for. No matter how much I fight there will always be struggle. Because, ultimately, that’s all life is. You claw and you scratch and you push through a sea of shit hoping there’s something good at the end.

People have been asking me what’s next. Up until now I haven’t really known how to answer them, but I think I know now. I want to make it so that no one has to fight the same battle I did. I can’t solve everything, but I can solve this. I’m not entirely sure how yet, but I’m going to change the law.

Failure to Thrive

“Mom, I think I’m immortal.” I told her as I sat on the toilet. This made perfect sense in my 10 year old mind. Why wouldn’t it? Death seems so silly to a ten year old. What, you actually stop living? That’s crazy talk!

“Why?” she said through furrowed eyebrows.

“Because I can’t die!” I proudly proclaimed. How does she not get it? I’ve never died before, so why would I ever die?

“Everybody dies eventually, Raul.”

“Not me!”


Failure to thrive, that’s what the doctor called it. It sounds like being kicked out of college, like I got too many F’s or something. This was completely foreign to me, what the hell did he mean failure to thrive?

“If he’s not tolerating his food, then you really need to bring him in. He’s having too much reflux and it’s affecting his ability to eat. We’re really skirting the line with him.” I’d been having trouble eating for about a month. I would feel the liquid come up from my stomach, coat my esophagus and make it’s entrance into my airway. Sometimes it felt cold, other times it burned. I’d cough, choke and get this pain in my throat. But I couldn’t stop eating, I knew that would only make everything worse. I’d lose weight and weaken my immune system.

So I forced myself to eat. Everyday, I’d wake up with a dry throat, dry mouth and stare at the wall. How much longer can I do this? How long until my body just gives in?

It’s weird, I’ve always had health problems, but I was either too young to realize how serious they were or they came and went too quickly for me to care or think about them too much. I had trouble eating when I was 12, that’s when I had my feeding tube put in. But I don’t remember much from it, just the starchy taste of ensure and warm release of morphine after the surgery.

But this time… this time I knew what was happening and it scared me. I’d been to the ER fives times at that point, I know because I started collecting the wristbands. They’re still hanging in my room. Out of five times I was hospitalized three. Or was it two? I don’t even remember. All I know is that they kept sending me home because they didn’t know what to do. I would get these humongous mucus plugs that would clog around the trache. When we changed it, it would come out dry and bloody. A few times it even had crusted food in it.

They took me in at the hospital and ran one test. They tried to run more, but the weekend was coming up and all the departments were closing. So they scheduled me for an outpatient test and sent me on my way.

“Not good for you to stay in the hospital if we can’t do anything for you.” said the Doctor.

The outpatient test was the very next Tuesday. They wanted to check how fast my stomach was emptying. I googled it before hand to learn more about it. They do the test to check for delayed stomach emptying, this makes the stomach keep food in it longer, making food go up through the stomach. To do the test, they put radioactive material into my stomach and point a geiger counter at it. They then measure the rate at which the material disappears from the screen. They put the screen right in front of me and I could tell after a an hour that was what’s wrong.

The procedure to fix it is simple, make the feeding tube longer so that it goes into the beginning of my small intestine in addition to my stomach. I wasn’t extremely worried about that, though it did suck. It was how my problems were escalating. From not walking to not breathing to my stomach slowing down.

This problem represents a worsening of my condition, how long until other stuff gets worse? How long until my heart starts giving out? How long until I stop being able to do the things I love? I don’t know. The more I thought about it, the more I realized that, “Holy shit, I’m going to die sooner than most”. It’s strange because I knew that before, but it never really hit home. And now it did. It left me in complete shock for a while. I would play video games instead of writing. I stopped listening to music. I would stare at my computer screen with a total lack of interest. Days were foggy and boring. I didn’t know who I was anymore.

I want to do so much, it’s not fair.

And that’s when I caught myself. The self pity was too much. I can’t live like that. I don’t want to be that person. That person that wallows in self pity and wastes his life. That’s not how I’m built and I promised myself a long time ago that that’s not who I’ll become.


“Raul, everybody dies eventually. You’re no exception, but don’t worry, you’re not going to die for a long time.”

“Hmm…” I thought about it for a second, “Okay!” I didn’t really believe her.

How I Met Bob Filner

“Do you want to come to Bob Filner’s fundraiser?”

“Um… yeah. Where is it?”

“Downtown, at Jim Miller’s house, he’s a teacher.” I’d been trying to bring my issue to my elected officials, my friend Sandy was helping me with that.

Going to someone elses house is always iffy. I don’t know if their house is accessible or if I’m just going to waste a trip. Still, that’s why we have a portable ramp. If I got there and couldn’t get in then, at worst, I’ve wasted some gas.

Laura was going with me. The two of us had told my story so many times before that all I had to do was give her a slight nod and she would just go. She would say exactly what I wanted to say, exactly how I wanted to say it. In fact, I trusted her so much, that if I knew we were going to be in a loud place where it would be hard to hear me I would tell her to go ahead and ad-lib for me. We were like one of those door to door sales teams, except instead of bibles we were selling me.

“We have a problem.” she said, “There’s about six steps and then a porch followed by another step. The portable ramp can maybe get up the stairs, but it can’t get you up the last step. Someone from inside brought out this small ramp to kind of connect the two, but there’s a small gap between the two. I don’t think it’s stable… What do you want to do?” She looked at me with eyes that said, ‘For the love of all that is good and holy, please don’t make me do this’.

“Uhh…” On the one hand, the biggest politician in San Diego was going to be in that house and I had a chance to get uninterrupted one on one time with him. On the other, there was a very good chance that I would wildly careen off the make-shift ramp, tilt over and tumble down the steps. But this was an opportunity to get my issue to someone that had power. I wasn’t going to let fear of painful death stop me. Besides, of all the horrible ways to die, tumbling down the stairs isn’t all that bad, “Fuck it, let’s do it.”*

So I sauntered over to the front of the house and took a look at what I was facing. My reaction can only be described as follows:

There were a few problems that I had to overcome. First of all, the incline was way too steep. It’s not that my chair can’t handle it, it’s that it gets harder for me to control the chair going up hill. Secondly, the ramps are about 2 inches wider than my chair, so I had absolutely no room for error. If I veered even a little bit, I was screwed. And lastly, that damn gap between the two ramps was dangerous. It wasn’t more than a few centimeters, but, because the two aren’t connected, they could do whatever they want. They weren’t exactly going to stay motionless the whole time.

“Hey, I’m Maurice, let’s see if we can’t help you get in there.” A very tall older gentleman with salt and pepper hair and a slicked back pony tail walked up to us, “I’ve been involved with the disabled community for 20 years, tell me how I can help.”

“Well, if you could stay behind him to make sure he goes straight…” Laura trailed off.

“Here, Jim will help out.” Another man with a pony tail* and a beard that said, ‘There’s no way I won’t survive the nuclear holocaust’ came out the front door. It didn’t register then, but that was Jim Miller, the guy throwing the fundraiser. He bent over, grabbed the front of the chair and signaled for Maurice to grab the back, “Alright, go on three.”

What? Are you sure about this? I changed my mind.


That ramp has no structural integrity.


Then again, I can’t say no now, I’ll look like a pussy.*



I pushed forward as fast as I could . I figured that if I went fast enough, gravity wouldn’t matter as much and it would be over quicker. Kinda like ripping off a band aid. That logic was quickly proven faulty when we all realized that I had veered slightly to the left.

“Stop! Stop!” I heard Maurice scream. So I did.

“Alright, let go and let him straighten the chair out.” I heard Laura behind me. She tried to sound calm, but the shaking in her voice gave her away.

I stopped and assessed the situation. I had made it half way up the first ramp, but I still had to clear the gap between the two ramps. So I straightened out the chair, closed my eyes and gunned it. It only lasted for a couple of seconds, but it felt like much longer. I felt the first ramp tilt forward and the second ramp tilt up as the weight of my chair transferred from one ramp to the other. I held firm, opened my eyes and watched as I cleared the gap and rumbled into Jim Miller’s front door.

“Holy shit, I’m alive” I said, as Laura ran up behind me. She looked at me as if to say, ‘Of course, why wouldn’t you be?’ As if she wasn’t as scared as I was..

Maurice and Jim ran up to me, “Let us know when you’re ready to leave.” they said as they disappeared into the kitchen.

“So, you want to talk to Bob Filner?” asked Laura.

“What? Right now?”

“Yeah, he’s right there.” she said. I looked around the room and saw an older dude talking animatedly with a glass of water in his hand.

Surely that can’t be him. Aren’t politicians supposed to look less human?

All I saw was someone that could easily have been my older uncle. And he was right the in front of me, all I had to do was go up to him. It felt so strange. These people are supposed to be utterly inaccessible and yet here I was right in front of him.

“So… You want me to bring him over here?”

“Uh…Wait for Sandy.”

I had no idea what I was doing and I was a little afraid that I would blow it somehow. I dunno how I could have possibly blown it, Laura was going to do all the talking.

“He’s right there. I’m bringing him over.” I’m glad that she didn’t listen to me because she told my story perfectly.

“That’s horrible.” He said, “If there’s ever anything I can do, let me know. If you want me to call a press conference…anything…don’t hesitate to contact me.” He handed us a card with his email address and excused himself to mingle with the other guests. We spent the rest of the night doing the same and, after a few hours, decided to leave.

“Let me get Maurice and Jim.” I had gotten in up the ramp, but getting down would way more dangerous. If only for the fact that I would be going down a 45 degree incline and my body would tilt forward. If we weren’t careful I could have actually fallen out of the chair instead of with the chair. That means the my trach could actually come out.

“Are you ready?” I had Jim and Maurice holding the chair steady while Laura had to her hand on my chest to make sure I didn’t do my best superman impression and went flying out of the chair. I slowly inched down the first ramp and got about halfway before I lost my patience and decided to just gun it down. I’m not going to lie, it felt a little bit like space mountain. I heard the ramps clank together as I made it back down to safe ground.

Laura shot me a ‘You’re fucking crazy’ look and I shot back with a ‘Yeah, but I met Bob Filner, didn’t I?’ look. I had risked my life to do it, but no one has ever gotten anywhere without a little risk, right?

*I feel like that’s a good enough justification to do pretty much anything

*This has led me to conclusions about pony tails a) they’re awesome b) they most definitely make you more altruistic.

*This reasoning is used by men to justify 99% of all stupid decisions.

On Managed Care — 3 — Upchuck

If you want to continue seeing any of your doctors at UCSD, you’ll have to switch insurance from Molina to HealthNet.”

Uh… what?” My nurse asked the receptionist at the Doctor’s office.

Unfortunately, UCSD doesn’t take Molina. All you have to do is call Medi-CAL and tell them that you want to switch providers*”

I was at the doctor because I’ve been having reflux issues. Whenever I eat, I can feel the food go from my stomach up to my chest. Normally, this isn’t too much of a problem for people. All you have to do is take an antacid and you’re good to go, but, because I eat through my stomach and my food is completely liquid, this poses a huge health risk. The liquid travels up my stomach, through my chest and into my lungs, giving me breathing problems and really bad chest pains. We had agreed with the doctor that I was going to go on an antacid twice a day. It wasn’t going to solve the problem, but it would hold me over until they can take me into surgery and tie my stomach up. It’s not exactly the most ideal solution, but it’s better than what I’m going through right now.

Thank you for calling Medi-Cal, you’ve reached the department with-the-really-long-name-I-can’t-remember. My name is Daisy, how can I help you?”

Yes, I’d like to switch my provider from Molina to Healthnet.”

Sure no problem, it will take 15-45 days and you will receive a letter in the mail notifying you of this action.” I may or may not have abridged that conversation to cut out the part where we were put on hold for 20 minutes. And the part where she made everything more complicated than it had to be.

In the meantime, I had to get my antacid. At least I had that to hold me over, “Oh… Your insurance is not approving it for twice a day. They are only approving it for once a day.”

Do you know why? ” My nurse asked the pharmacist.

No, I’m afraid not.”

What else can we do?”

You can always pay for it out of pocket.”

And how much is that?”

$265” I could hear her wincing on the phone.

I looked at my nurse and shook my head as fast as I could, “Oh, nevermind then. Thank you.”

I couldn’t get my medicine and my reflux was only getting worse. Eating became a chore instead of something that was fast and easy. We ultimately found some antacid that my brother had and used that, but it wasn’t enough. I could still feel food coming up through my airway as if it wanted to suffocate me. I needed to do something lest I end up back in the hospital. So I did, I brought out an old stand-by: the feeding pump.

The feeding pump feeds me at a set rate for a set amount of time. The problem with it is that it’s extremely sloooooooooooow. Like, a turtle running a marathon. Sure, it’ll eventually get there, but everyone might be dead by the time it does. What used to take me 5 minutes now takes all day. If I want to go anywhere I have to meticulously plan my feeding schedule. How long will I be gone? Will it cut in to my eating time? If so, how do I compensate for it? It’s like a fucking algebra problem just to do anything fun.*

As of right now, we’re waiting for the insurance to switch so that the doctor can run a test to see how bad the reflux is. After that, there’s a very good chance that I’ll go into surgery and have the doctors tie my stomach up. Hopefully HealthNet approves it, but I have a sneaking suspicion that it’ll be a battle. The government keeps trying to say that managed care will save money. They’re right, but not because it’s a good program. It’ll save money by denying needed medical care to those that don’t have the energy or health to argue with them about everything. And what they don’t want you to know… What they will never ever say is that, in the end, it’ll save money because people will die.

*Medi-Cal has contracted out Molina and HealthNet

*I may consider drawing up an equation for it, I do kind of love algebra.


I’ve been in the hospital three times in the last three weeks. When I used to go as a kid, my parents had all the control. They, of course, consulted with me on every decision, but they always had final say. Now, when I go, I have final say on everything. And I’m slowly realizing how much doctors and nurses underestimate me. How, after they take one look at me, they make a laundry list of assumptions: I can’t talk, therefore my parents make all the decisions. I can’t move, so obviously I can’t feel anything. I look feeble, so I am.

Every time I go it’s a struggle to have them take me seriously. I can see it in their faces. They try to pretend that they are listening but, their actions betray them.

“How does he usually get his feedings?”

“I take 300ml 4-6 times a day with 100ml of water.” They nod along very slowly and then turn right back to whoever is with me as soon as I finish talking. It’s as if nothing I said made any sense. I’m just a crippled kid that’s too sick to have any semblance of a rational thought.

“Does he get bed sores?”

“Can he be off the ventilator?”

“How does he get transferred?”

Always “he”, never “you”. They don’t act like I’m human.


On my second hospital visit, the ER doctors ordered my very first CT scan. I’d never done one before, so I had no idea what to expect.

“Can I stay with him?” asked my dad as the doctors wheeled me into the room. There was a large tube shaped machine in center of the room. It looked like something out of a Sci-fi series. I half expected to get transported to Mars where an alien would tell me the meaning of life.*

“No, you can wait outside.” said the nurse.

“But you won’t be able to understand him.”

“Don’t worry, we’ll take good care of him.” Apparently, it doesn’t matter that they can’t understand what I’m saying. As long as they can see my vitals, everything is fine. Never mind that I know more about myself than they do or that I can tell them what’s going on without them having to waste time figuring out if something is wrong. That doesn’t matter to them. They obviously know better than me.

So my dad went outside and they slowly wheeled me under the alien transportation machine while being very careful not to pull on my IV or trach. The machine whirred to life and made lots of whiny noises that gave me hope for my alien theory. I watched it flash and spin and wondered if this was all there was to the procedure. It wasn’t.

I saw one of the nurses walk up next to me, grab my IV and inject what felt like a very hot liquid into my vein.

Oh, you’re not going to tell me what that was? Thank you.

He casually walked away as the liquid coursed through my arm and spread to my chest. The initial hotness of it turned to a searing burn. It moved from my chest to my other arm and pretty soon engulfed my whole body.

I imagine this is what being on fire feels like.

My chest tightened, my breathing got shallower and my heart started racing. Calling the nurse would have been useless because she couldn’t hear me anyway. And even if she did hear me, she wouldn’t be able to understand me. I wanted to freak out. I wanted to scream, “I think I’m dying here guys!”. But that wouldn’t have helped anyone.*

“Are you okay, honey?” The other nurses’ voice blared through the intercom.

“Uh… no.”

“Okay, you’re doing great, honey. We’re almost done.”

You clearly understood exactly what I said. I get snarky when my life is in danger.

The machine kept whirring and I kept hoping that my heart wouldn’t explode. The burning slowly subsided and they pulled me out.

“You did great! Are you feeling okay?”

“No, my heart rate is really high and that medicine you gave me burned a lot.”

She looked around confused to the doctor and technician. “Let me get his dad, I can’t understand him.”

I’m right here, lady! I rolled my eyes, but she didn’t see. She came back in with my dad, “I can’t understand him.”

I repeated what I said to my dad and he repeated it to her, “Oh yeah that was the IV contrast, it helps the CT machine see everything. He did have apnea and an elevated heart rate, but it wasn’t too bad.”

It felt pretty bad.

I was scared, exhausted and I had been throwing up for about 8 hours, so I let it go. I wasn’t about to make a show about something that wasn’t going to affect me right then and there , but this should never happen to anyone. If I was any other patient they would have had the decency to tell me, “Hey, we’re injecting your vein with this thing that’s going to make your body feel like you’re on fire and might make you feel like you’re dying”. They might have the decency to talk to me instead of at me. But they don’t. Because, to them, I’m just a frail crippled boy.

*It’s 42, I don’t need aliens to tell me that.

*Pro-tip: Freaking out doesn’t help a high heart rate.

I Almost Died… Again

Going to the hospital is always an adventure. I had made the decision to go to the ER because I had been having trouble breathing for upwards of two weeks. I would wake up with a dry throat, dry mouth and hacking up a lung. It gets especially bad on Sundays, when it’s only my mom or dad with me and my brother for 16 hours of the day. Usually, my brother has a day nurse, but he was running low on hours so he won’t get her back until next week. At that time, however, all I knew was that something was wrong and I needed to find out what it was before it got worse.

When I’m home, I get to make all the decisions. If I need suction, I just ask for it. If something hurts, I ask for medicine. I have complete control over everything that has to do with my body. It’s not like that at a hospital. At least not for me. They’re not used to dealing with someone, in my condition, that’s completely in charge of their care. So they assume that I’m not capable, that I don’t know what’s going on.

“Has he fallen in the last month?” They ask my mom as they admit me. Now, I understand that they have paperwork to do and that they have to adhere to certain procedures, but the least they could do is acknowledge that I’m capable of answering that question. But they don’t. They repeatedly asked my mom questions without even looking at me. It didn’t matter how many times I spoke up they almost always looked at my mom. After about the fifth basic question I gave up and decided to just let my mom answer everything. I figured, it was just easier to let them do what they want to do. After all, they couldn’t fuck up too bad, right?

“All right, we opened up a bed for him. We’re going to move him up to the ICU”. Said the ER nurse as she walked in. If you have never been escorted from the ER to the ICU, let me tell you what it’s like. You have a team of nurses and respiratory therapists hauling you and all your life sustaining equipment down a corridor. They take you on a humongous medical elevator only to let you out at another long corridor. The lights are all fluorescent and there’s a distinct lack of windows. It doesn’t matter what time of the day you came in because time is irrelevant. The only context in which time matters is what time you have to get your medicine. At the end of this long corridor are two remotely operated double doors that make a loud clicking noise every time they open. To open them, you have to pick up a phone that’s mounted on the wall and identify yourself to the nurse inside. I don’t think it is an exaggeration to say that it feels like you’re walking on death row.

Once you’re inside, all you hear is the constant beeping of heart and oxygen monitors. They don’t go silent based on what time of day it is. To the monitors, the sun and the moon don’t exist. All that exists is your beating heart and your vital signs.

There’s a nurses station right in the middle of the floor, but you rarely see the nurses in it. They’re always going from room to room giving medicine or checking vital signs. All that matters to them is that their patients vital signs are okay and that there’s nothing visibly wrong with them because, to be fair, that’s all they have time to worry about.

“We will take it from here” says the ICU nurse to the ER nurse. Immediately, I’m surrounded by a gaggle of people ready to transfer me from my chair to the bed. They ask my mom what the best way to do it is. When she tells them that she just needs help carrying me their eyes widen, “Are you sure?”

“Yeah” she says nonchalantly. They’re not sure what to make of it, but they figure she knows what she’s talking about, at least about that. They got me on their bed and shoved my mom aside so that they could do what they do.

“I need to turn you to look at your back, okaaaaaaaaaaaay?” Said the extremely tiny nurse in her most condescending voice. The reason they wanted to turn me was to check for bed sores on my back. They assume that I can’t feel anything so they have to check in order to cover their asses.

Now, before I go any further I need to explain something to you. There are two kinds of trach’s: cuffed and uncuffed. When a trach is cuffed it has a little balloon inside of it that helps keep it in place. Doctors and hospitals like it because it’s generally safer for the patient. The problem with them is that it makes it almost impossible to talk. Because of that, I like to keep mine uncuffed. It’s a little riskier because there is a higher probability of it getting pulled out, but, as long as you’re careful it will stay in. It’s a fair trade off for me: make sure that people are mindful of the trach and keep the ability to talk. The problem is that hospitals don’t usually deal with uncuffed trachs.

I’m not exactly sure how to describe what happened next. I know they turned me and I know that I could immediately tell that they hadn’t given my trach enough slack. I can also say that I could tell right away that the trach had come out. I wasn’t getting any air and I watched the young nurse on my right look around, confused. It was obvious that he knew something was wrong, but he couldn’t quite figure out what. The tiny nurse on my left was dutifully inspecting my back and it wasn’t until the other nurse started yelling for help that she noticed anything wrong. I watched as everyone around me panicked. All they had to do was put the trach back in. My mom knew as much and started trying to push everyone out of the way.

It’s weird, everyone around me was panicking. There was lots of screaming. Lots of, “We need some help over here”’s. I was turning blue and my oxygen was dropping. I knew I was in trouble, but… I wasn’t scared. It felt as if I was outside of the situation, just watching everyone panic. It was… cathartic. I know what you’re thinking, “You almost died and you say it was cathartic?” Short answer?Yeah. For a few seconds, I could just sit back and watch the unmitigated chaos around me. Everyone was reduced to their most primal instincts. The mother, trying desperately to save her son. The young rookie nurse, who’s really just a kid my age, screaming for help. His hands shaking as he tries to put the trach back in. He really shouldn’t be there, but he is, so he’s dealing with it as best he can. He doesn’t realize how much we have in common. The tiny, mild mannered nurse pushed aside by my mom… desperately trying to figure out what to do. And then me, just calm as a cow. Not worrying about anything but watching it all unfold. Everyone was playing the role they were supposed to, and, just for a brief second, everything seemed okay.

I don’t remember who put it back in or how it happened. All I remember is my mom hugging me tight and asking me if I was okay. I looked at her with furrowed brows as if to say, of course I’m okay… why wouldn’t I be?

Just Breathe

I was supposed to blog about managed care today, but I’m not going to do that. Instead, I want to tell you about my Saturday.

Due to the cuts that I had to make to my nursing care, the only person with me that day was my dad. The problem with this is that my brother and I are in different rooms. That means that my dad has to run between rooms when one of us needs something. So we set up a system. When I need something, I call the house phone using skype, if it’s a real emergency, Otherwise, I speak into a baby monitor that he puts on my shoulder.

Like everyone else, I have good days and bad days. Normally, when I have bad days, I have nurses that can help me get through it. I can tell them what I need and they’ll do it. But because my dad was taking care of both of us, I had to limit what I asked for.

It started with a very loud wheezing around 6pm. Phlegm was blocking my airway. I could tell it was in my airway because of the distinct vibrations I felt every time I took a breath. I could also tell the exact position of the phlegm and I knew that suctioning (taking a catheter, sticking it down my trach and sucking the phlegm out) wasn’t going to help. The path the catheter had to take was such that it bypassed the actual position of the phlegm, which was on the bottom left side of the trach. It didn’t matter how many times my dad suctioned me (it was 6, I counted), he was never going to get the phlegm out. What I needed to do was change the trach all together. The problem was that my dad was the only person there, you need to two people to change the trach.

“Let me suction you again.” He anxiously watched the oxygen saturation monitor every time he pulled the catheter out. It fluctuated between 96% and 92%. A healthy person has an oxygen saturation of 98-100. Dipping below 95 is dangerous, as it causes a decrease in brain function. I had been dipping below 95 since 8pm. It was now 10pm and I wasn’t getting any better.

“Wait ’til eleven, then change my trach when the nurse gets here.”

“Let me change it right now “

“No, I can wait.” I knew that if he did it by himself it had the potential to turn worse. If, for some reason, something went wrong, there would have been no one there to help him. Waiting one more hour was a risky decision, but it was one that I had to make.

I don’t know how many of you know what it’s like to not have the ability to breathe properly for an extended period of time, so let me tell you. Imagine that you’re breathing through a straw. All the air that you breathe has to go through that little opening at the bottom of the straw. Now, what if that opening is blocked and you can only get half the air that you were getting before? Naturally, you are going to struggle, but there’s nothing you can do. You just have to wait it out and hope that it doesn’t get any worse. So that’s what I did. I sat, in my bed, wheezing and intently staring at the clock. It was 10:50 pm, but it might as well have been 8 pm again. It felt like it’d never end. I watched as the clock turned from 10:58 to 10:59 and finally to 11:00.

“Are you ready to do this?” said my nurse as he walked in. My dad had told him what was going on as he frantically collected the supplies to change the trach. They laid me flat and I watched as huge chunk of phlegm came out with the trach. I was instantly better, and felt a twinge of pride for having made it through.

“Quick, take a picture.”


Raul Carranza is a full-time activist and college student (when he has the nursing hours).  When he is not blogging about the evils of budget cuts and private insurance, he competes in Strongman bouts and is a tactical planner for the A-Team.


Last week I had to let one of my nurses, Laura, go. We both saw it coming, just… not this soon. We had a plan that would have had me covered until June and would have allowed her to stay. Needless to say, that plan backfired and now I’m down a nurse. I’m not going to go into details as to why, mainly because it doesn’t really matter now. What matters is that, what I’ve been talking about for months, has finally happened. My nursing have been cut. But that’s not what I want to talk about. Instead, I’d like to talk about what Laura did for me, not only as a nurse, but as a friend.

Laura worked the 3-11pm shift. I remember when I first came back from UCLA and she was working with my brother. At first it didn’t seem like we’d get along well, at least not to me. The agency had sent a different nurse, but the prospect of training another nurse from scratch was not appealing since I had just gotten home from LA where I had gone through a carousel of nurses. So I made a deal with my brother: You take the new quiet, shy nurse and I’ll take the one that doesn’t shut up about politics and Battlestar Galactica.* She had been working with my brother, so she already knew the basics of how to take care of me.

During the course of your life you make a lot of decisions. Sometimes those decisions seem small and sometimes they seem huge. The funny thing is that, every now and then, the decisions that don’t feel like a huge deal at the time turn out to be completely life altering.

“I’ve never seen anything like it before!” Laura said one day, her eyes wide with excitement and hands wildly waving around her head. “There’s so many people! All over the country. It’s amazing. ” That was the first time I’d ever heard about the Occupy movement. I’d never seen her so excited.

I admit, I wasn’t really very political before Occupy. Sure, I had my views and opinions, but I didn’t really care for politics. I didn’t see the point in getting involved. But there was something about the way she talked about it that intrigued me. Maybe it was just the right idea at the right time, maybe it fed into my anti-authoritarian streak. Whatever it was, I knew I wanted to be a part of it.

“Are you sure you want to go today?”


“But it’s raining.”

“I can see that.”

“Okay…” She said as she opened the car door.. I’d come to know that ‘Okay…’ quite well. It usually said, ‘I can’t believe I’m doing this right now’. This time, though… this time it said, ‘I’m going to walk three blocks, in the rain, to an organizational meeting for an international movement that has yet to start… with a person in an electric wheelchair that depends on an electrical machine to survive’. The ridiculousness of the situation was not lost on me, but a little water never hurt anyone (my equipment is very well protected) and I hadn’t showered that day anyway.

The challenge for me in the rain is not the actual rain itself, but the cold that comes with it. Because my body generates less heat than the average person (due to less movement), I’m extremely sensitive to the cold. It stiffens my muscles and makes it impossible to move my thumb, which I use to control my chair.

No thumb = no chair = no moving = stuck downtown in the rain.

Still, I felt confident in our ability to get down to the meeting. And we did. It took us a little longer than most, but we got there. We were soaking wet, cranky and sat through a meeting where people argued for 3 hours about when to have more meetings and how to decide when to have more meetings. But the point is she got me there.

As frustrating as that meeting was it still piqued my curiosity. My curiosity led to this, which led to this and then this.

Looking back, I can’t believe she actually did that. Any other person would have told me to fuck off and, you know what? I would not have blamed them for it. Laura consistently went above and beyond the call. She didn’t do it for for the money, because the money was shit. She did it because she cared. She did it because she wanted to see me happy. That’s a rare fucking quality in this world.

I don’t think we’re going to work together again. Not that I wouldn’t love to have her back, because I would. But even if I do get my hours back, it feels like she’s moving on. That isn’t necessarily a bad thing, it’s just the way it is. She’ll obviously still be part of my life, a big part, she just won’t be here everyday.

* To be completely fair though, the reason she was talking about Battlestar Galactica was because I was also talking about it.


Raul Carranza is a full-time activist and a college student (when he has the nursing hours).  When he is not blogging about the evils of budget cuts and private insurance, he competes in Strongman bouts and is a tactical planner for the A-Team.

An Open Letter to Glenn Beck: I’m Disabled and I Support Assisted Suicide

Dear Glenn Beck,

I’m disabled and I think you’re hilariously wrong, as usual. Let me tell you why.

You recently did a segment on your radio show about assisted suicide. In it, you lambasted a mother that went on Dr. Phil and talked about wanting to euthanize her two mentally disabled children.

Now, I don’t know the circumstances of this case, I don’t know what kind of condition they’re in or how much they’re suffering, so I can’t comment on that situation. What I can comment on is the stand you took against assisted suicide. You said, “Suicide is never an option”. Yes, it is.

I’m in a wheelchair. I can’t breathe on my own, I can’t move and I can’t do much of anything without assistance (I’m writing this using my right thumb and a virtual keyboard). What I have to go through in my daily life is beyond your comprehension. Yes, you have a disabled daughter and yes, she faces great challenges too, but you personally have never experienced the challenges that we have.

Our medical benefits are being slashed at an alarming rate. Mine have already been cut to the point where I can’t live a life independent from my family. Everyday is a struggle to have decent life. You are telling me that, should I ever decide my quality of life was not acceptable and didn’t see it getting better, that I can’t decide to end my suffering. You are telling me that, because it offends your sensibilities, I can’t exercise the only power I have? Sorry, that just won’t fly.

You don’t get to make that decision.

You tried to frame this as the government trying to euthanize the disabled, but it’s simply not. This is about the government giving people the freedom to do what they want with their bodies. Yes, sometimes this involves decisions that you don’t agree with , but that’s freedom and that’s democracy. As long it doesn’t infringe on your rights you’re just going to have to deal with it. Life is full of tough and ugly choices. People like myself have to make them everyday. You might not agree with those choices, but to deny us that option is inhumane.


Raul Carranza is a full-time activist and a college student (when he has the nursing hours).  When he is not blogging about the evils of budget cuts and private insurance, he competes in Strongman bouts and is a tactical planner for the A-Team.

On Managed Care – Part 2 – Molina

<— Part 1

There are two types of medical insurances: government and private. With government insurance such as Medi-cal and Medicaid it’s easier to get medication and equipment that you need. Don’t take this to mean that it’s easy, it’s just easier than private insurance. Because private insurances are for profit they have to think about money before health. This is the fundamental problem with for profit insurance companies.

The biggest for profit insurance company right now is Molina Healthcare. They have managed to finnagle their way into Medicaid and Medi-Cal. They sued the government in every single state and forced them to hand them the contract to those programs.

Molina is the company that has taken over my healthcare. They seem innocent enough. When you go to their website you’re confronted with the image of a smiling mother and child. However, not one week after being switched over to them, I’m already receiving phone calls asking for me to change my doctor. Of course, I told them no. They would like to switch everyone to their doctors and their pharmacies. There are two issues with that:

1. The doctors that I have right now are some of the very best in San Diego. I already have an established relationship with them and they know my needs. Changing doctors would mean starting over with someone that is already overworked and extremely stressed out. The quality of my care would inevitably go down until I built that relationship with the new doctors.
2. They just don’t care. The doctors that they want me to have just plain don’t care. It’s not because they’re bad people or anything like that, but they see so many patients a day that it’s impossible for them to care anymore. No human being has the capacity to see so many people and still give them the care that they need. There are exceptions, of course, but by and large this is true for most of the medical field.

When they switch people from one doctor to another they are, inevitably, lowering their quality of care, whether they want to admit it or not. Most people don’t have the time or energy to stop them from changing their doctors. They will do what they say because of some perceived notion that Molina has their best interest in mind or that it’s useless to resist because it’s going to happen anyway. The people at the top know this and use it to get what they want and that’s my core problem with Molina.

When you are entrusted with people’s health you need to make sure that that is your number one priority. The fact is that Molina doesn’t have health as its number one priority and that is something that eventually will get people killed.