Soundtrack of my Life

Someone please read this to me in case I ever get Alzheimer’s, so I remember who the hell I am, a la “The Notebook”😉

Also, here’s a tip. There are a lot…..a lot, of links in this entry, mostly on page 3. (Page numbers at the bottom.🙂 ) And if you’re curious to know what the song is, but don’t want to click on every link, simply hover over the link and the artist and title will appear.🙂

“My first music memory.”
I’m 8 years old. Saturday morning. Watching videos on TV with my big brother. (That was back when MTV actually played videos!) Some guy sitting on a chair in what looks like a gym. Glasses. Awful looking “salt and pepper” dye job with the grey hair. A janitor sweeps up papers and confetti, balloons and streamers, as the guy sits there looking at posters on the wall while he whistles a tune unfamiliar to my young ears. “Most likely to succeed.” “Most popular.” “Best athlete,” the posters read. I knew enough to know that was a high school reunion, tho it would be 20 years before I’d be invited to one of my own.

Suddenly, people start singing. No instruments. Just their voices. And snapping to a beat. “whoooooa oh oh oh, for the longest, for the longest time. Whoa oh oh….” It was so cool! Hearing what I later would learn is called a capella music. It was awesome! You could dance to it, you could sing along, you’d sing the various parts, from the words to the background music the guys were making using only their voices. It’s my first memory of listening to music, really listening, and to this day I absolutely am captivated by groups like Straight No Chaser and Pentatonix.

(And I still know all the words to “We Didn’t Start the Fire” and “Piano Man” too :-)  )

“Thank you for writing the longest song ever, Don Mclean”
I’m 9 years old. Dad’s pissed off, yelling in the living room. I head to my room and close the door. Scared. I mean what the hell do I know, I’m 9 and he’s raging about car insurance. I nervously pace back and forth. I try to read a book. Take a nap. Plug my ears. Nothing helps. Then I start to sing. It’s 8 1/2 minutes long. And I knew all the words. (I still do.) “A long, long time ago. I could still remember how that music used to make me smile.” I get to the chorus. “Bye bye Miss American Pie, drove my Chevy to the levee but the levee was dry….” Over and over I sing that 8 1/2 minute song for what seemed like forever. Until the raging went away. 

(Sidenote: It’s been 30 years, he’s since mellowed, I went to therapy. We ku.🙂 )

“Metallica understands. I’m not alone.”
I’m 15 years old. Just went through a third shunt revision for the hydrocephalus I was born with. Seems this one has plugged up with scar tissue from the last two surgeries. I’m so isolated. Sad. Scared. Not going to school because of all these surgeries and recoveries. Don’t really see my friends. I’d always been an emotional, sensitive young man. (Hell, I’m an emotional, sensitive adult!) And this, these surgeries, this pain both physical and emotional, the loneliness…..it was just more than I could handle. More than a 15-year-old kid should handle. Yeah “it could always be worse” but it still sucks. I should be starting junior year. Hanging out with friends. Getting ready to turn 16 and get a license. I shouldn’t be recovering from surgery after surgery, coming to school with a hat on my half-shaved head. That is, hat on my head on the rare occasion I came to school!

So I’d find solace in music. In my favorite band. They had pissed off, angry music. And that’s how I felt a lot of the time. Pissed off. Angry. Resentful. Wondering why God was letting this happen to me. But they also had one song that wasn’t so angry. Actually, quite the opposite. It was filled with melancholy. Sadness. Regret even. It had the lines, “I have lost the will to live, simply nothing more to give. There is nothing more for me, need the end to set me free” and “Death greets me warm, now I will just say goodbye”……but I never looked at it as permission/condoning suicide. Instead I felt comfort. I felt like someone, this amazing band, understood. They got it. The feelings of fear and loneliness, sadness and giving up on life. And I found that comforting. I wasn’t alone. Metallica understood my pain.

It wasn’t until years and years later that I found out the inspiration for the song was the fact that their equipment had been stolen! Still, it helped get me through a horrible time when I needed it and they remain to this day the greatest band ever!

“She made me feel normal”
17 years old. Still having surgeries. Mostly shunt revisions with some other ones thrown in, also SB related, because screw you why not?! Really no social life to speak of. I had friends. People who were always happy to see me when I’d actually show up at school. I even had a girlfriend. God bless her, sticking by me through all this. But we never went anywhere, never did anything. I was too sick. Or had headaches, or recovering from something. Or having panic attacks that I didn’t actually know were panic attacks until more than a decade later, when anxiety and panic attacks became as much a part of my official diagnosis as SB and hydro were.

But there was one friend, a really nice lady, who truly cared. And she always went the extra mile. I’ve written about her in other entries on this site, and she’ll turn up again in this entry. She was simply a wonderful woman who appreciated her friends, and I was blessed enough to call her my friend.

And she invited me to a pool hall! Are you kidding me?! Nobody invited me anywhere! But she did. She showed up to my parents house that evening and I still remember exactly what she was wearing. Short black boots. Black jeans. A purple top. And a black denim jacket, all of which highlighted her long blond hair and the most beautiful blue eyes ever. We get to the pool hall and start playing. I suck at pool! Still do. My “strategy” is to hit the ball as hard as I can! Maybe it’ll ricochet and end up hitting something🙂 This song comes on over the speakers. She starts lightly headbangin’. Singing along. “Smashing through the boundaries, lunacy has found me, cannot stop the battery!” Then she grabs me and swings me around.  “Cannot kill the family, battery is found in me!” So fun! Such a good night. Yeah I ended up with a headache, something about staples in my head or something, but that….such a beautiful memory. My friend helped me feel normal. For one night, Crystal made me feel just like any other 17-year-old kid. I will never ever forget that.

It’s been since 2008 that they’ve come to town. Looking forward to the day thousands of fans will once again go crazy the moment they hear this song begin!!!  \m/(- -)\m/

“Really, radio station that’s trying to figure out its format…..really???”
I’m 18 years old. By some miracle I graduated. The district had let the elective credits slide and I only needed to do the core class stuff. So I got to walk with my class at graduation. Later that summer, August, my aforementioned girlfriend and I were heading off to different colleges. Still in-state for both, but far enough away that I couldn’t just drive up to see her. She had stuck by me through all the medical drama. Sure it was more than any kid should go through for me, but it was also a lot more than any girlfriend should have to watch. But god love her, she stuck it out.

She came over a few days before she was scheduled to head for school. We hung out that day, that evening, into the next day. Laughing a lot. Just having a great time. It was fun. No tears. Um, until the following morning. She was getting ready to head out. Then we got to talking. “I’m gonna miss you.” “I’ll miss you. But you won’t even notice I’m gone. You’ll be busy too, going to college, making new friends. It’ll be ok.” In the background, this new radio station, Alice 105.9, is playing. They were still trying to figure out their format. It had literally just been created a week earlier. Playing everything from pop to rock to 70’s, figuring themselves out. We’re saying our goodbyes, trying to have “a moment” while Ace of Base plays in the background. Already we can sense what’s going to happen here. Little did we know what was coming, but this song was already emotional enough. “It’s tearing me apart that you’re leaving, I’m letting you go. But I won’t let you know.” It’s getting more and more difficult to ignore what’s happening in the background. “Don’t turn around, I don’t want you seeing me cry.” A single solitary tear drop falls from her face. More for me. (Toldja I’m a wimp.)

BUT THEN…..while that song fades out, keep in mind this station is still looking for an identity so this makes sense…..we hear the first few notes of the next song. And boy oh boy, do the tears start flowing! We sorta just lose it. No self-control. Just bawling. (I’m pretty sure she actually said, “Really, radio station?! Really?!”)

We broke up less than a month later. “It’s not you, it’s me” and “finding ourselves” and all that. We’d met at 12 years old and had been through so much. That one stung a while.

…………CONTINUED ON PAGE 2

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Spina Bifida FAQ’s: Everything You Ever Wanted To Know About SB (updated 10/23/14)

October is Spina Bifida Awareness Month. For those that don’t know, Spina Bifida is the #1 permanently disabling birth defect in the United States. More people are affected by it than muscular dystrophy, multiple sclerosis, and cystic fibrosis *combined*. I was born with it. And so in honor of awareness month, here is a list of SB related facts. Some were posted on my FB last year, some are brand new. Lengthy as this entry is, it is by no means a complete list and if anyone would like me to add anything, please feel free to leave it in the comments section and I will fact-check it then add it. Still, it’s a pretty comprehensive list. Maybe bookmark it and come back and finish the 3 pages later.😉 As for my credentials to be saying all these things, I’m not a doctor. But I am an almost 40 year old man who has SB, and hydrocephalus and Chiari II among other secondary conditions that accompany SB. And I paid attention to doctors when they said things at the National SB conferences I attended for 9 years in a row. These are nationally renowned experts, in some cases world renowned experts, in SB. For some, their entire careers have been learning more about SB. So as far as I know from personal experience and from all those doctors saying all those things, every SB fact below is valid.
Don’t forget to click on the pictures to enlarge them. And all the links to learn more. As well as reblog, share, reTweet, repost on various social media and get the word out about this post. Let’s spread the word about Spina Bifida!! Pay close attention to #7 on page two. (Keep scrolling until you see the numbered pages, some people have missed that, and thought I only had 6 facts. I’m wordier than that)😉 So #7 is full of great information for new parents and for anybody who wants to know what the day-to-day is really like for us. Please click on all the links in #7 as well. And #8 is also pretty important in terms of educating able-bodied folks on something that is key when thinking of the way you see/interact with people with disabilities. Please click those important links also. And #21. Stop sharing that meme. Pretty please🙂

Happy reading🙂

Hi Milo! :)

Hi Milo!🙂

1. Spina Bifida (which means “split spine” in Latin) is a developmental birth defect often referred to as a “neural tube” defect. The neural tube is what eventually becomes the spine and brain. This defect, which usually happens in the first 30 days of pregnancy, before a woman even knows she is pregnant, entails the incomplete closure of the embryonic neural tube. What results at birth is that some vertebrae overlying the spinal cord are not fully formed and remain open. In the most common form of Spina Bifida called myelomeningocele -pronounced (no really) Milo My Ninja Seal- the baby is born with a sac on his back, filled with cerebrospinal fluid (CSF) and spinal nerves. The doctor will then place the nerves back into the baby’s spinal column and close up his back. The damage however, is done. This is not a “cure”. It simply stops the nerve damage where it’s at and closes up the back.

sb2. Spina Bifida is accompanied by a condition called hydrocephalus in 80%-85% of cases.

Hydrocephalus: “A chronic neurological condition characterized by an increased volume of cerebrospinal fluid (CSF) within the spaces of the brain called ventricles.”

Cerebrospinal fluid is produced by the choroid plexus, in the ventricles of the brain. This fluid then travels all around your brain and spine and serves to, among other things, protect and cushion those structures. Hydrocephalus is when that fluid doesn’t reabsorb into the body, at which point it would then get reproduced, then reabsorbs, and so on. This cycle should happen 4x a day. With hydrocephalus, it gets produced as it should, but then just stays there in the ventricles. In younger infants, all that CSF can cause increased head circumference due to the skull not yet being one solid, hard piece. (Along with other serious complications including death. The bigger head is just the most obvious outward sign when you’re a baby.) In older kids and adults, the intracranial pressure placed on the brain from all that CSF can cause headaches, blurred vision, decreased mental capacity and other cognitive changes including a change in personality or demeanor, nausea, vomiting, fever, infection, and if not treated with a shunt, can cause death. I have what is called a VPL (ventriculo-pleural) shunt which is a catheter that is placed within one of the ventricles, connects to a one-way valve, and runs down my neck, resting above my lung, in the lining between my right lung and my ribcage, where CSF is drained and then absorbed by my body. Sometimes, these shunts break. Or get infected, or the holes meant to drain CSF get plugged up. That causes the shunt to fail. Then a shunt revision becomes necessary. The picture below shows a ventriculo-peritoneal (VP) shunt, which is a more common place for the shunt to drain. VP shunt

And this is my head after my last shunt revision in August 2013.

shunt surgery

Hardcore, right? \m/(- -)\m/

3. Another condition that often accompanies Spina Bifida is called Arnold Chiari Malformation, or Chiari II. There are four different types of Chiari but if you are born with SB and also have Chiari, then you always have Chiari II. Part of the clinical definition is “consists of a downward displacement of the cerebellar tonsils through the foramen magnum (the opening at the base of the skull)”. Basically part of your cerebellum goes down into the top of your spinal column where it’s not supposed to be. Among other things, this stops CSF from flowing freely. Also, your cerebellum controls autonomic functions, which are things you can’t control consciously, such as breathing and swallowing and regulating body temperature. These autonomic functions are affected when you have Chiari II. Some symptoms are more severe than others. While some people end up with nothing more than a pretty bad gag reflex, for others it can be more serious and cause choking or severe breathing problems, sleep apnea or other sleeping disorders.
Here we have a typical brain and a Chiari brain. Note the herniated cerebellum, lower than it should be.
chiari and syrinxConveniently, what this picture also shows is a syrinx in the spinal column:
4. Syringomyelia. Or a syrinx. A syrinx is a fluid (CSF) filled bubble that forms in your spinal column. As previously mentioned, the spinal column has CSF running all through it. But within that, a cyst can also form, also filled with CSF. And it can be small or it can run the whole length of your spine. The length matters less than the width. If it’s too wide, it can crush spinal nerves and cause even more damage. In those cases, the neurosurgeon can try to drain it, although it may return, or she may place a shunt in your spine which should do the same thing it does in your brain; ie, continually drain CSF.
My syrinx is small, only at c7, and not obstructing CSF flow around it or crushing nerves. It was that size at an MRI in 1992 and that size at the MRI in 2013 and hopefully it will never get bigger.
5. Children with SB are often referred to as “million dollar babies” because of the estimated healthcare costs over a lifetime of care. (This source is calculated in 1980’s money, so it’s actually quite a bit more!)
sb baby6. Spina Bifida is the #1 permanently disabling birth defect in the United States. More people are affected by it (or would be….more on that in #7) than muscular dystrophy, multiple sclerosis, and cystic fibrosis *combined*. It’s also the most complex birth defect you could have and still survive. This is because it affects almost every part of your body and organs, either from the SB itself or from secondary or tertiary conditions. For example, one way your brain is affected is from the hydrocephalus, yes, but it can also be affected from the shunt surgeries that are meant to correct the hydrocephalus. Too many shunt surgeries can cause scarring on your brain which can lead to seizures. 40% of people with SB have some form of epilepsy. SB affects kidneys and can also have an effect on other internal organs for various reasons, including the fact that some of us have curvature of the spine, which can cause our lungs to not have enough room to adequately expand in our rib cages. So fact #6…..SB is not only the most common permanently disabling birth defect but is also the most complex in terms of body systems affected.
But if we are in fact #1, then how many of us are there? Well, rough estimates from various sources say there are currently 166,000 people in the US living with SB. I know what you’re thinking….”But wait….shouldn’t that number be higher?! If it affects more people than CF, MS and MD combined, shouldn’t there be more?!” Yep. Which brings me to SB Fact #7 and an explanation for why there aren’t more of us if we are ahead of those other more well-known conditions:
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An Open Letter to My Mom (Mother’s Day – updated 2015) and “A Child’s Angel”

Recently I was able to get all my medical records. 90% of them anyway, from the two main hospitals at which I was seen. No, a truck didn’t show up with pallets and pallets full of records, dumping them on my front lawn! Almost. But not quite. It’s a good 300+ pages of written reports. Also, CD’s filled with x-rays and ct’s and mri’s. Interesting stuff. I see everything I went through, all the surgeries I ever had, all the complications from those surgeries, all the ER visits, all the SB clinic visits. Knee injuries, broken wrists, stomach aches. It’s all there.

And a lot crosses my mind reading those things. Mainly two things. A. How the hell am I still alive??? I’ve almost died like 4 times from complications of SB…..how the hell am I still here??? And B. My mom. My mom was a constant through it all. She’s everywhere in those records. “We talked to his mom who came with him today about” so and so procedure. “His mom feels strongly” this or that about whatever decision. “Mom thinks he is ready for” whatever surgery. She’s just everywhere. My mom. Mami.

As I read my records, almost 35+ years worth, it didn’t take very long to see what an important role my mom played. I didn’t have to get too far, didn’t have to read too much, to see just how much my mom loved her middle son and how much she fought for me in life. I saw pretty quickly that I would be nowhere and nobody if it weren’t for some of the things my mom did and said back in the day. Here’s just one example taken from those reports:

12-2-80

“His mother is aware that in September 1981 he will be ready for kindergarten. Mom visited Valverde Elementary, a pubic school, where it was recommended to her that he instead attend Boettcher School for the Disabled. After visiting Boettcher, his mother feels it was not an appropriate school for him and that he needs to go to school with his peers and be treated as a non-disabled child. She feels he would not be able to fulfill his potential if forced to attend Boettcher. We agree that it would be unfortunate if he were to develop a self-image that would not be consistent with what appears to be his intellectual ability. Mom asked if there were tests he can take to prove his capabilities to DPS. Therefore we will be administering intellectual and language testing this January which will hopefully help in mainstreaming him.”

That made this author tear up. Mom fighting the system, so that DPS didn’t just stick me where they thought I needed to be, where I wouldn’t be able to thrive and where nothing would be expected of me. And she did that in 1980. Back when there were no IEP’s, no diagnosis of learning disabilities I may or may not have had, no accommodations of any sort, no nothing. Mom kicking ass and taking names, advocating for her son in a way that was all too rare in 1980. Dad was around, doing the equally important job of making the money that paid for medical procedures and PT and hospital visits. But it was mom yelling at whoever she needed to yell at, talking to whatever doctor she needed to talk to, just doing whatever she had to do so that I could live as normal a life as possible, all while teaching me to ask for what I needed and to advocate for myself. “You talk to the doctor, you’re the patient, not me. Y dile que te duele mucho. Nomas asi hacen algo. Tell him it hurts a lot. That’s the only way they’ll do something about it.”

That was my mom. Still is. Kickin’ ass and taking names.

So……..how do I thank a person for doing all that? For being there for me literally from the second I was born with that thing she couldn’t even pronounce, let alone begin to understand. Myelo what??? Spina who?? Hydro, say it again??…..With a huge bubble on my back filled with fluid and spinal nerves, doctors telling my mom and dad that I won’t live more than a year (and here I go, pushin’ 40.) She never wavered. From the second I was born, advocating for my best interest, while teaching me to advocate for myself.

How do you thank someone for the times she stayed with you in the hospital, sometimes weeks or months at a time day and night, in high school when it seemed like every other month was another shunt surgery? AND for two shunt surgeries in summer 2013 for which she was also there?!  Along with my loving wife, who had never experienced anything like emergency shunt surgeries, my mom was there for these shunt revisions; surgeries I hadn’t needed in 17 years.  Always being strong for me, when I was done being strong after my right lung collapsed from the 3rd or 4th complication from a surgery I just had. (“Strong” in that she never cried in front of me, but years later she admitted that she’d leave the room, completely lose it, only to come back in with more strength to give.❤ ) How do you thank someone who is always there to cheer you on, support you, love you no matter what…through SB and non SB related things like marriage….and a divorce, which by the way, is still the most difficult and painful thing I’ve ever gone through; harder than any surgery, hospital stay, or complication from SB definitely. And she continued to be there, to see me relearn myself, rebuild myself, restart my life, even have a new marriage. How do you thank her for that, and the countless other things I have no space to write about. How do you do that? You don’t. There aren’t any words to convey how grateful I am for my mom. All I can say is……happy Mother’s Day mom. Thank you for being my mom.

Your son,
Bleeding Ink

A Child’s Angel

Once upon a time there was a child ready to be born. So one day he asked God:

“They tell me you are sending me to Earth tomorrow but how am I going to live there being so small and helpless?”

“Among the many angels, I chose one for you. She will be waiting for you and will take care of you.”

“But tell me, here in Heaven, I don’t do anything else but sing and smile, that’s enough for me to be happy.”

“Your angel will sing for you and will also smile for you every day. And you will feel your angel’s love and be happy.”

“And how am I going to be able to understand when people talk to me, if I don’t know the language that men talk?”

“Your angel will tell you the most beautiful and sweet words you will ever hear, and with much patience and care, your angel will teach you how to speak.”

“And what am I going to do when I want to talk to you?”

“Your angel will place your hands together and will teach you how to pray.”

“I’ve heard that on earth there are bad men. Who will protect me?”

“Your angel will defend you even if it means risking its life.”

“But I will always be sad because I will not see you anymore.”

“Your angel will always talk to you about me and will teach you the way for you to come back to me, even though I will always be next to you.”

At that moment there was much peace in Heaven, but voices from earth could already be heard, and the child in a hurry asked softly

“Oh God, if I am about to leave now, please tell me my angel’s name.”

“Your angel’s name is of no importance, you will call your angel, ‘Mommy’ “

~author unknown

In response to The Daily Post’s writing prompt: “Dear Mom.”

 

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