Day 236: Owning My Life

My sister posted a YouTube link on to my Facebook today. After watching it I felt like the world’s biggest wimp and sellout. A disabled veteran of the first Gulf War who had been told that he would never walk again without forearm crutches due to damage sustained from jumping out of airplanes loses 140 pounds in 10 months and proves everybody wrong after 15 years of being overweight and alternating between using a manual wheelchair and crutches through the use of yoga. I watched him fall over and over again but eventually his balance got better and instead of walking with crutches and knee braces, he walked with a single pain and knee braces and then without the braces at all and then without the cane. Most of the video is indoors but the frames after those were shot in a part. The guy is walking, no crutches, canes, no braces in sight. He doesn’t fall, then jogging and then full out running, something he was told he would never do again.

 

Watching that video made me realize that I given up a whole lot just because I believed someone else had the right to limit my life when they thought I would never do something. No more. Today and tomorrow and the day after that I own my life.. The words can’t won’t and never don’t exist anymore, at least not within the context of things I want to accomplish. The video I saw can be found here.

Just because I can’t do it today, doesn’t man I’m not going to be able to do it someday,

Thank you.

Day 234: Average Ordinary Everyday Superhero: a Valentine’s Day Challenge For All

Blood Donation

Blood Donation (Photo credit: Rojina)

I became an organ donor a few weeks after my 18th birthday when I went to the DMV and got my first date ID. Even before that at around the age of 12 I informed my parents that if I were to die unexpectedly while still a minor I wanted them to donate my organs so that some other child might get the chance to live longer even as my life was cut short. I believe that things like organ donation and giving blood are important. There are 6 billion people on the planet give or take and I believe we have a responsibility to each other because no matter our social and cultural differences we all have one thing in common: we are all human. In my childhood and adolescence I spent a lot of time in and out of hospitals for surgeries and other medical procedures. I have looked my own mortality in the face several times in the course of my life and is an awesome and terrifying experience. I have been on the receiving end of transfusions and watched people die from leukemia. I didn’t understand that bone marrow transplants reduced used to treat leukemia at the time my friend had it. If I had I would have gladly been tested to see if a graft from me might have helped him. In this modern world fear is ever the enemy. Fear of sickness, fear of pain, fear of dying. There should not keep us from being the best versions of ourselves that we can be. I have a challenge for anybody here thinks that Valentine’s Day is nothing more than an over commercialized paltry excuse for a holiday. This Valentine’s Day get directions to your local branch of the Red Cross, give blood. It can and does save lives I am proof of that. Go to the DMV, check the organ donor box I guarantee you the fact that you exist now won’t matter to someone. (It is worth noting that you can list organs that you don’t want used if you know that some are damaged.) Giving of oneself is a kind of love and it is a love that you do not need a significant other to experience.

 

I used to think that my life, my presence in this universe was pretty pointless. The day I gave blood even though I threw up all over one of the nurses in the process, I felt like a superhero. As I left the DMV with my newly laminated ID with a little check mark on the back I felt heroic. Just your average, ordinary, everyday superhero and I bet if you look hard enough you’ll find you have one too.

Day 225: I Don’t Think So

Olga Spessiva in Swan Lake costume, 1934 / pho...

Olga Spessiva in Swan Lake costume, 1934 / photographer Sydney Fox Studio, 3rd Floor, 88 King St, Sydney (Photo credit: State Library of New South Wales collection)

When I was very small I pointed my my toes all the time. If I could have stood up at that age I would have been standing very close to “on point” like ballet dancers can. When I was four years old it was decided that I would have surgery to make my feet appear normal. After the surgery I could no longer pointing my toes at all and if anyone manipulated either of my feet into that position it was very painful. Because I now have completely flat feet standing is difficult because I lack the balance being able to point your toes can give you and I can’t manage transfers on my owns 99% of the time. For anybody unfamiliar with rehab therapy language a transfer refers to moving oneself or a person from a bad to a share, from a chair in the back etc.

 

I have asked several doctors over the intervening years if it was possible to do something that would at least give me some of the ability to point my toes back and therefore improve my balance. For the last 10 years I have always been answered with an unequivocal no. After I broke my legs several years ago I asked the orthopedic surgeon who repaired them the same question, expecting to get the same answer I always got. To my surprise he said he thought he could improve their function but requesting that I let him get my legs healed before having that discussion. It wasn’t until well after my legs were healed I discovered, upon calling his office to set up an appointment to talk about my feet and ankles, that my insurance usually does not cover his services and the only reason they had before was because he had been the sergeant on call at the hospital nearest to where I broke my legs.

 

I recently filed for an exception through what I guess is in simple terms would be the patient’s human resource department. It was denied on the basis that “they had equally qualified surgeons in their network.” It has been my experience that just because a group of people hold that particular diploma does not mean that everyone within that group is equally skilled. It is possible to pass courses with a C average and still get a diploma and any accompanying title but that does not make you the equal of the top student in the class and that is exactly what I told the person on the phone. I will go talk to the doctors but I fully expect to hear more of what I went I have always heard. If I am right I will then contact the doctor who fixed my legs and request that he contact me insurance directly and tell them that he is able and willing to at least mitigate the problem with my feet. I’m really hoping that will help.

 

Dealing with insurance companies frustrates me because I am pretty sure in most cases the person passing judgment on whether or not to pay for a particular treatment has not had to live with the condition or disorder the treatment is meant to help. Insurance companies would probably be a lot different if the person making decisions have to live with a restricting condition themselves

 

I have lived with Cerebral Palsy my entire life. I have been the recipient of outstanding care for medical professionals, horrible care that I wouldn’t wish on my worst enemy and everything in between. I know what I’m talking about. If I request a specific person is because I truly believe they are the best at what they do. I will not stand for substandard care or treatment of any kind. I will go see the three doctors that my insurance assures me are equally qualified and if one of them will agree to fix the damage inadvertently done to my feet I will let them. If not I will raise Cain with the insurance company until they pay for the doctor my choice to do the surgery he said he can, or until I move out of state, whichever comes first. I refuse to let any insurance company dictate my life and independence.

Day 204:Proof That You Don’t Have To Be An Adult To Make A Difference

Full wool Merino sheep.

Full wool Merino sheep. (Photo credit: Wikipedia)

Earlier this week I Googled the phrase “stuffed dog” just to see what came up in the results. Among the usual links to the toy sections of major department stores, Amazon, Ebay,, and the like, there was something unique. ShelterPups.com can custom make a plush dog using photos that you (as the person ordering) provide them with. So it’s not just a stuffed dog, it’s YOUR dog. The site is full of examples of their work, where a picture of the completed plush is side by side with a photograph of the actual dog and the resemblance are amazing. The best part is that the idea cane from a young girl who was saddened by a lack of mixed breed plush dogs. As I understand all money which is not put back into the business to keep it running goes to help care for shelter dogs by providing money for dog food and other basic care needs.

ShelterPups makes all of the dogs in America from super soft Merino sheep wool and for this I would not suggest tossing your buddy in a washing machine, the site has care instructions.. The cost of a dog is 125.00 USD but I personally believe it is well worth it considering the personalized nature of the dog and the cause the company supports.

They are currently swamped with holiday orders and working hard to clear the backlog. Right now there is waiting list to place an order but I thought I would blog about now anyway just in case somebody who reads here knows a dog person with a special occasion coming up after the holidays.

Day 185: Frankenstein isn’t so bad, scarring and a change of attitude

This is daredevil Evel Knievel photographed in...

This is daredevil Evel Knievel photographed in front of his house in Ft. Lauderdale, Florida, circa 197?, by Bill Wolf. He lived across the street from Lani Wolf, my oldest friend (our parents were friends and we “met” as infants). Now Lani lives in Oakland. She came across this while moving and sent it to me this week. (Photo credit: Wikipedia)

I realized something recently,, if you counted each individual stitch from every surgery I have had in my life as a separate score I would probably have somewhere over 300. That is not counting the small incidentals cars that you get from just being a kid. I used to hate my scar. I would wear long pants in the middle of August just so that the scars on my knees weren’t visible no matter what the temperature was outside. I think my mom became convinced I was a closet masochist. As I got older I conceded to high temperatures when necessary but still despised my scars. It wasn’t until college when a friend saw |the scar that follows most of my spine and reacted with “how did you get that bad ass scar and how do I get one” that my opinion of them really changed. I nearly fell off the counter I had been sat on in shock! I don’t deliberately go looking for situations that I might get scars from but ever since then my attitude towards the ones I currently have and any I might eventually get has change drastically, they have become something of a point of pride rather than shame. I no longer (for the most part) see myself as disfigured because of them. I can look at them and know that I have survived things that many people a lot older than me can’t fathom dealing with. Indeed, what doesn’t kill you makes you stronger. Do not mistake me, I am not trying to become Evil Knievel even though at times I have made that joke. Some of my “adventures” I have only managed to escape without a broken neck by sheer luck and there is not a day that passes in which I do not think the universe that I made it through relatively unscathed. I will not shrink from life no matter how rough and tumble it may become.

Day 87: Life, Death, and Disney… Who knows?

The famous "Heigh-Ho" sequence from ...

Image via Wikipedia

I periodically write blog post which mention my friend Anthony who died of leukemia when I was 10. I honestly don’t think my heart ever completely mended after he died. I know that it sounds odd to most people but at that point in my life he definitely  counted  as my best friend. Recently another good friend of mine who knows about Anthony mentioned that if he had survived cancer he would be the same age as my friend, which is to say in his early 40s. Well that got me to thinking about how our relationship might have turned out if he lived. I know the wondering is fruitless because Anthony is still dead and nothing will change that, but in this case I find a peace in contemplating what might have been, for some strange reason it makes his death easier to live with.

Day 77: Does the Tooth Fairy account for inflation?

Histologic slide of tooth erupting into the mo...

Image via Wikipedia

I lost my last baby tooth yesterday. You heard right… Yesterday. For the record I am 26 years old. I have the adult tooth that was supposed to replace it as well, instead of pushing baby tooth out it grew from the gum line above it. It will be interesting to see if it eventually moves into its proper position or if I’m going to have to go to a dentist to have it fixed right. I hope we can avoid the dentist trip because I am an absolute coward when it comes to dental work. I can make myself sit there was a massive effort of will, it also helps that I physically can’t run away screaming, if I could I suspect there would have been a couple times I would’ve had been dragged back into the building. Of course knowing my luck the tooth fairy isn’t doing much better than the rest of us in this recession.

Day 68: after anger management, or an epilogue to the short bus story

Nissan Paramedic.

Image via Wikipedia

There is an epilogue of  sorts to my tale of the short bus, fortunately not as sad as the original tale.  After I graduated from school my next-door neighbor and one of his friends decided to mix hunting with alcohol, never a bright choice.  We never got a clear answer as to what happened because neither of the guys would admit to being intoxicated because neither of them wanted jail time, but the gist of the matter was that somehow they both ended up shot in the foot.  This caused my driveway to become a parking lot of police cars and emergency medical vehicles for at least two hours.  One of the young men who had ridden the bus with me to school also lived down the street from me… imagine my surprise when15 minutes into the ordeal the aforementioned young man shows up at my door.  The ambulance and police cars had passed his house and his first thought was I was terribly sick or injured and so he took it upon himself to check on me.  I was so shocked that it had even occurred to him to check on me that I almost cried.  I went through most of high school believing that almost nobody cared if I existed or not. I suppose I got a wake-up call about how wrong I was.  I shouldn’t have been surprised, it was one of the anger management boys after all.

Day 67:The short bus story

Wheelchair lift being operated in the front do...

Image via Wikipedia

I attended public school for most of my compulsory education.  I also had the dubious fortune of riding what was commonly known as “the short bus.”  For those of you who may be unfamiliar with this piece of slang, the short bus is a mildly derogatory name for the bus that the special needs students use, it is most often shorter than a regular bus because they’re not as many seats in it because of the need to carry a wheelchair lift and provide space for a wheelchair itself.  If someone asks you if you rode the short bus this morning it is most likely because you just did something really dumb,a reference to the fact that many of the students who use the short bus are mentally disabled.  My short bus story isn’t funny and I wish with all my heart that it had never happened.  In the fall semester of my senior year I discovered that a friend of mine had died over the summer and not a one of my classmates had thought that I should know.I wasn’t shocked that my friend died, he had a congenital heart defect so I was kind of expecting it.  The thing that shocked me the most was that he didn’t die from his heart defect like we all expected, a semi truck ran him off the road in the rain killing him and his younger brother on the way home from their dads.A teacher that we’ve both had for a previous class told me the story.  I cried sporadically for the rest of the day.  Like a lot of schools mine had vending machines and at the end of the day I decided to get myself a Dr Pepper.  I think I would’ve actually preferred a shot of whiskey but considering I was underage at the time I took the best substitute I could find.  It was against the rules to bring soda on to the school bus but that day I couldn’t care less, fortunately for me my teacher’s aide informed the bus driver and her helper what had happened and so they never said a word about it.  However I was not lucky enough to have everyone keep their mouths shut.  There was one boy who got on my last nerve almost every day.  He had ADHD and used that as an excuse to annoy the daylights out of most everybody, think Dennis the Menace in middle school and on Ritalin.  He knew about the no soda rule and kept threatening to tell in this very annoying singsong voice.  I was doing my very best to ignore a, because considering my state of mind I wasn’t sure if I started hitting him I would quit.  Also on the bus were a couple of boys who had severe anger management issues and could be very scary if they wanted to be.  Next thing I know both of them had turned around and told the little past quite calmly and evenly to shut up and leave me alone they then turned to me and apologized for his behavior and also that my friend died.  I guess you can imagine that “Dennis” almost swallowed his tongue and left me alone for the rest of the trip.  I think I even laughed, but in spite of that I would still trade the whole experience to have Paul around.