Today I am reminded that I am lucky. Even though I was born with cerebral palsy with the exception of my orthopedic surgeries I have only been hospitalized for “normal” things, pneumonia, strep throat, the flu. My immune system isn’t exceptionally weak, in fact, I am almost never sick and I have never even come close to organ failure, thank goodness. My cerebral palsy did not come with a long list of other diagnoses, things to complicate and maybe shorten my life. So most days I forget that my CP reality isn’t everyone’s. Then someone who also has CP dies and just how lucky I really am shows up in the stark black-and-white newsprint of the obituary column.I often tell people that just because I have cerebral palsy doesn’t mean I know everyone with cerebral palsy in the state. I don’t know everyone but I do know a lot of people from my age group. I didn’t know Kimmy Jones as well as I might have even though we went to the same college and summer camp but I do know that she made a lot of people smile and laugh and as far as I know never did anything but inflate and enhance the lives of others. That is the best any of us can hope to be remembered for when we die.You will be missed, Kimmy.
This summer will be the filth summer since she was diagnosed with breast cancer. My sister calls that year our family’s Year of Hell for good reason. She was diagnosed in June and during her first week home after her mastectomy in September my dad had a heart attack from the stress of worrying about her.Thankfully it wasn’t fatal but as a result both of them were out of work for a while. My mother’s hair fell out from the chemotherapy and because of this we rewrote the Fuzzy Wuzzy rhyme. Our version is Fuzzy Wuzzy was a bear/ Fuzzy Wuzzy had no hair/ Fuzzy was a chemo bear. While doing chemo she got shingles. Yes shingles on top of chemo is as awful as you think. But this summer marks my moms filth year year with no cancer cells present. For those of you unfamiliar with cancer treatment , after the initial course of treatment is done a cancer patient must see an oncologist at least once a year for next five years to make sure the cancer hasn’t returned. It is only after five years of negative tests that a person can be officially declared cancer free When it becomes official in June I plan on getting a tattoo of military combat boots with breast cancer pink laces with her initials and the official cancer free date and the words free at last underneath since my mama was a soldier through most of my elementary school years In fatigues or out she the world’s most hardcore mama
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,
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.
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.
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.
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.