So the closing of the year is upon us. Christmas has come and gone once again. This year has had its share of tears for many people, myself included. Occasionally you run into divider moments, events which lead to a person thereafter marking time as life “before” a particular event and “after” it. For me it has been one of those years. Life will never be quite the same again. Fortunately this year has brought with it happy changes to balance the sad ones.I’m still not quite certain why my life decided to take a 360 turn from where it was to wear it is but I’m glad it did. Our relationship model doesn’t make sense to most people and it doesn’t have to. Within the last year I have grown so much as a person that I almost don’t recognize my previous self. It may sound cliched but it’s true. I have a wonderful man and woman in my life and would not trade the for the world. Looking forward to a new year I hope everybody laughs more than they cry and makes an effort to take the time to pay it forward when good fortune comes their way.
I haven’t felt much like writing lately and if you follow the US news I bet you have a pretty good guess as to why. I remember the Columbine high school shooting coverage on TV. I was actually in college when Virginia Tech happened. Neither of those, horrible and bloody and pointless as they were affected me like this. If someone were to take a picture of my brain they would see a small black spot about the size of an adult thumbnail that part of my brain is dead. I feel as though I must have a corresponding place in my heart knowing that someone is capable of taking an Uzi and killing 20 elementary school children. There is something wrong with the world when that happens. I think that for the most part our money would be better spent improving mental health services for those who need them. Stricter gun-control policy will not completely solve the problem as one person I know we posted on Facebook Timothy McVeigh did not a gun at all, he used fertilizer.
As if the tragedy of Sandy Hook elementary school wasn’t bad enough members of Westboro Baptist Church intend to picket the victims funerals. These people are not a church, they are a cult. Their sole intention is to foster hate, fear, and bigotry. They twist and mutilate the writings of a faith which was meant to foster tolerance and understanding. Even though I am not a Christian the fact that these people say that there poison message is condoned by Christ makes me sick.
These people may not make explosives like the Muslim extremist we hear so often about but in my mind they are just as much a terrorist group and just as dangerous. There is a petition asking the President to legally recognize them as a hate group, I signed it and the link to the website it’s on can be found here. You must create an account on the site to sign any petition but it is free and you can decide not to receive any e-mails from the site if you wish to reduce spam. Once on the site if you type “Westboro Baptist Church” into their search engine you will find the petition.
I’m sorry does not even begin to cut it. I don’t know what it’s like to lose a child I pray it is a pain I never fully comprehend. What I c aan say to those families in Connecticut is that my heart hurts because your hearts are hurting.
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.
I did grow up believing in Santa Claus after a fashion. My sister and I had pictures taken with him at the mall several times. However, by the time I was 10 I was almost certain that it was dad who ate the milk and cookies because they were often replaced with this special edition Oreo Christmas tins which coincidentally were sold at the grocery store dad worked for at the time. My parents have always stressed that giving of yourself, whether it be through a thoughtful gift or a caring action is the most important thing about the holidays.
I remember one Christmas when a neighbor across the street from us got burglarized the night after they had finished all of their shopping. The burglar took all of the presents, every last one of them. With less than a week before Christmas and all of their gift budget gone there wasn’t time or money to replace anything. Their four-year-old son would not have Christmas presents that year.
Unbeknownst to our friend my dad started to make phone calls and several mutual friends of ours stepped up in an effort to thwart the Grinch. The day before Christmas Eve our neighbor called. Someone had broken into their house but this time had left stuff… Wrapped presents of all things! Dad hung up the phone with a suspiciously satisfied smile.
When I was old enough to realize the truth about Santa and saving the Greens Christmas that year I wasn’t upset. I didn’t feel cheated, wronged, or lied to. I grew up knowing the historical background and so it was obvious to me that St. Nicholas had died a long time before I was born and when I pointed out this logic to my friends they told me something I will never forget. This spirit of Santa Claus has been around far longer than St. Nicholas or even Christianity. Santa Claus is the visual representation of the spirit of giving. More accurately, the spirit of giving without expectation, for no other reason than to be kind and thoughtful. I know what I will do my children if and when they ask about Santa. A gift does not have to be a physical material they and Christmas is not only for December. Anything that is given to or done for another person with a glad heart is a gift given in the spirit of Santa Claus and because you can choose to give such a gift at any time of the year every day had the potential to be Christmas for someone.
The woman I’m with is the jewel of my life, We have been through hell and back and then all over again. I have been a really ssucky girlfriend and a rough excuse for a friend at times. I deserve her in my life about as much as much I deserve to win the lottery which is to say not much in my opinion. She is a beautiful, amazing, who I will strive to show how much I care.
I can be a very cynical person. A certain percentage of able-bodied people expect those with disabilities to have a Pollyanna attitude all the time. Pollyanna has not lived in my house on a regular basis since about the fifth grade ask my mother if you don’t believe me. Where the able-bodied community got the idea that we are perfect angels all the time I have no clue. Personally I have been known to swear and drink alcohol on occasion. Yes I am perfectly capable of sex you can ask either one of the two people standing behind me. Yes I realize that there is both a man and woman standing behind me and I’m so glad you’re smart enough to know the difference between the two. Not all disabled people choose to date others with disabilities even though you obviously think we should. Do you also think interracial marriages should still be illegal?
Why do you think it necessary to speak extra slowly to me? I promise you there is nothing wrong with my hearing or comprehension though I am beginning to wonder about yours. Please do not hurry your children away from me when they have a question. I am not a leper and treating me as such it is very hurtful. I have no intention of harming your child and they cannot catch my disorder I promise. The only thing that will result from there talking to me is a smile, an age-appropriate answer to the question, and permission to pet my Golden Retriever sidekick if they wish, nothing more.
If you see me in a store, restaurant etc. I would appreciate it if you would not address questions about me to whoever happens to be with me. Rest assured I am perfectly capable of understanding English. I am also perfectly capable of answering for myself. I realize that some people in wheelchairs often cannot do one or the other but it is impolite and presumptuous to assume. Please be advised that such an assumption is likely to elicit a smart ass, sarcastic, and/ or just plain rude response from me.
To parents shopping with children: I realize my service dog has more charm than should be legal. I also realized that he and children attract each other like magnets. Most of the time I do not mind stopping and chatting with you and your kids about him, it really does brighten my day. I do however request that you not let your children touch him without asking my permission first. He doesn’t bite and children on his favorite things in the world but I view the area that he occupies beside me as an extension of my personal space bubble and would greatly appreciate you and your children asking permission before entering it. I thank you for your consideration and politeness and taking the time to read this.
I got my first Christmas card yesterday. I rarely get snail mail and when it isn’t related to my disability it is usually from one of a list of people I can count on one hand. It was from Oz (the only person in my family who calls him John is my grandma which I find mildly confusing because both my Uncle and Great Uncle, her oldest son and her brother are John also,) and it is beautiful. It is now taped on my wall above my computer.
Inside the card was a photo of his three year son, the kind that you put in a nice frame and sit on your desk. I don’t have a frame to fit it yet but you can bet I’ll get one, because I wouldn’t dream of doing anything else. I have referred to my myself as a step parent or step mom before but this somehow makes it even more Blood or not I love our boy dearly and that is all that matters.