Stuart Dude, I'm Just A Giraffe

Growing up -and up- on the autism spectrum with Marfan syndrome
1. Auflage 2022
ISBN: 978-1-6678-3140-4
Verlag: BookBaby
Format: EPUB
Kopierschutz: PC/MAC/eReader/Tablet/DL/kein Kopierschutz

E-Book, Englisch, 136 Seiten

Hello, my name is Chris Stuart, and thanks to my wonderful partners from The Marfan Foundation, here are my memoirs about growing up-and up-on the autism spectrum with Marfan syndrome. From being born in Florida, through my childhood in New York, to growing into adulthood in Arizona, all is revealed!

Autoren/Hrsg.

Stuart, Chris

Leseproben

CHAPTER ONE: MARFAN HAPPENS Let us start this thing from the very beginning. Once, there was an eternal void—an actual void. Not a vacuum, a void; nothing, no existence. Then, there was light, matter, and expansion. Plasma becomes space, becomes stars, becomes planets, becomes water, and becomes single celled life, and then. millions of years of evolution! This resulted in humans; Mom and Dad meet and then—I was the result. Obviously, the whole point of all this is that I am the ultimate end point of fourteen billion years of existence. I mean, of course I am! Why else do you think this all happened? If you have not figured it out by now, my writing style is a bit flippant, and perhaps attributed to my ADHD and combined with my own creativity! Either way, I have evolved into this type of a writer. To be honest, I love it. In other words, I go with the flow in writing as I do with my life. So yes, my birth happened. I decided to start here because, well, I started here. This is when I got Marfan syndrome and autism. In the case of my autism, it may be genetic. I also have a bit of a yarn to spin for you about my birth. This was conveyed to me by my mother after the fact and not from memory for obvious reasons, and I believe it will adequately establish pertinent details about myself and my coping mechanisms. So, on the ninth day of January 1990 AD (or CE), I was born in a hospital in the Floridian city of Clearwater. I did not stay in Florida long and, therefore, I will not be mentioning Florida a great deal or much at all really. I was about two-and-a-half when I moved to New York City. I did not get my official Marfan diagnosis until I was six; however, my mother had deep suspicions that I had this earlier. She moved back to New York with me to be closer to specialists. Therefore, I feel comfortable starting here; it was not long after this pivotal point in my history of the universe that Marfan started affecting my life. According to my mom, instead of crying right out of the birth canal like any sane baby would, I apparently came out as silent as a lamb. I then looked side to side and further surveyed the room with dawning horror upon my infant face. Unlike all the other babies, I had to be sure that I was indeed totally and thoroughly up a particular creek before I made my complaint to the universe for putting me in this crummy situation soon to unfold. Once I had confirmed that I did indeed exist and that, yes, it was indeed all downhill from here, only then did I act like a normal baby and complain to the manager of this and every establishment to follow. As this is not a full-on autobiography, I am limiting my beginning existence to my experiences growing up and living with and, most importantly, coping with Marfan syndrome. Besides, there really isn’t much in the way of stories I know about my life between my birth and my tentative diagnoses, and I have little desire to intrude into whatever marital issues that led to my biological parents’ divorce. However, I do have an older half-sister and she had her own thoughts of seeing my struggle as I continued to grow: Something that is deeply engrained in me is that family is number one. Chris and I only lived together for just over two years. Yet from the day I laid eyes on him, when he was in the hospital as a newborn, I instantly felt a connection. It was my first time being a sister. I did not know how it was going to develop as we have an 11 year age gap and we lived in different states most of our lives. But throughout the years, I have felt an undying love and loyalty to always be there for him. As for his health conditions, it didn’t change any way I felt about him… The key thing for me as an older sister is that I want to help protect and make sure he is never in pain or if/when he needs help, I am there. It was not easy seeing him through several of the larger surgeries (two heart, one back and ankle). It was hard not being able to do anything to make the pain go away. I really look up to my brother and how he handled every procedure with little to no complaints. I remember after one heart surgery, they offered him some major pain killers and all he wanted was Advil. He is a champ. I really look up to Chris (literally and figuratively). I would not want any other brother any other way! (Maren Stuart) I must agree with Maren, family is everything. She has been there for me right from the beginning. I was about two-and-a-half when my mom took me to the Yale New Haven Center, for what I do not really know. Mom does not really recall the exact reason either, as it was about three decades ago. However, it was probably for a general “check to see if your new infant is healthy and doesn’t have some terminal illness” checkup. After all, I was properly diagnosed with high functioning autism at this point, so we were there for more than just cardiology. While there, a Doctor Linda (as I shall refer to her) told my mom that she was probably right about my having Marfan syndrome. You see, my mom was something of a fan of President Lincoln, and knew he had Marfan syndrome or at least was suspected to have had the condition. So, let us have my mom explain: Oh well, when you were born, I noticed how long your fingers and toes were! Of course, back then I just said you were going to be a pianist or basketball player or something like that. Then, when you were somewhere around two, I think, yes, two, I started noticing developmental things for your high functioning autism. So, I went to an expert about that; Dr. Linda Maze, and she’s the one who had said that not only are you a functioning autistic but you had Marfan syndrome. She suspected you had Marfan and, by that time, I kind of did too because you were taller than any of the other kids your age. I knew you just had it. Big Lincoln fan girl here and I happen to know about Abraham Lincoln having Marfan because as you know, I love Lincoln. I read an article in either Time or Newsweek that spoke about Marfan syndrome and that Abraham Lincoln may have had it. (Ann Reinking) And there you have it right from my mom, that I was informed that I looked just like what our dear dead forefather looked like while young, having some of the same physical features. Unfortunately, while very accomplished and highly respected from what I have heard, this doctor was not qualified enough to make a proper diagnosis. And so, we followed this up by going to another so-called expert. Details here are unfortunately a bit scarce, mostly because Mom said she forgot a lot about this man in disgust. She does not even remember the man’s name. After all, he, a supposed expert, said I did not in fact have Marfan syndrome. He was very confident and arrogant in this diagnosis as well. He knew that I did not have the condition. I will tell you right now that I have scars from all the surgeries that prove him wrong, but if Mom was more trusting in this situation with this man, there is a very good chance I would have died of an aneurysm at a very young age. Thank goodness my mom persisted, as she was not happy with the diagnosis and noticed other things were going on with me. At this point, her emotions were driving her to get a complete diagnosis: You are always glad to have a diagnosis even if you already know there is something not right, that you were different. She suspected, that is Dr. Maze suspected you had it by two-and-a-half. This was by the time you were getting other things, such as you had suddenly gone myopic, that is nearsighted. Do you remember how suddenly you could not see the chalkboard? ’Then your dentist said that you have a very high palate. Then I think it hit home when a bunch of symptoms popped up, just your general look, you were lanky, you were taller than anybody you know, and your wrist started taking on a shape that was very Marfan like. You certainly noticed it when you got the diagnosis how your hands sitting in your wrists were a little different from the rest and just the general construct of your body. When you were six, I asked your pediatrician where I should go to get a proper diagnosis because he felt that it was Marfan as well. He thought he heard a murmur or something in your heart, but I cannot quite remember. He gave us an answer and we went to Dr. Steinfeld located in Mt Sinai Hospital. There it was in black and white—on paper, no wiggle room anymore—and I could not say you are going to be a pianist. I could not say you are going to be a great basketball player and I was pretty sure by then, but now it was definite. So yes, I was sad in the beginning. You do not want your child to have any issues or challenges. However, I would never give up on you. Your doctor was the one who said—I think his name was also Christopher—we could get in with Dr. Hal Dietz in Baltimore as that would be the best place for you. This would be at Johns Hopkins, a hospital in Baltimore. Dietz and Steinfeld both saw that you had an enlargement in your ascending aorta, in the root, and so then we just would have a yearly checkup when you had your echocardiogram. (Ann Reinking) So, there I was, six years old when it happened. I was given this confirmation by Dr. Steinfeld at Mt. Sinai Hospital and I am sure I was informed. However, if I was, I do not really remember it that well. I really do not have any excuse this time for not remembering, as I was six, not two, and this was a significant event in my life. But then, there was a pretty good chance that I did not really...