How Being Chronically Ill During the Holidays has Taught Me About the Real Meaning to Christmas

I've been posting on facebook for the past couple of years everything that happened on that  certain day when I was in the hospital fighting a deadly spinal fluid staph infection in 2005. I never realized I would still be talking about it 14 years later. But that's when I realized all of the lessons that I learned during that 4 week stay. It's really true that the important lessons you learn in life stay with you always, and as I'm getting older I'm realizing that's true.

If we aren't friends on facebook, let me give you a little bit of background. I had a shunt revision in November of 2005. and I was in the hospital for 3 days, went home, got all my makeup work done, thought things were going great. But then on the 13th of FDecember,  I went from going to school, carrying a 15(let's face it it was probably more 20) lb backpack, to not  being able to stand up straight AT ALL. So my mom took me to the pediatrician. We were still newbies in the neurosurg world, we never thought that oh the shunt drains into the stomach, this is probably a shunt problem. Never crossed our minds, until we were in the ER at Evanston hospital. My mom had been keeping my surgeon's nurse updated, and my mom knew when she was talking to her on the phone and suddenly her demeanor changed, and she said in a somewhat chilling voice, please get her out of there and down here as fast as you can." After 3 hours of pleading with the doctors, I was in an ambulance headed for U of C. You may think that's where the action ends, but oh how wrong you are. When I got there, they were expecting me to have all of the traditional shunt infection symptoms, but I didn't. No elevated white count, no fever, just a stomach ache that wouldn't quit. So they couldn't take me to surgery for no reason. And they didn't want to test my fluid because that could be potentially introducing more infection. And so I'll never forget my doctors words, he said, "well then we will just wait, because if this is an infection, it will make itself known within a couple days of absolutely 0 antibiotics. He was right. 3 days later, screaming and almost going into sepsis, I was rushed to the OR, to get my shunt externalized.

I was then put into the PICU and was put on bed rest. Other than my once daily walk. This probably brings us to about the 17th of December. I was thinking a lot, because there was not much to do when you were on 24 hours a day bed rest, with 1 daily walk. But it was during that once daily walk that my eyes were truly opened. I saw all these rooms with children in them but no adults, and I had my mom with me 24/7; I asked my mom where their parents were, and she said that a lot of them had to work, or maybe they were single parents, etc. That's when I said well we have to pray for them, so they can go home soon and be with their parents soon!

My mom I think knew I would be in the hospital for Christmas, but she chose not to tell me because she knew it would mean breaking to me that I would also be missing my trip to Disneyworld. But I think in my heart I knew. I would indirectly ask my nurses questions that translated into how long will I be here. But when my mom brought in my American Girl doll Christmas Tree, and a bunch of ornaments from  home to decorate my IV pole my heart more or less sank. But I will never forget what my mom said, she looked me in the eyes and said, "this will be the best Christmas of your entire life." Looking back on it I know 100% I probably rolled my eyes, but in hindsight it was the best Christmas of my entire life. As you get older, you realize Christmas is less about what you will be getting, and more about who you are spending it with. My family was with me, no I wasn't home, but I was in a place where I would get better, with all the best minds I could find on my case.

So fast forward to 14 years later. How have my holidays changed? My holidays for the past 13 years have been spent at home which I'm so grateful for. But that doesn't mean by any stretch of the imagination that I forgot what happened in room 428-C in 2005. I have learned that the real magic to Christmas, isn't what's under the tree Christmas morning, it's who's around you, every other day of the year. I have also learned that health isn't an automatic, but a gift to be cherished. I'll never be considered healthy again, so now my view of health has changed, I've redefined what health is, because that's what you have to do when you're chronic. Merry Christmas everybody. And always remember the kids in Comer on December 25. I know I will. Because I was one of them.

To the Girl Who Was Just Diagnosed with A Chronic Illness I Say this: Life is Still Beautiful

Originally I got this idea to write this, after reading something else, then it turned into a project for a friend, which made her so happy, and then I decided to send it to the Mighty, and then knowing I probably wouldn't hear anything for a little while, I got impatient, and decided to publish it on my blog. So enjoy, and to the girl this was written for: I will always be here..<3 font="">

Dear You,

                I know your feelings. You feel as though you’ve stepped into a world of unknowns, and unfinished sentences. You may feel all alone but know this: You are thought of often, by people you thought didn’t even notice you. You will be thought of when you go for your first test, a CT scan. You will be thought of when your heart is racing as you watch the film go round and round. You will be thought of when your head is in your hands, wondering how did I end up here? There are no words that I can say that will make you feel better at this point, nothing I can do that will make you feel at ease about your diagnosis. All you can see are stats and percentages that make it look like this will be an uphill battle. And it will be. But I’m here to tell you that you can win this battle, and have fun doing it.

                Your fears were once my fears, and my accomplishments can soon be yours. You don’t know it now, nor will you know it tomorrow, but you will feel whole again. That half a person you see in the mirror will find her other half.  At this point living until tomorrow becomes your only goal each and every day. Like your doctor says, you have to keep yourself alive and healthy enough until modern medicine catches up to you. The guilt that you feel is going to swallow you up, will gradually become lighter, as you accomplish things doctors never thought you would, and as you gain understanding about how the preceding events happened and why. Your numb walk through life, I’ve walked your path. I’ve felt your numbness, that numbness that has made you so cold, because you don’t want to be hurt again, don’t want your life ripped apart again by one more diagnosis, I can still feel it at times. Hearing the words, you have X illness, and medicine hasn’t caught up to you yet, can be earth shattering. But you will learn to make lemonade out of lemons. You must. But know this: your world, no matter how small it feels like it’s just gotten, how blurry your future seems even though before it was in perfect focus: Is beautiful.

                You will know your world is beautiful when your doctor is amazed by your recovery from a 30 days hospitalization that only took two days at home.

                You will know your world is beautiful when you see the smiles on kids’ faces in the hospital when you do a toy drive for them for Christmas.

                Your world will get infinitely bigger when you realize the power of forgiveness, and you will learn the true meaning of humility, when you have to forgive the man who almost took your life, but at the same time saved it.

               

I know you’re scared. Every statistic you read makes you more afraid of the unknown than you ever thought possible. 50% of shunts don’t last more than 2 years. Sometimes in order to face the fear you have to “go there”. You have to let yourself be afraid to realize that you have the strength to make it through. And sometimes knowing you have the strength to get through whatever it is; is all you need. You don’t need to go through the experience, but just knowing you will be able to get through it, should it ever happen, can allow you to feel like you at least have a little bit of control over your life, even when everything seems just one tiptoe too far. I know the burden of carrying a chronic illness sometimes feels unbearable. And the uncertainties make you feel like there’s no end to all of this effort you’re seemingly putting forth.

                I know that at your dr’s appointment where you got this heartbreaking diagnosis, suddenly that small hospital room feels even smaller, suddenly the temperature in that room went up 20 degrees. You feel like the entire world can hear your heartbeat, when in reality it’s just you. You feel like as you walk through this illness, you’re always going to feel this alone, always going to feel like no one gets it except you. You’ve heard the words snowflake illness so many times in that one appointment, that you are unsure of what the words even mean at this point. But I’m here to tell you it will get better.

                Words can’t help you right now. No number of hugs can help you right now. And God knows more facts definitely will NOT help. But remember this, as the clouds start to scatter and you can see the sun peeking through, Life doesn’t end with diagnosis. A new life is just beginning, and you will learn to live with your new life, you will learn how to take the broken pieces of your old life and meld them into your new life, and while for now you’re making them fit together with tons of tape and Band-Aids, soon you won’t need them. Soon your life will heal, and you will have a scar, but that scar will represent what tried to beat you but failed. This new life is hard, insanely emotional, lots of ups and downs, but nevertheless beautiful, unique, emotional, and definitely a crazy life. You only get one. So enjoy it.

Love,

Experience

13 Years "post op"; and Some Good News!

I've been thinking about how I'm going to write this for literally MONTHS, because you have all heard what happened, probably multiple times before, so it feels very monotonous writing this every year, even though the general feel and point of each post is different (at least I think). I'm guessing after reading last years entry, which I was quite proud of no lie, some of you (or maybe none I don’t know) are wondering if I actually sent that to him. And to be honest(man I use that word a lot in my blogs lol), I wasn't going to send it, but then I thought, why did I write it if I wasn't going to send it? I thought I had an answer to that question, but as I thought it through they were just excuses. So I swallowed hard and sent it. I thought about it every once and a while; just oh I wonder if he got it? and I hope he's not mad at me, because when I say I never talked with him, I seriously mean, I NEVER talked with him, ESPECIALLY not about my feelings on what happened during this particular hospitalization. I would literally give him one word answers to all of his questions, or yes or no shakes of my head, and the only reason I can think of was because most of the time I saw him during those 2-4 years, I was SO SICK, that I just wanted him to help me. He knew why I was there so I almost didn’t really have to say anything. But ironically, I never really realized I didn't really say anything to him, until my mom told me.

One night about 2 months ago, I was just playing candy crush on my phone (I cannot believe how invested I am in that game, it's so sad lol), and  looked at my email icon on my phone, that had about 30,000 unread emails, (no joke, however the majority of them are from fb and I don't have the energy to go through them all), and I went into my email and just glanced at all the 450 unread emails that were before me on that particular account, and I just slid my finger up and down the page, and then something caught my eye. It was my previous doctor's name. At first, I looked at it sort of confused. Ironically, it was not my first instinct to think of the letter I had sent him almost a year before and it definitely was not an email I would immediately rush to open either. But then when I realized it, and put the pieces together, I was so excited,  my heart racing, every thought I've ever thought in my entire life going through my head. I can't really explain it.  I was terrified to read it, but so excited at the same time. I swallowed hard, opened it and began reading.

I sort of glanced over the entirety of the letter first, just preparing myself for how long or short it would be. I can't really tell you what I thought it would say, because I literally had NO CLUE how he would respond.. So I know your next question would most probably be, "Then what were you afraid of?" and I can't answer that either, all that was running through my head at that point, was your letter was very direct, so be prepared for him to feel bad.  I'm the sort of person, who psychs herself out about ANYTHING AND EVERYTHING. I used to think I would prepare for the worst, and then hopefully if it didn't happen, I could be happy about it. The way the past has gone, it has just been easier if the end result was going to be bad. But he told me he was glad I wrote my letter the way I did because very rarely is he able to see the view of a child, recollected in adulthood, especially when things don't go as planned and I thought to myself, Gee is that what I did? Yeah I guess so. He also said that he too wished that the night of the stroke had a different outcome. He also said, he wished we were able to talk about things, but that this letter communicated what was most important. Because of the fact that I had always been so quiet he had always wondered, whether I had feelings about my general health and the goings on of the years he was my doctor. After I read the fact that he was happy I wrote the letter, it was like I could finally breathe, in my mind that meant he wasn't upset by it, and in fact he was very receptive of the letter as a whole.

Compared to my letter,  his was short and sweet. Just like the way he's always been. He said the letter showed him what a kind, quietly thoughtful, articulate adult I have become. I was so happy when I read that. And I guess that's true, at least for a guy who never really heard me say anything. It was in that moment, I realized I was never "mad at him." and I told him that in the letter, I was just so confused that I looked for someone to blame and he was the easiest person to blame, unfortunately, to take responsibility for what happened, he was the attending at that surgery, so everyone assisting in that surgery had to do what he told them to do, did he tell them to do something that gave me a stroke? I don't think I will ever have that answer. I was just so confused and lost for such a long time, that I thought blaming someone would make me feel better. But I was realizing over time that not only did it not make me feel any better, that it also just made me more confused, because I didn't then nor do I now have all the information from that night, and I probably will never have all the information, so I had to make a choice.  I was tired of looking for someone to blame. I was tired of taking the "scapegoat way out of things by blaming someone, when in reality it probably wasn't his fault at all and I was realizing that blaming someone didn't erase the fact that it happened.

So how am I doing today? I'm doing great! Well comparatively. I will always have chronic pain, and a some degree of hemi-paresis, and I've accepted that, it's my life and I have to make things happen or else nothing will happen. and I know that for the most part, things aren't going to get better or easier, and so if I do nothing, I won't accomplish anything. So it would be better, if I learned to do things with chronic pain, because chronic pain is just that, it's unpredictable, and it's chronic, so I have absolutely no clue how long it will  last or how I will feel in ten minutes. I could feel exactly the same, or I could be 100x worse, or 100x better. You just never know, and so I've learned to have some degree of flexibility with chronic pain.

I am going to put the link to my letter to him at the bottom of this, because there's bound to be one person who reads this who hasn't read the letter I sent to him and this entry is going to sound a little strange if you have absolutely zero clue as to what I'm talking about. So in finishing this, I'm glad I sent it to him. I'm glad he's  happy. I'm glad he's doing what he loves in a place he loves. If he's happy, I'm happy for him. That's what you do for friends right? It's really weird calling him one of my friends now, but he's not my doctor anymore, he's my friend. And if you read this, You will always be my favorite cowboy boot wearing, Elvis lookalike. And thank you. I know I will never be able to say that enough, but thank you for everything you did for me, after that night, because that was where I saw your true colors. You took my story everywhere you went, trying to get the best minds in the world on my case. You may have felt like you needed to prove something to me but you never did. That was just an added bonus.

http://blessingsinhydro.blogspot.com/2018/04/i-forgive-you.html

A Letter To Myself 15 years ago

I did one of these three years ago. But since I just turned 30 and that seems like a huge deal to me I thought I would write another one and sort of compare them, to see if I truly have grown or whether or not that was just a lie that my parents told me for years; that with age comes wisdom.

 Dear 15 year old Kimi,
                  It's your sophomore year of high school. This means you will be able to get your licence in just a few months! But you have no idea what this year will bring you. In a mere few months the idea of getting a licence is tossed aside, and your only focus becomes living. In terms of life, loss and every step in between. You've been trying to become your own person this year, trying to step out of the shadow of your extroverted big sister, but nevertheless getting asked whenever you say your last name is Sorensen, Oh are you Christina's sister?" But you will be asked many questions throughout the next few years, and I hate to break it to you, but none of them have very uplifting answers. But you will stand despite all the hardship you face. Because living becomes your only goal, and you will learn the true meaning of the word. You will realize that it doesn't simply mean breathing; that it doesn't simply mean the monotonous day to day everyone complains about. Over the next 15 years, you will spend more days in the hospital than at home. You will have to relearn things you never thought about, such as talking, walking, and writing your name. But you will wear every hardship you encounter as a chain of diamonds. You will just add to them with each experience you encounter.  Every scar another story.

                 This may sound strange, but relish in the horrible times. Because it's during these horrible things that happen to you---they will force you to see how good you had it. You will miss out on a lot, but don't worry, you will make up for it. The toll that the next 15 years will take on your entire family is immeasurable. Whenever your mom says, "yeah but you were sick", as almost an excuse, again and again, in measuring how sick you were before, you will wonder, will I ever not be sick? You've stepped into unknown territory. Territory with fire around it, but a pot of gold in the center, and you will spend the rest of your life chasing that pot of gold while trying not to be burned in the process.  Yes the fire leaves its scars; but somehow you learn to live with the pain that the fire brings to your life. You will learn how to hide the pain from nearly everybody. But in the midst of the fire around you, you lose yourself, find yourself, again, recreate yourself, and learn some pretty amazing lessons in the meantime. You will do things you never would have done had you not gotten sick. Such as having a toy drive for the child life department at Comer, because you want other kids to feel that joy you felt, at Christmas 2005, when you opened your eyes in the morning and there were presents all over your bed. You were always curious about how celebrities felt, and you will get a tiny taste of this yourself, when your Thank you party for the nurses is heard about by the University of Chicago press, and your story is  featured in their paper, however even the good things in life come with a cost. Your hard times, will continue to be a bit of a precursor to everything you do in life. People will always say, "Oh if I was sick, XXX, oh  my gosh I can't believe how she does it. All while you're just wanting to be treated like a normal young adult.

                 You help people in your own small way, and the words of hundreds of friends, help you even more. I know carrying the burden of chronic pain, as well as the uncertainty of your illness, seems impossible at times, but if you look to the people who are around you, you will gain strength from them, and you will realize you have to keep going. You have to keep doing what Dr. Curry said, and staying alive so that technology can catch up to you.  Just remember Kimi, don't take life to seriously, slow down, that's what your illness forced you to do, remember? It caused you to look at your life like it could be taken away at any point. You just celebrated your 30th birthday three days ago, something that 13 years ago, Dr. Curry was unsure if you would ever see. And yes, you've made the most of every additional day you have gotten. But just do me a favor. Don't stop.

Love Always,
Birdie