The following document is something that I got from a great friend. He gave the bare bones and I filled it in with information that I think is important. The information below is intensely personal and real. It was written over the course of 2.5 years and contains a lot of information that is not public knowledge; until now. Comments are always appreciated but please be gentle with my life. Please feel free to take components of this and make it your own. Parents reading this, consider creating something smaller and similar for your child. It can be as simple as your child's likes and dislikes. Whatever you think physicians, nurses, respiratory therapists, other therapists, etc need to know that isn't in a medical chart.
When you come into my hospital room, you need to know the facts of my life, that there is information not contained in my hospital chart. My chart is important, for my medical history, but is missing some extremely important information that you need to have, preferably before you come into my hospital room.
Here Is Some Of What You Need To Know:
I am a designer; I design websites, T-shirts, and produce videos
I am the president of an organization dedicated to sending blankets to others living with SMA from across the world
I love life, country music, my friends, butterflies, mismatched socks, my Kindle, comedies, helping others, talking, Italian food, and shoelaces
I have been a member of the online SMA Community since I was 12 years old and dedicate my free time to “my” kids (other individuals living with SMA)
I have limitless amount of memory and, if you take the time to get to know me, I will remember everything you say about yourself
My best friends are people just like me. We have a plethora of abilities and likes, we agree and disagree, and have humor to match our life experiences – ever changing and impossible to predict.
When You Come Into My Room, You Need To Know the Losses of My Life
No, I can’t walk but I can feel everything, hear everything, and see everything. My inability to walk does not correlate to my ability to think and feel. I’m almost 25, not 5, so talk to me like you would one of your friends or relatives, not a small child.
I lost my mother and sister at very young age. I like talking about them and their impact on my life.
Despite being hospitalized numerous times throughout my life, I don’t enjoy being in the hospital. It is a necessary “evil” in my life.
I am chronically ill, and am seeking a life that is not just tolerable but enjoyable. I seek a quality of life not necessarily a quantity of days. "I would rather have had 30 seconds of wonderful, than a lifetime of nothing special.”
Even though I'm almost 25, I sleep with at least 6 stuffed animals every night. I like to say they are for positioning purposes but they are also a great comfort in the hospital when I’m surrounded by unfamiliar objects and people.
When You Come Into My Room, You Need To Know My Body
I know my body. I know what is happening in my body and I can usually tell you what you want to know. I’m extremely aware of what is happening inside me. I know when something just isn’t right, even before it shows up in my blood or on an x-ray.
I’m a night owl. I usually stay up until at least midnight and would sleep until noon if allowed. I don’t generally wake up in the night unless I’m in pain.
I have a high tolerance for pain and don’t generally complain about the pain. This does not mean that I don’t experience pain, I just don’t express it.
I don’t like the vent being disconnected without warning. Warn me, even in the middle of the night, if you must disconnect me. Think about it; what if someone plugged your nose without warning you?
I take more than 10 medications every day. I know what they are supposed to look like and how much should be in each syringe. If it doesn’t look like my medication, I will question you.
I hate doctors who confer outside of my room; I worry that they are talking about me in a context they cannot talk about in my presence. I know more about myself than any doctor ever will so talk to me, about me. Nothing about me without me.
I live by medication, technology, and medical equipment. These things keep me alive. I need these things in order to live, not just a good life but a great life.
When You Come Into My Room, You Need To Know My Fears
I am emotional … a fully functioning feeling person. I reserve the right be angry, sad, frustrated, afraid, happy, apathetic, and any other array of emotions during a hospitalization.
I am petrified of the words “surgery” and "procedure”. I want as much information as possible before agreeing to either. I will question you about everything, so be prepared,
I once could not tell anyone I was awake, aware, and in pain because too much paralytic medication was given to me. I never wish to experience that again.
New, unexplained, symptoms scare me. Work with me to figure out what is going on. Do not blow off the “little” symptoms because for me they have a tendency to turn into the “big” things without fair warning.
I occasionally question life’s unfairness for others. I’m not one to question my purpose, very often, but I worry about everyone else. I have a large group of friends so when they hurt, I hurt.
I am not afraid of dying. Death is a part of my life and I am not afraid of it. Death comes for everyone, eventually, and I’m ready for it. This does not mean I want to die, anytime, in the near future but when my time comes, I will be ready.
When You Come Into My Room, You Need To Know My Mind & My Spirit
I believe. I believe in God, a higher power, whatever you want to call it. I believe with my whole heart and that cannot be taken away from me.
I have faith. I need you to have faith. When you come through my door, I need you to believe in my ability to heal and get healthy. Your positivity rubs off of me and if you are negative, it will affect me also. I’m not going to “be healed” of my SMA, this I know. I need you to believe in my ability to get over my infections or whatever reason I’m currently dealing with at the time.
I sometimes wonder if I would be who I am if not for my family and friends. I need them, more than ever, when I’m hospitalized. In person is the best because they heal my soul and keep my spirits up. I have a large, very tight knit, family. They need me as much as I need them. I am connected to so many individuals via the internet and rely on the people there to keep my spirits up, also. They, my friends and family, are better medicine than any amount of antibiotics or doctoring you can provide.
When You Come Into My Room, You Need To Sustain My Hope
I believe love wins over hate; hope over despair; life over death
I hope against all hope that I will be able to return to my life after each and every hospitalization. I need you to hope that for me.
I pray and believe prayer heals. I don’t need you to believe this in order for you to care for me but it doesn’t hurt if you do.
Some days I am able to make sense of the pain, both physical and emotional, that I experience with every hospitalization. Other days, I simply cannot. Support me during both. You cannot possibly imagine what I go through every day, even when healthy. Just be understanding during the bad days, as well as the good.
Always tell me the unvarnished truth. Things work much better for all parties if you can be honest with me. Support my hope that tomorrow there may be new medicines and new surgeries that will make my life, or the lives of future generations, better.
I ask that in this moment, you care deeply, for me and what I am dealing with currently. In this moment, you will do your best. You will listen to me and my concerns, in this moment. You will promise me a healing partnership, in which every opinion is heard, especially mine, on every subject matter impacting my health status.
Keep hope alive, even while being truthful. Hope is all I have to fight with. Plan on not giving up on me and in return, I won’t give up on your abilities to make me better, at least this time.
I don’t expect you to know everything about SMA or my life. I do, however, expect you to listen when I or my caregiver speak and respect our combined knowledge of me, my body, and my life.