You have no idea. Do NOT judge a book by its cover and for once maybe just take a few moments to try and understand.
This has been one of the hardest years of my life. The heartache I felt when I was told I could not go back to school left me empty and emotionless for weeks and months on end. I worked so hard in high school to graduate on time, get good grades and be accepted into a school like Wentworth. If you think being at home and doing nothing is what I want, think again. If you think I am being lazy, you are very much wrong.
Every day feels the same. I wake up with my migraine. I put my cooler of ice back in the freezer and get new ones until I feel comfortable enough to get out of bed. I take a shower and then lay back down because that exhausts me in itself. I rarely can keep down breakfast due to the medication I have to take every morning, so I find myself eating saltines. I go to yoga because I know its good for my health. I dance because it is good for my health. I socialize and sometimes make an appearance at parties because even that is important for my health, mentally and emotionally. Could you imagine letting go of a dream and completely putting it on hold? Unless you can completely relate, you have zero right to judge. Unless you see me suffer on a daily basis, keep your mouth shut until you understand.
Yes I dance. I teach dance too. It is a force to get myself there. Just recently I drove to dance with a heating pad on my stomach because my bladder inflammation was so bad. If I forget my ice, I am always happy to find a cold water bottle waiting for me in my car when I leave so I can put it on my throbbing head. I have tachycardia, meaning my heart rate is always through the roof. Sometimes it gets so high that I cannot dance. Other times I push myself too hard and nearly pass out. They say it’s bad to drink soda when you exercise, but when you more often than not feel like you are going to be sick ginger ale sounds a lot better than chugging water. So I choose between possibly getting sick, or being dehydrated. Other times after a long night of teaching and dancing myself, I come home and am so tired I cant even shower. I go straight to bed because I do not have a drop of energy left inside me. But I need dance in my life, and that’s really all there is to it. If you don’t get that, that’s really too bad; maybe ask yourself what you would do if you were sick, lonely, bored, and scared all the time. Would you sit at home and stare at a wall or would you try and keep busy? I think I know the answer.
People, makeup is a wonderful thing. I would kill to feel comfortable walking out of the house without makeup on, but truth is I look sick. My mom will tell me to put blush on because I look too pale, or to touch up my eyes because they look puffy from little sleep and being in so much pain. If I truly have no time or energy to put makeup on, I wear a baseball hat so I can feel somewhat hidden. Believe me, it is not a fun place to be.
I occasionally visit friends at college or go down town with some girl friends. When I have plans like these, I take the days before to take extra good care of myself so I can go out. Half the time I end up canceling, but when I do go out it isn’t easy. After a long day of pain, getting dressed up and looking nice takes a lot of effort and can be exhausting. On top of that, there’s the anxiety of wondering what if something happens to me? I will be honest. It really isn’t as easy as I make it look. You don’t know the tears I cried before I walked out the door, nor do you feel the pain I have felt the past seven years. The hardest place to visit is Boston and my roommates. When I see the city and school I fell in love with three years ago my heart breaks all over again; I want to be there with my amazing friends, I want to study interior design and architecture. And not only do I want to succeed but I want to live pain-free, succeeding and feeling well. That in itself is truly a dream. What if you couldn’t go to college? What if you were left at home when almost all your friends went back to school? I am pretty sure you wouldn’t be too happy either.
As the holidays come around again, I think to myself, "Wow has it been a long time." Most kids are thankful for their friends or family, which is great; I am beyond thankful for mine too. But what I am most thankful for at my young age is my life. There have been too many close calls and too many times the pain is so real that I am afraid I won’t wake up. My sister has slept in my bed with me in fear; my mom on the floor with tears in her eyes. I was fifteen when I first got sick. I am now 21 and don’t remember what a Christmas without pain or ice packs feels like. I don’t remember a New Years without the wish of being healthy and finding answers in the New Year. Every single time I watch that ball drop I think, this will be the year. Maybe; maybe not. For now, it is just a dream that I hope someday can become reality.
The worst thing you can do to someone who is chronically ill is make them feel like they have to prove to you that they are sick. This is not what we want. I am not happy. Quite honestly I am depressed, anxious, and suffer from severe PTSD. I recently gave in to living with fear and depression and have been put on medication. I am not ashamed. Next time you go to trash on someone who is chronically ill, ask them about the medicine regiments they take, ask them how many times they have had a fever the past week, ask them about the last time they slept in a family members bed because they were scared to sleep, ask them about the pain they are in on a daily basis, ask them how many doctors appointments they have this week compared to last, or even better how many times have they've recently been in the E.R. because their body is trying to give up on them once again. Or how about the fact I will need immune replacement for the rest of my life to have a chance at fighting anything? Even the common cold.
This is not a cry for help. This is not for attention. This is for the naive people that truly don’t open their eyes and take the time to understand. Many kids and young adults are out there with me, chronically ill and missing out on what should be the prime of their life. Precious time that they won't ever get back. Imagine if this were you because it easily could have been. I’m sure then maybe you would understand.
I truly hope this is an eye-opener to those of you who are judgmental; that maybe, just maybe, next time you will think before you speak. Do not go up to friends and family of someone who is chronically sick and make them feel like they need to explain. It affects and hurts them too. You don’t know how powerful one voice can be, so if you can say or do anything, why can’t you just be kind?
Until next time,