I co-hosted a web seminar last week. Now wait, before you think I’m going to get all gushy and talk about how fabulous I am let me re-assure you that I’ve saved that for another time. So as I said I co-hosted a seminar all about coping with chronic illness during the holiday season. I paneled along side 3 other amazing women; a social worker, a very well educated doctor, and the president of a non-profit. During the panel a question was left from a woman asking how she should approach her teenaged child about the use of a wheelchair that would be needed most likely sooner than later. Naturally the question was directed to me as I happen to be a teenager that has spent quite some time in these 4 wheeled magical creations. Of course my reaction was to reassure her right away that it was nothing until I flashed back to the first stages of my diagnosis where it got to the point that a wheelchair was what I basically depended on to get anywhere out of my house. I remember how emotionally straining it was to have it pulled out of the car everyday as I placed myself in it looking like a completely normal human being. I remember the stares I would get as people would look at me from head to toe, some making a face and others just walking away. I guess things become normal and comfortable eventually but there’s no way I could sugar coat to this mother that everything would be just fine and that her child shouldn’t be hesitant at all. I think the hardest part of accepting your disability or limitations is not the actual limitations that come with it but rather the stigma that comes along side it. Sure being able to open a door by yourself is beyond frustrating and well asking for help makes it even more humiliating but I think it’s the negative attitude society has towards the disabled is just as worse, most of the time many times more difficult than the limitations. I use the term disabled extremely loosely because I feel as if in the society we live in today everyone has a disability; something that plagues them and restrains them from doing things, something that has a stigma towards it. Maybe it’s the fact that someone is an alcoholic, not to mention that alcoholism is a serious condition and isn’t just because someone really enjoys wine that in fact there is an underlying cause. Maybe it’s that someones gay, which in itself alone can cause numerous effects such as depression, social anxiety just to name a few. Maybe someone is of a different race, racism, prejudice, etc. You see there is something in common with all three of these things even though they are completely different; they all have stigmas and they shouldn’t. These different “things” handicap a person and tie a person down along side of their negative stigmas. So how do I console a mother who’s child is about to enter into a whole new atmosphere of stigmas, how do I tell her that nothing will change for her child. Well I guess I don’t because unfortunately there is no confidence to back up the words “your child will not be judged or viewed as different than others by those she is surrounded with’. I’ve had a wheelchair in my life for a little over a year now and it has been the absolute best and worst thing for me. It has given me the ability to function and participate in things I most likely wouldn’t have been able to do because of my current state at that time in my life. Along with all it has allowed me to do it has also taught me limitations, times in which I haven’t been able to do something others have because I’ve been dependent on 4 wheels to get me places, in those times I’ve had to face the limitation and find a way around it that would work or accept the fact that it wasn’t going to be a possibility for me in that point of time in my life. Along with all it has given and taken from me it has taught me self confidence. It has provided me with endless opportunities in which I was placed in uncomfortable situations and had to figure out how to make the most out of them. Sure most of the time I ended up crying later that evening when I went to fall asleep but I do believe that it has brought me up to be a more confident person in my struggles. I used to not look people in the eyes when in my wheelchair and it’s now to the point where I will make weird faces at anyone that stares at me. So to the mom that doesn’t know how to help her child that’s awaiting a new stigma in their life I hope your child learns that 4 wheels will never define their capabilities, and that given time it will probably only enhance them. Your handicap label goes beyond just you and I, in fact it fills this entire earth. You’re not the only one held back, you’re surrounded by a world of handicapped. As they always say “keep on rolling” my new friend, maybe even learn how to wheelie, it’s a lot more fun that way (trust me).
PS. – wheelchairs don’t have to be boring, they can be fashionable, mine’s electric blue.
I come from a generation that is often referred to as the ‘downfall of our society’. I come from a generation of stress induced disasters and not perfect enough mindsets. I come from a generation of ridiculously creative children that get covered up and masked by the conformity of others. I come from a generation of problem solvers that solve the problem with pills and alcohol because it is much easier to cover up the problem than address it.
But maybe we are better off if we address the problems. I came across a young girls instagram page the other day that said “fix cancer” at the bottom of it.
I was confused it sounded so funny but why? I looked at it for a few minutes and realized it was because it didn’t say “cure cancer”.
Maybe the little girl didn’t quite understand the word cure and thought fix was the appropriate word to use. Maybe the little girl had a family member with cancer and for some reason she decided not to use the word cure because it didn’t seem to be the right fit.
When you are little you are taught small simple tasks first and gradually learn more as your brain develops, you go to school where you are educated and it is there that you are prepared to be shipped off into the real world but somewhere something went wrong with my generation. Maybe it was the expectations, we were told we had to live up to someone else’s standards. Maybe it was because our dreams were thrown away at an early age and we were forced to conform and become something else. Or maybe it’s what many of those older would like to blame for it: the internet.
I’ve learned as many others that the internet can be the absolute worst and best part of my generation. We are able to quickly communicate with all those around us wether it be ideas, or useless words.
This little girl had it all right though, in so many ways. Instead of her best friends listed with emojis she hopes to fix something and maybe her goals aren’t as high as to cure it but she’s started somewhere and she’s come to understand something that goes beyond the materialistic. Maybe she doesn’t even know what to do to help fix this problem but she has a motivation and that’s so much more than a knocked down dream.
Our generation doesn’t tend to see beyond the materialistic we settle for less and stress over the tiny in the big picture. We hide our voice and fit in with the in crowd because why put ourself through what it’s like to stand out.
I look up to the little girls that want to fix the hurt in the world. I hope with all of my heart you don’t let yourself get swallowed up in my generation. Let your wings lift you up and run with all of your freedom sweet girl, there’s so much more to life beyond the bottle. Don’t let anyone tell you that your dreams are silly, you will never be good enough, you’re too fat, you’re ugly, you aren’t smart enough. Drive comes from determination of being told no and I wish more of us had figured that out. If all the negativity was put towards something good this generation would be one beautiful creation.
I sit in a bathroom stall and as I wet toiled paper and put it on the back of my neck to cool me down. The music plays and tears start to run down my face because I know I’m having to miss out on something because of my body. Maybe it was a bad decision because I had 2 donuts today but I’m just a teenager and 2 donuts should be able to be okay. I know to some it’s silly and this should just be brushed off my shoulder but as I wince in pain it becomes so frustrating to know that it causes others to worry about you and that plans can be ruined because of something that in most times is out of your control. You swallow 2 pills in hopes it goes away as you run to nearest bathroom around. Maybe it’s just a phase you think to yourself and you dream about all the donuts in the world you will one day get to eat and I guess that makes it all a little easier.
Tonight I noticed a lot. Maybe I just re-realized it. Tonight I went to a concert with a very special, I must say as well, healthy friend. As we sat in the venue upset the band we had intentionally bought the tickets to see had dropped out we eagerly awaited our next favorite playing, Mary Lambert. I expected her to play “Same Love” but what I didn’t expect was a breathtaking poem that left the entire place in awe, you could feel the hair on the peoples arms next to you standing up as chills radiated off each person, and jaws dropped. It was beautiful. I couldn’t get out of my head though the thoughts that spun around. Lately I’ve been feeling “bleh” and I think this word is probably the only word that fully describes how I feel to a ‘T’. I know in general I am not the only one that feels this way and I can speak for a lot of people especially those around me that are going through GP as well. To put it slightly GP is a nasty disease it takes over your stomach and intestines and leaves you feeling ugly and gross. I’ve never not liked who I am and it’s really hard to openly say that there are so many days when I just feel gross and it’s really hard to say a disorder has changed so many aspects of your life but in a sense it totally and completely has. As I sat in this space tonight and Mary Lambert played the piano and the words flowed out of her mouth all about your body being your home and it’s really a crazy thing to think about as I stood next to my healthy friend and thought about my insides and how many times I’ve laughed at myself in order to cover the emotions of feeling embarrassed or ugly or different because of something that was a part of my life that others might not understand and the idea of knowing that there are so many others in my shoes with a disgusting monster that has to consume and change the daily life of when you look yourself in the mirror. I’ve been in this group on a site of girls from all over with GP and it’s been this place where you can talk about how difficult it can be to accept how you are and how you feel somedays when there’s something so different about you. It’s upsetting that we have to resort to a special area to talk about how we are different but at the same time it’s beyond comforting knowing they are there and I owe the world to them in so many ways for making my day brighter. For those 5 minutes tonight though that little social media group of girls learning to accept and love the life they lead even through sick bodies extended through an entire place not only of sick people, but alcoholics, adopted souls, lost hearts, broken homes, and young children and a message filled the room of acceptance. It’s exciting to be a part of a generation and era where self acceptance is becoming a “trend” again and being yourself can be seen as okay once again. We still however live in a society where we feel we have to fit to the social norm to often be of the standards we are expected to “live up to” and believe me being sick can make that often difficult. I think it’s important that people stick up for those impacted by chronic illness to make a statement and let it be known that sick can be beautiful too, but also that there is so much more to it than what meets the eye. I also have to say that in general self love is important wether you’re sick or not and that understanding that you are individual for a reason is often the start to finding happiness and truly understanding all of the beautiful things this world has to offer despite the negative, because positive too does always exist, but like they say it’s just sometimes harder to find and takes a little longer. Learning to accept yourself in your ‘new skin’ or different experiences can be so hard and I never thought I would have to talk myself through convincing myself that I was good enough because so many things had been changed so quickly. I went from having self confidence and loving who I was to a social brick uncomfortable in any public situation because it meant I had to interact with others who might find me weird or dare it be used, “ugly” because I was sick and I was different. It’s so easy to be consumed and to define yourself by your struggles when in truth they are only such a small portion to who you are that seem to make such a big impact on your internal confidence. I wish it was more known that struggles are attractive, and it’s your flaws that make you beautiful.
And one more thing because what type of human would I be if I didn’t self promote: on December 17th I am joining with Dr.Morwena and two other ladies to hold a ‘webinar’ all about POTS and not only coping but also enjoying the holidays with chronic illness. You can find more details about the event by visiting Dysautonomia International’s Facebook Page! Lastly I will try to attach the video I took of Mary Lamberts poem but if it doesn’t attach all my apologies, I’m not very good at being technologically advanced! Well it looks like it isn’t going to load but you can find it on youtube it is Mary Lambert- Body Love.