Dear you,
I hate you. I hate everything about you. I wish that you had never come into my life; that I had never learned your name. I hate everything you have done to me, and everything that you continue to do to me. I hate the fact that I can’t go more than a few minutes without thinking about you and the way you affect my life.
I hate the fact that when I wake up in the middle of the night, you’re the first thing I think about. I hate that I can’t get up and go to the bathroom, or get a drink of water, or do anything without first worrying about you and taking care of you. I have to tend to your needs before I can tend to my own, and I hate that. I feel like I am your servant; that you are the true master of my life and I exist only to serve you, like I’m your host or something. You’re like a parasite that steals my energy, my strength, my willpower. You take everything away from me, and give me nothing in return.
I hate that you make everything so difficult, so complicated. Things which should be easy, painless, or carefree become huge dramatic problems to solve because of you. Something so simple as meeting friends for lunch or going to a concert become huge ordeals because of you. I have to call ahead. Make sure there are accommodations. Make sure that you will be accepted, that there is a place for you. Make sure that there won’t be any obstacles or barriers that will have to be overcome. And if there are some barriers, then I have to negotiate on your behalf. I have to find solutions, make compromises, settle for less than what I really wanted, because that is what you demand. Always I have to settle for less than what I really want, because of you.
I hate that people treat me differently because of you. I hate the cute girls who are into me until they find out about you, and then it changes to oh, so sorry, I have to wash my hair or I’m just not looking for a relationship right now or some other inane bullshit that they say when what they really mean is that they like me, but they just can’t deal with you. I’m not worth their time because of you. What will their mother say? What will Daddy say? It’s just too much trouble, sorry.
And really, that’s it. It’s just too much trouble, sorry. Gee, Jay, we’d love for you to come with us, but you know, there’s stairs, and you wouldn’t be able to see anyway, so maybe next time, ok? Well, the concert’s gonna be out on the lawn, and I just don’t think that we can get the chair down there, so maybe next time, ok? The kids are playing soccer, and I want to go, but it’ll be too much trouble to get you down there, so why don’t you just sit here and wait in the car? I’ll only be a little while. The club has two levels, and only stairs between them, so I don’t think you’d have much fun. Well, I wish you could go with us, but there’s not enough space in the car for all of us…
And then it gets worse.
Oh you’re so brave! I really admire your strength and your determination! You’re truly an inspiration to all of us! Those, and ten-thousand other pieces of inane bullshit that people say to me, simply because of you. I am brave, and strong, and determined, but not because of you. I am those things because of me, because of who I am, and how I was raised. It has nothing at all to do with you, but people insist on giving you the credit. Like without you, I’d be some craven coward. I hate you because people think you can be a source of strength. You’re not. You’re a source of weakness and frustration. My depression, my self-doubt, and my insecurities all come from you. You take away my strength, and you replace it with fear. I hate you for that, and I hate it when people tell me that I should be thankful for you.
People tell me that I have to learn to accept you, that I have to learn to love you. Because you are a part of me, and because I’m not fully loving myself until I love you, too. People tell me that I’m not worthy of being loved, because I can’t bring myself to love you. You can’t expect to find love until you love yourself. But how can I love myself, when I know that you are inside me, and will always be a part of me? You, who have shown me throughout my life that I am not good enough, not strong enough, not important enough to be loved…or even accepted. You who have robbed me of so many chances for happiness, you who have taken so much away from me, and given me nothing in return.
I hate you, Charcot-Marie-Tooth Disease. I wish I had never learned your name.
Jay
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Jay, this is such an amazing, raw, and moving post. Not only is the writing style beautiful, captivating, and inspiring, but your words provide an insight into who you are and what you deal with on a daily basis. I am so impressed with your courage, your ability to write this. As someone who has a hard time putting herself out there (though I’m getting better at it!), it’s absolutely inspiring to read this and to see you open up to the world with your words. These words are powerful and truly moving and I hope you know how wonderful it is (for you and for your readers) that you wrote this post.
Positively Present´s last blog ..saying no to negativity is as easy as ABC(DE)
I know you don’t know me very well, but…*hugs*
Christine´s last blog ..Realizing
Jay, I hate it too. I could write you some mushy crap about how it’s all gonna be OK, and everything’s gonna work out… but what does that even MEAN, when you have to deal with this forever?!
Fact is, it sucks… and it sucks in a big way. And for some reason you and I will never understand, this is YOUR burden to bear, and yours alone. No matter how many people love you (parents, children, parnters, friends)… this is YOUR story. I read somewhere that “There is only one person whose business it is to spin this particular cocoon,” and THIS cocoon belongs to YOU.
You get to carry it. You get to learn to deal with it. You get to hate it, begrudge it, and accept it. And you get to decide what will eventually come out of it. But today, I won’t give you any fluffy words or send you smileys to cheer you up. Today, I hate this CMT too.
You know what we should do? We should go to a concert at Eddie’s Attic (where I went the other night). The whole deal is upstairs. We’ll just get there early and take our time; and, by God… we’ll take in a show WAY up there. How about it, toots?
Lisis´s last blog ..Inspiration from Rainer Maria Rilke: Feelings
@Dani – Thanks for your kind words. I’m glad this post spoke to you, and gave you a better glimpse into my life. It’s not easy to write about these things, but (at least I’m hoping) it will help me heal, help me to come to terms with it.
@Christine – Thank you! Hugs mean more than you realize…it really is helpful.
@Lisis – Thanks, Lisis. We *totally* should go see a show there, that would be awesome. They have lots of good bands there, but I’ve never been, because it’s always been too difficult. More importantly, though…thanks for understanding.
Jay – I don’t know you in the ‘real world’, but I think you are super cool no matter what. You have a positive energy that comes through and I love, love how you express yourself. Kudos to you and your awesomeness.
Jill´s last blog ..Tribute to Zach
Hi Jay,
It truly does suck and there is nothing I can say otherwise. Physical disabilities are not easy to deal with…I think the reactions from people are far worse than the actual disability. At least that has been my experience. When I was born, I had a condition which made my neck and head look crooked. So my head looked like it was not in the center. Kids made my life a living hell because of it. No one wanted to play with me and they always made fun of me. Add the fact that I was the first ethnic kid in the neighborhood and that made matters worse.
When I was about nine, I was able to have an operation to fix my condition. I had to go off to the hospital for a couple of weeks and the pain was hell. I had to wear a brace for a year in order for my neck to adapt to being straight. Kids were even worse. I so much thought that when I looked normal, things would get better. It didn’t. The pain of the past made a dent and it made me look at people differently.
Apologies for rambling on but I just wanted to share my experience. I know it doesn’t do anything but I just wanted to say I know how much it sucks and I wish your condition could be fixed. It is times like this when I wish I had a magic wand and could sprinkle fairy dust all over.
Nadia – Happy Lotus´s last blog ..Hanging Out With the Saltwater Buddha
I hate to even say this but, this is inspiring to read. The raw emotion. The reality. Yes, it sucks! Each of us suffers with some sort of disability..may it be physical or mental. Mine are mental. I lack confidence, I am hard on myself, I fight feelings of inadequacy and failure everyday. When my Mom came to visit a few weeks ago I dealt with her physical disabilities. She has back and knee problems and can’t walk much. I felt her frustration.
I agree with Nadia…wish I could sprinkle fairy dust on you and make it all better!
Caroline´s last blog ..Sit with it…
@Jill – Thanks! It’s always nice to hear kind words, and yours are among the kindest.
@Nadia – Thanks for sharing your story. I feel like I know you better now, and I love that! And you’re definitely right…the way people treat you because of the disability is far more hurtful than the disability itself. Sometimes, I think being disabled would be easy if people would just not treat me differently because of it. OK, maybe not “easy”, but definitely easier.
@Caroline – It’s true that we’re all disabled in some way, some more than others. I think the world would be a better place if we all realized that, but so few of us do. I tend to forget that myself from time to time, and hat’s when my disability hurts me the most, because it can keep me from seeing the suffering that other people go through. I have a tendency to get stuck in “poor me” mode, and forget that we all have troubles. Thanks for the reminder!
Jay – I truly believe that God, or the Universe, or whatever you wish to believe in, presents challenges for some reason not yet clear to ourselves. Until we share the depth and breadth of those challenges with others, we learn nothing and we teach nothing. I will not attempt to provide any (as you so well put it) inane BS to soften your challenge, but I will say this. We all have challenges, some more debilitating than others, some more obvious than others, some more known than others. You sir have cast light onto your challenge, which helps you grow, which helps us to help you (and of course others) and to help us all understand the shadows our challenges cast upon our lives and others. Without insight such as what you’ve provided here, we all are walking about somewhat asleep in some ways, and your efforts serve to awaken that which needs to see, learn, share, Love.
It was you Jay, and your blog and your challenges, that have helped lead me out of a very dark place. I have begun writing again, I’ve begun to engage life and trust others. I don’t always say “I’m sorry” for everything. I’ve begun to write again. I have hope for my future and I regularly greet each day, and many moments, with gratitude. As the song says, “I can see clearly now…”. OK, maybe not quite, but thru the efforts of people such as yourself, my vision improves with each passing day, and the light is brighter which shines on my path.
So, yes it’s a challenge, no doubt about it. But by discussing it, giving us all a glimpse into your life, you shine a light into our souls and onto our worlds that average human beings, common souls, cannot. “Shine on you crazy diamond”
PS – I just added your feed as one of the first in rotation via my Twitter updates. More people need your kind of knowledge & experience in their lives.
Thank you, Terrapin. I can’t even begin to express to you how much this comment means. This is one comment that I’ll keep coming back to and reading over and over again, because it sums up why I started this blog in the first place. Thanks again.
Hi Jay!
I am sorry that I am late to the conversation. This was an amazing post for me to read and digest. It really struck me how you treated CMT in second person. I can totally relate!
I explain to people, often, that I feel like I’m living in someone else’s body. My body left me and I’m stuck with this crappy Multiple Sclerosis shell–squirming around trying to figure out how I used to do things, think through things, and emotionally deal with things.
It is great that you are giving not only yourself, but others a voice–a hint of what it is really like to live with a disability. What you’ve done for me today is to make me feel less alone. To feel that someone else is out there fighting the good fight, and also writing the good write! Keep up the great work, Jay, and I think you are amazing with or without your CMT shell. Next time you’re on the west coast, let’s go split a bottle of wine!
Love,
Lori
Hey Lori,
I’m glad that you feel less alone because of reading this, and thank you for sharing your insights as well. I think it helps a lot of people just to know that they aren’t the only ones who have to struggle with issues like these. And as for the bottle of wine…you’re on!
Damn. That sucks, Jay. Thanks for trusting us with it.
I think you’ve said it all when it comes to these things that keep us from being able to live a normal life — we hate it.
Dot´s last blog ..Comment on Life Goes On by Patricia
I cant help myself.. tears rolled to my cheek. I did want to wipe it off b4 anyone finds me – but something inner me, let it fall.
A movie – in which we identify our raw self to a character in the film , with a climax but not concrete enough – leaving us to think and decide on the best possible climax by ourselves clicks in Box Office! We can take it to either ways we’d like.
When people love , is it due to emphathizing ?
Yes or No – I don’t care. at the first place. But when life gives us so much brains to think, I can’t help but test their reasons for love – that’s human. That’s natural!
But for ppl, who pour their love towards you, be it due to your inspirational soul, bare chested honesty or due to empathization – it’s natural for ppl to be influenced by any of these – not in our control – It’s just natural! – May be we are immature to control the type of influence our love has to others – but it is true – True to our hearts.
Why we pray to God? If God only had brains to know on what influenced this much of devotion from us.
We pray silently, God doesn’t look at us this way. Hope God knows only our love, and not what it is influenced by.
I hate your honesty if it makes you question the source of you being lovedd. No harms. Be honest.. This is natural!
It’s just I need some time to understand.
Jay, I am late reading this, but so glad I did, because this kind of raw and honest sharing is what keeps cyberspace real, and I appreciate you for doing it. I didn’t know you were dealing with something like this at all. It provides more insight into the search you are on. Another blog I read, Original Faith, struggles with faith in the light of physical (and by association psychological) struggle as well.
Like others, I don’t want to offer piddly, fluffy comfort, but the comments reminded me of something I asked a spiritual teacher I respected very much once, and his response. My grandfather was very sick at the time, and in a lot of pain. I asked this teacher, ‘does suffering purify?’, and he said simply ‘no’. So I said, ‘then is there a point, a role, that suffering plays in spiritual growth?’ And he said, ‘it’s not necessary to suffer to grow, that’s the lie some traditions tell, but suffering can play a role in who you yourself will help. What you struggle with, you will have the most compassion for, and the most insight on.’ I was struck by how you are already doing that, based on some of the comments. – Lisa
Lisa (Mommy Mystic)´s last blog ..7 Steps to Seeing
@Dot – Thanks for understanding. I know you deal with similar issues. It’s nice to know we’re not alone, eh?
@Krishna – Thank you for your kind words, I really appreciate them.
@Lisa – This was written in a flurry of feeling sorry for myself, and I almost didn’t publish it, but I did because, well, it was an honest expression of what I was feeling at the time. And also, I think people try to gloss over the pain that being disabled causes, and I wanted to try to force people to acknowledge that being disabled sucks.
However, there’s one piece in particular that doesn’t ring true when reading it again from a fresh perspective: I said that nothing good came from being disabled. That’s not really true. Just like you pointed out, it has taught me to be more patient, more understanding, more forgiving, and more compassionate. Thank you for seeing that, too.