December 19, 2009
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I Love Swallowing
When you reach a certain age with Duchenne Muscular Dystrophy, swallowing tests become mandatory as a part of routine check-ups. Let’s just say I scared the wits out of everyone during my very first…
As I engulfed the assortment of sample foods with a variety of different textures, the technician looked at me in horror.
“D…don’t you need water?!”
I paused for a moment with my mouth full of grub. I turned to him.
“Wo!”
I must have looked like a Neanderthal to those medical students behind the two-way mirror. You’ve seen it on science fiction dramas, where the super intelligent doctor makes a seriously concerned comment from within the dark corner.
“Who is this cave person we’ve just discovered?”
Thinking back, it still makes me laugh, but it’s a different story when things are changing again, and it has been for a few years already. A week ago today, I coughed up a relatively large piece of oatmeal that was stuck inside my throat. It was from a cookie crumb I choked on a week before then.
Unlike everyone else, when I choke on food, I’m unable to cough it up right away. If I’m lucky, I can get it out in a day or two, but an entire week? I’m surprised that I didn’t develop pneumonia, which happened only once in November of last year. I choked on an orange pulp and it wasn’t a big deal, except I ended up with a fever and lost my appetite. I had to eat something the next day, even a small meal, and oatmeal seemed plausible. I choked on it and presto; aspiration pneumonia!
Funny thing is, oatmeal in soupy form is dangerous, while in cookies it’s fine, until now… and it’s the same reason I can’t have nuts, because of the tiny bits. I always wonder how much more loss of physical abilities I can take before going out of my mind. So far I still haven’t, or so I think!
I used to swallow whole (large) marshmallows as a kid. I loved showing off my talent and scaring family members, but sooner or later, I won’t even be able to swallow proper food. I’ll need a feeding tube with nutritional supplements instead.
And I always try to feel sad to at least give it a little credibility compared to my other losses, but it’s impossible somehow because who the hell can’t swallow? What kind of ridiculousness is this?!
I’m ridiculous, the people around me are ridiculous, and my life, challenges, and weaknesses are ridiculous. I don’t even know if I should laugh or cry. Am I supposed to seek comfort from others so they can lie to me that everything will be okay? What can anyone say when all I’ve ever done was endure?
Because of my physical disability, I continue to depend on others for almost every need. I’ve chosen emotional independence, or else I’d lose myself. I need to know there’s something I can call my own; my spirit, mind, and soul.
Like Batman, the outcast who took the blame for all, I’m the Dark Knight who no one understands, and the outcast who won’t be able to swallow.
Comments (45)
This was sad. Wow, you're a human being.
Self-pity is unbecoming.
*hugs* Wow Ricky.. I am speechless for you..
Can you dredge up the racism again? I didn't have enough and I'm sure many Xangans are chomping at the bit. JUST KIDDING.
I think a more appropriate analogy would be you're like Professor X who doesn't swallow, not Batman. HALF KIDDING.
At the very least, you're putting your thoughts out there and staying positive. But do curb the racism. Hehe.
I'm not your biggest fan, but I can relate with this post as I have seen my own mother go through similar circumstances.
She's went from an independent athletic woman to someone who has very limited use of her body and has trouble speaking due to neurological problems.
Telling someone everything will be okay is a way to get them to shut up. My mom gets insulted when people tell her god will send her a miracle--because it's more or less the same thing.
Life is completely absurd. We laugh about stupid and annoying problems she has. The other day, we discussed whether to get "the clapper" so she could turn on and off the lights without getting off the couch. Then we remember she couldn't clap and both laughed about it.
She also has a tendency to replace words when she tries to speak. She can rarely say names, and common expressions tend to go wrong. When she means to say "thank you" lately she ends up saying "Yeah man!" as if returning to her hippy days.
But anyway, I'm getting conversational. I'm just agreeing with your attitude here. You have to laugh because it's not funny at all.
-Alexander the Zounderkite
Rickster, I love when you really share about YOU in posts like this. You're awesome. [[huggles]]
"My grace is sufficient for you, for my strength is made perfect in weakness." (2 Corinthians 12:9)
Martha
Not at all ridiculous Ricky, you make so much more sense in your outlook to life than most so called "able-bodied"people. If we are honest with ourselves, everybody has some form of (to use the term broadly) disability. Whatever help we need from others to get by each day doesn't diminsh our place in this world as still having a totally independant will to decide how we will react to situations. Our soul, the essence of who we are is unique to each individual. I believe that lives on. Guess I have to cancel that bag of marshmellows I was going to send you for Christmas, lol.
That title got my attention Ricky, but that was a sad post.
=[
"I don’t even know if I should laugh or cry."
My forms of drama teacher said the funny thing about sadness is that anything that's funny starts out sad. They're kind of interchangable.
On the bright side of things, at least you don't have to deal with rogue chips.
Sounds as though you have accepted your situation and learned to live with it.
*hugs*
Makes me appreciate the little things!
Hang in there
You're a really inspiring person. The fact that you have many difficulties in your life, yet you still are able to be a funny person and write interesting posts is remarkable. Not ridiculous in the least. Stay strong. <3
Its not okay, i would never be "okay" if i had to face the stuff that you have to deal with on a daily basis. But you have strength i lack, and handle your disease with grace.
<3!!
The title totally threw me off.
Aww. Sorry to hear that. I know this is going to sound totally cliche, but keep your head up. You already have such a positive attitude and it seems to me that you're dealing with your situation fairly well. But if you ever need someone to talk to, I'm here for you. *Hugs*
*Hugs* I is sorry, Ricky. I hope that everything gets better.
I echo everyone's sentiments here. I hope you get better eventually too. I hope you live to see a cure for this horrible disease. My heart breaks for you, buddy!
Hang in there! thumbs up for not complaining about it every day; you're a strong person, you can do it!
gg
I think if you hadn't had to endure what you have, you wouldn't be nearly the inspirational and fun person you are today. My sentiments are with @mathematicalbagpiper - I hope with all my heart you're around when a cure is found.
You have a tough path, Rick.
We are all ridiculous. Eventually. All we can do is laugh...and cry...and laugh some more. And then time makes us all equal. Some perhaps a little more equal than others, gaining strength and wisdom from great suffering.
My two cents, anyway.
You're a strong man!
Take it easy. Pythons swallow their prey whole without chewing. You're awesome.
As you've put it, it is ridiculous. But what isn't ridiculous is the truth in what you've said - "You endure". You have strength, resilience and emotional capabilities and regulation that most people aspire to have. But these are just words, compliments which I'm sure to you are a little bittersweet. I enjoy reading your blog and even though these are just words, I admire your strength and your humor.
@lewk - Haha, me 2!
I've watched someone go through the process of not being able to eat but, maybe make sure to chew each bite 30 times, okay?
I'm glad to hear a little more about you. I could say to hang in there and that everything will work out, but I don't think that's what you want to hear. Regardless, I am keeping you in my thoughts and I'm glad you're here and I'm glad that we can be a part of your life in a small way. Keeping your emotional independence is so important through whatever struggles life throws our way and I really look up to you for that.
Hey Ricky! You're a strong person and it shows in a lot of ways. All my life I was told that God doesn't give us a cross we can't carry. I don't know if you believe in God or not, but I have believed those words for years, simply because it's true. There are times when I hate myself for my disabilities, but other times I keep my head up and show the world that I can do anything. Your ability to write is amazing and you express yourself really well. Don't let anything get you down. Stay positive and be proud of who you are, cause who you are is a great example to us all. Take care and smile!
We laugh that we may not weep. The visual image of you swallowing a whole marshmallow almost made me spit up.
Seriously though, your blog is so fun to read, I hope you enjoy writing it as much as we enjoy reading it.
thanks for the add
-Ellie
Awww...Ricky...I'm excited that you are using your site for good and not evil...I heart you Ricky
Wow--Thanks for opening my eyes to something that I shouldn't take for granted. I always think that my health problems are scary, but the things I deal with are very minor compared to what others have to deal with.
I hope you ARE able to maintain your emotional independence.
@Lighthouse_Oceanlover - Then eat a few handfuls of nuts for me instead, haha.
@FoliageDecay - Thanks for your comment. I appreciate it very much and hope your mom is doing well. I'm glad you understand where I'm coming from.
@hubbaduh - I'm actually quite egotistical, lol...
@liferemainsbeautiful - It is. I'm a Independent Fundamental Baptist, by the way.
@beachboy360 - Ha, funny! =P
@Keeko1 - Why? You love to swallow too? Haha.
@stixandstonz2009 - Lol, not that I had much of a choice.
@everlastte - Nothing can ever get me down. I'm ridiculous after all.
@Eternalimplosion - No, you're right. Of course I'm not okay. You're going to have to smother me with a hug now. Be sure your head is above mine, haha. <3
@NonnieGirl - You're very thoughtful to offer. Thank you so much. (:
@Xx_Ex_Emo_Child_xX - When the girl of my dreams comes along, I will.
@mathematicalbagpiper - If you're feelings are genuine, you should talk shit about me more often, haha.
@the_rocking_of_socks - A complement from you? It's about time, lol! You're sweet, thanks.
@silentangeldying - Though yours are just words, they mean a lot to me. Thank you so much, and for understanding.
@dlmcniel - Thirty?! You're making things even more difficult, darn you, lol!
@LauraG0929 - I can't really say much else except thank you. I appreciate that you care enough to want to understand me. (:
@boricua_chic_2008 - You know, you're always so nice to me, and I want you to know how much I appreciate your kindness. And I do believe in God. (:
@judyrutrider - *gives you a marshmallow, regurgitated*
@ShimmerBodyCream - With your naked warmth, right?
<3
@Arroyn - I heart you more!
@k_stin - It's amazing what the human spirit is capable of overcoming, isn't it?
@DearRicky - Thank you for your kind words. You have never been mean to me so I have no reason to be that way towards you either. I know how some people on here can be towards you but that's their problem. I like you the way you are. I am glad to know that you believe in God, cause He is the only one we can rely on to get through anything. Keep the faith Ricky! Take care and God Bless!
@DearRicky - LOL! I'm not always a jerk, you jerk. Take care, hon.
It's unfair. Thats life. You've probably already learnt to get use to it but its ok to feel self pity at times. Who wouldnt pity themselves in such a situation? But hey, self pity isnt going to help you and soon, you'll just have to live with it. Whether you laugh or cry or feel sad about yourself, time continues and you still have to live your life. So rather than wasting a day of feeling like shit why not laugh the day away? Focus on what you do have in life, not what you dont have. You're gifted in writing, make use of it. Why not write a book or something? lol.
I love your outlook on life.
I love you Ricky! For when someone makes you laugh and cry at the same time, isn't that love?
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