It is pretty easy to come up with reasons this has all been horrible. I'm sure that many of you, upon hearing my diagnosis and treatment, could compose quite a list of negatives. However, it is true that every cloud has a silver lining, and since this is a big-ass cloud, that is a lot of precious metal.
I've known for a long time that I should slow down and think before I speak. I should even speak more slowly as my thoughts often get ahead of my ability to convey them and I end up confusing people. Now I have to slow down when I speak if I have any hope of people understanding. If I do forget and blurt something inappropriate out (who, me?), it's likely most people won't know what I said and those who do will just have to conceal his/her snickering while deny everything.
I have always said I wanted to be a person who went to see the sights. The museums, the waterfalls, the libraries, the historic sites. If you ask me about most places I've ever been, it is a good bet I can tell you where we ate that was amazing. Or, where we ate that was horrible. And what we ate. Maybe even what we paid to eat it. Even if I learn how to eat well enough to go to a restaurant, my love of fine dining is never going to be the same. We will see more architecture, more movies, and more sculptures. I'll be less of a hypocrite.
When you have a reminder of what (bad) might have been every time you speak and eat, you are prodded regularly to remember what is important. Don't get so angry about muddy shoes or messy bedrooms. Be quicker with I'm sorry, are you okay, and I love you. Your loved ones will remember what you said and did, make it a day dream and not a nightmare.
I have learned, beyond a shadow of a doubt, that I am loved and cared about by far more people than I ever knew. Some relationships have deepened into strong friendships and already strong bonds are now iron clad. Without this experience, I would have continued along believing that I played a much more superficial role than I actually do.
I also learned who does not care quite as much as a I thought. Who is not to be depended on in a crisis. No, it isn't you. Stop asking such a ridiculous question. There is value in this knowledge, though, too. It is good to know who is really rooting for you and who is just hoping you beat the spread.
Martyrdom is unbecoming at best, but it is true that if someone had to have this crap, I'm (sort of) glad it was me, for several reasons. I am not the sole breadwinner for my household, and, although I miss working and my paycheck, we will get along fine without my income. We have excellent health insurance which picked up 100% of the hundreds of thousands of dollars my surgery and hospital stay cost, as well as the full cost of my Dynavox (an update on that further down). I am not a single parent. I have a spouse who was willing and able to care for me throughout this journey. Allowing someone to snake a suction tube down your windpipe into your lungs isn't something you trust just anyone to do. Although there has been less gore than you might expect, there has been more gore than I would be good at handling. The one time I tried to give Kelly a shot and nearly passed out is proof that I'm a better patient than doctor. I am blessed to have amazing friends who could care for Karissa and make her life as smooth as possible. Friends who dropped everything to come and visit, to send gifts and cards, to make useful items, to deliver meals, send inspirational text messages and nag me to exercise.
I've said this before, but I am happier to go through this than to watch someone I care about go through this. I know that is selfish of me, but it is true.
Not that I would turn down a tongue transplant if there was such a thing.
The Dynavox is back and after reading the thoroughly confusing manual and watching a few of the somewhat unhelpful videos, I finally figured out how to get the qwerty text to talk keyboard and the whiteboard apps both where they are one keystroke away. I haven't gotten as far as customizing my rapid fires (quick, common statements), but for short statements I generally do okay on my own. I have a note in the truck that says, "fill it regular, please" as there is no way a pump jockey is getting that from what I can say. I do find it very interesting that a lot of the pre-programmed statements are negative. "This is boring" "I'm mad" "I don't want to play anymore." I guess the negative ones are the most frustrating when you can't convey them. I am going to a conference this weekend, so I will get to see how the Dynavox functions in a large setting. This should give me some idea of whether or not teaching with it will be feasible.
I have survived my five days of solo parenting and am looking forward to Kelly's arrival home. We have gotten the cat wrestling down to a minimum, so she is not going to be happy when he comes home tonight. Although I was very nervous heading into this adventure, it has been good for me. You never know what you can do until you have no other choice but to do it. Kelly and I were even able to speak on the phone. As long as I speak slowly and always spit first (that's a rule), he can generally understand me. My career in phone porn is definitely over, though, except for maybe heavy breathing.
Swallowing is interesting. I can usually get a sip of water down without too much head bobbing on the first try. It is the second try, third try, fourth try, that tend to send water up my nose. I still haven't figure out why sometimes it feels like the water is running into my ear, either. It may have something to do with the fistula. Maybe. Or I'm just saying that because fistula, while not being a cool thing, is a kind of cool word.
Exercise has been dismal. Dismal. If only the computer wouldn't work unless you were walking on the treadmill.
I've got an acupuncturist to try. Massage therapy and physical therapy are trying to get the drainage going and all the parts to play nicely together. Extra speech help. The cat looks less bedraggled. The house is semi-clean. All in all, not too bad, not too bad.
What do you want to know that I haven't told you?
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1 comment:
Although your career in phone porn may be over, you can always tell us what your screen porn name would/would've been: Take the name of your first pet and add to it the name of the street where you first lived. Ta da. Maybe you'll share it with us on a future post. Tee hee. Anne B.
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