There have been quite a few blog posts and magazine articles I have read recently talking about the illusion of perfection that permeates Facebook and other social media sites. There have also been studies that show that people who spend a lot of time on FB are more sad and less fulfilled than those who aren't on FB as much, and it has been suggested that seeing everyone's perfect families and “best exotic vacation EVER!” is to blame. I would venture that it has more to do with constant exposure to a screen, along with watching others live their lives and failing to get out of the recliner and live one's own life.

 

I will say that I do tend to try to post funny or more upbeat things, with the occasional whine or vent. However, my natural bent and personality is one of optimism and joy. I tend to find the beauty in the ashes and see my cup as not only half-full, but overflowing. I also make it an intentional habit to see the good. That doesn't mean that my life is a bed of roses. Sometimes my kids and husband annoy me and I annoy them. I lose my temper. I think and say things that I shouldn't. I have an unreconciled relationship in my life. I don't post these things on social media though (or really blog about them) not because it might show a chink in my armor. Rather, I don't post these things because they are personal and they involve other people besides just me. If I talk about a spat that Robert and I had or a punishment that I had to dole out to one of our sons, I am implicating and writing about someone else, likely in a negative light and without their permission. That's why I don't do it. In person, I can be as real and as flawed as anyone else. Depending on the context, I might be very willing and open to share about it too. I will also say that I do feel overall that I do have an incredible marriage and fabulous children. However, I don't consider that to be luck, but the result of thoughtful decisions and hard work, along with a large dose of God's grace.

 
But that leads to the pity party portion of this post. (How's that for alliteration?). I live with a chronic condition called idiopathic subglottic stenosis (ISS). I have blogged about it several times before, but I am too tired to link back. You can use the search engine in the left hand column of the blog if you are particularly interested. Here is also a nice overview of ISS. At any rate, it means that for some unknown reason my trachea starts to close right below my vocal cords. When this happens, I can't breathe and have great difficulty talking. It's like trying to suck in air through a drinking straw. There is no cure and the condition is managed through a surgical procedure in which the trachea is lasered open and then dilated with a balloon. This results in immediately improved breathing which, for me, lasts for a few years. Many people with ISS have to be dilated every few months.
 
I have noticed the past couple of weeks that I am having a lot more trouble catching my breath when teaching class or after walking up just 1-2 flights of stairs. I just finished layering a quilt and crawling around on the floor to smoothe out the fabric left me winded. I think it might be time for surgery again. Ugh! I'm going to try to make it to January when I am off from school and my new flex account money will kick in to pay for what insurance won't cover. My last surgery was in July of 2011.
 
 

So as big of a pain in the butt (well, really the throat) that surgery is, what I am really, really tired of is my voice. Speech-language pathologists (SLPs) work with voice disorders, so being an SLP with a voice disorder is quite odd. (There are actually a lot of SLPs who stutter, but not many with voice problems). I start all of my new classes by making it a teaching moment. I tell the students about why my voice sounds hoarse and why I cough a lot. I show them photos and explain the anatomy and physiology of what is going on. That's all fine and good. However, I am so tired of the people out in public always thinking I am sick and offering advice or trying to help me. Certainly it comes from a place of good intentions. I know that. But drinking a glass of water isn't going to help me.

My voice is pretty chronically hoarse and/or scratchy and it is worse when I do public speaking because I have to work harder to project my voice. Also, because of all of my surgeries, the cells responsible for moving and clearing mucous in the trachea have been damaged and I have a lot of extra scar tissue in my trachea. This results in thick mucous plugs that get caught on the scar tissue, which in turn makes it harder for me to breathe. Sometimes the mucous gets stuck on my vocal cords and I can't breathe at all until I cough it up, which can take a couple of minutes. When the mucous is hanging around my cords, it adds bulk and makes my voice sound even worse. In the past few months:

1. I've met some new people and they kept asking if I had allergies, if they could get me water, if hot tea would help, etc. (Of note, yes, I do have to drink water frequently to thin out the mucous.) However, in the moment water or any other beverage won't help because the problem is in my trachea below my vocal cords. Liquid doesn't reach that low and if it does I would have bigger problems like severe choking, pneumonia, and/or death from aspiration. I also just say something glib like, “Thanks for the water. My voice just sounds like this because of a medical condition. I'm not sick or contagious.” I hate even saying that because I know that people really don't care what's going on, but I don't want them to keep trying to remedy the situation.

2. Last fall I was teaching a workshop to a room of SLPs and the American Speech-Language-Hearing Association National Conference. After the workshop, a friend of one of my colleagues asked him if I knew I had a voice problem and if so, what was it. I hate that the sound of my voice detracts from the content of what I am saying.

3. Just last month I was leading a teacher inservice at the school where my sister works. Ten minutes into my presentation two people from the audience slipped up front and put some water on the lectern for me after hearing me cough repeatedly. (I already had water there). I had to stop and explain my voice and my coughing.

I am just tired of my stupid cough and my stupid voice limiting what I can do and drawing attention to itself. Last weekend we went on a long bike ride with friends. I have been biking all summer and have pretty decent endurance. However, at one point I was lagging way behind everyone else. Robert slowed down to wait for me and I had to explain to him that I was fine if I just pedaled, but I had been pedaling and talking with our friends and I just can't suck in enough air fast enough to do both. Because of this I can't participate in any group exercise classes or have a walking/running/biking buddy. Anything more aerobic than a slow (e.g., 20 min mile) stroll and I can't talk while doing the activity. If I took Zumba or Piloxing (Pilates/kickboxing), which I would love to do, I would sound like Darth Vader and I would have a coughing fit. That's why I have to be a solo exerciser. So there's my not-so-perfect life, thorn in my side, whiny butt post and pity party.

However, I am thankful for a diagnosis, for a great laryngologist, and that I don't have a tracheostomy. I am grateful that my ISS can be managed by a relatively simple surgery. I am blessed with wonderful, supportive, and understanding family and coworkers. I just wish I hadn't taken for granted the delightful ease of breathing that I had for the first 30 years of my life.

 

 

 

 

 

 

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