Twenty Years

I have no idea how twenty years could have passed so quickly. Twenty years ago today, my father left our earthly world. Twenty years ago. In twenty years, he didn't see the rest of his grandchildren, the rest of his great-grandchildren, or his great-great-grandchildren. He didn't see my husband and me move back from Chicago.

My dad was a funny guy; always cracking jokes and puns (so now you know where I get THAT from). I remember one time he pulled me aside, away from the “real” adult women (my mom, my aunt, and my cousin) to tell me this joke: “You heard how Vanna White lost her virginity on a golf course? Talk about a hole in ONE”.

I was simultaneously mortified and pleased. To this day, I wonder why he told me that joke, but none of the other women who were there. Maybe he knew that my love of all kinds of humor was ingrained (from him, of course). For whatever reason, he didn't want to tell it to everyone. I never did ask him why. I'm sure it was a fleeting moment for him, but it was a profound moment for me. He saw me as an adult. Or, at least adult enough to hear a somewhat off-color joke.

Growing up, we only had one bathroom. Whenever I'd get ready to take a shower, I'd always announce my intentions. “I'm going to take a shower”, so if anyone had to use the bathroom, they had fair warning. My dad's response was always the same. “Put it back”.

So many things I miss. That chuckle at his own jokes. The never-ending puns. His voice.

I really wish he could have known my kids, I wish he could have seen my daughter dance or my son play guitar. He wasn't extremely vocal about it, but he was extremely proud of his family.

My dad was very old-school. He fought in WWII, and was raised in an era where men did “man stuff”. When I'd say “I love you, dad”, he'd say “You're only saying that 'cuz it's true”. I remember he was in the hospital one time and I said that I loved him when I was leaving. He said, “I love you too”. I cried all the way home because I thought that was it.

I was in high school. My mom was at my sister's house, so it was just my dad and me at home. I had an afternoon exam that day, so like most teenagers, I slept as long as I could. When I came down from my room, I noticed odd things that I tried to explain away. My dad's car was in the driveway (maybe he got a ride with Earl). His lunch that I made was in the fridge (maybe he forgot it). His cigarettes and lighter were home (maybe he forgot those too??). Our neighbors' telephone number was in a very visible place (okay, LouAnn, call the number). No answer. Both neighbors were at work. Call my grandma. All she would tell me is that my sister was bringing my mom home, and they should be home in a couple of hours. Why? Mom's not supposed to come home until (I don't remember, but it wasn't that day).

The rest of that day is kind of a blur, but what had transpired was that my dad was having a heart attack. Rather than call an ambulance, he called the neighbor to take him to the hospital. That's why the neighbors' phone number was out. Later that day, when I went to visit him in the hospital, he asked me “Don't you remember me yelling up that I was leaving for the hospital”?

Well, yes, I remembered, but I assumed he meant he was leaving for work. I never heard the word “hospital”. I'm sure he told me, but the word never registered. It was that hospital visit when I said “I love you”, and he said, “I love you, too”. I was terrified that he wouldn't come home.

But he did come home. He was around for a good many years.

He went through a lot in his time on earth. A LOT. For all of the poking, prodding, cutting, drawing of blood, he never complained. He never said, “why me”. At least not to any of us.

The last night up at the hospital was a goofy night. Wheel of Fortune was on the TV, and my mom, sister, brother and I were winding down our visit. My sister and I were mocking the contestants, jumping up and down, and my dad was smiling a lot. We left knowing that my dad had a good night. We had no idea it would be his last night. Sometime in the middle of the night, we got The Call.

Twenty years ago today.

Now my mom and dad are reunited.

Have I Learned My Lesson?

After my lesson about pointe shoes, I had my first tap lesson last night. Hmm? Why did I need a lesson on pointe shoes? Oh, my daughter is taking pointe this year for the first time. There's a right way to attach the ribbons and elastic, and a wrong way to attach them. There's a good chance the dancer could get hurt if said items aren't properly attached. Also, the teacher wanted to fit the shoes on each girl because again, injuries can occur without the proper fit.

We got her pointe shoes at the same dance store as the other families, but for some reason, most of the families had ill-fitting shoes. One mom said her daughter tried on over 20 pairs before finding shoes, and her daughter's shoes were in the bunch that didn't fit properly. Only 2 or 3 girls of about 10 had their shoes fitted correctly. I'd be very unhappy if my daughter's shoes didn't fit right. You trust the people at the dance store to know what they are doing, especially when it comes to pointe shoes.

Anyway, my tap lesson.

The lesson was for adult beginners, but I was at a disadvantage on so many levels just tying my shoes. I mentioned that I tried tap years ago, but it wasn't a beginner class so I was always lost. Much has changed within my body from years ago, but it happened so gradually that I adjusted to it in my everyday way of life. It's not until you try something new that you realize how far off you really are. Also, I'm pretty sure that all of the other people had some experience tapping, even from childhood. My dance “career” ended when I broke my leg in March of first grade, and I was in a non-weight-bearing cast on crutches for 6 weeks. I never really made it past tick tock down and toe heel, toe heel.

As you can tell, I did survive the class, and my body doesn't feel any worse today. So far. How did I do? In a word, terrible! Some of the steps showed me precisely how bad my balance is. Some of the steps showed me that my coordination is sporadic; I'll get a step, then, bam! My legs say, “nope”. My mind was telling my feet "shuffle shuffle shuffle", but my leg was doing "shuf-fle shuf-fle shuf-fle". At one point, I asked for a barre because I thought that might help to steady my balance on the side shuffles. Didn't really help.

But you know what? I did it. I stayed for the whole class, and I actually got the hang of some of it. I might even be able to catch on more as the year progresses. Or not. I am, however, willing to give it a go.

Part of my problem is trying to get my body to move the way I'm telling it to move. My head keeps saying, “Oh yeah, piece of cake! We got this”. My body is saying, “Whoa, let's just take this a liiiiittle slower there, sweetie”. It may be due to the MS, or it might just be because I'm learning. Time will tell, right? I'm going to keep at it until my body just won't do it because you know what? I had fun, and it was something I did just for me. I didn't do it because I had to, or it was recommended, or my family would appreciate it, I did it for fun. For me. 

A Day Like Today

Today has already been quite the day, and it's still morning. It was the first day back to school for students in our district. I said the first day for students because teachers had to report last Thursday.

My day started early; my kids like to get up at 6:00 am on school days, and I like to have some coffee in solitude, so I was up long before I woke them. The coffee in solitude lets me wake up gradually and not answer the inevitable “where's XYZ” questions as soon as I wake up. I'm much less snappish after coffee (notice I didn't say that I'm cheerful, or perky), and no one wants to start their day sharing space with a grump.

So, I woke up my twelve-year-old daughter for her first day of high school. High school!!

I could write an entire post about time flying, children growing up too fast for my liking, or being torn between wanting them to stay little yet wanting them to experience their own adventures. Those of you who have kids already know all of those things. Those of you who don't have kids probably aren't very interested. Anyway, that's a post for another day, maybe.

Next, I woke up my ten-year-old sixth-grade son.

I walked my daughter to the bus stop because in the city where we live, the high school students who attend public school take public transportation. As I watched her get on the bus, I started feeling the hot sting in my eyes, the knot in my stomach, and the lump in my throat. What was I doing sending my precious baby downtown on the metro bus?! By the time I got home, I was mostly recovered, except for the lump in my throat. Soon it was time to walk my son to the bus stop. He still rides the school bus, so the pangs from earlier weren't there. They won't be for a few years.

After having more coffee, I started making notes and doing (more) research. Why was I doing that? I'm glad you asked.

A few days ago a very good friend told me that a writer was searching for people to interview who are living with a chronic illness. The focus of the article is on the financial toll it takes when you live with a chronic illness. I contacted the writer, and, in my infinite wisdom, set up a phone call interview for this morning.

I was actually nervous about it. I couldn't believe I was nervous, but I was. Before today, I'd never been interviewed for a national publication. It was also my first time being interviewed about having MS, or anything to do with having MS.

The writer called exactly at the scheduled time, and we talked. She didn't ask as many questions as I thought she would; she just kind of let me tell my story. I gave her some information that she hadn't known before speaking with me, so I think there's a pretty good chance she will use parts of our conversation for her article. I suppose time will tell, but she told me she would send me a link to the finished article. I'll post it when I see it. 

That's been my day so far, and it's barely after noon. I think I'm ready for a nap.

Oh, in case you're curious, here's a table from NPR.

Multiple Sclerosis Drugs Cost Much More Today Than When They Were First Introduced

DRUG	DATE APPROVED	INITIAL COST(IN 2013 DOLLARS)	2013 COST	INCREASE
Interferon-β-1b (Betaseron)	7/23/1993	$18,591	$61,529	231.0%
Interferon-β-1a IM (Avonex)	5/17/1996	$12,951	$62,394	381.8%
Glatiramer acetate (Copaxone)	12/20/1996	$12,312	$59,158	380.5%
Interferon-β-1a SC (Rebif)	3/7/2002	$19,763	$66,394	236.0%
Natalizumab (Tysabri)	11/23/2004	$31,879	$64,233	101.5%
Interferon-β-1b (Extavia)	8/14/2009	$35,644	$51,427	44.3%
Fingolimod (Gilenya)	9/21/2010	$54,245	$63,806	17.6%
Teriflunomide (Aubagio)	9/12/2012	$48,349	$57,553	19.0%
Dimethyl fumarate (Tecfidera)	3/27/2013	$57,816	$63,315	9.5%

Notes

Tappa Tappa Tappa

The dance school where my daughter has been dancing since 2007 is offering adult beginner tap lessons this year. I'm seriously contemplating taking lessons.

A few years ago, I decided to try a tap dancing class. I bought the shoes and went to several classes. I ended up dropping the class because it was NOT a beginner class, and I just couldn't keep up. I was almost always lost, and it was a performing class; meaning you'd be in the recital. I'm hoping with a beginner class, I won't feel so uncoordinated. I'm assuming it's a non-performing class as well, so I won't have mountains of pressure.

The timing of the class is darn near perfect, too. It's during my daughter's last class of the night, so I'd HAVE to go to the studio anyway, I'd just have to leave earlier for my class.

Since my daughter has been dancing there so long, I know lots of other people from the studio, including some who are also thinking of, or already committed to taking the class. I won't be alone, lost in a sea of unfamiliar faces. There are so many pros that I'm pretty sure my decision is made.

Ahhh, but the cons. The more glaringly obvious questions are whether I have the stamina and balance to take tap lessons. Will my tingling legs interfere with tapping? Will my fatigue keep me home? Will I cramp more? I suppose it will be a matter of trial and error. I'll just have to see if my body can do it.

I have always wanted to be able to tap dance. I don't know what it is about tap dancing that it holds such a fascination for me, but I love it. Maybe it's from watching all the Fred Astaire, Bing Crosby, Gene Kelly and Danny Kaye musicals as a kid, I don't know. Do I expect to be even as good as the bad dancers from those musicals? Not a chance in Hades!

When we did The Great Purge earlier this year, I had my tap shoes in my hand to donate. The reason I kept them as long as I did was because I thought I'd pass them along to my daughter when her class switched over to tap oxfords. Little did I know back then that her shoe size would be way beyond my shoe size by the time her class went to oxfords. But, I kept them, for no good reason, actually.

Except that maybe in the back of my mind, or deep in my heart I was hoping that the studio would offer beginner classes.

So, here we are, looking forward to another year of dance, only this year (hopefully, maybe), I won't be just a dance Mom*. I'll be a dancer. Sort of. Okay, well, even if I'm not an actual dancer (meaning if I'm truly awful at dancing), I won't be just sitting on the sidelines.

I'm reminded of an episode of Friends (season 1, episode 21) when Monica had her credit card stolen. The woman who stole her credit card signed up for tap lessons, and naturally Monica wanted to go to the studio to see the woman living a life more interesting than hers on her credit card. At the end of the episode, the teacher says to Monica, “You're doing it wrong”!

Monica replies, “Yeah, but I'm doing it”!

I imagine that's much how my dancing will go.

*Oh, and for those of you familiar with reality TV, I'm not that kind of dance Mom. I happen to have a daughter who dances, ergo, I'm a dance Mom.

The Battle of Who Cares

Aside from the obvious day-to-day struggles I go through all the time, I've been battling a much stronger force; the battle of “who cares”. The battle of “who cares” is a tough fight because when I sit down to write, the voice is screaming at me, “WHO CARES”!

When I started writing last summer, I told myself that I was writing for myself, and I meant it. I'm still writing for myself, but I don't want to write boring or uninteresting stuff, either. I've temporarily lost my perspective.

As awful as my experience was with Copaxone, it certainly made for some interesting stories. No, I'm not willing to go back on the Copaxone just for more interesting ideas. I'll stay on the side-effect-free Tecfidera until my blood work tells me otherwise, thank you very much.

I don't think the Tecfidera is helping exactly because I've had some fairly major flares, but I've also had life-changing events. It's impossible to know if the exacerbation would have been worse without the Tecfidera.

Today, I have a weird pain in my left elbow. It feels like I hit my funny bone really hard. It hurts and tingles at the same time. I don't recall hitting my elbow hard enough for this to be happening, but who knows? I took some Tylenol, so hopefully the pain will subside, at least a little.

I keep digging for my muchness- at least the muchness that I have left- but so far I'm coming up empty-handed. I'm feeling like the bag of potato chips I recently bought. The idea of potato chips was in the bag, but the chips themselves were tiny excuses for chips.

I'm thinking the best way to get over this would be to keep plugging away at the keyboard. So that's what I'm doing. Even if a post isn't exactly what I was expecting, I've got to start somewhere, right?

So for today, this is what I've got. It ain't much, but until my muchness surfaces, it will have to do.