Monday, April 10, 2017

That Other Talent I Once Had

Today in church we sang a hymn that really hit close to home. It was one I haven't sung in a while, and as we sang, I was flooded with emotion.

Though my posts would never really indicate this, volleyball and basketball weren't my only loves. Music was/is another. I am obsessed with music. I love to listen to it, find new bands, discover different genres. I love to sing. I don't claim to be Taylor Swift by any means, but I can carry a tune. I even had a classmate tell me I had a "really nice alto", to which I thanked him, then promptly told him to shut up. I love harmonize, and love when I find a soprano at church whose voice blends well with mine. I also love to harmonize with Ed Sheeran, James Bay, Shawn Mendes, and One Direction (to name a few). I'm way too embarrassed to sing alone in front of large groups of people, but get me alone, and I will serenade you.

I also love to play the piano. I have played since I was 8 years old, took lessons until I was a sophomore, was called to play the organ in church, and have held various pianist callings. Until about 5 years ago. You know, when I was diagnosed with Scleroderma. I slowly quit playing due to painful ulcers on my fingers, then as my hands started to become "claw-like", it became harder and harder to stretch my hands to play chords. I quit playing for a good while, and only recently started to play again because I was asked, "Do you know how to play the piano?"

I never know how to answer that question, because, yes, I do know how to play the piano. In fact I was at one time really good at it. I can sight read pretty well, and could teach myself to play various songs in short amounts of time. I just have a hard time playing now days.

Today was a hard reminder of that. The song that we sang is "How Great Thou Art". First, AWESOME harmony in that song. The alto part is amazing. Second, this is a song that I used to play ALL THE TIME. Marvin Goldstein has a gorgeous arrangement of it. My last piano teacher let me borrow "Gift of Love" and I gave it back to her very well worn. It is a very difficult song, and took me quite a while to learn it. I would take it over to Gram's house, where I spent a lot of hours practicing and playing for her. This song was one of her favorites. Here is the version in the hymn book.


As I sat there thinking about how I spent playing this song, and the hours spent practicing, I was just reminded of the talents I once had. Playing the piano was one of my greatest escapes. I would play song after song on the piano, doing what I could to perfect each song that I played. The harder the song, the better. I have a couple of Marvin Goldstein's books, and wish I could still play them. Here is the arrangement by Marvin Goldstein. Just a slight different, right?
 
Luckily I can still kind of play, just don't expect many chords. My fingers only stretch so far, and the angle my hands are taking makes it difficult to play multiple keys at once. I can play most hymns, and unless you have a really good ear for music, you wouldn't be able to tell that I am not playing all the notes. I figure as long as I have the bass and soprano, we should be okay.

It's hard looking back on the things that you were once able to do. I try not to do it because it can be super depressing, but it is still hard, especially when you were good at something. I'm finding it harder to find things that I am still good at. I guess Sarcasm & Pessimism will have to do!

Tuesday, February 28, 2017

All in His Timing

If you follow me on instagram at all, you will know that I have some very strange dreams. For example, one of my more recent weird dream was about my friend Melanie and I being asked to pass the sacrament at some multi-stake conference being held in Cokeville, or most recently about how the singer Shawn Mendes replaced my dream boyfriend not only in the band they were in, but also as my boyfriend, and those aren't even the weirdest dreams I have had.

I have had many dreams throughout the years where I am playing volleyball or basketball, but I am not able to play like I used to. Either my feet seem to stick to the floor, or I can't serve the ball, or I can't dribble the basketball. For YEARS I have had those dreams. Even in high school.

Now, we have to back up a little more before I get to my point. My dad has been a volleyball coach for as long as I can remember. I feel like I basically grew up in a gym, and I am okay with that. Volleyball has always been a passion of mine, and some of the best memories I have are from being on the court. To say I was obsessed is an understatement. Volleyball and even basketball were my life...once upon a time.


I haven't been able to play the sport I love in almost 5 years, and the last time I played, I could barely move, and had to serve underhand. It's been hard, to say the least. Watching others play and not being able to even hold the ball like I was going to serve it has kind of sucked.


A few weeks ago I had an interesting dream. It was similar to the dreams I have had in the past, but it was different enough to make me think.

In this dream I was a freshman, and we were at the Bear Lake Freshman Volleyball tournament. I knew that I had Scleroderma, but no one on my team knew. My dad (who was our coach) knew, but Coach Toomer did not. Toomer kept trying to put me in, and I just kept shaking my head, trying to avoid being put in. (Which if you know me, I would jump at any opportunity to be in. "Put me in coach, put me in!")

I would look at my Dad and shake my head and give him a look like, "Don't make me play." Needless to say, it didn't work very well. I missed a few passes because I couldn't move fast enough, and I missed my serve because I had no upper body strength. After the first game was over, I had a little talk with my dad, who then told me to tell my teammates.

That is all I really remember about the dream, but it has bothered me ever since. Like I said, it was all very similar to my other dreams, but this one had just enough of a difference that it has bothered me tremendously.


The difference between this and my other dreams, was in my other dreams, I was in the stage of life that I am now, meaning, yes I was a 30 year old (or whatever age I was at the time) playing on a high school team (I told you my dreams are weird!) In this dream, I was a freshman, and I was diagnosed with Scleroderma, and unable to play my high school and college years of volleyball.The one thing I could think about was that my Heavenly Father knew that I would not be able to handle being sick as well back then, as I am able to now.

I know that sounds silly, but he knew how much I loved the game (basketball included), and that I needed those experiences in my life. I know He knew what playing sports mean to me. I had never thought about how my life would have been so incredibly different had I been diagnosed a lot earlier in life. I would never have had the chance to play at State, or on the All-star team, make All-state, or play in college, win our region, and travel to Missouri for Nationals.

I am grateful for this disease, but even more grateful for the Lord's timing in it.




Monday, February 20, 2017

I Believe in Laughter

For some reason all my papers for my English class have been related to Scleroderma. This one we were asked to write about something we believe in. I may have been in a hurry writing this, so it doesn't really emulate how I truly feel about laughter. Seriously, nothing is better than laughing, especially when it is quiet around, and you are the only one laughing, remembering something someone said. Being able to laugh about anything, from sharks, to One Direction, to Dr. Pepper, to pretty much the most random thing that you can think of. It truly is the "best medicine". Thank you to all the people in my life who make me laugh. I love you all.

Now to the paper...

Life is full of unexpected twists and turns. One minute you can feel like you are on top of the highest mountain, and the next you feel as though someone shoved you from your perch atop that glorious peak. Not only do you fall, but it seems as though you hit every rock and tree on the way down. When this happens, you have two choices: you can laugh, or you can cry. I think Marjorie Pay Hinckley said it best when she said, “The only way to get through life is to laugh your way through it. You either have to laugh or cry. I prefer to laugh. Crying gives me a headache.”

Laughter comes in all forms. There is the deep belly laugh, the cackle, the chuckle, the giggle, even the silent laughter. Whatever form it comes in, it tends to bring with it a feeling of satisfaction. I don’t think you can laugh and not feel some sense of happiness, even in the toughest times. No matter how bad your day may be, I can guarantee if you can take just a minute to laugh, you will feel a little better.

About four years ago I was diagnosed with a chronic illness that took away a lot of my mobility. No longer was I able to dress myself, do my hair, pick things up off the ground, and I grew quite uncoordinated. Throughout the years, I have had many embarrassing things happen, from taking a fall as I was leaving work, to trying to clean something off the floor and face-planting with no one around to help me. As I experienced some of these unfortunate events, I quickly learned that it is best to be able to have a sense of humor, and be able laugh when you are laying on the ground staring up at the ceiling. Without it, one can fall into a depressed state.

We do not have a lot of control over what happens in our lives, but we can choose how we react. I have seen the effects of both crying and laughing. Sometimes it is okay to cry. Sometimes we need to cry, but it is always okay to laugh. We always NEED to laugh. A good laugh will always help you feel better, and that is why I believe in laughter.

Friday, February 3, 2017

Dear Scleroderma...

For my English class this semester, we were asked to write a "love letter." Not to a person, but to something. The clear topic would have been One Direction, but instead I chose a topic a little closer to me. Scleroderma. I thought I would share it here.

Dear Scleroderma,
            I have had a hard time deciding how to address this. For many, it may seem silly for me to not hate you. I guess it isn’t exactly true that I haven’t had those moments when I would like to be done with you, but in reality, you have done so much for me that I can’t help but love you.
            Four years ago is when you started to make your appearance, though at the time I didn’t realize it was you. All I felt was pain and discomfort, fear and anxiety. It wasn’t until I learned your name, Scleroderma, that I felt any comfort at all. Finally being able to put a name to what I was going through helped tremendously.
            I spent a lot of time researching you, trying to figure you out. Words I had never heard before kept showing up, like systemic, sclerosis, Raynaud’s, CREST, and auto-immune disease, to name a few. It almost seemed like anytime I discovered something new about you, it brought up more questions. At the same time, though, I was able to learn how to best manage you.
            It took a while for me to warm up to you. You completely changed my life. You took things from me that I had worked hard for. It was not easy having you part of my life. You frustrated me, and you hurt me, however, the more you hurt me, the more I learned to love you.
            I think I learned more from you in 4 years than I have learned from the other 26 years. You gave me a strength I never knew I had. You taught me things about myself that I never even imagined. Because of you, I have grown tremendously. You have helped shape me into the person that I am today, and I will be forever grateful. Thank you for choosing me. I love you and look forward to the rest of our lives together.
Love,
Bre

Sunday, August 21, 2016

1st Annual Sclero-What? Volleyball Tournament

This year, the Northern Utah Scleroderma group decided not to do a 5K, but instead did a comedy night. I wasn't able to go, and was a little bummed as I have loved the race the last two years. It was fun to have so much of my family gathered in one place.

Because of this, we nearly didn't do t-shirts (that and the fact that I put it off forever, then my mom was going to have hip surgery, and it was all just last minute). For the last year, though, I have been thinking that I wanted to continue to do t-shirts every year, with the proceeds going to a deserving family, whether they had Scleroderma, or not. I had in mind the family I wanted to donate to this year, so it broke my heart when we initially decided not to do shirts. I just couldn't shake the feeling, so I asked my mom again if we could do it. She, thankfully, said yes, and we were able to get the word out and sell shirts.

Last year after the 5K when we were all at my parents house for Kennan's farewell, I was talking to my sisters about the possibility of doing a volleyball tournament fundraiser. It would be the same thing, to raise awareness for Scleroderma, however the proceeds would be given to a deserving family. I messaged my sisters and they were all on board.

Shortly after, my mom texted me and said that a girl that I went to high school with wanted to put on a tournament for my Uncle Stan, who was recently diagnosed with cancer. Stan said that he would like the fundraiser to be for me. My mom told her that I was planning on giving the funds away, so we decided to split any proceeds made from the tournament to go to two different families.
It was a really good tournament, and a great opportunity to spread awareness for this disease. There were 12 teams that participated, tables of  goodies and gift baskets that were auctioned off, and hamburgers and hot dogs were sold.
 It was really neat to see so many people show up in support of this. Even if they just wanted to play volleyball.

My sisters had a team, and while I would have loved to play, it just wasn't possible. Trust me. I tried to play with my nephew Alex. Because my arms doing turn, I struggled to hold the ball out to "serve" it. Even trying to toss the ball was a strange thing. It is so simple, right? I don't know if it was because I'm weak, or if it was my lack of coordination and super slow reflexes, but I really struggled even tossing the ball. It was a bit strange.

Anyway, my sisters had a team. There was Shari, Kandyce, McKenzie, Ashbee (SIL), Madi (Ashbee's sister), Sheila (cousin), and Lauren (friend). It was fun watching them and cheering them on.
The team.
 I still, and will forever, claim I'm adopted. Proof is below.



 Lots of memories in this gym. Lots and lots!

It was also really fun to see some people that I had played with or against all those many years ago, and seeing so many people wearing my "Team Bre" shirts (which, I need to apologize that they weren't as awesome of quality as years past. Going forward we will not be using the same place.)

One of my favorite parts, besides spending time with my family was meeting another Sclero-sister. Jennifer lives in Georgetown, only about 45 minutes from Cokeville. It's fun to be able to talk with someone else who knows what I'm going through, and knows how to awkwardly pose with me! ;) (PS, my arm does NOT straighten.)
I just have to say thank you again to all who showed up on this day. It was an amazing day, and so fun to see such support. Thank you just doesn't even cut it. Thanks to Savannah for putting this together. For finding the teams, items for the auction, and for just doing an amazing job and being an amazing person. Thanks to my family and friends for their continued love and support. You're all amazing.

Looking forward to next year already!