This past week, World MS Day was observed. It is a day when many countries send out information via various platforms to help raise awareness of Multiple Sclerosis, as well as helping the general public to understand what MS is.
Our oldest daughter, Anna, was diagnosed with MS at age 13. When many girls at school were worried about their middle school homecoming outfits, Anna was having MRIs, spinal taps, and numerous blood draws. Her MS was very aggressive, as it is for many of the children diagnosed with this disease. That meant we needed to spend a lot of time in doctor’s offices, outpatient infusion centers where she received steroid treatments to calm her relapses, and had to make modifications on some activities at home. She took a lot of our time and attention, which meant her two sisters felt a little left out at times.
A few years later, Jonathan was also diagnosed with MS. We haven’t spent as much time in doctor’s offices as we did with Anna, but his disease has caused a change in the way we live at times.
It wasn’t until Laura, our youngest, was in a college psychology class and wrote a paper about shadow children that I realized the affect that chronic illness has on the rest of the family. I believe that sometimes, when you are living it, it is more difficult to see the changes in the “healthy” family members. We didn’t intentionally pay more attention to Anna, and we didn’t mean to make them feel as if their issues weren’t important…but yet, that is what they have sort of felt. Both Christina and Laura have assured me that they don’t hate me (whew!), and now when they are older they understand that living in the shadow of a disease wasn’t something we wished for them.
One thing that I have learned from Laura is to value the time spent with your family members. I love spending intentional time together with each of my kids, where we can have fun, be serious, laugh, or cry together. While we can’t change the past, hopefully others can learn from our experience.
Check in with the family members of those living with a chronic disease. Ask how they are doing. Grab a cup of coffee, or go for a walk…something that is normal and mundane may be exactly what they need. Just don’t forget about them.
June 23rd is Jonathan’s birthday. We like to celebrate big here, but this year, Jonathan’s gifts were larger than normal.
Eight years ago today, Jonathan was diagnosed with Multiple Sclerosis. When we went for a walk around the farm yard, and he was telling me what led him to see the doctor, it was heartbreaking. Our oldest daughter had been diagnosed with MS four years before.
One thing I distinctly remember, is how we talked about how we don’t know what the future will bring as far as disease progression goes, and that was a scary thing. I made one request of Jonathan that day. To not give up on life, and to live his life to the fullest.
That request led to a purchase of used jet skis, and a new found hobby that he loves. Those jet skis have had many hours on the water, and many good memories were made. It was time, however, to upgrade. So, for a combination of Father’s Day and his birthday, Jonathan received a pair of Sea Doo Sparks this week. While I am more than content to keep my feet on land and take photos, it makes me so happy to see him have fun. The troubles that often accompany farming are forgotten while he’s on the water. It’s so fun to watch the joy on Jonathan’s and Laura’s faces as they race across the water.
Happy Birthday, Jonathan, and thank you for not giving up on living your life.
This post was written by my daughter, Anna (Olson) Meyer. Today, October 13, 2014, is the 10th anniversary of her Multiple Sclerosis diagnosis. Read on about life from her perspective, and learn why we call this anniversary a Celebration of Life. This post is also being published on her blog, Smiles Squared.
On this day ten years ago….my mother and I traveled an hour away from my hometown to visit my neurologist to receive my official diagnosis. The results from the spinal tap had come back, and finally, Dr. Nelson would tell us for sure if I had a pinched nerve, MS, or a brain tumor. He had given all three of these as possibilities as to why my entire left side had stopped working normally, but his theory was that I most likely had MS. That is what we knew before we got to Wilmar, MN. I was CONVINCED that it was nothing but a pinched nerve, and for some unknown reason my name had been on the prayer list at church for the last few weeks.
On that day, ten years ago, I was officially diagnosed with Multiple Sclerosis. I was started on some medical steroids, and I was shown how to use the Autoject for my three-times-weekly medicine shots, just under the skin. (It would be another year before I gave myself those shots….and, of course, I was bribed—because what other way is there for a kid to be willing to do something unless they get something in return?)
Since my diagnosis, we have called the anniversary of that day my “celebration of life.” It is the day when I can look back on a year and see all the things I have been able to do, even though I have MS. On this ten-year anniversary of this life-altering diagnosis, I reflect on the things I have accomplished in my life!
1. I’ve been on all sorts of cool vacations and stuff.
Who cares if I had to rent a wheelchair to go Disneyworld? I went to Disneyworld! I’ve also rented wheelchairs at zoos, and even the Minnesota State Fair. Those places take a lot of walking, and I don’t quite have the energy to walk all that way. But I still got to experience it and enjoy my visits! Those places, by the way, have been the only ones I rented a wheelchair for. I can still walk! ….just not super far. I’ve been to the Wisconsin Dells and the Black Hills of South Dakota, just doing the tourist thing because I could. In high school, I went to a youth gathering with a church denomination, and had an AWESOME time with my cousin Jenni and my aunt Sheryl! In college, I went on TWO summer mission projects. Just because I have MS, doesn’t mean I can’t have fun! So I have to plan a little extra, and the south is typically a bad idea in the summer. I STILL LIVE LIFE.
2. In middle school, there were no cheerleaders, and I wanted to be one, so I petitioned and found a coach for middle school basketball cheerleaders!
The January after my diagnosis. I am second from the right, front row. You know, the one with the big smile?
We were moderately good. Our most difficult move was when one cheerleader stood on the thighs of two other cheerleaders, but we stayed safe. I wasn’t really into watching sports, but I did notice that when our middle school teams had cheerleaders, the whole “crowd” was pretty riled up. You know, for a middle school game. Smiley face. Of course, this cheerleading team kind of left the middle school when I did. I always wanted to be a cheerleader. Our high school had football cheerleading, but by that time, I just wanted to play in the pep band. (We see why I became a music major?)
I was also on the golf team for a few years before the walking became too much for me and I acknowledged that I wasn’t that great. But it was fun!
3. I got my black belt!
Actually, I started Tae Kwon Do in 4th grade. In 7th grade, I got my junior black belt. I was diagnosed with MS in 8th grade. In 9th grade, I got my 2nd degree junior black belt. After I turned 16, sophomore year, I got my first degree adult black belt. And senior year, I got my second degree adult black belt! I was involved in Tae Kwon Do for 8 years; 5 of those years after having MS. I remember difficulty in my first tournament after being diagnosed, but then I just focused on what I COULD do instead of what I COULDN’T. I taught and I was a referee as my level advanced. I became inactive in TKD after I graduated high school, but I will always be a second degree black belt!
4. I finished high school AND college.
One of my college professors once told me that he had never seen such determination in a student. So I wasn’t the best. Who cares? I did as best I could. I was DETERMINED to finish well and I learned a ton while in those college years. I wrote a post about what MS has taught me over the last decade or so here.
5. I played a senior recital of percussion music.
At that time in my life, I had skill, because I was playing on these instruments all the time. I played a piece on the marimba, the timpani, some toms (drums), the vibraphone, and even flower pots! (Videos of all these can be seen on YouTube.) I loved that season in my life, when I could go from instrument to instrument in the percussion section in an empty band room and just PLAY.
6. I’ve had a “grown-up job” since I graduated.
Even before I graduated, I’ve been giving private lessons. According to some of my other music-major friends, I wasn’t charging enough, but still. As soon as I graduated, I got on the substitute teacher list for a few different school districts. And when I got to Kentucky, of course, I began working at a music store—giving lessons! And now I’ve started up this Mary Kay business! Before I was married, I paid my own rent, bought my own food, and loved when Mom and Dad came to Sioux Falls to take me grocery shopping. And now, I don’t get many visits from Mom and Dad (because I currently live, like, 20 hours away), but I still get care packages of coffee brands that aren’t sold in the south. (Thanks, mom!)
7. I’ve written, like, four novels.
Only one I’ve written is decent enough for me to want to publish it, but I do want to publish it! I also write shortstories and blog posts all the time. And other little things when I feel like it. I’ve kept a journal since I was diagnosed! And things have just kept moving from there. I don’t believe they will ever stop, either.
8. I wrote music for a class in college and directed an ensemble playing it in church one time.
So I maybe didn’t take into consideration that band instruments play better in flats than sharps. And that high school students can’t pick up music as fast as college students. But I was so proud of that piece! I even published my college friends and I playing the piece here on YouTube.
9. I GOT MARRIED!
My handsome groom and I at our wedding this last July.
Just this last summer, if you are keeping up with me at all on this blog. (I’ve kinda talked about it a lot….) Never did I ever think I would meet a man who saw ME past the MS that has been so apparent in my life. I have a limp, which is the most obvious symptom to the world and the first turn-off to anybody who sees that instead of me first (which is pretty much everybody). But Dr. Wile E. Coyote, while he notices my limp, only notices if it’s a bad day or a good day and helps me stretch sometimes. Or if he’s walking with me, and I pull him around. (He’s not as sturdy as my sisters when they’ve walked with me, hehe.) I love Dr. Coyote, my best friend, and he is what I need. But God knew that. And I am privileged to be starting this med school journey with him and trusting the Lord until graduation, and beyond! (Like, forever. Every. Minute.)
10. I have become stronger than I thought possible.
Physically, mentally, and emotionally. I have had to push past the limits of where I would want to quit because something is hard. Being diagnosed so young (at 13), I had to face many decisions and situations that most teens shouldn’t have to face. I thank the good Lord for my always-supportive family who helped me so much!
On this day in ten years, who knows what things I’ll accomplish that I’ll be able to remember? The thing about having MS is that though we have to plan a little more, sometimes sleep a little more, and maybe be careful of what activities we chose to partake in, we still live normal lives. I haven’t felt normal for years, but I wouldn’t have it any other way. I would love to wake up one day and the Lord tell me, “You’re cured!” But I know that when people see me walking with a limp, unphased, it brings God more glory.
Anna E Meyer
Happy Birthday, Anna! Today, on Thanksgiving Day, our oldest turns 23. When she was born, Jonathan’s mom said, “Oh, good. Being born so late in November, she won’t have to worry about celebrating her birthday on Thanksgiving Day.” Her first birthday fell on Thanksgiving that year!
Anna just finished her student teaching, and will be officially be a graduate of Augustana College. She has many interests and talents, and can’t wait to see where God leads her. We are so proud of her!
Anna’s strong faith, and positive attitude have helped to carry her through tough times. Typically, junior high girls are trying to navigate a new school schedule, boys, and hanging out with friends at football games. Anna was dealing with a diagnosis of Multiple Sclerosis, and the loss of friendships due to a misunderstanding of what it means to have MS. Her classmates weren’t always very kind to her, but that only made her push harder. She doesn’t want to be defined by this disease. She wants to be known for her sunny personality, her music, and her faith.
Hanging out with Anna is always fun. She has my sense of humor, and her dad’s sense of adventure. Jonathan and Anna have a great bond, and I love that they can have so much fun together. It doesn’t matter if it is the Alpine Slides in Keystone, SD, driving go-carts, jet skiing, or playing Rummy, they will find a way to have a good time.
I am so thankful for Anna! I am thankful for the sunshine she spreads to others, for her heart of compassion, for her stubbornness when she could have just given up. I am thankful for her friends that have seen past her limitations, especially the boy she brought home this weekend. I am thankful that her dreams are becoming her vision. Happy Birthday, sweet Anna! I love you!