It was one of those days that just make you feel good about life. Actually, it was really a lovely string of events combined with some well timed comments from friends old and new. Those kinds of moments are rare, and their wonder was not lost on me. I lived in the moment, and my heart smiled. I told my son about it and he said “I’m jealous. You are living the dream”. He was being sincere, but his words caught me off guard. Living the dream? I’m learning to life with life altering conditions, Trying to figure out how to make a living in my new body, living far away from help and civilization with no hope of my house selling anytime soon, that is the dream???
There is a flip side to living with exclamation points. I have long said that it is precisely my greatest strength that holds my greatest weakness. When you have a big heart and live out loud, unfortunately the reverse is also true. The heart that is open to love deeply is also open to great pain.
I pride myself on being tough. Staying strong in tough times is just what I do. Usually. You see, even the heartiest of souls have times when no matter how hard they try there is no strength. In my case that usually means there are long held in tears that stream down uncontrollably. At as is often tends to happen with me, it is usually at times when it is rather inconvenient. Tonight was one of those times.
I had the privilege to be interviewed about a month ago by a classmate in my blog writing class. You can find his blog at donaldhuffman.com. It was a really neat experience and he asked questions that really made me think about the answers. I am so happy to have had this opportunity. He has recently posted this interview to his blog and it is my pleasure to share it with you.
This week I have another interview for you. I write a lot on this site about overcoming the internal resistance that a writer faces and Kristen Elisabeth Steele exemplifies this to the utmost degree. In the later part of 2016 she was diagnosed with transverse myelitis, multiple sclerosis, and optic neuritis all within a few short months of each other. Faced with despair and the very stripping of her own identity, she poured her pain and her triumphs into a blog she started called Hope4Life180.com. Deeply personal, self-effacing,and funny, her blog is a raw look into the world of a mother, a teacher, a writer, and a person living with a debilitating condition. On top of the blog, she is also a published author of several childrens’ books which you can find on Amazon and createspace.com. You can find the links to buy her books at the end of this article. This article has been transcribed to text from a telephone interview.
Anticipation. It can be wonderful, like when you are waiting for Christmas or a special event, but it can also be immobilizing when accompanied by fear.
I started a new med this week. It was one I had been avoiding for years. Methotrexate. It’s actually a cancer drug. My rheumatologist wanted to start me on it years ago, but I resisted. The possible side-effect list alone was enough to make even the heartiest patient think twice. It was recently brought to the table again, by first my rheumatologist, and then again my MS specialist. I tried to sound convinced, but I still tried to duck out of it. It wasn’t until my MS specialist kindly, but honestly reminded me that MS is a lifelong disease, and it is important to get a good handle on it to start with that I knew the time had come for me to make my peace with it.
The book "Option B" by Sheryl Sandberg and Adam Grant was of great comfort to me as part of accepting and adapting to this new journey I am on.
So imagine my delight when I discovered that they had a website by the same name designed to bring people together in support. I submitted my story to them and they recently published it. What an honor! It's mostly a summary of what has happened in my life and my Option B journey. If you are interested, you can find it here.
Here's to HOPE and Option B!
It’s been a “Dear Evan Hansen” kind of month. The kind that hurts and shakes your fiery resolve and makes you want to hide and disappear. Life can be like that. Most of the people I know have had moments like this. I suspect most people do, we just get very good at hiding it. It may be fun to watch drama on television and in movies, but in real life, it is not so fun.
I recently watched the Hallmark movie “Signed, Sealed and Delivered: Lost Without You”. There was a line in it that really resonated with me. One of the main characters Oliver said to his friend, “You have to trust the timing”. I know it is just a movie; still, the expression has stayed with me. When life takes an unexpected turn and you have control over little, it is comforting to think that maybe there is a bigger plan or something good still waiting to unfold.
Kristen is a former kindergarten and special education teacher with two wonderful grown children, two precious fur-baby dogs and a mischievous cat. Diagnosed with Transverse Myelitis in September of 2016 and Multiple Sclerosis in December of 2016, and Optic Neuritis in January 2017, life has changed in a big way in a short amount of time. But HOPE springs eternal as she rediscovers and reinvents life along the way.