Popular belief suggests that one is the loneliest number. I wholeheartedly disagree. I enjoy my alone time and don’t ever feel lonely in my company. 😉 I generally portray a positive picture, and for the most part I am coping well and enjoying life, but there are some situations that I find tougher to navigate. Being in a group of people is probably the hardest. There is a certain feeling of isolation that comes when you are struggling to keep it together and match the mood of the crowd.
Silas recently had volleyball provincials, that luckily were held locally so I could attend some games. Watching my kids participating in the activities they love is one of my greatest sources of joy. I used to revel in the social aspect as much as watching the sport; chatting, laughing and cheering with the crowd. Now it’s hard to feel a part of things. I feel removed from what’s happening, like I am watching from afar. During the provincials, one game just hit me hard. My mind started wandering, which I try to avoid in public as my emotions tend to get the better of me. We were at the Tradex in Abbotsford, a huge facility that hosts sporting events and trade shows. I began thinking, and my mind pondered the questions, How is it that in a venue this size and filled with so many people I am the one to get ALS? Why? I used to be that mom, catching up with other parents, running over to give my son a quick snack or thinking about what we were going to eat after the game. I looked around at the moms and all I could think was, I used to be just like you. One tear fell which quickly knocked me out of my reverie, and thankfully I was able to refocus and put on a happy face. I got to the parking lot before the floodgates opened. Needless to say it was a wet ride home. Lol.
About a month ago we were invited to our friends place for a dinner/pool party/get together, with our close group of friends and their kids. These are friends that I have known since my late teens, been on countless adventures with and shared everything under the sun. I consider them family, and yet I felt anxious about going, in fact I almost didn’t go at all. I explained my hesitation to a group of friends I met online, friends who are also battling ALS. Many expressed having similar feelings in group settings, but urged me to go, even if for a short time. We went and it was good; I loved seeing my husband and kids having such a great time. I enjoyed visiting with my friends, but couldn’t help feeling like I had nothing interesting to contribute to the discussion. I used to love sharing work stories and future plans, all while snacking on delicious food and sipping good wine. Now I feel removed from a lot of the conversations that are going on around me. At one point, an idea for a girls cruise vacation was brought up and I was immediately reminded of all of the fun girls trips I’ve shared with these dear friends. Instant black cloud. It’s hard sometimes, accepting that life as you know it ceases to exist, while the lives of those around you carry on. I would be lying if I said I wasn’t jealous in these moments.
My goal in writing this post is not to be a downer and get pity, it’s to be authentic in sharing my journey and hopefully show another facet of ALS. This disease is more than just physically debilitating, it wreaks havoc with one’s emotions. Writing about the struggles helps me work through them, providing insight and showing me what to pray for. I hope that in some small way I can support someone else who may be experiencing similar emotions and validate them. I am learning to live with ALS and I am grateful for all of you who are learning alongside me.
Thanks for reading 🙂
Leanne. You leave me speechless in my admiration of you. I really don’t know If I would be anywhere as strong and positive as you if I were in your shoes. You are a continuing amazement to me. XxOo
You are so sweet and also a fighter! I really appreciate your kind words. They encourage me. 🙂
Thank you for sharing and being so insightful and honest.
You are a ‘forever’ teacher to me.
Dido
Awww thanks Petra! and thank you for participating in the Calgary ALS walk. 🙂
Leanne, I love reading your blog! Selfishly, it makes me understand how you are feeling and what you are going through, somewhat ‘silently’. I see you as a very strong person, and your unique ability to share your feeling through this blog is amazing!!
I love you xx
Thanks Sharon. I love you too xo
When I am with you and not… I am mindful of the ways ALS has gotten in the way at times of seemingly everyday interactions and relationships. When circumstances change as in ALS then so does other things. Kind of like a trickle down affect. I always focus my attention on meeting you exactly where you are. I hope as my friend you always feel you can be authentic with me and talk good, bad and ugly… sharing your life with me.
From the bottom of my heart – I do ache for all you have to endure and yet out of it you rise and are the most genuine and generous person I know. You may not talk about work or meals… but our conversations are soul food to me. You enrich my heart and soul. You nourish me, inspire me and are one of my closest friends.
We’re in this together. I love you
Thanks Brooks. I appreciate how we can discuss the difficult sides of life as well as celebrate the good. Love you. xo
Leanne, It is both brave and generous for you to share your experiences living with ALS. You are still very much an educator! And I appreciate the insight you share. I can’t help notice at the end of this blog post with all you have gone through that your main purpose is to support/help others in their struggles. It speaks to the strong, giving woman you are!! Thank you for letting all of us understand more about this .
Cindi Wicklund
Thank you Cindi. You have really encouraged me.:)
Leanne, Thank you for being authentic and sharing your true feelings. It helps me and inspires me. Your beautiful spirit radiates through your words. Sending you a big gigantic cyber-hug.
Much love,
Deb 💕
Awww thanks Deb! I hope you’re enjoying your summer.:)
Leanne, I echo many of the other replies. Your honesty and inner strength are beyond amazing. I have never met you, but I am so impressed by you. I can not comprehend how hard your journey is, but I pray for you regularly.
I appreciate that so much Lois!
Leanne,
Thanks for sharing your thoughts in this forum.
Sorry for the delay in response.
It was a treat to have you and your family at our house! I try to imagine what it must be like for you in many situations such as this. I appreciate reading your thoughts. To us, you are still you. The friend we love. We want to have you guys back again soon.