It might have been an old Batman episode. Or maybe it was an adventure movie where the good guy is trapped. Whatever it was, the picture in my head is clear. It’s a room with no doors. It has two stationary walls and two walls opposite from each other that move. There is nothing in the room except a person.
The two movable walls begin in place, but then start to move inward. The person trapped inside realizes the space of the room is getting smaller. It becomes obvious that if the walls continue to move until they are flush together, the person inside the room will be crushed.
Yikes, I just searched for a picture and didn’t remember the spikes.
In a way, my life with MS now mimics the image of this story I viewed on the screen long ago. As my condition progresses, my isolation increases. The world is closing in on me, narrowing as I watch people and places disappear. It will assuredly continue, limiting my contact with the outside world until I have become almost completely insignificant to those who do not enter the door of my small environment.
Maybe, if I had started out a quiet, withdrawn person, the adventure of this change would be easier; but what a rough, bumpy road it has been to transition from an extrovert who loved to be out and about with people to a life so limiting. Some mornings, I wake with the optimism of a child on Christmas morning, eager for what the day holds. Other mornings I wake with the optimism of knowing I am one day closer to heaven.
I love my home. Redesigned with my specifications in a remodel extravaganza (see the “Remodel” category on the right of this blog), its walls are friendly to my machines and it accommodates my needs. While the rest of the world often presents obstacles, I move freely here. I am also very grateful for the man I live life with. The best part of my home is the one I share it with. He puts the happy in my home.
This place called home. It is my sanctuary.
But this place is also my prison. Its walls, while protective, divide me from the outside world. I’d like to be there too. Often, weather dictates whether I am able to join the world beyond these walls. Freezing weather affects me by freezing my limbs and hot weather seems to melt me from the inside out. So when weather seems extreme, I remain in the safety of my climate controlled walls. Days can come and go by without much activity and I lose track of which one it presently is. The calendar becomes simply an array of numbers. Some months the numbers could be scrambled and I might never notice.
However, there are good adventures I live. People who enter the door into my closing world bring life with them. When they walk in, they bring their world and stories of all the activity there. I love hearing stories and love the people who carry them to me. Creating a door into my shrinking room brings sunshine into the day and places the numbers on the calendar back in order.
The computer is yet another link to good adventures, but that deserves it’s own blog post.
The telephone is another avenue for the world to break into my closing world. My kids call on the phone to share their many adventures. Those adventures are a string of stories that put spark in the days of my life. Through descriptions of their jobs, their classes, their trips, their volunteer experiences and their music, my life stays interesting.
Sometimes, a friend will call with a story about the last week or month of his/her life and I am thoroughly entertained by those comings and goings and doings. Through them, I live much better adventures than the one I saw on the screen years ago.
If there’s someone in your neck of the woods whom you haven’t seen for a while and you think that person might be living a shrinking room adventure, imprisoned safely within the walls of his or her home, go visit or call. Tell stories. Bring the world in to that person. It makes a difference.
There is nothing I can say to make your life any better. It is no comfort to know that others are going through the same thing. Stay strong and positive, difficult as it may be, and keep smiling
People taking time to comment on my blog makes me smile. Thanks!
You had me with the picture of Batman–the REAL Batman.
Yeah, the isolation can be difficult to manage. Exercise & movement help shoo away the blues.
Sometimes I realize I haven’t left the house in a week. What do I have to show for that time span? Maybe if I was to be abducted by aliens that would give me something to do.
Realize how your writing helps so many who are in the same situation as you.
Keep at it. Keep plugging away. And keep sharing your wealth of life!
Oh Sock, I’m think being abducted by aliens could be worse than MS.
” The world is closing in on me, narrowing as I watch people and places disappear. It will assuredly continue, limiting my contact with the outside world until I have become almost completely insignificant to those who do not enter the door of my small environment.”
You are very significant to so many people and will be long after you are gone. You have shown me much through your blog and so many others I am sure. You are held in high regard by many of this I am sure. Remember this from the movie “A wonderful Life”?
“Strange, isn’t it, how a man’s life touches so many other lives? When he isn’t around, he leaves an awful hole, doesn’t he?” Clarence, the angel in “It’s A Wonderful Life.
You are a sweet sweet man. There are a lot of wonderful people in my life for whom I am grateful, but they are busy living good lives and I don’t expect them to come to me. It’s fair to miss being one of them and realize that “out of sight, out of mind” is a more than fair thing for them. My needs are not greater than theirs. I do have the honor, privilege and time to pray for them…and I do. I will get back to family history with occasional cathartic grieving spells. Thanks for putting up with me.
Your eloquence brings a tear to my eye. I can show this to my people so that they can understand better what this experience is like. Thanks
I’m glad you’ve found it helpful Rob, and thank you for letting me know.
Your post describes your feelings completely. Please know your honesty and ability to articulate your feelings touch the lives of many who share the same struggles. Your are indeed significant, sharing your wonderful blog to help many just as He intended. Keep up the great work and stay warm friend! 🙂