E16 DIY The Stray Dogs' Home | Ms Do
With MS, My Home Is My Safe Place, Where I Can Be Myself
The predictable environment of my home gives me back some of what I’ve lost to MS.
By Mona Sen
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I call my multiple sclerosis (MS) the “robber grabber,” because it has done a great deal of robbing and grabbing without asking my permission. My home, however, makes life after being assaulted by MS a safe place to be. So I call my home “the great equalizer.”
Different people with MS have different relationships with our common uninvited guest — and there are about two and a half million of us worldwide playing host to this guest. In my case, not only has this condition robbed me of my ability to perform many basic daily functions, such as going through a whole day without getting fatigued, but it has also limited my ability to go out in warm weather — or sometimes just to go out at all.
One of the only places I find refuge from the daily onslaught of MS symptoms is my home. I love my home.
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Craving a Place to Call Home
My father moved us around a great deal when I was young, so I craved some place — anywhere on this earth — to call home. Having many childhood homes made life confusing for someone like me.
I have met people who enjoy moving around and don’t miss having consistent place where one’s thoughts, experiences, and curiosities can all be evaluated and analyzed in a safe place. But that’s not me. One’s home should be that place where self-reflection and growing up can all happen, and where outside forces, especially negative ones, are kept at bay.
What Home Means to a Person With a Disability
When I was in graduate school in 2001, one of the subjects in my occupational therapy coursework was “home.” We discussed topics that related to what home means to various people. We also studied much about disability, which can affect some of these people.
So in my mind I started to explore what home means to me and my disability. I immediately realized that to me, home is without question that special place where I can be myself, with manageable interference from the outside world.
When one has a disability — such as MS, which I do — personally, I need to retreat to someplace where there is no need to explain why my limbs don’t work well on a particular day. There is no judgement in my safe place. My partner and I have different schedules so we are not always together. We both appreciate the other’s need for privacy.
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The Perfect Place to Meditate Away Anxiety
I have also been using meditation as a way to combat anxiety, that pesky symptom that people with and without MS deal with. In MS, the jury seems to be undecided as to whether anxiety occurs because of neurological damage to the brain or because of other reasons.
Regardless, I feel daily anxiety because of the thin ice I live on. Unpredictability, the hallmark of the robber grabber that is MS, means I never know what’s in my future.
So I make quiet time for myself to do my breathing exercises and meditate on being calm with an appreciation of gratitude and the positive in my life. Home is the perfect place to do this.
Having a home in the country makes all of this possible, without the rigors of urban life or city noise and congestion. Nature is all around me, an added benefit with meditation.
Writing is also a large part of my creative process, something I do without any pressure — just a love for creativity. Just the space around my work environment helps me feel accomplished, an important feeling when one is dealing with a monstrous challenge like MS.
One has to create a new life with MS where small milestones are so important for one’s state of mind. I feel accomplished when I write and when I meditate. All this happens at home.
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A Place to Experiment With New Ideas
Aside from my writing and quiet time, I can move with more ease around my own home than in a strange place, outside my home. It seems that no matter how prepared I am, my disability, riddled with mobility issues and brain fog, is hard to deal with.
Since home is familiar territory, there is plenty of time to experiment with different ideas. Many of these ideas involve modifications or keeping up with changing needs that come with living with a chronic illness.
I find it necessary to develop confidence with various tasks at home before I venture out in the big world outside my own home. When I lie down for some quiet time, I get to check in with myself to see how my emotions and attitudes are faring in the midst of the robber grabber experience. My last quiet meditation revealed to me how much I love my home and the influence it has on the way I act.
Home is the safe, predictable environment in my life, which is surrounded by unpredictability. When everything else assaults my soul, home continues to be the great equalizer in the land of robber grabbers!
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