Standing Out

Dear Albert,

Thank you for sharing such a personal account of your adventures with your son. These memories allow me to travel vicariously to unattainable locations, filling my mind with harrowing images of clinging to a mountainside buffeted by the winds and visions of azure skies, jagged peaks of violet and brilliant white. Your lessons of perseverance and strength are of value to us both.

My passion has always been the lure of travel. I love everything about it, investigating countries and the treasures they hold within their borders, the often tedious and unforeseen transportation challenges en route and eventually the destination itself. The one advantage to knowing that you have MS for as long as I have is that the disease slowly creeps into your life, forcing you to accommodate to its demands over time. By knowing that it would eventually catch up to me I made a concerted effort to do as much as I could, not waiting for the right time or if and when there was enough money. A definite highlight was a 7-month trip around the world with my husband and two kids. We meandered with a general direction but no real agenda, lingering where we felt a compulsion to stay and discover our temporary home. While I love to travel without a fixed schedule, I must admit, most people would decline a repeat invitation to travel with me. My reputation was garnered as a result of the fluid and unstructured nature of my travel style which has led to less than comfortable nights in cars, bus stations and questionable hotel rooms. This unencumbered means of travel has also led to the discovery of amazing places and unexpected adventures.

For me, this trip marked the last time I would travel without serious limitations to my mobility. I miss the freedom of being able to pack up and go, not worrying about stairs or worse, inaccessible toilets. It is easy to opt out. It’s easy to make excuses that it will be too hard (mostly for those that travel with me). It’s easy to convince yourself to stay home. To become invisible.

I refuse to be invisible! I already tried this and was frightened by just how easy it was to allow yourself to feel obsolete. Quit your job, refuse invitations from your friends and make excuses for not participating and after a short time people will assume you aren’t coming. I was embarrassed for being in a wheelchair, as if somehow it made me weaker. Somehow, I had made a choice to give up and lost my ability to walk because I didn’t work hard enough. It took a long time to forgive myself for this self-imposed sentence. If I am truthful, there are still days when I give in to these fears and sulk around my house making myself and everyone else miserable.

This weekend was not one of those times. We had glorious t-shirt weather in January. Outside patio, beer drinking weather, and I for one was delighted to be out and about enjoying it. With a cold beer in my hand and the sun on my face I looked around, no one was gawking, no one really noticed me. If I was invisible it was not because I stood out, but because I blended in. If I am not wanting to be imperceptible I now realize it is up to me to do something to stand out. I am like any other mid-life adult who needs to work harder to continue to define their life and redefine their goals. The traumas I have saddled myself with are excuses and have allowed me to opt out. Not because anyone expected me to. Not because I couldn’t do the work but because I have allowed myself to buy into the excuses and the trite role that we associate with disability.

My next trip will be to Guatemala. I will research hotels with accessible toilets but not much else. I will probably not find a whole lot of people interested in going with me. I will be free, adventurous and utterly visible!

Sophia

One thought on “Standing Out

  1. What a beautiful post, Sophia ! Your writing style is very engaging ! This resonated in particular with me: “It is easy to opt out. It is easy to make excuses. It is easy to convince yourself to stay home. To become invisible.” Yep… As we’re getting older, we all struggle with that ! Many thanks for reminding us !

    Liked by 1 person

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