Me and My Shadow

18983305_sThe latest experimentation with my meds sent my walking into a funk, leading me to a newfound appreciation of why I tolerate their medical mischief. It also rendered me significantly less independently mobile – in need of what I shall call a “new friend” – landing me smack in the middle of a vigorous debate between my good sense and inner stubborn mule. Seems my resistance to special assistance is alive and kicking. Notwithstanding 40+ years living with Dystonia, I cling to a foolish insistence I’m no different from everyone else.

As a cantankerous attitude sought to assert itself, complications immediately ensued when I discovered the surprising rewards of life with a walker. Let’s start with my ability to perch comfortably at random street corners – not a bench in sight – for a much-welcomed respite. It dawned on me, not only needn’t I fear wiping out from an unruly twist of foot…or exhaustion…but I now enjoy a custom seat at any outdoor venue. Further, thanks to my visible aid, New Yorkers have become more generous with their assistance.

Where I expected shock from friends, I encountered awe over the creature comforts at my fingertips. Indeed, they quickly jumped on the bandwagon, appropriating space for handbags and parcels – triggering an onslaught of speculation about the moneymaking potential of my new adventure. Inject a flash of ingenuity and my walker may very well present a portable gold mine.

As for me, I often mistake myself for a mother out for a spin with stroller in tow…only this femme is walking herself!

22 responses to “Me and My Shadow

  1. Thank you Pam for the update. You have a wonderful prospective and I am glad that your walker is ensuring your safety! See you soon.

    • Hey Paula, Great to hear from you. The walker took a bit of getting used to but sure has plenty of benefits. Seems it’s all about what makes life easier. -Pam-

  2. Thank you for sharing this experience with dystonia: your suffering and positive attitude thrills me. I hope you are well this stage of your life.

  3. Meredith Berkman

    Pses Hope you are good I love your writing, you need a book deal–really! Need a news hook for a New York Times op ed Or maybe a dating piece (modern romance) in the style section?

    Sent from my iPhone

    On Jul 6, 2014, at 4:28 PM, “Chronicles Of A Dystonia Muse” wrote: |————————————————————————–| | Dystonia Muse posted: “The latest experimentation with my meds sent my | |walking into a funk, leading me to a newfound appreciation of why I | |tolerate their medical mischief. It also rendered me significantly less | |independently mobile – in need of what I shall call a “new friend” ” | | | | | | | | | |

    • Mer, As I’ve said before, your compliments on my writing are the highest form of flattery…not to mention they mean the world to me. “PSES” takes me way back, can you believe how fast the time has flown??? -Pam-

  4. Talk about a woman who ‘walks the walk!” You go girl!

  5. I like that. I have never been reluctant to use an aid for walking, or any other purpose. I use a portable oxygen tank when I go out. Have the large one at home. Otherwise I would be confined to the house. A little girl at Family Dollar said ooh what happened to her to her mother, her mother just smiled and whispered something. The checkout girl smiled. I didn’t think the 5 or 6 year old was funny. I will never go to Family Dollar again. Most people are very nice when I go out. They don’t realize how difficult it is to lug everything around. Aids are important. Without the oxygen I would be on the floor.
    Happy for you, and your walker.

    • Angela, Always lovely to hear from you. That mother should have spoken with her daughter about her impolite behavior. It’s never too early to learn compassion for others. As we well know, every person has a unique circumstance and a bit of empathy goes a long way. I must say you have a wonderful attitude about aids…entirely practical. It’s a matter of finding the upside of the situation. Take care and enjoy the rest of your week. -Pamela-

  6. She was speaking to her mother about me.

  7. Another fantastic post Pam, and one which I am sure will resonate with many. In fact, I am going through a similar debate in regards with my own condition – the weakness and trembling have become much worse lately. Have tried using two crutches to help maintain balance when walking and standing when out, but finding using two uncomfortable and too awkward and so I now have to decide on whether to start using a wheelchair on a more regular basis. Hoping that I will make the right decision for me, and like you to find a renewed sense of independence.

    Rhiann xx

    • Rhiann, I’m lucky to have a friend who commandeered the walker for me. His mom just happened to have a spare, couldn’t have been easier. He’s my constant cheerleader and made the same argument as you about regaining my independence. Balance issues can be utterly disconcerting and it’s not easy losing our freedom of movement. I can only hope you find a solution that works for you. xxx -Pam-

  8. Hello Pam,

    first once I must admire your unique manner of writing again. As you describe an absolutely bad situation that one could mean, it is not difficult at all.
    You should your abilities use to write to write a book about your life.
    It is nicely to be read that you have a comfortable Rollator which makes you not only freedom, but also the possibility rest with a longer way also seated.

    I wished, some Dystonia-affected person in Germany would have your optimism and your joy of living.

    Many lots of love from Germany


    • Franz, Thank you for your kind words. A friend was utterly convinced the walker would make my life easier – and give me newfound freedom – and turned out he was right! Good thing I was willing to give it a try, certainly a lesson learned. Hope all is well with you my friend. xxx -Pamela-

  9. Murray Wright

    Gooday Pam, when my Mother progressed to using a walker, I bought a small fisherman’s backpack that has a seat built into it. This enabled me to sit and talk with her when she was having a rest. It amazed me the amount of friendly people that would stop and talk to us, the extra help she received in shops and so on. Unfortunately, to get help you must not only have a disability, but be seen to be seen to have a disability. Otherwise, as you said yourself, people don’t know. I love the thought of your life being just that bit better, thank you for sharing your story.

    • Murray, What a lovely story, your mom is lucky to have you. Those walking aids do make a difference in people’s behavior. My cane got me out of a formidable taxi line outside NYC’s Penn Station, a taxi driver plucked me out of the middle of the line because he saw my cane and turns out his mother uses one. Nice to see the best in people. Hope you are enjoying the summer, sure has been a hot one here in NYC! -Pam-

  10. Pamela, I have been using a walker off & on for a couple of years. When I don’t use it, I use a cane with a very broad ‘foot’.

    Just wanted to let you know that I was able to obtain a ‘cane holster’ for the frame of the walker, so I can leave the walker aside, now & then, & use just the cane. The best accessory I have is the ‘cup/water bottle’ holder that we got in the bicycle dept of a local hardware store. Worth its weight in gold!

    Thanks for the blogs…I love your POV, your stellar & humour filled insights.

    Laurie Bell, ON. Canada.

    • Laurie, So nice to hear from you. I can never get over how the Internet brings people together. Thanks for all the tips, which certainly may come in handy. My friend suggested “decorating” the walker, I’m considering that one as well. Sending you my very warmest wishes and thanks so much for reading and taking the time to comment. -Pamela-

  11. Congrats! I know my friends find my wheel chair extra useful as I have storage under the seat that they are happy to use for their purses etc. Though I drew the line at the time they were thinking on how to turn me into a “rolling bar” for DragoCon.

    • Oji, Thanks for stopping by this site and taking the time to comment. Seems there’s no end to creativity when it comes to these devices. I’ll have to remember the potential for a rolling bar, wouldn’t that be interesting on the streets of New York City (lol)! Take care. -Pamela-

  12. Roxene Sloate

    Terrific blog Pam. You say it like it is for you in such a clever way.

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