Ten months from now, my daughter’s wedding celebration will end with a reception. Thanks to COVID, different religious beliefs and cultural preferences, what normally would’ve been a wedding weekend has been spread out over a year’s time.
They self-officiated their legal union this past October.
National Sculpture Garden, Washington, DC
My son-in-law’s family hosted a beautiful nikkah the following month for their locally, vaccinated friends and relatives.
Which means that next year, on their one-year-anniversary, we’re going to celebrate with our vaccinated family and friends who will hopefully be able to fly in safely without any COVID drama or concerns.
The good news about the nikkah was that I got to wear a traditional Pakistani outfit, enjoy Desi music and culture while eating delicious, spicy food. The even better news was that I walked my daughter into a roomful of 140 strangers without tripping, falling and embarrassing the hell out of her or myself.
Like most days of my life, I did my best to hide and downplay my MS:
But make no mistake, the minute I took a step, everyone knew something was up. Now the cane tells the world I have a health problem, not a drinking problem (which is super helpful when attending a no-alcohol is present, Muslim ceremony). It’s also a non-verbal way of saying to the world, “Back up, people!” which gives me extra room to maneuver.
Honestly, using a cane doesn’t bother me that much as it also doubles as a weapon should I ever be out walking on my own. What pisses me off is not having use of my left hand. When your only good hand is busy holding a cane, you can’t walk while carrying anything. That means no shopping bags, purses, phones, dog leashes or the hands of small children.
No opening a door with one hand, while using a cane to walk through, said door.
No using utensils properly when eating out. I haven’t ordered a steak at a restaurant in years because you need two hands to manage a fork and a knife. If it can’t be cut with the side of my fork, I don’t eat it. Hell, I can’t even salt my food at most places because shakers have been replaced with fancy grinders. And yes, using my teeth to open a sugar packet when out for coffee during a pandemic, does freak me the fuck out. Thanks for asking.
So although the cane helps me stay mobile it also holds me hostage because with no functional hands, I’m limited in where I can go as well as what I can do. And even though technically the nikkah was a successful evening, I spent a lot of time passively watching it happen instead of actively participating in it.
Which brings me to my ten months to the day countdown. Per Siri there are exactly 304 days until the reception next year. 304 days to lose weight. 304 days to improve my range of motion, balance and gait. 304 days to decrease my spasticity. 304 days to be able to actively participate in my daughter’s special day and focus on her instead of everyone focusing on me.
Ironically today is also the day the Neubie I’m renting for three months, arrives.
If you’re a personal friend or relative, feel free to insert your eye-roll here. I’ve hyped a lot of shit these past twelve years that was going to give me back my mobility and independence. I won’t take it personally if you think I’m insane. But I’m giving it one last college try to try and improve my walking.
Just yesterday I spoke to a gal with MS who after a month with her Neubie is now able to walk 2 miles without limping or experiencing foot drop (as opposed to needing a cane and limping severely after walking for 30 minutes).
I heard about a mother of the groom with MS who went from being wheelchair bound to walking her son down the aisle at his wedding 16 months after starting Neubie treatments.
So after researching the device, reading the Neufit book, watching videos online, working with Randa, my fabulous physical therapist, and reacquainting myself with Dr. Terry Wahls (probably the most famous MS patient to reverse her disease process via e-stim and nutrition), who now exclusively uses the Neubie as her go to source of electrical current based rehabilitation, I decided to rent one for home use.
I even got back on Facebook (ugh) to join a Wahls Warrior Neufit users group (yea!) where I met some nice folks and learned a bunch. In other words I’ve done my due diligence these past few months before deciding to invest in this not-at-all cheap device.
Because I’m on a deadline and may only have the device for one season, I’ve decided to blog, video, photograph and/or podcast about what I’m doing throughout the winter. Here’s hoping that other Neubie users will find me and teach me whatever tricks they’re learning.
So if you’re interested in the Neubie and want to lurk around this site to learn more, have at it. I doubt I’ll post daily, but I’ll give it my best shot. If you also have MS and are having success with the Neubie, I’d love to hear from you.