When a child turns 18, that child is an adult, right? On his or her own. That’s the deal. Independence at eighteen.
November 14, 2015, marked my 18 years. Time for my freedom. That’s how it’s supposed to be.
Only one small thing: Freedom is not on my horizon. Even though I’m fully willing to fly away, it’s like Multiple Sclerosis is my guardian and it’s not letting me go.
Dammit!!
It’s holding me captive, and I don’t know how much more I can stand, literally. It has taken so much from me ever since I was diagnosed in 1997. I no long walk, work or drive, but I’ve tried so hard to break free.
Within the past 18 years, I’ve taken five different disease-modifying medications and have received treatment from four neurologists, four occupational therapists and seven physical therapists. All this, plus I underwent two rounds of plasmapheresis and one gamma knife surgery as well as used an ankle foot orthosis, three different canes, two walkers and at least six motorized mobility devices.
But who’s counting? After all, none of these numbers matter to MS. It’s only focused on one thing: Me.
Well, me and the more than 500,000 Americans who are living with it.
I can’t break free, but I haven’t surrendered myself or my hope. MS will not get the best of me!
A recent trip with Dan to Fort Worth, Texas, reminded me that we aren’t in this fight alone. There are thousands of scientists and millions of dollars invested in cutting-edge research that could turn the key to unlock our independence.
We traveled there for the National Multiple Sclerosis Society’s 2015 MS Leadership Conference. Nearly 1,000 people from cities throughout the United States attended and participated in this empowering event focused on wellness, research, development and advocacy.
Of all that we learned, there was one publication we received that summed up the progress of research supported through the NMSS. It stated that:
- The MS treatment pipeline has significantly expanded – there are now more potential treatments in trials than any other time in history and several new approved treatment options available.
- The promise of myelin repair is now reality – several potential myelin repair treatments have recently entered trials.
- Our understanding of the causes of MS has advanced – nearly 200 genetic variants have been identified and several risk factors confirmed.
So, I’ve marked my unwanted anniversary of 18 years living with MS, and its relentless badgering of my body indicates it isn’t going to give me my freedom as quickly as I’d like.
But maybe it isn’t the disease’s call to make. With the help of the National MS Society and the cutting-edge research it supports, my independence day is closer than we all realize.
And MS won’t have a choice because, as we all celebrated at the MS conference, together we are stronger.
