Acceptance vs. Giving In
I thought my stubborn streak would be an asset when I was diagnosed with MS in 2012. I researched like crazy, needing to know all about this strange ailment and exactly how to beat it. I did't fit the MS profile in many ways and it confused a lot of doctors along the way. My little black and white world was, without my permission, turning grey.
At diagnosis I was 56 years old. I have no brain lesions, but several in my spinal cord. The doctors thought the lesion at C1-3 was a tumor so I had surgery on my brain stem to rule out that possibility, which they did, but there were no clear answers as to what it actually was. Is. My lesions don't grow but they don't scar. They stay active and light up with every MRI. There were three O-bands in my CSF so the diagnosis of MS was made. A relief. Now they could fix me.
I've been to every MS specialist in my area but stopped when I landed at Mayo. I call it the Nordstrom's of health care. It's pretty and clean and there is even live entertainment! Yep, when entering the holy grail of Mayo Clinic you're greeted by the gentle sounds of music coming from a grand piano in the lobby. I am so out of my element there, but the doctors spend TIME with me and talk to me and answer my emails and don't yell at me when I don't do what they say. Hold grail, indeed.
But still, downhill I go. No matter how hard they research and how many tests I have, I get worse and I'm beginning to finally realize that there is no fix for this. I've gone from reading "scholarly articles" to reading about you...what you write. Your stories have been the most helpful and realistic form of research I've found. I've learned that, along with all of you, I am stuck with this thing and there is little we can really do about it except try to manage our symptoms. I've learned about spasticity and neuropathic itch, how to rest when I need to and how something as simple as hydrating can make me feel better.
I think it's called acceptance. I think the fighting and the research was exhausting me and giving me false hope. I am starting to understand, with your help, that there is no fix, no black - no white, just something in between that was foreign to me, but I'm trying. I now understand that every new symptom is not a reason to panic or run to the doctor. It's just how it is for a while, and tomorrow it will be better or something else will go awry and I am learning how to be okay with that, with the fluidity of living this way.
Is it giving in to the illness if I sway with the changes rather than fight them? Have I lost the stubborn streak that has gotten me through every upheaval life has thrown my way until now? Is acceptance going to allow this disease to march on through my nervous system without my say...or will that happen regardless of how many drugs or diets, spinal taps or nerve block injections I try.
Giving in and acceptance are really much the same though one sounds more positive than the other. One has a connotation of losing hope, the other feels peaceful and mature. Thoughtful. Decisive. The ever-changing symptoms will be there whether I fight them or not. My doctors will forever be in my corner, but I will decide what's best for me...and for now that is to listen to you and to my gut, take the pills that seem to help and discard any that make me feel crappy. Crappier.
We didn't get any say when MS decided to choose us, but, for me learning to accept life as it is now comes with a certain sense of peace, and that is enough. For now.
How many specialists did you see before finding "The One"?