If It All Changes Tomorrow
Last updated: November 2022
For me, MS appeared overnight. I went to bed worrying about an upcoming exam and was none the wiser that this night marked the spot for a considerable shift in my life trajectory. Upon waking up the following day, one of my legs felt tight. As I craned my head toward my chest, it tightened even more. The cold and tiny water drops that splashed on my feet as I turned on the shower made my entire leg weak and spastic. I was about to discover that a biological pin pulled some time ago had finally exploded - and would keep exploding.
Was it from smoking? Could I have changed this? Was it inevitable, or could I have had some more of my 20s before this happened? Finding something to blame for my MS has always felt unproductive, but as story-telling goes, we want a beginning, middle, and end. We fill in the unknown gaps of future events to find a semblance of control.
A sudden MS diagnosis but old lesions
When my first neurologist broke the news of my diagnosis, he mentioned that my lesions looked "old." He explained that symptoms could appear years after lesions form. So it seemed MS was not new to my body. But the symptoms were. And they were difficult to ignore. I had trouble accepting that it would be me and MS for life.
Processing my future with MS
After a few mental wrestling matches (which I lost), I had to succumb to the reality in front of me and commit to my new life. For me, that meant answering a lot of tough questions about myself. With time and experience came answers. But, one critical question remains: Will I ever get better?
Whenever someone talks about improvement, I remain emotionally distant. It's getting harder to remember what life was without MS. I've stopped believing in the most romanticized memories of what I think my body used to be. Some minor symptoms went away when I started treatment with DMTs, but my symptoms have pretty much looked the same since 2014. Imagining that tonight could mark the spot of another altered life trajectory, but this time in a starkly positive direction feels abstract. Just thinking about it feels like I'm trespassing on forbidden land.
Balancing reality and hope
The gap between pre-MS and today widens every day. "Before" reads like a myth rather than a memory at this point. So should we forget or cherish the memories of the past? Or, maybe remain emotionally distant yet optimistic about the future? Or both?
Maybe because the future feels abstract, I try to avoid it as much as possible. We can begin writing conspiracy theories about tomorrow if we start predicting and guessing. Fortunately, I don't worry that I will wake up tomorrow and find that MS wreaked havoc on my body in my sleep. That my twice-yearly Rituximab infusions stopped working, and my immune system sprung back with full force. And maybe that is a sort of hope; no matter what happens next, I believe I will be able to deal with it. And the humility to know that it's probably outside of my control. We can always depend on the consistency of change, but rarely on how it will materialize in our lives.
The burden of uncertainty
When I tell my story to people without MS, they seem especially troubled at the idea of living with the uncertainty of the disease. They tend to keep their composure until I tell them the story about that morning I shared at the beginning of the article. Most people don't want to consider the risk of it all changing overnight. Or, that some time ago, the safeguards of our immune system unexpectedly stopped working. Of course, no one wants to imagine that!
We would never be able to live our lives if we knew what was coming. I think that goes for change in any direction - we won't know what it will mean for us until we do. But finding a balance between not reminiscing on the past and staying hopeful about tomorrow, can feel like a momentous task.
There's no easy answer
Change and uncertainty tend to go hand-in-hand. MS encompasses both of them, sometimes daily. So it can be tempting to want to take out the crystal ball and try to plot down the coordinated of the future. Or, to envision our lives without this disease. When we do so, we risk creating a false narrative that makes life with MS pale in comparison to an unrealistic degree. We might want to leave room for hope but not depend on it. Or maybe not. Maybe we fight tooth and nail or remain optimistic to a fault. There is no easy answer to this question.
If it all changes tomorrow, in whatever direction, that will be out of our reach until it's not. And maybe, we should leave some of the past in the past. And perhaps also leave some of the future in the future.
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