Will my body ever feel content? When will I feel safe? When do I get to feel like I am strong enough to withstand anything? Those are questions that circulate in my brain constantly. Good days come and go, bad ones follow, and I can’t lie and say that I am not often filled with fear. The familiar shock of electric numbness, what may seem like an oxymoron to some, is blaringly familiar to those of us who live with these inexplicable sensations. One time, it meant plucking me from my routine for six months; six months where I would double over in surrender. I would realize at certain points of the day that I’d been subconsciously holding my breath, bracing myself for another shock or “zinger” as I’ve read people describe it online. Another time it meant that I’d run too far that day or that maybe I hadn’t slept enough because I was preoccupied with worrying about another family member’s health. The last time I experienced the onset of these zingers, I felt one enormous shock shoot from the back of my calf, through my knee cap, up my thigh and into my ear drum. My entire consciousness felt rattled. It happened once that day and not again for weeks afterwards. However, when it happened, I started to tear up. I felt sorry for myself, my poor body and my fragile mental state. I thought “Here we go again… brace yourself, Suni.” I knew my sanity was about to be ripped away from me because even if I didn’t feel another zinger for weeks, the emotional and mental torture of waiting and not knowing if or when I would have to double over again like that was crushing.
I was reminded of an episode that I saw years ago of How I Met Your Mother. Barney and Marshall made a bet which upon Barney’s losing, gave Marshall the right to slap him 5 times. The timing was totally at Marshall’s discretion. I remember laughing and watching as Marshall used his winnings to torment Barney. He loved knowing that he had a solid grip on Barney’s psyche and Barney crumbled waiting for his slaps. He feared them around every corner and trusted no one. He became twitchy, paranoid and utterly consumed by the thought that his discomfort was looming over him constantly. He made decisions out of fear that were, comically, to his own detriment because he was so afraid of the impending doom, that he made himself miserable. I can relate. We’d rather experience the discomfort we know and choose for ourselves, even if the pain might actually be worse than that of the unknown. Barney ended up pleading with Marshall to please have mercy and just get it over with. He couldn’t take it anymore- the not knowing if or when he’d receive his final slap.
I do everything I can to try and protect myself from sitting too long in that kind of mindset. I can’t say that I am always successful. I do catch myself saying to my left leg to just do the damn thing. “Let’s get this relapse over with. I want my mind back. I want to run again. I want to have peace and quiet in my extremities.” Waiting for my MS to slap me is a double edged sword. Of course I don’t want to relapse. Of course I don’t want my disease to progress. Unfortunately, my situation isn’t perfectly packaged into a 23-minute episode of sitcom gold. I can suffer mentally from not relapsing when I feel symptoms are present but I have no way of knowing what they might turn into, if anything at all. The chasm between what we feel and what can be seen as evidence to support it is dangerous. It leaves us constantly guessing and always in a state of suspense. I live with a real Marshall. Sometimes I feel like I’ve lost a bet and life gets to slap me when I least expect it. People constantly say that we shouldn’t live in a victim’s mentality, but I personally feel that accepting responsibility for things that are out of our control can feel self-blaming. To me, it isn’t a weakness to say that you are a victim of something. My MS happened to me, the same way that someone who is mugged on the street is assaulted and violated. Victims are often the strongest people we know. Often times, they are the ones who have the most work to do, the most to overcome. In today's society, we have somehow skewed the meaning of victimhood, almost made it a choice we think that we have. It's on us if we feel victimized by something. I don't subscribe to that way of thinking because I don't think we should tell ourselves it's our responsibility to never let ourselves feel affected negatively by things. We are human beings that need to learn how to cope and evolve and usually, that happens when we have to learn some tough lessons and when we are least in control.
I used to think it was a strength to seem like I had things under control, but it was so detrimental because I was turning my disease into something I claimed to have authority over. Because of that, I wasn’t getting the help or support that I needed. I did it mostly because I was so fearful of people thinking that I was looking for pity or sympathy, but it was never that. I shouldn’t have ever told myself I was responsible for something that doesn’t adhere to a code of conduct. After years of flinching with every misstep or false alarm, I realized that by obsessing over the possibility of triggering a relapse, I was living as if I already had. I had to find a way where I could reconcile that my symptoms were not my fault, but the actions I took to live with them were something I could take responsibility for. My focus turned to putting myself in the best mindset and physical state to be able to be flexible when needed. I never again wanted to feel as though asking for help made me a victim or meant that I wasn’t strong. Knowing that I was strong no matter what my MS was doing to me felt healing. I knew I was working hard on myself and no down days could take that work and turn it into weakness. I had to learn that sometimes, our show of strength is in how we invest in ourselves no matter what is happening to us. Our strength shows itself in how we choose to react to the scary or difficult things in life, not preventing them from happening in the first place.
Trying to “prevent” a relapse is walking the razor thin line between self-preservation and self-sabotage. The understanding that hypervigilance can be more crippling than physical symptoms, and also understanding that hypervigilance is a symptom in and of itself, was a crucial, groundbreaking realization for me. Being right about symptoms turning into a full blown relapse never made as significant of a difference as knowing how to unabashedly ask for help did. I can now proudly take responsibility in my actions that are the first responders to when I feel the onset of symptoms or a relapse. I have to remind myself not to place blame and not to feel responsible for the things that I cannot control. Personally, I’ve come a long way by learning how to advocate for myself to myself. Most of us have felt accused of crying wolf when we are experiencing our disease activity. We have to stop waiting for permission to experience our illnesses. We have to stop furthering the narrative that we alone are equipped to handle all of the complexities that come with battling an invisible illness. Most of all, we have to do everything we can to love ourselves, educate ourselves and free ourselves enough to live every day that we are able to without that feeling of impending doom. Seeing something coming that we can't stop from happening is just prolonging the amount of time we suffer. While we can predict that for many of us, a relapse in the future is likely to happen, is being right about that really that important? I think I’d much rather be happy and free from that cycle as long as possible.
When we let go of trying to always know what could come next, it opens up a lot of time to enjoy the present. We have to program ourselves not dwell on the future because it hasn't happened yet and scientifically speaking, it never will. The future is a moving target we will never reach, so focus on the here and now where life is actually happening. I know a lot of this is easier said than done, but everything starts with an acknowledgement. I love the idea that as I get better and better about observing my MS this way, my life will become more enjoyable for me and that is something I feel darn proud to take responsibility for.
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