By Joanna Mechlinski
The first time I lost control of my legs, I tried to convince people it was an accident. I was a recent college grad, it was snowy outside…who was to say I couldn’t have slipped on the library steps? That’s what the concerned librarians thought, anyways.
But I was indoors and walking up a flight of stairs. Luckily I managed to grab the handrail and hold on with my upper body after a moment, keeping potential disaster at bay. The moment passed and I went about my life, quickly dismissing the incident.
I couldn’t for long, though. Although I was overall seemingly just a typical young woman in her early twenties, sudden incidents of various pains and body malfunctions began creeping into my life with alarming regularity. Before long, they had taken over entirely. I had polymyositis, a rare neuromuscular disease, as well as lupus. Every little thing I did took an embarrassing amount of forethought and effort.
Don’t get me wrong…it wasn’t as though I’d been an athlete or anything. But I did enjoy a number of physical activities, such as rollerblading or skiing. All of sudden they were a thing of the past. Even little everyday things, like climbing stairs or rising from a chair, which I’d never thought about before, were now major obstacles.
To say that I was hit hard emotionally is a huge understatement. Some say that in order to accept a major chronic illness, a person must go through the five stages of grief, just like with the death of a loved one. And in many ways, it is a death…of the person you used to be.
While I can’t speak for everyone, of course, I know that I personally did go through all the stages - denial, anger, bargaining and depression, in no particular order and many times back from one to another – before finally achieving acceptance. I raged against the world, wondered “Why me?” as I watched all my friends land spouses and dream jobs while I could barely get out of bed some days. I held private bargains with God inside my head, offering to do X or stop doing Y if it meant the end of my suffering. (Clearly, I had to be a bad person, or else pain and illness would not have befallen me, right?) I had moments and even entire days when I was so depressed and grief-stricken by the seeming hopelessness of my situation that I could not see past it. Much like the illness itself, all of these things seemed to flare up randomly, ambushing me when I could least protect myself emotionally.
I received all kinds of “advice” from friends and family (all of them people who had never experienced anything like this themselves) telling me I just had to accept my new life. Sure, that makes sense and sounds simple – in theory. Just how exactly do you make yourself stop being angry and depressed about something huge that has taken over your entire life and isn’t likely to change anytime soon, if ever? Even if you truly want it, it’s not exactly as if you can just command yourself to stop feeling certain emotions.
I’m now 35 years old and have been living my “modified” life for over a decade. While I still have my occasional moments, I have to say that at this point, I have accepted the status quo. I can’t really tell you when it happened; I can’t really tell you how it happened. All I know is that one day, I was going about my regular daily activities and the realization dawned on me. I had stopped fighting a battle I could never win.
I wish I could share some key tips with those of you currently struggling with your own pain - physical or emotional. Unfortunately, I just don’t have that ability. And from what I’ve observed, the path to acceptance is different for everyone anyways. But one thing I know is that it’s okay to grieve and shake your fist at whatever unexpected obstacles life’s thrown at you. In fact, I highly recommend it! The way I see it, going through those stages is the only way to eventually heal. For a time, you will go through all the painful emotions, perhaps back and forth many times over as I did. But know that once you‘ve purged it all, you will eventually find your own peace once again. It may seem impossible at whatever point in the journey you’re currently in. But I promise it will happen, some way and some day.
No, your life will never be the same as it used to be. But on the inside, everything that made you who you are is still all there. You are still a valuable person with a great deal to offer to the world - perhaps even more than before, as you gain insight into empathizing with the struggles faced by others.
Joanna Mechlinski is a former newspaper reporter who now works in education. She is a lifelong Connecticut resident, avid reader and animal lover who has battled several chronic illnesses since her early twenties.
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