It's Normal to Grieve For What You've Lost
As traumatic as a multiple sclerosis diagnosis was for me, the trauma soon faded and the losses that followed lingered much longer in my memory.
The first loss was that of my former, able-bodied self. Although I recovered 75-80 percent of my abilities after that first flare, I was not even close to being the person I was before. It felt as if someone had taken me apart and put me back together again mostly correctly, except for those five or six parts sitting on the table that didn't seem to go anywhere. I trembled at the sight of those parts, convinced they belonged in my left foot but with no clue how to put them back.
It wasn’t the first time I’d grieved over a major loss and visited a dark place. But this was different. I’d gazed into an abyss before, but not this one. This time I gazed into THE abyss. To this day, hard as I try, I just cannot un-see it.
I retreated inside myself
But the unique way I grieved for that first loss probably saved me from sinking into profound depression. Quickly, instinctively, I asked myself what things were most important in my life, and the answer swiftly followed: going to work and doing research for my novel. I pulled the plug on everything else, watching all other distracting thoughts and feelings circle the drain and disappear. It was easy.
Easy because the upside of terror and grief was that they went a long way in helping me focus on the right things. I retreated inside myself and drew around me an imaginary veil. I went to work, came home, sat on the bed and turned on the television for white noise, surrounded myself with books, post-it notes, pens, and 3 x 5 cards. For three-and-a-half years, I read, made notes, gazed blankly at the tv screen, and sobbed. At the end of that time, I had completed my research and maintained my employment--thus maintaining my health insurance. And something else: the terror subsided and I was no longer afraid. The nightly sobbing stopped and I drew back the veil, allowing people into my life once again. The first leg of my MS journey was over. I’d made it through without completely losing control.
We all react differently
I want to make clear that not losing control was important to me personally. But that in no way suggests that people who have lost control at any time in their journey have somehow failed. Many of us have circled the drain and tumbled into the abyss, often to re-emerge soggy and jaded, but ready to press on and rejoin the battle. Many get help from others. A stoical person like me doesn’t reach out for help, and that probably explains my need to stay in control. Whether it’s instinct, reflex, personality, or whatever else identifies that thing that makes you unique in your reaction to a crisis, grieving is a natural and necessary part of the process.
Isolating myself was not a difficult thing to do. I responded to crisis and grief in a way that fit my personality traits. Since I am a very interior person normally, beating a retreat had been the way toward healing many a time before. But there can be obstacles to fully experiencing the healing that comes after the grief.
For example, I had a job to hang onto. In my world, the workplace is a stage on which to play a part assigned to us by those in power. Personal problems are to be covered, denied, blacked out with a Sharpie. No method acting allowed. Play the part exactly as it appears on the page. No fancy interpretations that would make your character stand out. Blend in. This is an ensemble play, not a one-man show. Hit your marks, say your lines, go home, come back tomorrow and give the exact same performance.
I had different needs
But I broke the rules. Three-and-a-half years of silent compliance couldn’t possibly be stretched indefinitely, but that was the expectation. When grieving turned to healing, I had different needs. I reached out for what I needed, in the wrong place, in the wrong ways, and with the wrong people. The workplace became hostile and threatening. Work friends turned out to be back-stabbers and managers took a cynical view of my vulnerability, choosing to interpret it as incompetence. I had to resign before I had a nervous breakdown. I told my narcissistic monster of a director that I was leaving because I’m a flower that needs regular watering, so I’m going to find a different garden to grow in. Both she and my manager smiled warmly. I felt like throwing up on them.
Certainly you all have stories of loss and grief and healing. You already know it is not an easy road to travel. Only a necessary one.
Were you misdiagnosed with something else before receiving a MS diagnosis?