Understanding What MS Actually Feels Like
I have always been an artistic and non-conformist individual. I have always worn expressive clothing and I cut my hair in far from conservative styles. This independent streak, expressed via appearance, has always been my calling card.
I cannot say why, but through all the decades of drastic style changes, I have never touched my hair color. To my surprise, multiple sclerosis (MS) did that. MS turned my hair purple.
MS Is Unpredictable
None of us can predict our own future, but for those of us with MS, we face seemingly endless layers of the unpredictable every waking day.
Sure, we look forward to events and occasions. We set the dates on our calendars and plan on what we are going to wear to work the next day. We run errands, we care for our families.
What sets us apart (sometimes a little, sometimes a lot) is that we can never really do any of these things with even a tinge of the certainty and expectation we took for granted prior to diagnosis.
MS Doesn’t Care About Your Plans
Recently, I went through a tumultuous and frightening MS flare up. I missed out on some wonderful opportunities and it seemed to take forever before I felt right again.
I felt feeble and useless. I felt like canceling the rest of my calendar year because crushed expectation is a lousy thing to repeatedly experience. MS doesn’t care about your plans. It always tries to prove it has control.
Still dealing with upper body tremors and a numb right leg, I began to recover. I began to put my family and friends back at ease. I began to take back my days.
I also began to feel a bit angry. I just could not get past missing out on the few meaningful occasions I really had my heart set on attending. They will never happen again. Thanks a lot MS.
We all know MS can be infuriatingly unpredictable with all the physical and cognitive challenges we face every single day. MS also brings with it a seemingly unpredictable and endless series of coping cycles we also must contend with.
Our states of mental wellbeing and fortitude can be challenged with constant bouts of denial and acceptance, frustration and victory, fear and contentment, hopelessness and joyfulness. These mini-battles are all layered on top of the physical and cognitive drains, not to mention our already regularly scheduled life programs.
So, Why Is My Hair Now the Color of an Easter Egg?
I rebel when I get backed into a corner. Luckily, I usually do so in positive (or at least harmless) ways. MS, the Mack-Daddy of all things unpredictable, had me in that corner.
My rebellious, tenacious side grew to overtake my down-in-the dumps, why me, state of being. I built up some steam, looked right square into the face of MS and said, “You want to see unpredictable?” Take that, MS. Purple hair.
Thus, with my crazily painted walker to support me, I stepped out of my salon, my hair hitting the sunlight in all its neon glory. I felt liberated and open to life.
I took back my independence and regained control of my free-spirited, uninhibited self.