I have lived with MS for 9,855 days (and counting) but the last 270 days have redefined me. After spending most of my adult life hiding from, and lying about my health, I am now out and proud. I walk with my cane with dignity. I tell my story with confidence. And I say yes, I have MS, but MS does not have me.
But it did.
MS had me for more than 25 years. For a quarter of a century I went to extraordinary lengths to hide my MS from everyone but the very closest family and friends. I thought that by hiding my MS and lying about the source of my ever changing ailments, I was in control of it. It was only when I was finally forced to introduce MS to my world that I realized that my disease had been controlling me for almost two thirds of my life, and not the other way around.
I did not make my peace with MS and come to a gradual and gentle acceptance of my illness. I didn’t even make the choice to tell people. The disease backed me into a corner and left me with no other option than to tell the truth. When I made the decision to share my truth with anyone who inquired I thought my world was going to fall apart. I was sure I would lose my identity, that my strength would evaporate along with my self-esteem, and that people would no longer see me. They would see only a diseased, weak, helpless individual.
Last August I fell over in my garden and broke my right foot. Two years prior to that I fell face forward on a sidewalk and broke my right rib. And 18 months prior to that I finally received treatment for a long time broken bone in my foot. This all happened after a major relapse in 2010, leading to a month long stay in the hospital, intravenous steroid treatment and a highly aggressive physical therapy regime to get me walking again. Conveniently (for me and my lies) this relapse occurred just 9 weeks prior to a move cross-country. So while I was forced to tell friends in New York about my MS, 9 weeks later I moved 2,500 miles to Seattle. I showed up in Seattle, stubbornly without my crutches, and I didn’t have to tell a soul that less than 8 weeks previously I had been confined to a wheelchair.
That worked pretty well. I made new friends, I found a new job, I found a great MS clinic and I quietly and privately managed my disease. I even set and met fitness goals. One chilly Pacific NW August day I swam the 2.4 mile span of Lake Washington. I started new medications. One caused excruciating and debilitating stomach pains, diarrhea and vomiting and full body rashes. Another resulted in an overnight in hospital after my heart rate dropped dangerously low. And of course, I managed the daily ups and downs of fatigue, cognitive failure, vertigo, periodic incontinence, and various states of disability.
The lengths I went to, and lies I told to avoid telling anyone I had MS was exhausting. I ghosted out of parties so I wouldn’t have to explain why I was leaving early. I refused invitations for weekends in summer homes because I was afraid the sleeping arrangements would prevent me from obtaining my prerequisite 9 hours a night, and I just failed to show up for social events to which I had committed—it was easier to not show up and deal with the reputation of being a flake than to explain I had MS.
In August of 2015 I sat at home with a broken foot and yet another pair of crutches and I came to the hideous realization that even after my foot healed I needed to use a cane. My doctors had been warning me for years about the risks I was taking by walking without assistance but I had stubbornly refused to accept that I needed help.
After the fall my fear of serious injury became terrifyingly real and my MS became present in my day-to-day life in a way it never had. In an instant, I was suffocated by my disease. I was bewildered by its oppression on my daily routine and its control of my thoughts. And for the first time I was blinded by the burden of my potential demise from MS. A quarter century’s worth of lies caught up with me as I was forced to accept a new reality; the reality of MS being part of not just my life, but the life of everyone with whom I interacted. I could think of nothing more abhorrent.
By hiding my story I hid my true self. You cannot live a lie for 25 years without paying a colossal personal price. The longer I told my lies the more they fed and the deeper my fears became. I constantly questioned my experience with MS, and underlying it all were two fundamental questions, “Are you doing all this for attention? Do you really have MS?” These thoughts were pervasive, even when lying in a hospital bed being pumped full of steroids unable to walk, I still questioned myself and my diagnosis.
Those lies did not want to relinquish their position at the top of my emotional hierarchy. My lies were fat and happy, they had a cozy symbiotic relationship with my psyche and they did not want to give that up. Just the idea of purging them created a profound crack in my reality that sent me hurtling to the bottom of a deep dark lonely hole and I believed that was where I would live for the rest of my life. I was isolated, terrified and completely lost. It was without doubt the darkest time I had experienced in my 27 years of living with MS. The depression was crippling, and I could focus on nothing but my weaknesses and the devastating and irrevocable effect that telling the truth would have on my life. I knew that life would never be the same.
And I was absolutely right. My life changed.
Sharing my MS story was an epiphany—I was quite literally the hackneyed cliché of metamorphosis from caterpillar to butterfly. And every day that goes by that I embrace my MS, instead of denying it, my wings get fuller and more beautiful and I soar a little higher. Today I tell my story to anyone that asks. I am proud of my journey, I am proud of the person I have grown into and I am proud that I am walking tall and strong (at least metaphorically). My story is inspirational, and telling it does not make me appear weak or lazy or taking advantage of my illness, it makes me strong. I want the world to know that people like me, with a disability, bring incredible value, wisdom, and humor. We are not to be pitied for our affliction or lauded for our courage in overcoming all the odds. We are to be admired and respected for our personal journey. We have good days and we have bad days. We worry about our health, we worry about our retirement plans and we face the future head on, which is as unknown for us as it is for everyone.
I thought that sharing my story would be the beginning of the end for me and my “normal” life. In fact, it marked the beginning of my life. I lived a lie for a quarter of a century and now I am living my truth. Without a single doubt, it is the most powerful choice I have ever made and it has changed my life for the better. I redirect the energy I was using in order to hide from my MS, into facing my disease head on. And that feels good. I feel emotionally stronger than I ever had in my adult life. I know who I am.
As time goes by I am learning to appreciate the role MS has had in shaping me, in making me incredibly strong, resilient and tenacious. After living with the unpredictability and devastation of a chronic illness for the majority of my life, today there isn’t much that can throw me off course. I feel like I’ve seen it all and done even more. When challenges come my way I think, “You have no idea what I have done in the past, you have no idea what I have overcome to get here. Do you think this is going to stop me?” Don’t get me wrong, MS is a horrific incurable disease; a life sentence; and it impacts my life every single day. There is no escape from it. But it is a source of internal strength.
I have lived with MS for 9,855 days, but MS has only lived with me for 270. Today, I dwell on living my best life, sharing my story to help others who are hiding and constantly challenging myself and others to embrace the truth of who we all are.