I thought this is it: this is how I will die. Panicking at 2 am because I could not breathe, helpless to strange symptoms, fatigue and fright. Something was wrong with me and the more I fixated on the symptoms the stronger they became. I woke my doctor husband hoping he could calm me down, take my blood pressure and tell me to go back to sleep. He assessed for signs of stroke, took my pulse and told me we might need a trip to the ER if I couldn’t calm down. I sipped water slowly, tried to stretch out and practice all the yoga tips, all the prayer mantras, all the good stuff Oprah says BUT sleep never came. In those tiny morning hours I began picturing all I might miss.
My boys growing up, getting married, flexing their souls and stretching out to truly meet the world—watching them turn from boys to young men didn’t seem in the cards for me anymore. I’ve never felt so close to death. Did I hold them long enough? Did I tell them all the stories? Did I listen enough? Did I love them enough? How would the trajectory of their entire lives change because I left too soon?
My symptoms included tingling feet and lower legs, tingling and numbness in right forearm and hand. Over the next two weeks I would also add cold toes and facial numbness and tingling including my tongue for an entire day. Scary, erratic, unpredictable and unnerving symptoms. So of course I Web MD’ed and googled like crazy, just as you are NOT to do. None of the possible diagnoses sounded like me except for one glaring possibility: perhaps I had MS. My paternal grandmother died when I was just a baby and she suffered from multiple sclerosis the second half of her life. I now live in an even colder climate than I was raised, am of European decent and between the ages of 20 and 40 when onset typically occurs (more prevalent in females). These risk factors in addition to my symptoms raised red flags. So now what? I went through the next stages of grief. Maybe I wasn’t going to die tomorrow or next month or next year, but my life could look very different than the one I conjured in my heart, my hope chest.
Running another marathon or not. Running alongside one of the boys as they completed their first marathon or not. Chasing down grandchildren, catching fireflies across the lake or not. Going on a wild wilderness vacation with Melissa or not. Supporting my friends and lifting up their kiddos one hug and giant high five at a time or not. Traveling to wine country again and giggling with my husband as we celebrate the empty nest and toast to “how did we do it?” or NOT.
I never let on to the kids. Somehow even on the days I felt 30% of my body was out of sorts and working improperly I somehow managed. Perhaps running, yoga, my fierce stubbornness and high tolerance of pain sustained me. Perhaps their cherub faces, exuberant laughter and boyish antics saved me. But I needed to tell someone. I was holding in so much fear and anxiety it seemed the least helpful thing was to keep holding on without some girl power.
So unplanned I bawled to my neighbor, she simply asked me how things were going and I just broke down. Then at the playground with our fresh, energetic, healthy, zany kids I told my two dear mom friends here in Minnesota. One a pharmacist (expertise never hurts) and truth teller I have come to admire deeply. The other my emergency contact who understands all too well strange unknowns, uncharted territory like MRI’s and blood tests. She has asked herself the question racing through my mind: what in the world is happening to my seemingly healthy self? Again I didn’t plan on telling them, I didn’t plan on telling anyone except my husband, at least until I knew what was wrong with me. I didn’t want people asking how this test or that appointment went, I felt it would make it worse, drag it out, create unnecessary drama.
And then I told my mama. This I planned because honestly as hard as it was for me to admit—I needed her. Our relationship is a bit strained and the past few years haven’t been our best mother-daughter moments. Yet there comes a point when no matter what has happened, unfolded or breached confidence—you just need your mom. And to all those who don’t have their mom (biological or otherwise) anymore I’m deeply sorry and to those who do, I hope you still find some way to reach out and hold hands even if only through scary uncertainties or awkward phone calls. I hope you take my darling grandmother’s advice and remember this life is too damn short—there is not enough time to be right, to be mad forever and you need the people who gave you life (or brought you back) for as long as humanly possible.
So I went to see a neurologist. He was the sweetest mannered man, my husband was able to come down and break away from his patients to hold my hand. He did similar checks for stroke, had me walk, checked my reflexes and sensitivity to touch on the limbs and facial areas I mentioned were tingling and numb now for over 2 weeks. I could still run and this seemed strange to me, but as long as I felt able and steady I was determined to run. I suppose in my mind, if I could still run that meant I was still normal. Part of me truly believed I had MS and every run I felt might be my last. Dramatic much? I know people with the disease struggle and can become extremely debilitated, but some remain physically active and lead close to normal lives. And there are so many types and varying symptoms that come and go, it can be a very difficult disease to confirm. The doctor looked at me and explained this might seem difficult to grasp because my symptoms feel strange, scary and draining but he had a hunch there was nothing wrong with me. In his 30 years of practice about 90% of the time it all just goes away and you are left with one explanation: STRESS.
He said keep running, go to yoga, drink coffee, enjoy wine, eat a balanced diet—do what you do. And most importantly do what makes you happy and feels good. He emphasized running, he had only known me 20 minutes and could tell it was my thing—my rock, my sanity-saving go to. He ordered blood work, MRI to check spine and neck, and a zapping test to assess nerve or muscle issues. He told me he genuinely thought I was going to be alright. I cried. Right there in his office, holding my husband’s hand, with this neurologist’s hand resting softly on my shoulder. I just couldn’t hold it in. I cried like a baby, no check that I cried like an anxious mom ready to burst. I cried like a mom who needed a break from her life. And like a mom who just wants to hold her babies forever and ever.
I share my story because not all my questions are answered and perhaps there is more to tell one day. But for now, I am virtually symptom free since the following occurred:
- I told some friends.
- I told my mom.
- I heard a professional say I was going to be ok.
- My 5-year-old successfully got the hang of kindergarten.
- I began drinking extra water on a daily basis.
- I made certain every single day I either ran or practiced yoga or both.
I tell you all this, I share all this because I was scared, embarrassed and defeated. Even if we don’t want to admit it we have all felt insecure and uncertain that some days we really cannot handle life. Parenting guilt can stress you out so much you might even make yourself sick. I was sick and perhaps something is permanently wrong with me, but I have the same hunch my kind, gentle doctor does—I have a feeling I am going to be alright, more than alright.
I don’t write this to shock or seek sympathy. I unequivocally write this to become a better truth teller than I was yesterday. I love my family, my friends, running, yoga, writing and living life close to God. That’s it—that’s me. I am not always my best, I am not always aiming high and I am always flawed. But you cannot fail me or mark me down a grade for telling my truth. Writing has done this for me, though I am certain I will never officially call myself a writer. I’m not a brave mom blogger writing books, the fiction author selling copies or the amazing social justice leader changing lives of the forgotten. But I can do some of this, in small ways I can try to reach someone else struggling, feeling scared, anxious or just a little crazy inside. I can tell my truth and offer up my witness.
Whatever you are fighting don’t give up on you and don’t cloak yourself in armor. Tell a close friend, seek guidance and proper care. Kindness is everywhere and people will show up and surprise the hell out of you. My sister joists lifted me up in the middle of all this junk and they had no idea my symptoms or pain. They just thought my boys of summer were stressing me out, they saw a mom being too tough on herself. They thought I needed a rainbow of unicorns and a big dose of we’ve got you. Whatever all this is or isn’t, I know I am never alone. If you are reading this and feeling alone, feeling like you are the only one dealing with the unbearable please remember: we are meant to do this together, we are all built to bond and hug and journey in packs. Call your team, tell them your worries and be still for a minute. No one is built to shoulder their burdens, demons, pains and heartache solo. Not this girl, this mom who doesn’t like to fail or face defeat. Not even this girl.
- Please know this post in no way suggests running or drinking more water should replace seeking professional medical care. If you or a loved one feels extremely anxious or depressed please seek appropriate medical care. Screening and help-line information may be found here: https://www.nami.org/.
- More on MS: http://www.nationalmssociety.org/