It’s My 25th. MS Anniversary… How Do I Mark This Day?

January 22nd 2021 marks a quarter since I heard that I have MS. Things have been crazy to say the least, a Global Pandemic and Political unrest the likes of which our country has not seen since the civil rights movement, maybe even the Civil War! In this Country there is a divide, the masked, unmasked, vaccinated, unvaccinated…political unrest, the likes of which I have not seen in my lifetime. I am writing this blog as I am still trying to digest the Insurrection of January 6th, my oldest son’s birthday. During this Pandemic everyone is feeling isolated, a feeling that I have lived with for years since mobility has become an issue. I have had this feeling of unease for quite a while, maybe an intuition about the Pandemic, or a knowing that there was some impending danger the moment I saw Italy locked down on CNN.

On this day I see the world has literally been forced to Pause….Nations across the globe literally LOCKED DOWN. I entered this year with profound difficulty walking, significant spasticity, so I currently use a rollator and or scooter. I felt my mobility slipping away as I was unable to access my disease modifying medication due to insurance changes when my husband was furloughed. On my Anniversary I want to honor myself. I want to affirm that I have worked diligently to manage every esoteric or measurable impact that my MS has had on me. I have dealt with chronic pain, strange sensations, electric charges, Lermette’s sign, drop foot, spasticity, trauma, anxiety and depression. I spent hours working with my Guru, Yogi MeriLynn Blum who helped me to straighten out my mind, and even more hours with Neurologists trying to slow the progression of this disease.

I want to appreciate the hours I spent with both of my parents when they were dying. I was able to be with them, to care for them, to spend time with them and cherish them as they were dying. I want to appreciate the researching, reading and studying I have done to stay current, to keep a pulse on the MS Community. I want to remember the work I have done to regain and maintain a calm mind. In the face of the daily challenges that MS presents, during these last 25 years I have stayed married, raised three children, rescued 4 dogs, 1 cat and inherited 1 cat from my mother when she died.

I want to acknowledge the profound grief that I have suffered these past 25 years, losing both parents, 3 of 4 Uncles, 4 of 5 Aunts, two first cousins, two dogs and a cat and so many others. These past 25 years living knowing that I have Multiple Sclerosis have been full, full of everyday, ordinary life. I have been very fortunate, able to have children, my dream in life come true. I had 3 children in a little over four years and was elbow deep into diapers for years. I was grateful for every messy day I had with them when all three were little. I loved replying when asked, “How old are your children?”, Well, they’re 4, 2 & New, Oh they’re 1, 3 & 5.” I loved mothering from the first second I became one, I loved dressing them, bathing them, feeding them and especially holding them and drinking in their baby smell. For so many years I had a child pulling at my skirt or on my hip, or a scraped knee or boo boo to attend to. I loved every second!!!!

On this, my 25 th MS Anniversary, I am humbled. I have known first hand that life is precious, that things can change in a second. I was diagnosed with MS when I was newlywed and I clearly remember the discussion with my husband. “ Listen, we can split up now, no harm no foul…you really did not sign up for this.”and his reply immediate, “Stephanie, I can step off a curb tomorrow and be hit by a car, I could get sick, there are no guarantees in life.” I wonder if Dave would reply the same now, knowing how challenging MS is to understand and to live with. On my 25th MS Anniversary I want celebrate my life and focus on all the positives, my family, our pets, amazing friends & community.

It has been a difficult 25 years navigating this disease, still along the way I have managed to grow a family and roots in my community making life long friends, family friends so to speak. I have been slow in moving and never free from pain, still I participate and engage. I am grateful for the gifts I have, my family, friends and pets. I the midst of this world wide chaos, my Country divided as I have never seen, I chose to focus on the positive and all that I have navigated, living with MS. Happy MS Anniversary Stephanie…..celebrate all your life has been & will become.