Holy S..t, I'm Down, Literally

Well the day has finally come, yes in fact it is here, I have lost my ability to walk! I have anticipated this day since January 22, 1996 when I was told that I have Multiple Sclerosis. Losing my mobility was in fact the first thing that I though of when the Neurologist told me that I have MS. I immediately pictured my Aunt Lorraine and her daughter Leenie, my first cousin in their wheelchairs, I saw them so clearly in my mind and the vision I had was horribly frightening and unsettling.

In March of 2020 when Covid had begun moving throughout the United States, causing the entire Country to Lock Down, well honestly the world was Locked Down, I found myself in the Berkshires. I was with my daughter who had been sent home from her college Upstate New York and our dog Sophia. My eldest, Alex was alone in his apartment in Philly, and my youngest Ethan and husband David were in the two bedroom apartment that we rented after selling our home in 2019. Ethan had one year of High School to complete, and we were not able to purchase a suitable home in any of the three towns that made up our school district, so we rented.

It was desolate in the Berkshire, so very quiet, a quiet unlike any I had ever experienced in my life. I would make a point of getting dressed and going out every day. Nature calms my sole and the beauty of the Berkshires is a spectacular place to take it all in. Every morning I would fill up a large mason jar with mint tea and honey and drive to Tanglewood’s Lion’s Gate entrance on West Hawthorne Road. Once at the gate, I would get out of my car and walk into the middle of West Hawthorne Road and snap a few pictures. First I would be looking to the north, challenging myself to include the beautiful tree that stood proudly near the wooden fence surrounding the property across from the Gate. I would then turn around and snap some more photos, sure to include the beautiful red barn that stood proudly on the perimeter of the property. From West Hawthorne Road I would drive to Kripalu, where I would pass through the old wrought iron and stone fence at the entrance and search the campus to find a bench to sit on. I would meditate and sing for hours on end, filling my lungs and soul with fresh New England air. Naturally, I would take pictures every day once I arrived at my second spot. Kripalu was closed and there were only maintenance personnel on site, folks who would routinely ask me to leave the premises… insurance reasons. When it got to the point that the staff would block the entrance with a vehicle so I could not get in I stopped trying.

Typically, I’d return home just in time for the daily press conference when I would listen to Dr Fauci, Dr Deborah Birx, the Surgeon General and then of course the President, Trump. I remember hearing him say that Covid was not going to effect us here in the US, and that perhaps the doctors could look into injecting disinfectant to cure the disease. I was truly isolated and alone and felt as if I was living in a Twilight Zone episode. If not for Drs. Sanjay Gupta and Scott Gottlieb who could explain the situation in ways I could understand and digest without feeling as if I was going to have a full blown panic attack. There was so much social unrest, hospitals overflowing, not enough respirators for those in need, and so many, unimaginable numbers of people dying from this invisible virus that wreaked havoc across the globe. I was frightened in ways that I had never been before, because I knew intuitively that the beauty and peace of the Berkshires belied the horrors happening all across our Country, well the World for that matter.

It was such a strange and solitary time for me, and I was hearing lots about Isolation, a feeling that I had been living with for years. Well folks…welcome to my world, your movements restricted, your freedom and independence stifled and sense of community eroding at the most rapid rate. I had been living with Multiple Sclerosis for years, and I was losing my mobility, struggling to keep upright and my ability to walk. When your mobility is impacted, every aspect of your life becomes involved. You are no longer invited to go on walks, hikes, bowling, camping...anything physical really. Friends and family do not necessarily intend to exclude you, it just sort of happens through attrition.

I left the Berkshires and returned to the apartment in April, and then endeavored to try to find a home. I had been looking before the pandemic, but there was little inventory, and we needed to find a very specific home, a ranch where I could comfortably function, no steps that I would need to transverse, one easy level to live on. My mobility kept declining, and Covid began raging. I was very intentional about keeping away from people, still I quickly realized that the apartment was not adequate for my family, as my two kids who were attending colleges out of State were going to be home, and we had no idea when they would be able to return to their respective campuses.

I found the perfect small Ranch house in April and we were to close in June. The attorney for this property was truly a nightmare ( I am being kind) and after several interaction, I was convinced that he was looking for us to walk away from the house in the hopes to get more money for the sellers, as prices during Covid skyrocketed. We missed three closing dates and finally moved into the house in August. I was able to find a job in a call center that was literally ten minutes away from my new home. I worked there for two weeks and then we were all sent equipment and were required to to work from home. As Covid blanketed the tri-state causing thousand of hospitalizations and hundred of thousands deaths, I sat at my desk, headset on making calls all day long. I enjoyed working, it was truly a welcomed distraction from the day to day terror of lock down. Within three months, I was able to land a better job, with benefits, and we truly needed benefits as my husband had been furloughed from his job and we were actually uninsured for two months. The horror I faced every day, praying that no member of my immediate family became ill, all the while meticulously staying isolated so that I, a person with a chronic medical condition and possibly compromised immunity was not exposed to Coronavirus. The wonderful company that I worked for Insured me and my family immediately day one, Oh how we were blessed. Six months into my work, vaccinations became available, and I was able to get immunized. My first shot was in February of 2021 and my second immunization was a month later in March. I walked into the hospital for my first shot, granted I walked with a walker, but by the time I received my second shot, I was no longer able to walk, and was brought a wheelchair as I struggled to stay upright on line, holding my walker for dear life.

For the next three months, I struggled to ambulate, and by June, my legs just gave out. It was truly a poultry end to my ability to walk, I just kind of melted….like the wicked witch from the Wizard of Oz. As luck would have it, my one and only living Uncle purchased a motorized wheelchair for me, one the folds in half, that I could use out in the world. The wheelchair arrived at my home the day my legs gave out and I truly believe that there was some divine intervention because without the wheelchair I do not know what I would have done, I would have been lost.

The truth of the matter is that losing my mobility has had a huge impact on my quality of life, still I lost my mobility when all people across the globe’s quality of life had been stifled by Covid. We were all isolated, trying to negotiate the reality of the limitations put upon all of us by a virus. I felt in many ways that I had company in my aloneness, we were all brutally impacted by Covid. Still, emerging from Covid restrictions was and still is horribly difficult for me. I am afraid of big crowds and believe me when I say that whenever I hear someone cough these days I wince and try to be sure there is space between me and that individual and I still will reach for a KN95 mask, for some protection. Once Covid restrictions were lifted I had no idea as to how to engage, to emerge from lock down. Layered upon Covid was the fact that I had moved out of the town that I raised my children in, and in the years that Covid occupied, I and many of my closest friends relocated and became empty nesters.

From the moment I was diagnosed with MS, until the day I lost my mobility I lived in fear of what it would be like. This fear lived in my subconscious, and I was not always aware that I was afraid, still the fear of the unknown, it was always there. I must admit that although I currently look unwell, meaning I am in a wheelchair, my MS is not the worst it has been, in fact I actually feel the best I have in ages. Multiple Sclerosis made me very ill for a full 15 years post diagnosis. The trauma of my diagnosis had such a profound impact on my mental health, that I was not really “right” until I worked with my Guru and Yoga therapist MeryLynn Blum. I saw the dichotomy of my situation when I was invited to a dear friends daughters Wedding, post Covid. I was adjusting to my situation and had not been at a large gathering of people for quite some time. I was so nervous to be in a room full of people, in my chair, still I gathered up whatever courage I needed and with a heart full of love for my friends and their daughter I decided to go, as I truly wanted to share in this joyous occasion. When I arrived at the magnificent venue, a modern day castle, I was greeted by a receiving line of servers offering beautiful glasses of champagne with strawberry relishes. I quickly took a glass and sped down the receiving line, did a 360, then a figure 8, and told the servers that I only had a probational license to drive, they might have to cut me off…. they all laughed. Once inside the venue I made my way to the area outside on top of a hill where the ceremony was going to be held. I saw many familiar faces, my friends friends who I have come to know over almost 30 years of friendship. I greeted one woman with a huge smile and hug and recalled her two bouts with breast cancer, then another who had withstood a horrific divorce, and still another who lost her in-laws to Covid. How could I possibly feel sorry for myself, when I knew in my heart that we all suffer, no one gets through life unscathed. Whenever I’m ready to have a pity party for myself, I remind myself of all of my good fortune. I have raised three children, I was blessed with remarkable parents, I have a large family, I have cultivated relationship, friendships that carry me when times are tough. I am writing this blog in the hopes of being able to help others in the same situation, others who have lost or will lose their mobility. I would love to make this life change less challenging for the next person because losing my mobility was in fact life changing. I certainly do not have all the answers, and I recognize that our individual circumstances differ, still I can offer the following: as long as you acknowledge and accept the way things truly are, focus on the positives and live in gratitude, no matter the frustration or despair, you will be able to persevere. When you make gratitude your attitude, your perspective will change and your thinking will change. Oh, one other thought that I would like to share, please give yourself grace, take the time you need to grieve the loss of your mobility, but know that you must temper that grief with optimism, and know that with or without the ability to walk, you are whole. Love yourself radically and unconditionally, even when you don’t feel like it, especially when you don’t feel like it!!

With so much love,

Stephanie