The Brake that Broke My Heart Open

It’s extraordinary how your life can change in a moment and how fragile we all are!! My life was upended 6 weeks ago when one wheel on my Power Chair fell off the ramp at my front door and I fell to the ground, spilling onto the lawn and concrete pad. My Power Chair is a Serious, and I mean Serious with a capital S piece of equipment, as it weighs almost 300 pounds, is energized by a very strong battery, basically a car battery and is bulky but moves quickly like a linebacker and very difficult to maneuver. It’s sort of ironic that disabled folks use power chairs because they require dexterity and quick reflexes to operate, making them dangerous to use and the potential of having an accident with the Chair an anticipatory event. Currently, I’m not able to walk and have not been ambulatory for some time now, still I was able to use my right leg to perform all of my activities of daily living and I could do all of them unassisted. The ability to perform daily activities of living unassisted affirmed my sense of independence and autonomy, the kind of stuff you lose when you become “dis-abled.” Having significant function in my right leg made it possible for me to drive, transfer, stand, dress, shower and so many other things that never occurred to me before I lost my mobility. I worked hard to keep my right leg as limber and strong as possible by doing Yoga, Stretching and exercises every day. I had recently begun to stand on my right leg to wash dishes and I could even give standing hugs, accomplishments that took months, actually years of hard work to achieve. I was doing remarkably well adjusting to and managing my daily life while confined to a wheelchair, no disease activity and I noticed that I was not experiencing pain or discomfort, that my body had acclimated to the progression of my MS and I was stable. Living pain free is huge and liberating because pain is exhausting both mentally and physically, and I lived for years uncomfortable in my own body because I was always in pain. I was feeling so well that I weaned myself off of all of my medications and I began to work on regaining my independence, venturing out on my own to Doctors appointments, to meet friends, to go shopping...alone. The actual fall out of my chair did not cause my ankle to brake, in fact I pulled myself up and was standing on my right leg trying to level the Chair, to get all 6 wheels onto the concrete pad when the sleeve of my sweater got hooked on the joystick propelling the chair full speed in reverse…. dragging me across the concrete pad as I clenched onto the armrests going from a standing position to being splayed across the concrete pad, looking as if I was doing dead mans float…face first into the water. My right leg had been planted in a patch of soil four inches lower than the pad, so when the chair began pulling me forward with full force , my ankle literally snapped. That moment landed me in the hospital, my ankle broken in three places and a number of torn and severely injured ligaments….as the Orthopedist reported to me after review of my X-Rays, “Oh, it is an impressive, very, very, very bad brake.” At least the surgeon was impressed by my handiwork, I always aim to please. My injury could have been much worse but fortunately my neighbors Chris and Laura were home, in fact I was speaking with Laura when I fell so she witnessed the entire event and immediately got her husband Chris to help when I hit the ground. Chris is an EMT & Firefighter, literally the hero next door and he knew exactly how to handle the situation so he immediately wrapped my ankle to immobilize it, all before the ambulance pulled into my driveway. I was entirely humbled by how quickly people surrounded me to help, there were two police officers, two EMT’s, my neighbors Chris and Laura and a gentleman who was driving past my house in a Public Works truck who literally came to a full stop when he saw came me lying on the ground. I was immediately filled with gratitude for Chris, knowing his expertise spared me further injury, for Laura, the Police, EMT’s and the Public Works worker who jumped in to help. From the moment this accident happened I was surrounded by compassion, concern and kindness.

The timing of this freak accident was ironic because I was leaving my house about to drive myself to Physical Therapy that I scheduled at a facility that serves inpatients and outpatients. In this Rehab inpatients and outpatient share the gym and there is valet parking, a bonus whenever I go anywhere alone. I have chosen this particular place for PT because in a gym that is shared by in and outpatients, gratitude is easy to find. As part of my self care, and an extension of my daily Gratitude Practices I have intentionally made choices regarding where I seek care considering this idea and then putting myself in situations where I am reminded of just how fortunate I am. To be clear, I’m not trying to describe my entry into the Olympics of Suffering, still although you bear witness to plenty of pain and suffering in a Rehab gym, you also witness triumphs, resilience, compassion, community, triumph and grace. I was doing very well physically and felt that the only barrier to regaining my independence was the need for a mobility device that I could handle on my own. I had researched all kinds of transport chairs, folding wheelchairs and came upon the Super Handy Scooter. The Super Handy Scooter was my ticket to total independence and freedom because it weighs only 30 pounds and is a simple motorized tricycle that comes apart in three pieces. The National MS Society generously purchased the Scooter for me and I was going to PT to learn proper body mechanics that I would need to employ so that I could safely use the Scooter. I wanted to learn how to: assemble and disassemble the Scooter, properly transfer in and out of my car , get on and off the Scooter, and how to store the Super Handy in the passenger seat of my car….all from a seated position, obviously. I was sure that if I could use the Scooter I would no longer need to depend on others to help me get my wheelchair out of the trunk of my car, nor would I need to wait for someone to bring a motorized cart to me when I was out….this would be a game changer for me and I was beyond excited. The Super Handy Scooter was delivered to my home the day after the accident while I was in my Hospital bed coming to terms with the damage I had done and how profoundly I hurt myself when I fell and then broke. Once I heard that the Scooter was delivered to my home I established that my recovery goal is to get to a point where I can use the Scooter as I had hoped.

My husband was out of State when I fell, but my amazing neighbors called him to let him know about the accident. Fortunately, my husband had the presence of mind to call one of my closest friends who literally rushed into the ER five seconds after me…..and I arrived by ambulance, sirens blasting and all. The point is that I was never alone, a true gift in a crisis situation, especially when you are not ambulatory because at least for me it adds a little extra! I was admitted to the hospital that Tuesday but had to wait until Friday for surgery because my ankle was so profoundly swollen that the Surgeon could not operate until the swelling subsided. I was entirely bed bound before and after the surgery that I had on Friday and I stayed in the hospital in bed over the weekend. On Monday morning I was advised that I was going to be discharged to a Rehab facility and that the staff was trying to find an open bed for me, so on Tuesday morning, a full week after the brake, I was transferred to Rehab. Before my transfer per Hospital policy I was tested for Covid, RSV and the Flu, so naturally and only because you just can’t make this s..t up…..I tested positive for the Flu!!!

I arrived at Rehab with the Flu cooties and was quickly ushered into a private isolation room that I would not be able to leave for an entire week. There was a protocol to enter my room, strict rules that needed to be adhered to by anyone who dared to enter. On the outside of my door there was a hanging organizer that contained: gowns, gloves, hand sanitizer, masks and face shields. Before entering my room you had to be fully suited up so I could not recognize folks who entered my room and I had difficulty understanding what people were saying to me because speech is muffled between the mask and shield. The PT and OT would come to see me daily, but there was little to do within the confines of my room so the visits lasted about 20 minutes if that. The Nursing staff discouraged me from doing anything like: taking a shower, dangling my legs, getting out of bed, transferring back into bed, to a lounge chair or the toilet, understandably because I was a Fall Risk! After a full week of lying in a hospital bed I needed to get up and start moving, I wanted to see what I was capable of doing on my own, how much function I still had and how I was going to move about without bearing weight on my right leg, my worker leg. With or without the flu or the Nurses consent for that matter, I was determined to survey the damage I had done and I needed to know what impact my broken ankle would have on my ability to accomplish all of my activities of daily living, and so I began a self-assessment. The first thing I did was wash and condition my hair in the bathroom sink, and then I gave myself a Salon quality blow out. I’ve been blessed with a thick healthy head of hair, inherited from my Dad, suffice it to say that it takes some effort to wash and blow my hair….and I was able to do it with ease! With my quaffed hair I began practicing transfers: on and off the bed, the lounge chair, the toilet. Every day I would practice transfers, do the exercises that PT and OT had shown me, and I basically retrained myself. Fortunately, within days I was able to perform all of my daily activities of living…unassisted. I got into the habit of getting out of bed, washing up, putting make-up on and dressing all before breakfast was delivered to my room at 8 a.m.. The staff was shocked after day 1 to see me just sitting there all made up and dressed. It took the full week to be cleared of the Flu and for me to be permitted to go to the gym. I was so excited to get into the gym for the first time and I was prepared to demonstrate all of my “handicapabilities” to the staff. Harvey, my PT was happy to oblige so he watched me move through the gym, transfer from here to there and do all of my exercises. When I finished my demonstration, like a student waiting for their final grade I anxiously wanted to hear his thoughts and hoped that I could be discharged. The Physical Therapist was impressed with all that I was able to do and informed me that he would clear me to go home, only that I had to demonstrate my ability to transfer into and out of a real car, so I did that the next day, right before he signed off on my discharge papers and we hugged and said Good Bye.

Fortunately, I had never been in a situation like this, hospitalized, needing surgery, not ambulatory and literally broken. Feeling frightened and cut off from society the first day in the Hospital I decided to post about my accident on FB. From the second the post went live I was overwhelmed by the outpouring of love and support that came my way. Time gets distorted when you are in crisis, certainly when you are admitted to a Hospital unexpectedly, it is like entering the Twilight Zone…days meld into one another so the post was my attempt to let people know where I was, how I was, what had happened, and that I could use some support. Within hours I heard from 400 people, neighbors, childhood friends, college friends, old work friends, relatives, honestly I heard from people from every stage of my life. I immediately felt better and recognized that there is real and powerful energy in every act of caring that came my way. The responses to my posting had energy that was absolutely palpable and healing, really, the only way I can describe the feeling is that of a huge and all encompassing hug. I have always believed that there is power in prayer, still this brake has shown me that in addition to prayer acts of compassion, kindness and love have their own special powers, powers of restoration, healing and well being. The support that I received, knowing that people were thinking of me, wishing me well carried me, strengthened me and helped me manage this traumatic event with presence of mind and calm. That is not to say that I did not have my moment, when I felt as if I might be falling off the rails, because I can assure you that I did. On the day of surgery, hours before I was scheduled to go into the Operating Room my fear of anesthesia started to get the best of me. I have always been afraid of “going under” and fortunately have not been in a situation where I needed surgery that required general anesthesia. My fears were only amplified by the fact that I am no longer ambulatory because not being ambulatory is just a little extra!. My thoughts started to spin out of control before my surgery, I had these stray scary thoughts occupying a lot of space in my mind….space that I did not have to spare. I knew that I needed to change my mind set, that the mind is powerful medicine and that I had all the tools needed to do so. I went on line to my Guru’s website, Peaceful Yoga with MeriLynn Blum, where she posted a video library of Dharma talks. I listened to her speak on several topics and was reminded of all the lessons I learned, the lessons that she taught me and the self care practices that MeriLynn helped me to cultivate, and no surprise I immediately began to feel better. Following my video review, I did a Metta, Loving Kindness meditation, followed by my own private serenade. Singing always makes me feel better and I have a repertoire of songs that always serve me well. Following my private concert I reread every single comment on FB and when I finished reading the comments I literally let out a sigh and I felt as if a weight had been lifted and a sense of calm washed over me. I knew that it would be OK, that everything would be fine. The impact that those well wishes had was profound, and I was grateful for the support that actually lifted me up and carried me through this traumatic experience, truth be told, those comments still carry me and will for a very long time to come.

The day before my discharge from Rahab, five of my dearest friends got together and set up a Go Fund Me page…. for me. The GFM was set up to raise money so I could modify my home and make it safe, accessible and functional. This group of Women I am so fortunate to call my friends got together an took the reins from me, making it possible for me to have life changing renovations done in my home immediately. It is humbling to have your private angst shared on line, and even more humbling to ask for help, whether it be physical, spiritual or financial. Asking for help has always been difficult for me, I do not like to impose and have always considered myself fiercely independent and capable, but most importantly I don’t want to be perceived as needy or as a burden. Many people who live with chronic illness share this concern, and for me being a burden does not square with my sense of self. I was entirely overwhelmed by the response to my GFM, and for as long as I live in my home I will appreciate the modifications that were made possible by the generosity and caring of others. I have come to realize that people genuinely want to help one another, that there is power in community and that one kindness begets another….pay it forward!! Most importantly, I have come to realize that sometimes I actually do need assistance and that I can accept support with a loving grateful heart, feeling beloved not inadequate, cared for and not a burden. From this experience I have come to see that people yearn for opportunities to express kindness, that kindness, compassion and caring are in fact human nature and have a currency of their own.

When the Pandemic isolated all of us I felt as if everyone would get a taste of how it has been for me in the past 10 years while losing my ability to walk. Isolation was something I had become familiar with because when you can not walk you typically cannot engage in physical activities without appropriate accommodations or assistance and as a result you are not included. I lost my mobility during Covid so reemerging in daily life, in an entirely different World after the Pandemic was challenging for me, in fact it still is. I want to continue to engage, and although my mobility has been lost, I’m the same person, just that I’m dealing with a totally different set of circumstances in my day to day. Post Covid most of my friends and family began to engage in day to day life, socialize, take vacations…you know resume life as we should when we are not locked down in our home isolating during a global pandemic. When Covid became an endemic I was not prepared mentally or physically to jump back in, and I certainly did not know how to roll in, I had to learn, I’m still learning. My hospital post on FB and the GFM post days later showed me that I am in fact connected and engaged as hundreds of people responded to my posts to offer support in words, donations and deeds. This entire experience, braking my ankle and all that happened to me after has been humbling, enlightening and informative. Expressions of kindness and concern from others are powerful forces that impact ones sense of safety, security and well being. All of the energy sent my way has helped my recovery, and continues to supports me. Every kindness, good wish, donation, call, text or comment served to support me and I owe a tremendous debt of gratitude to every person who reached out to me.

Often times, we do not acknowledge or even have an awareness of how we as individuals impact other human beings in our actions, deeds and words. The compassion, support and love that come my way in response to the worst brake in my life has literally caused my heart to Brake Open, overflowing with gratitude, heartfelt appreciation and love. I have found myself in a place where I am able to receive and accept the kindnesses and generosity of friends and family, old and new. I am able to absorb all the positive energies sent my way, and in response my path to recovery has been encouraging and I’m full of optimism. I feel inspired and empowered to regain function in my leg enough to restore my ability to drive, so I can move about as well as I did before the big brake. I want to get back to my “Handicapable” self and know that once I’m able to drive again, I will work on using the Handy Scoot to regain independence. I’m always looking to engage, to pay it forward, to be well enough to assist others with Multiple Sclerosis or other chronic illness cope and function to the best of their abilities. I know that my resilience has been enhanced by the support of others and that I have grown stronger than ever as a result. Again, I’m eternally grateful for all of the support I received. I have been humbled beyond measure by this experience that has filled my heart with gratitude and love…. all because of a very, very, very bad brake, a brake that broke my heart wide open.

Take extra special care of your precious selves……

And as always….with lots of love,

Stephanie