Date: April 30, 2021
By: Doreen D.
I have just spent the last few hours dealing with medical professionals, insurance people, charity groups, and a chairlift installer – sigh. Please do not get me wrong, it is all good! I am getting a chairlift put in my house within the next few weeks and am just working out all the details. It really is a true blessing as I begin my next adventure… we are calling it the “Roller Coaster” as it will be able to go all the way from the top floor of our house to the basement on one continuous track and chair. As my 15-year-old daughter says, “You’ll be ripping, Mom!”
I was diagnosed with Inclusion Body Myositis in the Spring of 2017. It is an inflammatory muscle disease that slowly deteriorates the muscles of my legs and arms, eventually leaving me in a wheelchair in the coming years. At first, I only noticed having trouble getting up the stairs. I thought, “I am so out of shape,” even though I ran almost every day. As time has past, I can see the stages of my physical ability declining with every season. Summer 2017: I toured Italy with my family with a bit of difficulty stepping and climbing. Summer 2018: I obtained braces for my legs so I could continue to golf without falling. Fast forward to today: I have blocks to help me climb the stairs (I kind of look like a spider/lizard creeping up the steps hand and foot). I come down slowly scooting on my butt, thus the chairlift install. I seldom leave the house without a walker. I have difficulty sealing a zip lock bag or pressing an aerosol can. I can still write, but my technique is unique. Luckily, there is no pain involved, just a steady decline of physical ability and independence.
This is not my first taste of a debilitating disease. In 1997 I was diagnosed with Myasthenia Gravis, an autoimmune disease that affects the neuromuscular system. At my worst, I could not speak properly or swallow (often choking on my own salvia). My right eye would droop so much that I would joke about getting a brow earring so I could hook my eyelid open to see. There was muscle weakness of my arms and legs. I took a medication called Mestinon every few hours to keep me sort of functioning, sometimes taking so much that my insurance company thought I was selling it and would cut me off (I am not sure who would even buy this from me??!) When I was first diagnosed, I was pregnant with my first son and was fortunate enough to have less symptoms while I was pregnant and nursing, but soon after my symptoms flared up again.
I think of that time and it makes my life now seem so boring in comparison. I was helping set-up a St. Vincent de Paul conference in our parish, working part-time for a drilling company, helping with the Parents and Tots program in our community, taking Pastoral Care courses, and helping with the RCIA program at our parish. At the same time my mom -my friend- was dying of breast cancer that had metastasized into her spine, keeping her from walking. She was everything to me; we were good friends, only being twenty years apart. I was the oldest of eleven children, with the youngest being ten years old when our mom finally passed away in 2000. With my Myasthenia, I had my mom. We would talk and pray almost everyday over the phone. Every Wednesday Ryan (my son) and I would drive to the farm (later the Drumheller Hospital) to visit and pray the Divine Mercy Chaplet with her. That evening, after supper, we would be joined by other family members to pray the Rosary, asking for healing. Looking back, it was such a blessing to have that time (a 3-year retreat) with my mom, concentrating on prayer and healing for her and I. When she died, I initially declined in health going from Hyperthyroidism to Hypothyroidism, to Lupus, to then more severe symptoms of Myasthenia Gravis. I would have to sleep sitting up with a towel on my pillow so that I would not choke to death in my sleep. I would sometimes choke on my medication and I would start praying, “Please don’t let me die in front of Ryan.” I could really only speak properly in the mornings. Despite all this, I never gave up hope that I would be cured. In fact, I was sure I would be.
Each day I would write in my journal…
Just for today… I give Jesus a “gift” (at that time cigarettes were my main item – yes, unbelievable I was still smoking through all of that!) I would add all the people that needed prayers for the day, along with my thanks, worries, struggles, and hopes. Along with my journal, I would pray the entire Rosary and Divine Mercy Chaplet each day. I would try to Fast on Wednesday and Fridays (like the people in Medjugorje do). I went to confession monthly. I worked with a Naturopath for nutrition and vitamins. And I started reading the Bible (literally from the beginning, page by page). Some days were so hard, I would list my progress by how many Mestinon pills I had to take to keep functioning; each day repeating in my head… “Just for today…” I would try not to stray thinking, “Tomorrow is the Devil!” Again saying, “Just for today…”
It took me 18 months to complete the bible cover to cover, the exact same day I took my last Mestinon pill. Along the way I had quit smoking entirely. In my mind I was cured! Hallelujah! God had heard my prayers and had been merciful. Always hoping for more children, I immediately got pregnant with our second son, and three years later our daughter. The Lord is kind and merciful!
Even now, my Specialists say I am not exactly cured, but in remission/ stable from Myasthenia. But to me, it was my miracle. That is why I was so devastated when I could sense something was not quite right with my body; it was not that I was out of shape or tired, there was something really wrong. Again, rounds of doctors, specialists, and tests until the final damning diagnosis. When it came, I went into depression, a numbness. Not that most people would notice outwardly -I was still functioning as a wife, mother, volunteer, aunt, friend- but inside the questioning, “Why? Why me? Why now?” The guilt of being a burden on my family both physically and financially was daunting; my self worth was at a low. I was the one who worked and put my husband through Engineering. I was the aunt who hosted our massive family gatherings. I was the volunteer who organized Christmas hampers for St. Vincent de Paul. I was the parent who was on School Council, helped in the classroom, volunteered for all the field trips. I was the one who hosted all our children’s team parties. As I write this now and see all the “I’s” - I feel embarrassed at the sin of pride that runs through these sentences. Of course, “Why Not Me?” – I am no different or better than anyone else, I am not infallible, I am not special. I wallowed in self pity at my new fate. I was so sad inside. Fortunately for me though, I still had faith, even if it was only a few prayers a day, I kept my connection to God. Some days I felt successful, other days not so much. I am not sure when exactly I started to feel “normal,” or had a sense of self worth again, but perhaps sometime in the last year, I noticed I was smiling and laughing more (yes – even during Covid!) I actually felt happy! I felt at peace! I could joke about my affliction and predicament. I “wanted” to be joyful and joking!
Today, I am more thankful for smaller things, like sunshine, happy kids, a loving husband, and family. I am still not a 100%, but I now have more better days then not. I can see through the years how I had taken for granted my miracle and started to forgo writing in my journal daily, I had decreased my confessions, and lessened my prayer life. I can now see God was calling me back, to be more faithful, to lean on him like before. I needed my old spiritual regiment and order, like I had been doing before. I need it for my health and well being, and to keep my own personal connection with God strong. I know each person finds their peace with God in different ways, but for me, this is the way I know, and have been missing over the past decade. I am indeed on a new adventure, not one that I expected, and I know not where it leads, but that is okay, I will not panic, I will start just like before, “Just for today…”