A Roller Coaster Ride I Didn’t Ask To Go On!
Initially, the diagnosis comes and whiplash hits. I'm trying to process things in a state of unbelief. I begin to mourn some of the losses, maybe check out for a little and then I have a choice to make: will I turn left or right or keep going straight? Depending on the choice I make, the result is the difference between feeling a sense of hope, purpose or maybe despair.
Some people‘s journeys are very short at this stage of the ride and others may be more of a lengthy one. Since my diagnosis came in 2021 with initial symptoms starting in 2019, I would say my ride so far has been longer than most. A year into this journey, my doctor told me I was on a trajectory of very slow progression of the disease. Initially, I said, “Oh, thank goodness! I’m not ready to leave my family.” But as time went on, I kept experiencing loss after loss after loss such as the ability to drive, shower on my own, lift a fork to my mouth, and so on. I started to think, is this really a blessing or a curse? When I told this information to everyone around me, they definitely thought it was a blessing. But what type of stamina does it take to have a good quality of life while you’re constantly losing independence over every aspect of your life? I want to tell you, it takes a lot of damn stamina! Matter of fact, at my second yearly appointment with a wonderful competent doctor, who told me I still have slow progression, for some reason, I felt like I wanted to smack him across the face. At that very moment, it just felt like how many more years of torture do I need to go through until I reach my end destination?
Besides all the medical jargon, recommended approaches to deal with my disease along with losing functionality of my muscles and independence, I would say dealing with the emotional component of the disease is much more of a wild roller coaster ride. I am constantly going through stages of emotional grief, denial, anger, bargaining, depression, and acceptance. I find this to be much more difficult because through the years, I would say I was pretty steady and in control of my emotions. So when I started experiencing some of these roller coaster emotions, I found myself feeling badly and even apologizing because I didn’t want to be more of a burden. I already required so much help physically. I also noticed I could be going through any one, or multiple, of these stages of grief each day, week, month, which can feel like a wild up-and-down sharp turn, turbulent ride.
Having ALS means not experiencing one loss and going through each of the stages of grief once and done. It means I WILL be constantly experiencing one loss after another, which requires me to step down through the stages of grief over and over again to mourn each loss. Everyone’s roller coaster track may look different because as individuals, we all experience things differently. Here are some aspects of how I felt as I was moving back-and-forth through the stages of grief.
Denial – Some days I would completely forget that I have a terminal diagnosis. I thought I could still do all the things the same way I did before having ALS. This is until I try to do something simple like opening an envelope when the mail arrives, trying to open a pickle jar, unwrapping a piece of candy, lifting a spoon to my mouth with the hope that I can feed myself an entire meal, squeezing toothpaste out of a tube, or trying to take a longer walk. I quickly get pulled back into reality so fast I barely have enough time to blink. As of right now, when I’m experiencing loss, the denial stage doesn’t last very long because I’m physically reminded of what I can no longer do. However, in the beginning, I lived in the denial phase for long periods of time. While in denial, I was constantly thinking the doctor missed something and gave me the wrong diagnosis, especially since my progression was slow. When I would lose function of a particular muscle, I would think well, that’s all that is going to happen. It won’t progress any further. Unfortunately, it always did.
Anger – I’m using every word of profanity in the book as I go through my day because everything I try to do is an epic failure. I keep dropping things or even the simplest tasks takes me ten times longer than it should. The denial is gone, and I’m angry at my situation and envious of people who are able to physically do the things I no longer can. I’m angry because I can’t get into my car and drive to visit my daughters. I’m especially pissed off because I sense all my family and friends moving on with life as they should, and I’m stuck spending my days in my lift recliner. This is nobody’s fault. Life moves on. I get it. More importantly, I want my family and friends to be happy and prosper. I’m just angry that I’m limited in what I’m able to do. I have a terrible time trying to dance with it because I just want to be in control and enjoy the things I did before having ALS.
Bargaining – Did you ever say why me? Or God, why me? I devoted my life to caring for people. I know I’m not a bad person. I’ve always been loving and caring, putting other people first. I am not perfect. I make mistakes because I’m human. Could I just be healed? I will do anything! Why am I the one being tormented? You, God, can change this! I cry in the middle of the night and ask can I just go to sleep and wake up a normal person hoping this is all a nasty dream and not my reality? What could I’ve done to prevent all of this?
Depression and anxiety – The sun rises, and I’m really not feeling impressed to start my day. Matter of fact, I really don't want to get out of bed, nor do I wish to put my feet on the ground to start the same routine I experienced yesterday all over again. The weight of it all is so heavy I feel like I could just curl up and die. I feel useless and a burden to others even though they tell me I’m not. I feel hopeless and in a state of despair. My mind continually focuses on my losses, and I remind myself this is going to get much worse because it is progressive. I’m anxious about losing more function and being in a complete state of paralysis while still having a sharp mind. I have long periods of sobbing. I get depressed because when I experience something enjoyable such as a holiday, someone’s birthday or a vacation, maybe during or after the event, it is in the back of my mind, “Will this be the last time I will experience this enjoyable event?” I mentally have a half cup empty.
Acceptance - These are the days when I tell myself, “Knock it off! Stop being so negative. Put on and pull up your big girl pants and move on.” On these days, I experience pockets of peace and acceptance. These are beautiful days. I have always been a half cup full person so when I’m in this stage, I feel more like myself. These are the days I am thankful for my family and good friends who are devoted to me under the circumstances. I’m more spiritually in tune knowing that I can lament about losses but also be hopeful at the same time. I accept that I did nothing wrong to deserve this dreaded disease. It is what it is. I reread the Bible and understand the book of Job. Bad things do happen to good people. We are never promised otherwise. These days I even say sacrificing so much may be used for an unknown purpose, what I call, God’s upper story in which he is weaving situations and events together for reasons which my brain cannot understand at the moment. But I have to have faith and surrender to God, knowing He is in control and will always be by my side, even when I’m experiencing turbulent hardships.
I need to say it is not all doom and gloom. There are good things coming out of this experience. I have developed stronger relationships with those who are important to me, and I’m still able to give to others what I have left. I have learned to forgive quicker. I know everyone is on his/her own spiritual journey, and it may look different than mine. For me, it has become stronger during this journey because now I have the time to think and reflect. I’m looking forward to experiencing a good death. What? What does that mean? For me, it means that I’m ready to spend eternity in a place of peace with no suffering or heartache, a place where I can run, twirl and dance with my arms out and birds sitting on them just like in the Sound of Music. We all experience grief on some level, a loss of a loved one, a pet, a job, a friendship or a relationship. Be kind to yourself and give yourself time to experience emotions and grieve when you need to grieve. We are all learning how to dance with life or ride that roller coaster up and down the hills and around the turns. The choice of turning right, left, or going straight is yours which will make the difference of having hope even in the midst of all the yuckiness of life.
If we have faith, things will always be good. However, sometimes, we are disillusioned. We live in the valleys because life wasn’t promised to be all glorious and perfect hanging out on the summit. But I am so glad that Jesus is with me on this roller coaster ride. He sits with me in the car as we go up and down the hills and around the sharp turns, left or right. I chuckle at the image of Jesus and me in a roller coaster car, together, with His hair flowing in the wind, and my arms up in the air, screaming and laughing and having fun during our joyful time together.
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