Grieving after diagnosis
The Full Story
What is it that fuels you? For me, it's my story! The other side of grief is a series about the life-changing power of loss. I sat on my bedroom floor in front of the wardrobe, legs tucked up under me and a big trash bag next to me. I looked at the bag, already holding several pairs of heels, then back at the shoes in my hand, and began to cry. Those heels held so many memories for me standing me confident and tall as I was being sworn in as a strong independent business women, dangling from my hand as I walked streets barefoot after a night out with friends, helping me strut my stuff across on the stage in a nightclub feeling nothing will stop me! But on that day, instead of slipping them on my feet for my next adventure, I was throwing them in a bag destined for Goodwill. Just days before, I’d been given my diagnosis of functional neurological disorder. Which was added to the list that had been growing for several years. Having those words on paper from a medical specialist made the situation all too real. I could no longer deny that there was something serious happening in my body. I couldn’t slip on my heels and convince myself that maybe this time I wouldn’t be crippled over in pain in less than an hour. Now it was very real that I was dealing with chronic illness and would be doing so for the rest of my life. I wouldn’t wear heels again. Those shoes that had been essential and I loved which were of my identity. It felt like I was throwing away my future plans and dreams. I was frustrated at myself at being upset over something as seemingly trivial as shoes. Most of all, I was angry at my body for putting me in this position, and — as I saw it at that moment — for failing me. In the years since getting sick and becoming disabled, I’ve learned that a whole range of emotions are just as much a part of my illness as my physical symptoms — nerve pain, stiff bones, aching joints, and headaches. These emotions accompany the inevitable changes in and around me while I live in this chronically ill body. When you have a chronic illness, there’s no getting better or being cured. There’s part of your old self, your old body, that’s been lost. I found myself going through a process of mourning and acceptance, sadness followed by empowerment. I wasn’t going to get better. I needed to grieve for my old life, my healthy body, my past dreams that were no longer a fit for my reality.
Only with grieving was I going to slowly re-learn my body, myself, my life. I was going to grieve, accept, and then move on. Nonlinear stages of grief for my ever-changing body. When we think of the five stages of grief — denial, anger, bargaining, depression, acceptance — many of us think of the process we go through when someone we love passes away. At any given point with my body I don’t know what stage of grieving I’m in, just that I’m in it, grappling with the feelings that come with this ever-changing body. My experience with chronic illnesses is that new symptoms crop up or existing symptoms worsen with some regularity. And each time this happens, I go through the grieving process again. After having some good days it’s really difficult when I relapse back into bad days. I’ll often find myself quietly crying in bed, plagued with self-doubt and feelings of worthlessness, or emailing people to cancel commitments, internally shouting angry sentiments at my body for not doing what I want it to. I know now what’s going on when this happens, but in the beginning of my illness I didn’t realize I was grieving. When my children would ask me to go for a walk and my body couldn’t even move off the couch, I’d get incredibly angry at myself, questioning what I’d done to warrant these debilitating conditions. When I was curled up on the floor at 2 a.m. with pain, I’d bargain with my body: I’ll try those supplements my friend suggested, I’ll eliminate gluten from my diet, I’ll try yoga again… just please, make the pain stop. When I had to give up major passions like dancing, socialising, leaving my job, I questioned what was wrong with me that I could no longer keep up with even half of what I used to. I was in denial for quite some time. Once I accepted that my body’s abilities were changing, questions began rising to the surface: What did these changes in my body mean for my life? For my career? For my relationships and my ability to be a friend, a lover, a mom? How did my new limitations change the way I viewed myself, my identity? Was I still femme without my heels? Was I great mother if I couldn’t participate in the things I used too, or to love being around my friends as my sensory overload stopped me, or a dancer if I could no longer move like before?
So many of the things I thought were cornerstones of my identity — my career, my hobbies, my relationships — drastically shifted and changed, causing me to question who I really was. It was only through a lot of personal work, with the help of counselors, life coaches, friends, family, and my trusted journal, that I realized I was grieving. That realization allowed me to slowly move through the anger and sadness and into acceptance. Replacing heels with sparkly sandals and a sparkly cane Acceptance doesn’t mean that I don’t experience all the other feelings, or that the process is easier. But it does mean letting go of the things I think my body should be or do, and embracing it instead for what it is now, brokenness and all. It means knowing that this version of my body is just as good as any other previous, more able-bodied version. Acceptance means doing the things I need to do to take care of this new body and the new ways it moves through the world. It means setting aside shame and internalized ableism and buying myself a sparkly purple cane so I can go on short hikes with my child again. Acceptance means getting rid of all the heels in my closet and instead buying myself a pair of adorable flats. When I first got sick, I feared I’d lost who I was. But through grieving and acceptance, I’ve learned that these changes to our bodies don’t change who we are. They don’t change our identity. Rather, they give us the opportunity to learn new ways to experience and express those parts of ourselves. I’m still a dancer. My walker and I move with grace across stages. I’m still a mother. A lover. And A friend! I’m still me just a different version of me! I believe we are given these challenges for a reason and to help us help others. Life is an open book each chapter has a different ending and a new beginning!