Uncertainty in an uncertain world

Guest post by: Danielle D’Annunzio

I never thought I would have to worry about the challenges that a chronic neurological disease could suddenly bring to someone’s life.

I first experienced symptoms of multiple sclerosis (MS) in my final year of university. It started with my left arm going numb, suddenly getting heavier, and then eventually, falling asleep. This would happen for days on end without improvement. I decided to visit my school’s campus doctor, who immediately referred me to a neuromuscular specialist, and then to my local hospital.

After months of what felt like endless testing, I was finally diagnosed with MS, just after my 23rd birthday

Being diagnosed with this disease put a lot into perspective and challenged many of my viewpoints. I thought about what my MS could mean for my life and how it would affect my family. Could I get married? Could I have children? What burdens will I bring to my relationships? What burdens will I bring to my children?

I wanted to become a lawyer and planned on attending law school, but law school demands high performance and a great deal of commitment. I knew I couldn’t pull all-nighters or manage stress the same way I had in the past, so after my diagnosis and a lot of reflection, I shifted my focus to a different path: project management. This shift allowed me to focus on what I wanted to achieve as a lawyer – making an impact and informing policy change – which now I approach from the implementation side

Over the last decade, my MS symptoms have progressed. I’m often fatigued and experience mood swings. I still experience numbness and tingling in my limbs, but now this happens in different parts of my body. Sometimes, my legs will go completely numb and heavy; other days, they feel as though they are on fire. There are occasions where my legs hurt so much that I can’t walk, or I have to stand up because I can’t sit. My body can suddenly decide to work against me, no matter what I’m in the middle of.

Some symptoms, like depression, affect my mental state. It takes a lot for me to mentally and willfully decide to fight every day. To this day, my MS makes me feel afraid, especially now that I have a child. I’m always terrified that one day, I won’t be able to walk, carry my son, or run with him at the park.

Throughout the years, I’ve kept my MS relatively private. Acknowledging my diagnosis and disclosing it to people is still something I don’t do very openly because I don’t want it to become what defines me. I’m already labelled as a female and Black, and I don’t want to be labelled as someone with a debilitating disease. In fact, I would more willingly disclose that I’m a Canadian, a Christian, a mother, and Black than to say that I have MS. I look at my MS like my blood type – unless it could impact someone’s life, I don’t need to share it.

Thankfully, I have the support of my family and friends who help me understand that this disease doesn’t control me. Even on the days where I want to curl up and wallow in my sadness, I know that I have to be strong for myself, my husband, and my son.

My husband has been incredibly supportive of my journey. When I was diagnosed, he was only a friend, but our relationship grew tremendously from there. Since my diagnosis, he has been one of my champions. He’ll tell me that I need to go to sleep, or that I need to stop and rest. He’s not just a supporter, but also a mentor and an enforcer of my health. Living with MS and navigating family relationships is all about communicating the things I can and can’t do. I’ve had to miss out on arrangements, or adjust plans, but my loved ones are always willing to accommodate me.

It’s not easy being the person that requires accommodation. I don’t know if my symptoms will progress slowly or quickly, or if my lesions could appear unpredictably. I have my vision, but sometimes, it’s blurry. I have my speech, but sometimes, it’s broken. I’m clear minded, but sometimes it’s foggy. I have my mobility, but it could go away. Ultimately, it’s the uncertainty that is difficult, but I pray, trust, and have faith while continuing to make the conscious decision to listen to my body.

In the light of the pandemic, Black Lives Matter, and 2020 overall, we’re facing added uncertainty in a world that is already uncertain. But we can’t give up. Constants in my life are God, faith, and family. Lean on the things that are constant because they will make the uncertainty feel less burdening. Make the decision to fight each day because we don’t know what tomorrow will bring. One day it’s a virus, another day it’s a riot, or a shutdown or supply shortage. Whatever your battle, fight with all you have because if tomorrow throws some new curve ball, you’ll be ready.

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