hsct-Multiple Sclerosis
Turkey Bowl — couldn’t feel my feet but happy I played since it was my last one
Life After Diagnosis
One of the first things people say when they learn you have MS is, I didn't know you were even sick, which I always took as a compliment since it meant I was doing a good job masking my symptoms. My biggest fears were the look of pity and MS becoming my identity. I wanted others to see me as a strong, independent woman. Still, my disease started progressing to the point I had no other choice than to share one of my most privately held traits and depend on others for help. The response was nothing like I'd imagined. Everyone gave me love, compassion, and support, allowing me to still be mom, friend, and wife, not my disease. It is hard admitting you need help. The feelings of guilt and indebtedness creep in, making you feel even more angry and depressed. It was self-imposed and very humbling.
There became a keen interest in day-to-day life and my ability to maintain a new normal for my kids. How could I explain the paralyzing fear of just waking up each morning, holding my breath, tears streaming, trying to work up the courage to put my feet on the floor. This fear of immediately knowing what kind of day it would be, good with only numbness or challenging with fatigue, numbness, falling, and whatever else decided to happen that day. I do not function well in the unknown, so for me, the uncertainty of everyday life was more crippling than ever. I could no longer plan to the point my kids would not have had Christmas the year I was diagnosed if my husband hadn't taken care of everything because I was in such a fog. I could not confidently tell my kids I would be there fully participating. And the door I'd always held open gradually closed, then locked, and then became non-existent. Everyday tasks became exhausting since a shower could result in a 3-hour nap, being social might leave me too drained to walk back to the car or drive home, cooking became a foreign language.
Everything familiar that I enjoyed became too complicated. Many days resulted in choosing the one thing I planned to do that day because as my disease progressed, I couldn't do even a fraction of what I used to. It felt humiliating, frustrating, and overwhelming. Looking back, I don't have many memories from that time. Part of it was the loss of my short-term memory, and the other part was due to my emotional state, which was on screen saver mode, where I felt nothing because it was all too much. Life during that time was a blur, and thoughts of life being easier for my loved ones without me were regularly on repeat. Life was hard and seemed unfair. I felt like I was a good person who didn't deserve this debilitating disease. My kids are the most amazing and didn't deserve this type of mom. And my husband married a completely different woman and didn't deserve this kind of wife. I wanted to love and take care of everyone as if nothing had changed, but it was a task that proved to be impossible. Life as we'd always known it was non-existent with no explanation or reason why. This new reality felt bleak and unfamiliar. I no longer recognized myself, and all I could think about was what shape the progression of my disease was going to take. My future was nothing like I'd envisioned, and it was scary and unfamiliar for everyone involved.
Reframing my thinking
After my mom was diagnosed with SLL/CLL (Small Lymphocytic Lymphoma/Chronic Lymphocytic Leukemia), I became grateful for Multiple Sclerosis. I know that probably sounds weird, but the treatment for her type of cancer is HSCT (Hematopoietic Stem-Cell Transplantation). I joked about being the guinea pig just in case. Everything MS stole from me also gave me an understanding of my mom's situation that I otherwise wouldn't have. I can be critical when I don't fully understand challenges. For example, when she was dealing with fatigue after napping, I'd be like; you just slept for 4 hours, so how can you still feel tired. That was until I started experiencing the same fatigue with which she'd been living. Multiple Sclerosis has given me empathy and allowed me to be one of her biggest supporters who understands and relates to all the emotions, frustrations, functioning at best, and barely realizing your life has become about just making it through another day. My mom and I are incredibly close, so that is where gratitude for this journey comes into play. It has given me insight and compassion for things you cannot comprehend until you've lived them, and I am glad my mom is not alone without someone who understands all the things that come with a forever diagnosis. I love her, and she is one of my closest friends. As hard as it was to accept my diagnosis, it was even harder accepting hers because, as unrealistic as it is, I never wanted to be without her and did not want her to have a life of pain, frustration, and uncertainty. Nevertheless, we have different diseases that encompass the same struggles, fears, emotions, and treatment, so we journeying together, helping us feel less alone.
My parents at the Biltmore
notes on survival
You are allowed to break. Everything does. The stars grow tired and fall. The waves crash against the rocks and shores. Trees fall for both storms and the wind, leaving behind seeds and saplings so a version of them can grow again. Stormclouds part for the rain and then part again for the sun to come through. Night must break for the day, the day for the night. The world is made of broken things piecing themselves back together —this is what gives us the most resilient stories. So why do you think that you were built any differently than the night and the storm clouds? You know how to put yourself back together again, too, just as well as they do. Take heart. You have managed to rebuild yourself a thousand times over from every bad day. That is no small thing.
Nikita Gill