Finding the words to thank a caregiver for uplift and service
After 14 years with NMOSD, I remain grateful for my family's help
As November closes, I’m reflecting on how grateful I am to have my family.
I know none of you chose this life as a caregiver. Neither did I, but that doesn’t change the guilt I feel about you having to help me manage my health. The day I was diagnosed with neuromyelitis optica spectrum disorder (NMOSD), I immediately thought of all of you and the impact my disorder would have on your lives.
I need you to know that I see all the things you do for me.
When I walk through our front door after an outing or a day at work, so exhausted that I’m barely able to articulate what I need, you all rush to my side. My bags are taken from me, a cup of tea is brewed, and I’m sent to my room to decompress.
I try to push through any pain caused by NMOSD, but on days when it grasps my sanity, you’re always there. You understand what’s going on when I’m pacing a room. You start a warm shower for me, and we all pretend I’m not sobbing under the water.
I do my best to process bad news, but NMOSD is frustrating. Just when I think I have a handle on this disorder, a new curveball comes my way. I know I can get cranky, and I hate when I take it out on you, my loved ones. Yet you never judge me. Instead, you wrap your empathetic arms around me until I can’t be angry anymore.
You give me strength.
After 14 years, we might hope that living with NMOSD would get easier, but it’s the opposite. Every time I find myself in the hospital, I draw strength by thinking of you. One poke, two pokes, three pokes: The needles are endless. The only thing that trumps my fear of needles is my love for all of you. You make me want to survive another day.
Darkness and hope
I try not to think about when my time will arrive.
That isn’t a pleasant thought, but I’ll admit, it crosses my mind often. I’m not afraid, but I worry about you. We don’t talk about it, but I see the worry on your faces every time I face a setback. I wish I could reassure you that I’ll be OK, but I don’t get to dictate how you feel. The best I can do is to keep fighting and stay present at every moment we have together.
I’m hopeful, and I want you to be, too.
Science is remarkable. With the fast-paced introduction of artificial intelligence, I believe it’s only a matter of time before the computers figure out how to fix our broken genes and cure NMOSD. In a relatively short period, researchers have created medications that minimize or eliminate future attacks. I pray the cure comes in time for me, for us, so we’ll stay positive together.
Those words aren’t enough, but they’re all I have. Thank you for standing by me on tough days and for believing in me on great days. Thank you for tending to me when I’m unable to do so myself. Thank you for shielding me from those who judge me for my health or don’t understand NMOSD and its symptoms.
National Family Caregivers Month may be ending, but I thank you for loving me endlessly.
Note: Neuromyelitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Neuromyelitis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder.