Holiday Blues and MND

-
It's been a while since I last updated this blog. I lost interest for a while (which happens quite often), and I thought I had already moved past the grief stage of living with MND, but I was wrong especially during the holiday seasons.


Christmas was quiet last year. Not the peaceful, candle-lit kind of quiet. The 'no family nearby, just the two of us and the two little doggos' kind of quiet. I live with MND for almost 5 years now, so quiet days aren’t new to me. But this one felt different.


Since I lived here in NZ, I have always spent holidays and special occasions with friends, chosen family, really. Over the years, it became our normal. So when Christmas came and went without an invite or a “come over, it doesn’t have to be fancy,” it stung. What hurt more was the silence.


I saw online that my friends had gathered for a lovely dinner party. All dressed up. Smiling. Together. And somehow, we didn’t cross their minds. I don’t think it was intentional. But it still hurt. I questioned myself. Am I being dramatic? Am I expecting too much? In Filipino culture, we’re not exactly encouraged to talk about these things. We endure. We stay quiet. We don’t want to make anyone uncomfortable. So instead of saying anything, I sat with the feeling. And then there’s my husband. He doesn’t have friends here. I can manage my own sadness most days, but seeing his loneliness hits differently. Loving someone means you feel their isolation too.


What I’ve realised is this: this isn’t about jealousy or missing a party. It’s about grief. Grief for the way things used to be. Grief for friendships that felt steady, but changed when life required adjustment. Sometimes people are wonderful when life is easy. When things get complicated or confronting, they quietly step back. That doesn’t mean I’ve changed in value. It just means not everyone knows how to walk alongside illness. I am sure I will catch up with them at some point but it feels different now. Not angry. Just… aware. I’m learning it’s okay to recalibrate how much of my heart I offer without making a scene about it and still grateful for whatever time they can give.


Last Christmas wasn’t festive but it was honest. My husband and I (and our doggos) were together. And while that doesn’t erase the loneliness, it matters. If you’re living with MND, a terminal illness, or loving someone who is and the holidays feel quieter than they used to, you’re not dramatic. You’re not invisible. And you’re not alone in this. Sometimes being "Terminally Well" means allowing yourself to feel the ache… and still choosing gentleness.





Comments

Post a Comment

Popular posts from this blog

Motor Neurone Disease Diagnosis Journey

-
Image
I often find it difficult to express my thoughts, especially when it comes to discussing my feelings. This is partly because in Asian culture, it is not common to open up to our parents or express emotions freely. Therefore, bottling up my emotions is much easier for me than talking about them. However, I am gradually learning that it is okay to talk about our feelings and now is the right time to do so because there may be people out there who have had similar experiences. If I don't do it now, it may never happen.   I was inspired to write this blog post after I asked for people's perspectives on Reddit about whether I should get a job despite being terminally ill with motor neurone disease (MND). Without context, the obvious answer is no, but I provided some background and explained the challenges I face living with MND. The Reddit post was titled, “Terminally ill: I still want to work, or do I just call it a day? ”, and while it may have come across as political, tha...
Read more

Living Fully with Motor Neurone Disease

-
Image
It's been five years since I first experienced symptoms of M otor Neurone Disease , and now I rely fully on my husband as my sole carer . Accepting help was tough initially, given my independent nature and background as a former nurse. However, I've come to terms with my changing needs as my physical capabilities have evolved. I've noticed a lot of changes in my physical abilities over the past year or two. I mostly get around in a wheelchair and use a walker to get to the bathroom. My smile isn't quite the same anymore due to my weakened facial muscles, and my voice has gotten much quieter. But besides these physical changes, I've also noticed that I'm growing and seeing things from different perspectives. It's like I'm becoming a whole new person.      MND is not linear in its progression; it varies for each individual . But l earning to adapt to the environment is the best way to manage the condition.  It's not always possible to keep ...
Read more

Social Isolation and Motor Neurone Disease

-
Image
I want to discuss the touchy subject of social isolation among people with terminal illnesses, especially Motor Neurone Disease. I've been feeling socially dead for quite some time now, although I understand that not everyone may feel the same way. Perhaps some have a great support system or other reasons for not feeling this way. In 2021, I thought everything in my life was going great until I received the diagnosis at 34 years old. When I first got my MND/ALS diagnosis, I withdrew from the world. I didn't see or speak to anyone for quite some time. It was my husband who shared my diagnosis with our friends and his family, which I didn't mind because I didn't have the energy to explain it without getting emotional. However, I had to tell my own family. It was hard to explain what MND to them because they had never heard of the illness before. At that time, when I told them, I still looked "normal," so they didn't really understand the seriousne...
Read more