While this blog is primarily focused on my life with Myalgic Encephalomyelitis, I’d like to start things out by saying, “I am not my illness.” It would be easy to get lost in an overwhelmingly controlling, isolating illness such as this. To allow it to define me, to become all that I think and talk about. However, allowing this to happen would only steal further from an already greatly diminished quality of life. It is important to spend time thinking about other things, even if I cannot physically participate in them anymore. I thought I’d do a post on some of these things, allowing readers to get to know me a bit more fully.
So what are my interests? The first thing that comes to mind is dogs. I love dogs. I love working with dogs. As a teen, I spent hours each week at the local shelter working with “problem” dogs to make them more adoptable, chasing down strays to earn their trust and capture them, and training my own dog to do cool stuff. As an adult, as soon as we could afford one, my husband and I adopted a beautiful greyhound, DeeDee. I selected her with the intent of training her to do pet therapy, and soon we were visiting nursing homes, physical rehab centers, and a local hospice center, bringing smiles to people’s faces. When my health began to sharply decline, I trained DeeDee to help me around the house. Eventually, I trained her to become a full service dog. She went everywhere with me, giving me at least a full year more of leaving the home than I would have had without her. During that last year, so many memorable things happened: my grandpa’s 90th birthday party, my brother’s college graduation, holiday celebrations with family, my mom’s wedding, and much much more. DeeDee was by my side through it all, enabling me to safely create memories I cherish to this day. Having DeeDee by my side continues to help me even now that I’m bedbound. I’ll write more about service dog tasks for ME later, but for now, my point is I adore dogs.
Also, I enjoy all things language. I did freelance writing for a few years, spent three years teaching English as a Second Language, became moderately fluent in Mandarin Chinese, enjoy writing poetry from time to time, and love to read or listen to audio books when my illness allows. I used to read a lot of the classics, but nowadays my brain has difficulty processing complex thoughts and theories, so I tend to stick to more popular fiction, YA romance, easy science fiction, etc.
Third, I enjoy the outdoors. Nature is relaxing, so even though I cannot go outdoors myself anymore, I enjoy nature based imagery, nature videos on YouTube, etc. When that is too much for my eyes to process, I sometimes close them and imagine myself in some of my favorite outdoor locations. Nature is absolutely stunning to me.
Fourth, I grew up in a very musical home. I used to play multiple musical instruments – piano, flute, and my favorite, the viola. I almost went pro on viola, but eventually stopped playing instead. I still enjoy listening to music when it’s not too difficult to process physically. My favorite genres are easy rock, some pop, classical, some oldies (80s and 90s mostly), and movie soundtrack type stuff. I absolutely adore Peter Hollens on YouTube. If you’ve never heard him, check him out!
Fifth, I used to be smarter than I am. My IQ dropped over 20 points overnight when I developed ME. I have multiple official tests to prove it. Thankfully, I had those 20 points to spare, so I still get by okay with careful planning and a bit of assistance, but I sure do miss my brain and what it used to be capable of. Everything is much more difficult now. But I suppose it all builds character or something of that nature, so I really shouldn’t complain.
And finally, I should probably mention that I am in hospice. In the US, in order to receive hospice care, a doctor must sign a form stating you could die within six months. And I could, thanks to the serious, progressive nature of my illness. Based on that, I debated whether it was even worth it to start this blog. I decided it’s never too late to start anything. Even if I only get a few posts in, at least it’s something. And if I get more than that, that’s something too. We’ll see how things play out.
Thank you for joining me on this journey. It won’t be boring, I can guarantee that!