I am very sorry indeed to hear that anxieties again assail you. (By the way, don’t ‘weep inwardly’ and get a sore throat. If you must weep, weep: a good honest howl! I suspect we—and especially, my sex—don’t cry enough nowadays.
CS Lewis, Letter to the Kilmer Family
It took me years to emotionally prepare to re-introduce my mom’s blogs. I always knew I wanted to bring them to a broader audience by adding some context to her life and situation and adding more educational information. I see now, it’s been a year since I uploaded her last post. Grief is, as my mom would say, “a bitch.” And really, I didn’t lose passion for the project but the last post (for whatever reason) “threw me for a loop.” It wasn’t until I learned that the blog’s backup wasn’t active that I emerged again into her world, and MAN, did it make me miss her all over.
I remember the day the Hoyer Lift was delivered to the house. I remember Brian, the angel of a man who taught our family, and my mother how to use it. I remember the nervous laughter—and the many tears. What makes me so mad about the Hoyer Lift is that every time you see one advertised, the patient is SMILING. What the ever-lovin…They look so appreciative to be held and moved with gentle care. It would only be made worse if they spelled it L-y-f-t (because it’s fun, you see?).
Since that day long ago (although not long ago enough to forget), our family has moved to another state, more grandbabies have been born, jobs have changed, and so have marriages…and yet, so often, my dad and I sit on the porch and dare to speak of those days and spin.
Tricia
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To enlighten, educate, and inform is what I think about when I write about my ALS journey, but it is more personal than all of that. The challenge is how much information I share without crossing personal boundaries, yours and mine. There are a couple of medical decisions that I have been struggling with over the past couple of weeks. I will probably explain more as I begin to understand myself better. This disease changes every day. As much as I try to be proactive and positive, it catches me by surprise. Hang in there with me. You know my philosophy: if it is a good story, it is worth sharing.
There is something that threw me for a loop. The doctor ordered a Hoyer Lift for me at my last ALS Clinic appointment. She patiently and kindly explained that I did not need it yet and might not need it for a while, but it would be important to have it just in case. Also, my family and care takers should be trained on how to use it. I was going to post a picture of what it looked like, but I couldn’t deal with the reality of its purpose. That is enough to make anyone depressed for more than one day.
I went from cane to walker to Go-Chair to power wheelchair with some grace, but I think with this addition, I will throw myself on the floor and have a major tantrum. Afterward, I will have someone pick me up, put me in the sling, and swing me around. What else can you do?
–Susan