She writes about having cold feet, in both a literal and figurative way.
Luther is usually always freezing. Sometimes his skin is actually cold to the touch. So I get the literal part of this post.
In the figurative sense, we haven't experienced friends or family getting "cold feet" and leaving us at the aisle, so to speak.
We've been super fortunate in our ALS journey in terms of having the people in our life stick around. Our family and friends have been very supportive.
Here is the post. It's long but it's worth the read if only to get a sense of what it's like to have ALS.
Literally. Roger's feet are often cold. There never seems to be a rhyme nor reason for his feet to be cold and most times he doesn't mind it. I hate having cold feet and will quickly don warm comfy socks. If I am nestling in my recliner/bed at night, I wrap my feet in a blanket.
Roger can't do that. His comfort is completely dependent on others to adjust and move and cover and uncover. Cold feet is just a piece of his comfort puzzle. When you have a chance, take a few minutes and consciously focus on all the little moves you make to get comfortable. Then take a few more minutes and stay perfectly still without making any of those moves. Roger will spell out directions as best he can using an alphabet card and blinking on the letters he wants as we point to them. Left foot. Cold. Hot. Lift leg. Stretch. Move right. Pillow under foot to hold it up. (His feet have dropped without the muscles to hold them up, and this causes a strain.) Rub heel. Lidocaine on top of foot ... From toe to head, his comfort relies on others to adjust. Head down. Sit up. Pull me left. Falling. Finger cramped. Arm hurts. Pillow out. Pad in. Fleece. Itch cheek. The late stages of ALS with paralysis are a continuous cycle to adjust and reposition for comfort and to ease pain, and warm cold feet.
Cold feet. Figuratively. ALS is the monster in the closet and under the bed that crawls out of nightmares into the light of day. The fear is palpable. Emotionally, the patient and their family are faced with the reality of death, and 'locked-in syndrome' where the monster will chip away at all those abilities to eat and swallow, to talk, to walk, to hug, to move, to smile, to breathe, until the patients are completely entrapped inside their bodies.
Families and friends face the fear of seeing their decline and sharing their suffering. Love means never wanting to see them in pain. Love means saying all too often, 'I'm sorry.'
Then there are fears - financially - not to be able to pay the mortgage and taxes, or to find and be able to afford to pay help, or having to choose between buying groceries or medicine, or paying the fuel bill or keeping the power on, getting new tires or ... So many caregivers are faced with the fears of losing all they have because they have to give up their jobs to provide the help needed.
There are the fears of not being capable of being a caregiver, of being able to operate the medical equipment, of using a feeding tube, of giving the medicine correctly, of ordering the supplies, of not making mistakes that will harm them. Fear that you won't have the strength to get through the days and nights due to exhaustion, or of being strong enough to lift and dress and change the bedding with them in the bed. Fear of hurting them or doing anything to make things worse.
Cold feet. Figuratively. Sometimes cold feet walk away. Sometimes the fears are just too much. The cold feet leave quickly, or maybe even after years of care. Maybe the cold feet are too old or too young to manage. Maybe the cold feet are ill themselves. Maybe the cold feet have another loved one ill and in need. Maybe they didn't have the support they needed. Maybe the cold feet have become depressed. Maybe the fears are beyond anyone's understanding.
Please pray for ALS patients and their caregivers and families to have the resources and strength to warm their feet and keep going. If you are able, perhaps you might even help them in ways that will warm their feet and warm your heart.
I would ask that you pray especially for those cold feet that walked away. My heart aches for them because they have added another layer of grief by leaving. I know that they may have very real reasons why they had to go, but those reasons won't totally erase walking away. Cold feet can lead to a chilled, sad heart.
One woman left after 9 years because she said her little girls had lost most of their childhood and had no idea of a normal life. She wanted them to have a chance. What a heartbreaking decision.
Please consider sharing this post to raise public awareness a little bit more.
May your feet always be warm.