All of the blogs are taken from a manuscript that I wrote over 2 years ago. Unfortunately my cognitive abilities has declined somewhat since writing the manuscript, but my emotions have greatly improved, so references to depression, although still applicable, no apply to ME.
Fishing for Compassion.
These are the well meaning words that can cause the deepest wounds, depending on who they come from. Obviously, if they come from complete strangers, mostly I can ignore it, but the closer you are to me, the more that some things will hurt.
Certainly I don’t want to script you, but I would like offer some ideas on areas that I am especially verbally raw to.
Mostly, I don’t like to complain, or get caught up into long explanations of how I feel, and sometimes I feel goaded into that conversation. It’s easier for me to say I’m Ok than to tell you the truth and give an information, which always turns out to be too much information.
It does not feel good when you do not acknowledge the shared knowledge of what I am going through. It would be as though walking up to a man in a wheelchair and saying “you look like you could run a mile today”. If I am confused or have difficulty speaking, I actually feel ridiculed inside, at your very well-intentioned comment that I am speaking quite well. When I struggling with a cane or walker, I know my dependency, and would rather not have that dependency, and hearing how well am walking is just a weird comment..
I do crave recognition, but what I would like is recognition for overcoming. If I am talking well at that moment, it is not without effort, and maybe not without pain, help from medication, side effects, etc. Whatever it is, I am winning a battle. It is for the battle that I am winning and action that I am doing that I would like acknowledgement for. When I am “racing” down the sidewalk with my cane, I know it’s not “true” walking, nor is it running, yet it is overcoming. I’m handling the cane and managing the pain quite well if I am moving like that!
It is nearly impossible to provide examples that would work for any two people, as everyone needs to hear recognition in a different way. Personally, I do not like to be compared to others, the abilities of others, or the misfortunes of others, for good or for bad. Nor do I like to be compared to myself, or my past. I am fighting in the present with constant attention on the next moment of the battle.
Recognize the emotional state of where I am at. The fight that I am putting up. If I am losing the battle, and you can see it in my eyes, actions, posture, lack of mobility, thought, etc., show gentle compassion and encouragement in your words that’s it’s ok to take a break from the battle, and then to get back to battle, because you know that I am a fighter.
If we are winning the battle, don’t congratulate me for winning the war, I haven’t and I know that I probably wont.
I have been provided with some good do’s and don’ts from my conversations with others going through similar situations and I think they can be quite helpful.
Don’t hover over me.
Do spend quality time in quantity / give me more attention than the dog or TV.
Don’t tell me “you can’t do that”.
Do let me try.
Don’t let NOT fail.
Do frequently reassure me with hugs or other physical forms of reassurance.
Don’t me constantly afraid that I’ll get hurt.