I know it impacts you too. I do. There isn’t a day I don’t feel guilty for not being who you think I should be, who I might have been.
What do I need to do?
What would you like me to do?
Is there any way I can help?
I feel like I ask these questions all the time as a prelude to the sound of silence. I know you are frustrated. Dealing with MS sucks for those of us with it, and I know it blows for those who care for and about us. Please understand at some point I will stop talking about MS to you if you constantly blame everything which goes wrong on my MS. If everything I mention about MS leads to further marginalization and more dismissals with a “well you can’t do this anymore,” then I need to stop talking to you about MS symptoms. Sadly, this road leads me only to the isolation in reality which I have felt increasingly over the years.
I was never perfect, and I have had monumental screw up powers for longer than I have been with you. I’ve messed up making mistakes leading to 16,000+ complaint calls. I worked double time answering phones and reprogramming for an apology. Trust me, making mistakes is something I’ve been doing longer than I’ve had MS.
If possible, I have always worked doubly hard to both rectify the mistakes and learn from them. MS hasn’t changed this. Wherever and whenever possible, I will always try to live up to what I think of as my responsibility. Towards this end, if you see me up working with kids when you think I would be better off just going to bed, please note why I am still up trying. It’s fine to note my discomfort, but I wish your notice would also include, the “he must love them” sentiment because it is my choice.
I’ve long said, “I have nothing more valuable to give than my effort, attention, and affection.”
I just wish it to be enough. I feel it’s not, but I dread feeling I should have done more. I wonder if most sick people feel this guilt of wanting to matter not just to those whom they care about but also for them. It seems the lament of the elderly, but I have too much left to do…
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I feel marginalized every time I stay home when everyone else goes out. Heck, I almost went crazy spending 3 days without driving last weekend. I just want some different walls, some different sights. Even this past weekend, I stayed home while my wife and kids went to a Halloween event. I stayed home with our fostered kid who wasn't feeling well, but I don't know and will never know
Very well put. I know I have marginalized myself, but don't quite know how to undo what i've drawn. Makes since?