Something I am working on is putting away the happy mask and being more authentic. Not sure yet what that will look like, but I am working on it.
To not put too fine a point on it—opting to be in the life of a person with MS takes the guts of arctic explorer Shackleton, the determination of Joel Waul (who?), the compassion of Sister Theresa, the creativity of Alexander Calder (who?), and the humor of Gilda Radner.
What then is the role of the person with MS? My tendency is to feel obligation and guilt for the extra load of crap that this illness dumps on everyone around me. I say I am fine when I am drowning. I eat my casserole without added salt because I can't bring myself to ask for one more thing. I say I am sorry over and over to cover up the way it makes me feel to ask and ask and ask.
I am slowly coming to the realization that for those who have chosen to stay I am not in control of how they choose to react to my requests. Nor am I responsible for the choice of friends who have slipped away.
I have to stop saying I am sorry for asking for help, sorry for being in a bad mood, sorry for being sad, sorry for being sorry. My MS story includes chronic pain, pernicious depression, and cognitive and physical deterioration. And, if people are honestly willing to stick around, they are signing up for extra ordinary duty. I need help. All of the time. And it sucks to be needy.
I am trying to peel away the layers of guilt and obligation and accept that this is my life, these people have chosen to be in it and together we have a challenging journey.
So, I am not sorry - and, maybe I need to carry around a roll of quarters and ask everyone to fine me it they catch me saying it.
Thank you for choosing to be a part of my life!