It is the uncertainty and lack of control over the disease that forms a barrier to feelings of excitement or anticipation. Questions rattle around in my head about my ability to handle the travel, leaving behind my electric wheelchair, and wondering if my illness will intrude on this dream vacation.
The pull between the longing, enjoyment, and anticipation for doing something with the hovering realities of what my body may or may not be able to do is a constant presence. I look forward to attending church all week. Often it is the one event where I interact with others socially and, my church family is deeply important to me. At the same time I know that the fluorescent lights, busy crowd, sitting for a couple of hours, and conversing with folks will take a tremendous toll. Often I sleep for hours when I get home and it can take two days to regain the limited strength I have. Every Sunday morning, the temptation to stay in the controlled environment of my home is difficult to overcome. Will there be a day when I just can't attend church--something I've done most Sunday mornings for over 12 years?
This push and pull flavors all of my interactions with others. Is it possible to understand the unrelenting impact that MS has on my life? Yes, five minutes ago I said I wanted to watch that TV show, but now my pain level has jumped and I need to go to bed. I know we made plans to go shopping, but my eyes are hurting and I can't handle a crowd right now. I should be jumping for joy about my vacation, instead I am trying to plan for the unplannable.
Another subtle pressure is my desire to meet my commitments and not disappoint the person or people I am interacting with. If, on this dream vacation I don't feel well enough to play--will my son and husband's vacation be ruined? When I can't meet deadlines, or make appointments, or even get out of bed it is difficult to accept my own disappointment--let alone handle the same reaction in others.
The danger in my efforts to push myself beyond what I know is my limit is the impact it has on my health. Just a couple of days ago I used a pair of scissors and a knife to prep two artichokes--it took about all of the strength I have in both of my hands and arms. Since then, my right arm is having painful spasms, and my wrist and thumb are weaker than usual. I expect that the strength will return and the spasms will lessen. All this from a few minutes prepping vegetables. I know my husband will be annoyed I didn't ask for his help. Does he know how desperately I want to be able to perform this routine chore?
The theme of my life is Grace:
• noun
1 elegance of movement. This is about accepting myself as I am
2 courteous good will: This is about accepting others as they are
3 attractive qualities or behaviour: This is about claiming joy-In spite of
4 the free and unearned favour of God. This is about the assurance of His plan for my life
6 a period officially allowed for fulfillment of an obligation. This is about accepting the unending care and commitment of my 'village'
7 a short prayer of thanks said before or after a meal. This is about acknowledging both the bitter and the sweet
• verb
1 lend honour to by one’s presence. This is about the value of existence (Psalm 139: 1-18)
2 be an attractive presence in or on. This is about accepting myself as I am
ORIGIN Latin gratia, from gratus ‘pleasing, thankful’.This is about choosing a life worth living.
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