Living with a chronic illness has changed me. Most of my life, I roamed my environment without giving my body much thought. If I wanted to take a walk, I made arrangements to allow me the time to do so. If I needed to go grocery shopping, then I did it. If I wanted to take a shower, I got up and took one. You get the picture. I enjoyed “movement without thought.” It is natural – for the able-bodied.
There are many like me: those who have been changed by a chronic condition. It is a new time for us. It is a time to mourn our loss and to weep over what might have been. We experience a harsh reality.
Myotonic dystrophy is a demanding master that looms over me with a whip and a chain. Only with permission am I able to move from one spot to another. It requires me to reassess everything I do. My assumptions are called out and shown to be false. Yesterday, I could remove an outer coat. Today, I assume I will be able to do the same action. Only, now, I find that I cannot slide my arm out of my sleeve.
For those of you who have not had a similar experience, it is difficult to fathom the process. How could you? Even I cannot anticipate the changes occurring in my muscles. One day I can open a shampoo bottle; the next day, I cannot. Then, suddenly, a week later, I can open it again. There is no rhythm, no pattern. It feels arbitrary. I am kept off balance.
Over the past seven years, I have lost the ability to take care of myself. The number of things that I can no longer do has grown. My heart still yearns to move without thought. It would be pleasant to wash and fold a load of laundry. Even more, I would love to be able to walk in the woods with my grandchildren. These lost moments sit quietly in the recess of my mind. They haunt me in my sleep.
It can be quite maddening – plans need to be conditional. Without notice, I find the need to rearrange my schedule to accommodate my body’s demands. I have started to say, “If I feel up to it, I would like to . . .”. Every day, the counting of energy expended on any activity needs to be taken into account. “Is it a good day for a shower? What else would I like to accomplish today?” I must find a way through the uncharted territory of my new life.
Underlying all this talk about movement hides the unspoken question: “How many days do I have before my “I can days” stop altogether?” Muscular dystrophy does not care about my dreams or wishes. Just like it robs me of movement, it is robbing me of time. Just like there was a time to be born, there will be a time to die.
This question of how many days is not just for the terminally or chronically ill. It is something that everyone should be asking themselves.
If you know someone who is struggling to live each day as it comes, take the time to reach out to them. They need to know that their value is not in what they can do for you or for themselves. Do not wait until they are prone and all their days of “can do” are gone.
If you are losing your “can do days,” mourn your loss, but find your joy, too. There will be plenty of time for weeping. Now is the time to heal and build relationships; remember to laugh at yourself and with others.
“There is a time for everything,
and a season for every activity under the heavens;
a time to be born and a time to die,
a time to kill and a time to heal,
a time to tear down and a time to build,
a time to weep and a time to laugh,
a time to mourn and a time to dance” (Ecc. 3:1-4)
6 thoughts on “How Many Days?”
Rose, this was saddeningly beautiful.
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Amanda, Your words touched my heart.
Dear Rose, I have shared your site with my closest girl friends. Nancy’s sister-in-law has ALS which is is consuming her quickly, she is sharing your site with her; Betty is an OT and anxious to share your story with her patients. You are loved and your words are cherished. Alice
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Thank you for your love and encouragement. You have made a difference in my life.
Rose — In a few graceful words, you touch loss and sadness, joy, realism, and idealism. In your particular experience, you show us all a universal truth. Just a lovely piece. Thank you.
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Such praise from an accomplished individual as you is humbling. Thank you.