A piece I recently wrote referenced tightrope walking, and this got me thinking of a relationship. This relationship is the one between the person with ALS and the family caregiver. I think it is one of the most challenging tightropes walks to exist. Beyond the balance required, there are so many other factors that can affect this tenuous dance in the sky.
The two parties have to operate as a unit in order to successfully traverse this narrow path called ALS, every step a precarious one. Caregiver and afflicted, not in a synchronized dance, but an asynchronous one. Why asynchronous? It has to be, the disease dictates it.
The two parties must find a rhythm that is based on an imbalance of capacity, the caregiver gains additional burden; this is not aimed at the patient, but at ALS. ALS incrementally takes from the patient and adds more to the caregiver. This relationship never can be balanced, the patient can’t contribute as the condition progresses. The two can’t meet in the middle, there is no middle ground. The simple truth is that as ALS takes of each person at different times and at a different rate, making every tightrope walk unique to each. This makes it extremely difficult to lean on others; there is a general understanding of the experience, but still unique to each.
This is, by far, not fair at all. The narrow path, that is the ALS rope, sways in the breeze. Adding further challenge to the precarious walk. Each physical ability lost adds to the imbalance of every step taken. With the weight of the responsibility the rope comes close to snapping. Yet, it doesn’t. The tensile strength of the rope actually grows with the love shared by the two. This bond however strong, has its challenges that are based on the demands that ALS creates; with greater acuity comes greater demand to maintain a questionable quality of life. I say questionable because that is the ultimate conundrum, who is this for? Who is all the effort and energy for? The person with ALS or the caregiver and family?
The answer to this question can only come from the two on the high wire. The choice made has to be endured by both. One knowing they will be the burden, the other convincing themselves and the other that it isn’t. With love nothing is truly a burden, with love to balance each step, this tightrope walk can become a beautiful dance.
TJO
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