I wrote a blog last week asking everyone who takes care of me a couple of questions. When we were done with the blog I asked Laura the same questions. She hesitated. I could see it in her eyes there was something very painful that she did not want to tell me. We dropped it, but over the weekend she decided to write her response to the questions. Talking about it would have been impossible. Too many emotions! So here is her answers.
When Akhil posed this question to me, my first thought was probably not what you might think. You might assume that the physical challenges would be the most difficult aspect of care, afterall, there is a lot of lifting required.
There is also a lengthy routine to his day which can be fairly demanding. Just the fact that my husband requires continual care may seem like the hardest thing to swallow. However, the most difficult part of caring for Akhil is not physical at all, but emotional.
It is hard to maintain a positive attitude day in and day out while I watch Akhil's health decline, but I know that is what he needs most. He needs to be able to count on me to keep his spirits up and to pull him out of the pit of despair rather than wallow in it with him.
Little by little, other abilities were lost. The next thing he lost was the ability to feed himself. This is probably where the realization of the level of time and care that Akhil would require hit me. Evidence of the disease’s progress was displayed in Akhil’s compromised abilities. I tried not to display any signs of worry; only hope that someday there would be a treatment or a cure.
It is hard to keep my need to express my pain under wraps so we can focus on Akhil's emotional pain as he confronts the disease that will eventually take his life. I recognize that he needs to be allowed to express his sorrow at leaving us too soon, abandoning his dreams and being humbled by the loss of his body's control without feeling like my pain is competing with his. There will be time for me to express my sorrow but now is not the time. Akhil needs to be allowed to feel that his pain is far greater than mine, and at this moment, it is.
Unlike the others that Akhil posed this question to in his previous blog, I entered Akhil's life many years ago when he was young, healthy and full of dreams and ambition. I expected my life with Akhil to be an adventure. That expectation has been and continues to be met!
On our 10th anniversary, I gave Akhil a picture of the wildest roller coaster you can imagine. To me, it was an accurate depiction of our journey through life together. Honestly, it still is an accurate depiction of our lives together.
ALS may have shrunk the course of our journey but we have not allowed it to alter the amplitude. We still experience some amazing highs together and we enjoy the slow climbs as we tackle new endeavors. I expect that before our lives together are over, we will experience the rush of one more rapid, exhilarating descent and then we will slowly come to a hard stop.
At that point, we will get off the roller coaster together. I will proceed to the next ride alone but hanging on to the vision of the wild ride we had together.