Living with ALS comes with a side of frequent frustration
When I want to help and can't, I'm often at the whim of my resulting emotions
Have you ever tried to assemble something or repair something only to finally give up and seek help? Such episodes were among my greatest frustrations before I was stricken with ALS. In retrospect, they feel like mere child’s play when compared with what I go through now.
As a result of how far along I am on the ALS continuum, I’m unable to scratch an itch, wipe my mouth, hug my wife and daughter, or get an insect off my face or any other part of my body.
It’s frustrating to have to wait for someone else to do those simple tasks, which most people take for granted. I guess it’s a positive that I’m not afraid of bugs. Most of the time, I just sit or lie in bed and wait for the itching to stop or the fly to leave. Very frustrating. But there’s more.
The lives of men and women are filled with routine and even mundane activities, some of which provide satisfaction, relaxation, and a sense of accomplishment. Doing yard work, vacuuming, taking out the trash, maintaining cars, doing laundry, and preparing meals are interchangeable no matter who does them — but they must be done.
The tasks may be tedious and boring, but they’re also frustrating for those of us with ALS who can’t do them. Moreover, the longer we need to get to them, the more frustrated we become. ALS can cause anxiety, guilt, inadequacy, and trepidation, which for me leads to a level of frustration that’s difficult to describe and accept because my wife has to do most everything now.
Dealing with my frustration
My frustration level is greatest when I’m not able to get involved with solving some of life’s problems for my family. For example, we’ve had two water leaks in the past month, and unfortunately, they’ve led to other repair problems. All I could do was watch my wife’s frustration as she made numerous calls and set up appointments to get the work done.
Additionally, my daughter has a major water problem that emanated from an adjacent property. It was the first time she’d experienced anything on that level. Talk about stress — this issue caused all three of us tremendous frustration.
ALS prevented me from making a two-hour drive to help her. All I could do was talk to her and recommend what she should do. For fathers like me, not being able to help your daughter, your only child, is the ultimate frustration.
Under normal circumstances, I would’ve been there with her to help resolve the problem. But ALS is far from normal. It prevented both my wife and me from going to her aid.
Some may say, “C’mon Jim, that’s not a huge issue. It happens to a lot of people.” Yes, it does, but these kinds of situations are relative from family to family. I just know that things would’ve been different if I weren’t severely debilitated by ALS.
I wrote a column titled “Finding My Way Through the Doorway Marked ‘Humility.’” Now it’s time for me to heed my advice from that piece: I should “find the victory in this.”
I called my brother, who has a wealth of knowledge on insurance issues and lives near my daughter. He stepped in and guided his niece through the morass of red tape and bureaucracy. And my daughter learned more than she ever wanted to know about water mitigation, drywall, flooring, and other related issues. I’m sure she also learned that sometimes life gets in the way of life. Victory!
The best outcome was the enhanced relationship that developed between the two of them. I rest a little easier now. While I’m still frustrated, I feel better than I did two days ago when I began writing this column.
Isn’t life interesting?
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