Rediscovering My Independence by Asking for Help

Asking for help is a Superpower!

Asking for help is not always easy. Sometimes asking for help feels like writing or throwing a ball with your non-dominant hand/arm; it’s just so awkward. The reason for this is because we rarely use the muscles in our non-dominant hand/arm for the same purposes of our dominant hand/arm. Similarly, asking for help can feel awkward, like the use of our non-dominant hand/arm. And it does not help living in an individualistic society that encourages us to “pull-up our bootstraps” and figure out how to do something ourselves, rather than admitting we need help. Therefore, if we want to do better at asking for help, then we must exercise our asking for help “muscles” the way we would if we wanted to begin using our non-dominant hand/arm like our dominant hand/arm.

So, how are we to do this? In the next few paragraphs I will share how I rediscovered my independence through learning to ask for help while living with ALS. Afterwards, I will provide you with some ways in which you can begin to make asking for help the new norm. And hopefully, when you get to the end, you will begin to understand that asking for help is not a weakness, but rather a superpower.

I have been living with ALS for a little over 5-years now. After receiving my diagnosis I remember thinking to myself, “well, I don’t feel sick, and I don’t feel helpless,” however, that was because for the first several months after I received my diagnosis, I could still do most everything I did prior to ALS. I could still get dressed on my own, bathe on my own, go to the restroom on my own, feed myself, and drive on my own amongst other things. The part of my diagnosis where my neurologist told me that with ALS the muscles in my body would atrophy over time, eventually leading to complete paralysis, had yet to become any part of my reality.

But then it started happening; my arms began to get progressively weaker. I was now struggling to dress myself, bathe myself, use the restroom by myself, and feed myself amongst other things. Suzanne, my wonderful wife and primary caregiver, could see me struggling and offered her help, but my Ego would often get in the way and I would refuse her assistance. Rather than fully accepting her help, there were times when I would spend 20-minutes just to put on a t-shirt, only to find myself utterly exhausted and frustrated.

What I should have done was accept her help to put my t-shirt on in 5-seconds rather than struggling and exhausting myself for 20-minutes plus however long it took for me to regain my energy. Like the saying goes, “Hindsight is always 20/20.”

I cannot say that I immediately came around to asking for help, but eventually I did. I began to realize that asking for help is not just beneficial for me, but it is also beneficial to my wife as my caregiver. She has informed me several times that she is not a mind reader so I need to let her know what I need; I need to ask her for help. 

Shortly thereafter, I started taking baby steps when it came to asking for help. I started asking my wife more frequently for help because I am most comfortable with her. However, as time went on I started to become more comfortable asking other people in my life for help, realizing that asking for help is not a weakness. By asking for help, life soon became easier (given the circumstances of living with ALS) not just for me, but also my wife, my kids, my family and friends who are around, wanting to help in any way possible.

Today, I am living in a complete state of paralysis because of ALS, and I need help with literally everything! I can no longer do anything physical on my own. And it sucks! The silver lining, however, is that I am comfortable asking for help and I no longer wait to ask for help. If you think about it, asking for help is like gaining a superpower because it makes living with such a cruel and debilitating disease, like ALS, easier and freer for you and your caregiver.

If asking for help is difficult for you, below are some actionable steps you can take to begin assisting you in asking for help:

1. If you have not realized it yet, ALS is a debilitating disease that can humble a person living with ALS (pLWALS) quickly. So, begin by examining your pridefulness and Ego in play. But give yourself some grace. We are playing the long game here.

2. Like in the movie “What About Bob?” starring Bill Murray, start with baby steps. You can start this by learning to ask for help with a few things early on in your diagnosis, rather than waiting and needing help with everything. For example, ask for help putting on that t-shirt! 

3. Ask yourself what you would do if the roles were reversed and a loved one had ALS instead. I imagine you would want to provide help to them, rather than witnessing them struggle to the point of exhaustion.

4. Find an ALS Community to support you through such an arduous journey. We were created to be in community with other human beings. And it is no different when you have ALS. This is a disease that we cannot bear alone. Plugging into a couple of ALS Communities has proved to be one of the best things I have done since being diagnosed with ALS. The help I have received through these communities, such as I AM ALS, and fellow pLWALS have been unmatched. 

In conclusion, I want to challenge you to begin normalizing asking for help, if you have not done so already. And for those of you who have already been asking for help, I want to encourage you to keep working your “asking for help muscles” until you realize the superpower properties that come from asking for help.