Where There is a Will…

I have been in NC since 7/30 helping my Mom with some doctor appointments and creating accessible spaces in her home. Did you know toothpaste delivery can be accessible?

We have butt heads a few times because she has very conservative tastes and I want the BRIGHTEST and most BLINGY choice that ROCKS my world and yours too! We are compromising, however, and finding a number of ways that Mom can be independent. I have been pleasantly surprised by the number of products that can help folks with mobility challenges.

Even though I am thrilled with all that I am finding to help Mom with those “small everyday things” that are now MONSTROUS in difficulty level when living with ALS, some things are still a struggle. As you know I am late-deafened and hear with a cochlear implant and have Meniere’s disease. Mom’s ALS is Bulbar onset and speech is a real challenge. Some days are better than others, but I have to really focus to understand her and she has to really focus to make herself understood. I’d giggle at both of us if I didn’t feel like crying.

Already I am seeing Mom do things for herself that are simply AMAZING from where I am sitting. Mom has very limited range of motion and strength in her fingers, arms and hands. Yet where there is a will, there is a way. Believe me! I have seen her struggle and adapt and push through every waking moment of each day.

I am even challenging myself a great deal. I absolutely REFUSE to use the phone. The struggle is “real” and my anxiety spikes, so I request email, texting, and webcam calls. Lo and behold, while here with Mom and assisting in making doctor appointments and getting information about assisted living places, I have found a few ways to actually USE THE PHONE. I use a combination of Speaker phone with Cochlear implant bluetooth technology. It is complicated and time consuming and I often have to preface every call with an explanation that I may need to ask for repeats, but I am doing it! Where there is a will, there is a way.

Mom and I continue to work on finding ways to do things that were once simple. Things like pulling a shirt on or off, opening closed doors, brushing hair, and putting on Toby’s (her Shih Tzu) leash, and using utensils. Sometimes we find adaptive devices to accomplish a task. However, although a design may help one person with fine motor skill challenges, it just doesn’t work for Mom. We continue to brain storm because where there is a will, there is a way.

As a long-time member of the disABILITY community, I know how important will power is. But ya know something? Sometimes will power is not enough. I’m not trying to be a “downer” or eschew the power of believing in yourself. However, sometimes the WILL to succeed is simply not enough to overcome. I am learning that this does not equal failure. When I determine the only way to “get it done” is to ask for assistance, that doesn’t mean I am not being independent. Sometimes independence means being willingly dependent.

Say what?

I know! Right? But truly, sometimes independence means that we acknowledge we need other people and their help. This is NOT a disABILITY Advocate “deal breaker”. Think of it this way… asking for help and openly acknowledging I cannot do it on my own means:

I allow someone else to be a”help”.

I teach others that it is OK to not be OK.

I can collaborate with other folks about independence options. (Who knows who might invent some device to help others if I don’t explain the difficulty of a certain task?)

I provide the BLESSING of helping ME.

Having the will to be independent is one thing. Acknowledging the inability to actually do something without assistance is another. It’s not will power y’all. I will always need Finn (my #3 service dog) or someone else’s help to go from a seated position to a standing one. Standing up is not successful because of will power. For me, success in standing means I use the help available to me.

Do you struggle with certain tasks and everyday chores? There is a wealth of assistive devices out there! They aren’t free (though should be for those that need them) but great minds have discovered ways to independently accomplish a great deal of everyday tasks. Using “helps” doesn’t mean you lack will power. If anything, it means you personally house a wealth of will power. For you will take advantage of whatever help is necessary to SUCCEED. After all where there is a will, there is a way. Sometimes that means accepting help.

L. Denise Portis, Ph.D.