I can see it

I have these visions. Visions of myself in a strong body doing things that I cannot typically do.

It feels like a retreat from my tired body to daydream about these things. Many times, it is mundane thoughts like thinking about doing household chores without such effort or standing up from a chair without immense struggle. Occasionally, I dream big and think of running a marathon or going on a spontaneous solo trip. Some of the visions are just snapshots and other times I find myself lost in those thoughts.

Don’t worry, I don’t always live in la-la land. One thing that I have been working on is not letting anger take over when I am not physically able to do something. When I’m tired, I tend to get really frustrated easily. I am learning to pause, take a breath and give myself some grace, pray for patience. I am learning that sometimes I just have to walk away and accept that I tried my best. I do not give up easily.

If someone is around, I am asking for help more. If I refocus and come back to something, often times I am able to achieve the physical task I set out to do. Maybe I’ve brainstormed a different way to do it or revisited it when I was not as depleted. My strength always starts out stronger in the morning hours and then quickly wanes as the day goes on. It is a big difference. Evenings are hard.

My mind thinks at a really fast pace and has many desires and ideas. Slowing my brain down to match the speed of my body is difficult because the gap is enormous. That is on my list of the topmost frustrating parts of living disabled.

Because of these roadblocks, I feel angry and frustrated a lot. The kind of anger you feel deep inside your bones. The kind that feels like at any moment it may completely take over. That kind of anger is really hard to reign in. I am practicing letting it go because I don’t want to feel that anger so often, and these moments present themselves countless times throughout my day.

I have also realized sometimes it helps to pause with the anger and feel it, then release it and move on. Sometimes, the more we fight our emotions the bigger they become.

No one teaches one how to say goodbye to physical abilities. It just happens when living with a muscle deteriorating disease. One day you just notice, huh, I could do that yesterday, but today, not so much. Those little things, I can tell you, are painful to let go. They add up, and suddenly they become bigger chunks of things that you can no longer achieve. The guilt I feel when I have to push another task onto my husband that I used to do is heavy. It is frequent grieving. It feels endless.

I am recognizing that I need to be more diligent about “exercising” my mental strength. I think it is a good thing for all of us to do. After all, if you live long enough, your body will likely start to break down, too.

Spending time alone with my thoughts can be painful. It’s really hard for me to fully go to that place. It’s strange. When thinking about my declining body I often feel like I am thinking of someone else. It doesn’t seem real in some ways. Then I realize it is, in fact, me.

It takes humble courage to let anger go when you feel it so deeply. It is such a familiar place for me that ironically almost feels comforting/safe.

Letting go means stepping outside of my comfort zone and refocusing. Doing that mental weightlifting helps. Just as I visualize things I wish I could do, I also visualize becoming better at things that are actually attainable for me.

Small diligent steps over time can lead to immense improvement.

Until next time …

Amy Shinneman is a former National Ambassador for the Muscular Dystrophy Association, disability blogger, wife, and mom of two boys. You can find her blog at humblycourageous.com and reach her on Instagram @ashinneman.