Asking Myself The Hard Questions
MS is so unpredictable. This chronic disease often presents mysteries that are quite unsolicited, such as, how I will feel on any given morning. I can retire to bed feeling totally fine but awaken numb, tingly, and fatigued. Yet, I can retire to bed numb, tingly, and fatigued but awaken totally fine.
Facing the inevitable
Something that I could do a year, month, or even a week ago can change leaving me in a state of remember when?, when did that happen? and what now?
Those may seem like simple questions but can be hard to answer, deal with, and face. When it comes to living with MS, I find that it's inevitable to ask myself and face the hard questions.
Remember when?
Reminders of yesteryear are all around. A picture on the wall, a random photograph, or Facebook even features memories that show photos and posts from one to several years ago. Although interesting to view much of the time, I can't help but focus on how, back then, I was often at stages where I was able to walk alone, with my cane or even a walker.
I can't help but recall how I could easily stand straight, sitting in chairs other than my lift and wheelchair, and how my hands were not curled. Sometimes I just smile nostalgically, other times I question "Who would've thought?" or "Where will I be in the next x amount of years"? It's the latter question that I find the hardest to deal with at times.
When did that happen?
Sigh. The frustration of acquiring new or worsening symptoms. One night, I was writing late and once I retired to bed, awoke (seemingly) a minute later being wheeled into the ER as a result of my very first seizure.
And then, at one point, I could walk, yet now I am sedentary. I've always loved the summer, but now I must be extremely cautious of the very warm temperatures. The hard questions here are: What could possibly be next? Where will this all lead?
What now?
Physically, things have changed for me and I require more assistance. Some of which are beyond the scope of my home health aides. At this juncture, for instance, I am unable to transfer so my lift chair is pulled back and replaced with the appropriate chair that's needed for what I need to do.
The aides are unable to do so as they consider it 'heavy' as opposed to awkward, so my children must help with that task. Some hard questions here would be: What if the children aren't here and I need to use the bathroom? Will I have to resort to changing from aides to nurses to use Hoyer lifts or catheters? Will I have to eventually reside in a nursing or assisted living home?
Coping with the answers
Perhaps it's actually not the hard questions that I ask myself, but rather the potential answers that bring me pause. It can be overwhelming. Franklin Roosevelt said, "When you come to the end of your rope, tie a knot and hang on."
However, in these times of reflection, I rely heavily on my faith. The words in Proverbs 3:6 instruct me to acknowledge Him and He'll direct my path. Also, I pray the Serenity Prayer which asks God to grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.
So, when it comes to asking myself the hard questions, my faith affords me the peace I need to deal with and face the potential answers.
Editor’s Note: We are extremely saddened to say that on December 2nd, 2024, Dianne Scott passed away. Dianne’s advocacy efforts and writing continue to reach many. She will be deeply missed.
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