Can I be real for a moment? No pretense. No hiding behind broken smiles or covering up the reality of what life is like for a person with multiple sclerosis. No complaining. No whining. Just the open and honest truth.
MS sucks. There are times when it’s not quite so “sucky”, but it still sucks. I have lost friendships, jobs, feeling in multiple parts of my body, vision clarity, my independence, and even my mind at times. There isn’t any part of my life MS hasn’t touched. I have to admit, it’s quite thorough in messing around in all aspects of my life.
Telling the truth about what is going on isn’t me not being positive enough. Denying the reality of what is happening isn’t the solution either. Sure, it may make someone looking in on my life feel better but I am not here to make someone feel better about my reality. I’m tired of covering up my pain just so someone else can feel better about themselves.
My reality is just that…it’s real. Just this morning I have already had a shower. Not because I needed one to start my day but because I didn’t get to the bathroom quick enough and ended up making a mess in my pants. I only get a few seconds notice that I need to make my way to the bathroom and this morning, well, I needed a few more seconds to be able to transfer myself onto the toilet.
Messes happen a lot with MS. When I’m not having bathroom mishaps, I’m fairly adept at dropping anything I get my hands on. That means that I leave a trail of messes all around the house. I think I’m worse than a toddler in being able to create messes that no one thought possible. I even use a bib when I eat so I don’t drop food on my shirt.
Those brochures of the person with MS smiling and energetic as they walk around the country…fake. If they were to put real people in them, sure we may be smiling, but we would be doing so with the aid of walking canes, walkers, wheelchairs, ice vests, and leg braces. Why hide those things from the world? I just don’t get it.
I won’t pretend that life is great when it’s not. I won’t hide my truth. What I will do is hang onto hope that there is still purpose and meaning in my life even with MS. What I will do is talk about my struggle so others won’t feel so alone and so they will be able to gather the strength they need to push through the pain they are facing in their day. What I will do is share a smile to brighten another person’s life. What I will do is not give up even when waving the white flag of surrender would be so much easier to manage.
What I will do is tell you just how amazing I think you are. You have come through the impossible…stronger, more resilient and braver than you ever thought possible.
It takes courage to face a day filled with uncertainty, pain, muscle spasms and weakness. It takes courage to lift yourself up after you fall. It takes courage to live with multiple sclerosis…and do you know what? You are doing it!