Disabled and Whole

Today is World MS Awareness Day. And it kinda feels ironic because I forgot until recently that there is one day a year dedicated to MS awareness. Awareness is definitely needed and I am so glad there is a day like this to raise it. On the other hand, for those of us battling it, we are all too aware of MS every day.

Aware of the implications this disease has on one’s overall quality of life, and how it’s a “one day at time” fight to the death.

Aware of the hours spent on the phone, coordinating your care. I just got off what feels like the 2000th call to insurance, pleading for coverage for a continuation of one of my therapies..that has been helping for years. Same thing happened this time last year for the same therapy. All too aware.

I am all too aware of what feels like an electrical octopus stuck between my shoulder blades on my thoracic spine, feeding its lightening tentacles, or as Roman would say “sucktickles” 😆, up through the cervical spine and down my limbs. All too aware.

MSer’s are very aware of where every restroom is on just about every premises you go to. Thanks, Julie Stamm, for aptly naming this game to quickly find the bathroom “Spot the Potty”. Roman loves that 😆

People like me are all too aware each day of the unseen battles fought within and without, in this war on MS. Sometimes, when I get out of my bed in the morning, I envision invisible boxing gloves meant only for MS, and my goal is to knock it out today, or go down swinging. The image helps, sometimes.

However, all humans including myself, at one time or another, learn that most often you do not have control over the outcome of each battle. Some days, even though I’ve fought with all my might, I return to bed, feeling battered and bruised to a proverbial pulp, from a fight with an enemy that lives in my body. Some days, it feels like I’ve lost the fight. It’s good to be aware that what matters most is that you “took up the gloves” in the first place and fought that disease or challenge at all. If you are in a similar situation and feel this way, you are not alone, my friend.

People with MS are quite aware of the nature of “putting one foot in front of the other”. Will there be enough energy to go around today? One foot, then the other.

Only four years in and I feel like I’ve only begun to accept my current disabled body as it is, not judging it for the presence of MS, an oppressive tenant that I never asked for, one I wish I could just evict. Endurance is a learned skill, and as I’m learning, it’s a skill that is hard-won. It is a joy to take care of our bodies, and at the same time, we will all experience sickness and some form of disablement. It’s part of being human in this broken creation. Taking care of ourselves the best we can is a very good thing, and it can even be fun, when you feel well. It’s another thing entirely to take care of yourself well and endure unexpected pains and sensations, trying to meet the day as it comes, in constant fear that those pains and sensations are around the corner at any moment, all with the hope of somehow choosing to act in the way of love and not in anger from those pains. I guess it’s a lot of all of those things, and maybe a bit of celebrating the small wins and progress along the way. I find myself aware of the small moments of simplicity and beauty around me, steeping in the glow of a day well spent, nourishing myself and others with God, good things, food, love, or just plainly sharing one’s own presence existing in the same space as another. It’s being aware of the person within the body, no matter what ability or form that human may take, and learning to know and love that person who lives within, their whole being. This has become the joy of my life, seeing other humans this way. It’s an awareness of my fellow human that I welcome, because every human deserves to take up space and be loved.

People who have MS are all too aware of the presence of their community in this fight. There’s so many aspects of living life in a disabled body that are misunderstood by the population at large. As a disabled person, I’ve wavered between being totally confident walking down the street with my walking stick and slow right leg to feeling completely insecure some days when people approach me with comments or opinions in public. Some days, I subtly become aware that the most courageous thing I do all day to get myself up out of bed and going. I’m all too aware of the little miracles that Jesus sprinkles throughout each day like a soft rain, all of which somehow give the energy, strength, and assistance to attend to all matters that the day brings. O Jesus, make me more aware of You.

I’m becoming more aware of the incredible circles of support that exist when it comes to people in the MS community. I must confess, it can be challenging to connect with other people who have MS, as no two cases of MS are exactly alike. There are trends of symptoms experienced by many, but the daily experience depends a lot on where in the brain and spine the nerve damage has happened in the first place. Understandably, it can feel lonely, and hard to speak out loud about what’s going on in our lives. But talking about it seems to let out a tension I didn’t even know was in my bones, a tension that only vulnerability can release. I think that might be one spark that kindled this blog. My hope is that this can spark more love and empathy for our fellow beings, maybe even for ourselves. Being human is humbling. We are all aware of this, I am sure.

I’m more aware now of the importance of gathering with others who are going through similar daily struggles as you. This year, my family and I got to participate in our very first “Walk MS” race. I hear the word “race”, I am so aware of the twitch that happens in my legs with the instinct to run. It feels akin to what I imagine a “phantom pain” would be like. Cross country running is dear to me. To be honest, the “Gryffindor” determination in me won’t quite give up the possibility of jogging one day (with the clearance of my PT), but I am not quite there yet. I was apprehensive about how my heart would show up the morning of my first MS walk. I tried to take 10 min of alone time the morning of to pray and center my heart on Jesus, and my identity in Him. And at the same time, I don’t think anything could have prepared me for the rollercoaster of emotions at an event like Walk MS.

I became aware of a strange feeling when I attended this event, now being on the side of the person who deals with the disease the fundraiser is about, as opposed to someone supporting the cause. It’s a shift I wasn’t prepared to make, but here we are. Perhaps some of you know that feeling. I’m not sure I can quite describe it yet, as I’m still processing, but what I do know is that the support from others at the race was tremendous! Tears pricked my eyes all morning as I watched my family (and many friends in CT the following week!) come out to support. I just cannot thank everyone enough who donated and participated in the MS walk this year. The love is so felt. Thank you for supporting not only me, but those like me who deal with this life-altering disease.

Thanks to you all, our Wisconsin Walk MS team raised $1140 and our Connecticut Walk MS team raised $1265, hoping to push forward towards a cure! Thank you each for your generosity and especially your friendship and support! I know many of you donated even though you couldn’t attend in person, and it’s so appreciated!

Lastly, at the end of the day, which is usually my more painful window of time, God in His kindness is slowly making me more aware that simply because we are humans carved by His hands, we can all lay down our arms and breathe. Jesus subjected His body to becoming publicly beaten, disfigured, railed on, until He was literally beat to a pulp, His flesh pierced for our souls. And when He rose, the holes in his hands, feet, and side were still there. He didn’t hide them or “fix” then. His friend, Thomas, got to feel the wounds himself. That “person” who lives inside of you, that soul or essence, whatever you may call it, the thing that makes up you specifically, God paid the ultimate price, enduring unspeakable suffering, so that ours might look “light” next to the world that’s coming.

Thanks to Jesus, I am aware that as a child of Light, no measure of pain or despair could separate me from God’s love. And of this, I want to always be more aware.

Perhaps today, in honor of World MS Awareness day, we could each find a quiet, sunny spot, sit for a few moments and let it shine on our faces, and remember that, whether you feel it or not, the One who made you does love you, just as you are.

Happy World MS Awareness Day! Hopefully this helps!

Love, Chelsey

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