It often feels as though this uninvited guest, MS, thinks only of itself when choosing to intrude upon my life. With little warning or concern it comes crashing in assaulting my body in a multitude of ways. It is sneaky in how it disrupts my life often leaving no visible signs of the damage it is causing. “You look so good”, I often hear. Loss of vision, diminished memory, numbness, fatigue that leaves you unable to speak in complete sentences, and a nervous system that becomes so sensitive that even listening to your children speak can become a challenge are often not detectable to the outside world. I wonder if I were in a wheel chair would people be able to see me more clearly? It is frustrating to be joyously dancing along to the rhythm of life one moment and then forced to change the tempo of that dance. This guest or partner that I did not choose is also my greatest teacher when I allow it. I simply need to extend an open arm and welcome it when it asks me to dance. The rest just happens naturally. Together we learn, heal, grow, and touch others. We choreograph a beautiful dance of life together.
It is the day after Christmas and I awake to find something not quite right with my eyes. As the day passes by it takes my vision prisoner. It is a holiday weekend and seems that doctors have not gotten the memo that a young mother in her thirties is finding herself in a pervasive darkness with no idea of the cause. The walk in clinic doctor suggests over the counter psuedafed for a sinus infection. While I am no doctor this just doesn’t make sense to me. I am not congested. I am loosing my vision! A late night phone call to the emergency room asking if it is safe for me to go to sleep given the events that have transpired since waking this cold December morning. They aren’t sure. Days later, numerous scans and visits to an array of different specialists and I am beginning to see things clearer though still very much in darkness. I am in some sort of wonder woman mode keeping busy with the tasks at hand raising two small girls needing to prove to everyone, especially myself, that everything is going to be ok. It has to be. I keep looking at the numbers on the microwave clock hoping they will come in to focus. They never do. A well intended nurse arrives to teach me how to self administer a five day course of an IV steroid treatments. I don’t feel comfortable with this set up. This shunt is fasted to my arm with tape but it doesn’t belong in my slight vein and I am not trained in this sort of thing. I have a degree in fashion merchandising and am being spoken to as if I have a nursing degree. The nurse leaves and against my wishes I am left alone holding back the tears as the taste of metal fills my mouth while the cold medicine fills my veins. This treatment is reducing the inflammation that is the cause of my vision loss but mostly it leaves me jacked up and frantically cleaning an already spotless home.
Still in denial, I go about my life convinced this is an isolated incident. Three years pass supporting this theory that I need to be true. Then it happens again. That second episode separated by space and time that doctors warned would come. I am in church one uneventful Sunday morning when I begin to notice my thumb disappearing. I can see it attached to my hand but the sensations are gone. Not again I think, frantically touching the surrounding areas to see if it is just my thumb falling asleep perhaps. Willing it to wake up but I know that is not going to be the case. Fear settles in as I listen to the minister unable to hear what he is saying. By the time I get in to see a doctor, half of my body has left me. More tests, scans, and specialists reveal unwanted news. I concede to allowing the doctors to take some of my spinal fluid which is something they urged me to do three years prior but i refused. That fluid belongs in my spine and I don’t want to part with it. Somehow sitting here unable to feel half of my body, I begin to think that perhaps I should just listen to the voices that belong to the white coats surrounding me. If piercing a needle in my spine will give me definitive answers after three years of wondering well then I decide that it is fine. They take my fluid and then the picture becomes clearer now than it once was and I have a diagnosis. I do not want this diagnosis but it is there for me to have.
I ask the doctor to give me a moment while I process the news he has casually thrown at me. His response is unacceptable. “It is OK to be devastated by this news. It is devastating news. This will likely debilitate you one day.” Certain this doctor must have been absent on the day that his training covered how to deliver unwanted news to wide eyed patients. What happened to looking at the glass half full? This doctor is taking my precious glass that I have managed to keep half full for over thirty year and smashing it right before my eyes. I grab my scans and turn towards the door fully aware that I will never be back. I will find a different doctor. The silence down the elevator and to the car with my husband is deafening. I had somehow recovered my half full glass and held it tightly beneath my arm. I needed this glass now more than ever. The lessons of the power of positive thinking that I was raised on were serving as a lifeline as I found my way to the car. My husband was diving right into this dreadful moment with me never letting go. I could see his heart hurting. How could I lift the fear from his heart when I could hardly feel my own beating? How would I tell people? What would I tell our children? It was all too much. I wanted to go back to my happy place of denial but that was a place I could no longer return. Back home, I escape to the privacy of my bathroom. It feels easier to be alone with this news. Standing in the checkered tiled shower, the tears of the past three years escape. I scare myself at the sound of my gut wrenching sobs and grasp for my half full jar. That jar of hope, strength, a belief that I can endure. The sobs are quickly replaced with a quiet stillness unlike any before. Peace replaces the fear. Strength and courage replace doubt and uncertainly. Somehow I know that this is not happening TO me for any bad reason. Rather, this is most certainly a gift or an opportunity for me. I might not know it now but I feel certain that in time the answers will reveal themselves and I will somehow use this experience to help others. This isn't the plan I want for myself, as a mother of two young little girls, but this is the hand I am being dealt and I will learn from it, grow with it, and touch others through it. This I know to be true.
Relapse remitting the doctors say. This is a fancy way of saying that I have periods of time during which I feel great and can live my life on my terms. The other part of this statement means that when I least expect it, my body might have very different plans for me and whether I want to or not, I have to dance along shifting and adjusting to accommodate its agenda for me.
These moments creep up on me when i least expect them but there is a rhythm to this dance. Most often it raises its voice at me when I am overdoing things, not listening to my body, not giving it the rest or nutrition it needs. Sometimes it just decides to intrude despite my best efforts to keep it away.
Recently skiing Telluride mountain with my family, the temperature is close to fifty degrees and yet my legs feel like frozen pillars that might crumble at any moment. Flanked by snow covered pine trees, on the most amazing ski run of my time and my legs are choosing NOW to argue with me! Please not now. I so dislike the way this uninvited guest in my life knocks on my door whenever if pleases with little to no regard to my plans. How selfish! I manage to escape a relapse this time but can feel an old familiar tug that is like a warning siren screaming to me to slow down. Sometimes I just like to live my life fast but I know better than to argue with this partner of mine. I know when it is time to listen. This has become a learned art over the years. A few weeks pass and I find myself practicing on my deep lavender meditation cushion. These periods of stillness each day have become a trusted and loyal friend to me over the years. They are on my side and together we work hard to keep these unwanted interruptions in my life to a minimum. This time, however, the stillness is speaking to me firmly. It is letting me know that it is time to adjust, to shift, to recognize my partner in this dance and respect it once again. I know what this partner wants from me though must admit that my spoiled self doesn’t want to give in to its demands. It angers me. Not now. Not again. I have things that I want to be doing. I don’t want to slow down. The years have taught me well though and so I will do what must be done trusting that it will lead me to where I am intended to go. The beauty in this dance is that I am beginning to really understand that when I listen to my partner ,MS MySelf, and respect it, we usually find a balance that allows me to remain healthy and participate in my life fully. The beauty rests in the moments when I am able to see that where it has led me is even more beautiful than where I might have landed if left to my own devices. So I continue on one day at a time, practicing, listening, trusting, hoping, and enduring. Life is my teacher and I am grateful for each and every lesson along the way.
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