Just Living
September 10, 2008
So, it’s been awhile since I’ve written. I guess I’ve been just living. Enamored with the ease of moving naturally, of walking through a crowd and just being one of them. Not anchored by braces and crutches and spasticity holding me firmly to the earth. I walk through stores, walk through the woods, walk to my seat in a restaurant, walk through the grocery store and no one, NO ONE stares at me wondering ‘what is wrong with her.’
I am just another person living in this world. That is the difference. When you look like everyone one else and move at their speed then you are one of them. Taken at face value as one of them. They cannot tell that something is wrong with me. They cannot tell how hard I fought to get here. They cannot see the pump inside me.
The other day, sitting in the waiting room of my physical therapists office, a man ‘walked in’. I use the verb walk and immediately you think of long strides, ease of movement, grace, swinging of arms, an almost involuntary muscle movement like a beating heart. Yet this man, in his forties, moved stiffed legged using two canes (not even lofstrand crutches) and each step draining his energy. My goodness, I thought that is how I must’ve looked. I understood this man in a moment. Feeling both grateful and guilty for where I stand now.
Seeing others struggle now, I feel like I must make the most of my well being. I don’t mean going off every day enjoying myself by immersing myself in all the activities I couldn’t do before. I mean helping others. That man, just watching him, made me realize how many other people have helped me. Without them I would not be in the position I am in right now. From my family and friends who wouldn’t let me give up, to doctors who care enough to keep practicing even though they can’t cure you, to past patients who forged new treatments, to strangers with kind words and actions, it is upon their shoulders I rode when I could no longer walk, move forward.
I feel I must make a commitment to help others make their life better so maybe they can enjoy just living too. I would really like to connect with others who have MS or other similar diseases. I know the importance of having supportive individuals helping you through tough times. I feel like a window of opportunity opened and I must seize it. As my son, who is currently taking Latin, says “Carpe diem, mom, carpe diem!”
A month later
September 2, 2008
Wow, I can’t believe a month has passed since my baclofen pump surgery. I continue to have the pump adjusted. It is a process like everything else in life. I go for weekly adjustments until we find the perfect dose. Meanwhile, life goes on.
I work with a physical therapist to help strengthen my legs and stretch out my muscles. This time there is light at the end of the tunnel. This is the third endeavor with the same pt. Bless her, she is extremely experienced in progressive ms, understands all that atypical ms encompasses and cares. Most of all she cares.
The last time I saw her, I was getting ready for the pump surgery-back in the beginning of June 2008. She tried to patch me up as best she could until the surgery, but was fighting an incredibly steep uphill battle. Finally conceding that despite her best effort I was losing ground. The best I could do was wait for the surgery, after which she would be of real help. The tears in her eyes as she had this heart to heart with me, touched me deeply. She cares about her patients. Her patients are real people struggling, fighting for better moments. The openness of her concession touched my heart so much that I really felt her pain. Felt and understood the helplessness of her words. She was in the business of making people better and I was the wrench caught in the cogs.
So, a month later with physical therapy script in hand, I sashayed into her office. With jaw dropped to the floor and tears in her eyes this physical therapist welcomed me back with open arms. Literally, open arms. Our smiles stretching from wall to wall. “Now this is something to celebrate! You have made my entire month by walking in here.” Her words touched my heart. She had helped me out so much in the past, I was glad to see her eager face again.
I barely notice the pump anymore. Once in a while when I move into a certain positions the pump bumps into my ribs. That I feel. Otherwise, not so much. We (hubby, son and I) nicknamed the pump ‘Tigger’ because it keeps me bouncing. Meanwhile, they (hubby and son) jokingly consider me a cyborg. I’ll gladly take that label.
I move so easily now. Still not as naturally as one should move, but so naturally that I can easily forget, if even for a moment, ms has changed my life. Have you ever been caught in a wind that starts at the top of the trees and blows threw you as it sweeps past. I was caught in one of those winds the other day. So what you say. Well I was actually able to throw out my arms and enjoy the sweep breeze because I didn’t have lofstrand crutches attached to my arms.
We ( I include myself before ms) take movement, simple, easy, graceful, natural movement for granted. The simple beauty of walking naturally, of moving with ease, without thinking about it, without mechanical assistance is something we should all take a moment and enjoy. Really, take a moment a walk, simply walk, take a few steps. Concentrate on just each step. Feel each foot fall, feel the ground, the floor underneath your feet. It is truly a wonderful sensation.
That is probably the greatest lesson I have learned this past month, these past few years living with ms: take each moment as it comes, enjoy every moment, see the simple beauty by keeping your eyes and your mind where your feet are. In this way you are always awake and aware enough to enjoy and live each moment. Good stuff. At least good enough for now.
Atypical Multiple Sclerosis 