A shortened version of this was published in MS Focus vol. 7, no. 2, Spring 2005:
Y2K. Remember that? It has a whole special meaning to me that has nothing to do with computers, but it does resonate with the whole end of the world thought in my mind. I think I was in shock for about six months, so I can’t say what I thought of the new millennium starting, but I can say that it became a whole new beginning for me. My world, as I knew it, did come to an end. Luckily, a whole new world opened up immediately after.
There is nothing like someone telling you that you have to go to the hospital immediately because you need to have a tumor removed from your spinal cord to really put you in your place in the universe and stop thinking every bad hair day was a catastrophe. And I was worried about Christmas Shopping. Sure showed me where I stood in the grand scheme of things. And if I thought for a second that life should stop right there, well, there’s nothing like your husband and kids imitating Arnold at the sound of the word tumor to prove that you can find humor in anything. I remember asking the doctor, when he told me he was doing the operation the next day–Christmas Eve–if the operation could wait until after Christmas, thinking he really didn’t have his priorities in order. His answer, “not if you want to walk after Christmas” showed me how wrong I was and received a quick “tomorrow then, that’s good for me” response from my humbled self.
I’ve noticed that if I pay close attention, I see the signs God puts out for me to tell me, yes, he’s here, he is watching out for me, but my troubles are not real high on his priority list at the moment so I just have to make due with what he’s given me and work it out. For instance, when I was thinking ‘why me...how could God let this happen...haven’t I been a good person?’, he sent a man into the same physical therapy session as me in the hospital that was more than happy to talk to me about recovering from spinal tumor operations as he was on his second in three years. And by the way, he’s glad to hear that, unlike his, mine was benign. Reality check. I get it God. Thank you.
I guess I wondered, like my kids did, why this had to happen at Christmas and why I had to spend Christmas Eve getting my spine cut open to remove a mass that was trying to cripple me. Then I realized that it happened because it was Christmas. See, if it wasn’t Christmas–a time of miracles–the neurologist wouldn’t have been going on vacation and wouldn’t have been in such a hurry to see an MRI of my entire spine instead of just the upper spine. My symptoms were so bizarre that there were two possibilities; either I was showing signs of MS (which would show on the upper and make him look for more signs), or I had a tumor on my spinal cord (which would show on the lower). Most of the symptoms, and history of symptoms, made him think of MS. But then there was hyper reflexiveness in my legs. So, since he didn’t have time before his vacation to get an answer on one and then check for the other if he didn’t find it, he looked for both. Oddly enough, he found both.
During my recovery period, the doctor wanted to double check what he found at the top of my spine so he sent me for another MRI; this time he wanted the brain done too. That’s when he confirmed his suspicions about the MS. I think I was expecting him to tell me there was another tumor at the top of my spine and that I would have to go back into the hospital to remove it once I was better. That was the worst I expected. Silly me. I think I heard him tell me I had Multiple Sclerosis in slow motion and it took me a few minutes to realize what he was talking about. I spent the next few months trying to get the picture of the woman that my brother used to care for, who had MS, who was in a wheelchair, who could hardly move her arms and couldn’t move her legs at all, out of my mind. I still find myself thinking of her and telling myself that she had a worse type, that she didn’t catch it in time, that she didn’t go on medication in time, and anything else that can distinguish her from me. It’s amazing how I automatically think of her and not the many people who live with MS with hardly any symptoms at all even though I have read all about them and have heard their stories and how they cope.
At this point in my life, I am amazed at so many things. Like it always amazed me how dark the ocean is – how deep and expansive and endlessly roaring, and so very, very dark. And how blue the sky is–how blue and expansive and endlessly changing from very, very blue to very, very, dark. I’m amazed at how a baby turns into a man before your eyes and almost without you noticing. It amazes me how people can take the silliest things so seriously and worry about stuff they can’t do anything about. It amazes me that some people can be so self-centered while others are so giving and caring. It amazes me how many horrible things are done in this world by people who are supposed to be people of God and done in the name of God and religion. It amazes me how people can look at miracles right in front of them and not see them. I don’t know if I was always amazed at these things, but you’d be amazed at the way having an incurable disease can change the way you look at the world.
I used to walk pretty fast most of the time; probably because I worked in New York for ten years. Now that I sometimes have trouble walking at all, I have time to look around and notice the flowers and the trees and all the people around me as I take a stroll to wherever I may be going. I guess I used to be in a hurry no matter what I was doing. I don’t know why. Now that I get so tired all the time, I have more time to take things in before moving on to other things and I have more time to think about the day and the world around me while I rest between chores. It’s really amazing what I’ve been missing all these years. I wonder what my hurry was; where did I think I was going that couldn’t wait?
I think having MS has taught me a few things. I realize now how judgmental I used to be towards perfect strangers and the things they do. Sometimes at work I would see people using the elevator to go to the first floor and get really annoyed thinking that their laziness was causing me a major delay. I sure got knocked down from my high horse when I became unable to walk up even a few stairs without causing major pain and weakness in my legs. And that look in people’s eyes when I get out of my car with the handicap hangtag and walk just as fine as can be–well, I know that look–I used it often enough myself. Of course that was before I appreciated the idea that if one’s legs are to get tired of carrying them, they should decide what they will be doing at the time, and walking from a parking lot isn’t ideal. I personally would much rather it happen in a mall than walking from the car to the mall, so I understand now.
I also understand now that a disease doesn’t only affect the person who has it, but others around them, especially those that care about them. My husband, being the introvert he is, needed to be at a counseling session to discuss how it makes him nervous when I need a steroid treatment and he has to help administer it. I used to think he would get annoyed when I couldn’t do anything at the times when my symptoms would flare up really bad and I couldn’t walk. My mother pointed out that he was acting out because he was nervous–apparently my father, being a Pisces also, acts the same way when he’s nervous.
I think what I learned most of all is that there are worse things than having physical limitations and that there are ways around all of those. Basically, I can give in to MS and let it take over my life, or I can take charge and change a few things so I can live my life regardless of what it’s doing to my body. As my Yoga teacher says, I’m more than my body; I’m body, mind, and soul. So, I take lots of vitamins, give myself shots three times a week, make adjustments to accommodate the body, exercise the mind as much as possible, and nurture the soul by praying for those worse off than me–and believe me, there are many.