Monday, March 31, 2008

Losing My Religion

Last Sunday was Easter but I didn't go to church. After all, I haven't gone the other 51 Sundays. Why start now? I should explain that I was raised Catholic and even conceived Catholic since I was born nine months after my parents married. I have been baptized, first communionized, confirmed and married in the Church. I did four years of hard time in Catholic school also, but I guess it didn't take. I discovered when I left home for college that if I didn't have to go to Mass, I didn't. Oh, I continued going for a while out of obligation and pure guilt, but never because I wanted to. To avoid conflict, I would go when I was with my family, just not by myself.

Then, I got MS and suddenly people are praying for me, having masses said and giving me angel pins. Even a friend of mine from college asked me if I had started praying after my diagnosis. I have nothing against people who have found solace in religion during hard times, but it just doesn't work for me. Plus, I feel it's kind of hypocritical to ask for divine intervention when you've ignored the Almighty when things are going fine. I also can't believe that I ever did anything so bad to deserve what's happened to me. I didn't lie, steal, cheat or murder; I just stopped going to church on Sunday.

During my college days, a fellow lapsed Catholic and I would say that when we were old women we would wear black and go to Mass everyday to atone for our youthful transgressions. I haven't turned my back on my religious upbringing. I have just gone in another direction. I am reminded that actions speak louder than words and I try to demonstrate by my actions that I am a good person. In my opinion, that does a lot more to make the world a better place than saying a prayer.



Monday, March 10, 2008

Do you go to a support group?

People often ask me this question and I'm not sure why. Perhaps they are thinking what they would do in my situation. The simple answer to this question is no. I have learned that there is no need to provide a lengthy explanation, although it's hard for me to keep my big mouth shut. Here is what I would like to tell them:

I have never been a joiner. I was never a girl scout, member of a club or a sorority sister. Having a serious disease like MS doesn't change who you are. Also, I need to have something more in common with people than this disease that I hate. It is good to have people who understand what you're going through, why you're so tired, why you are having trouble getting a complete thought out and other MS symptoms. However, I have less patience with these people and am amazed by what they say to me. I was flabbergasted when a support group member came up to me and said that their doctor told them they would end up in a wheelchair like me and that was a fate worse than death. If it hadn't been so close to Christmas, I would have given that woman the serious tongue lashing she deserved. What an ignorant, insensitive comment. For a moment, I wished that she would find herself in a wheelchair just to see how it felt.

When I was first diagnosed, my neurologist actually advised me NOT to go to a support group. He already knew enough about my personality to know that it wouldn't be a good fit. He told me that he had spoken to a group early in his career and it was really depressing. So, I avoided support groups early on because I didn't want to see how bad the disease could be. Now, I don't go because I don't want to listen to people complain when they are much better off than I am. I have my unofficial support group of friends who have MS that I can call or E mail anytime. We understand each other and we definitely understand that sometimes the last thing we want to discuss is MS!

Wednesday, March 5, 2008

Got the Blues

I mean this literally. For the past 24 hours, my urine has been blue and my tears have been blue. It's just a lovely side effect of the medication I am taking in an effort to control my MS. The drug is called Novantrone and it is a chemotherapy administered by IV infusion at the oncologist office. At least I only have to go through this every three months. All the other therapies that I've tried have required regular injections at home, as often as every other day. I was becoming a swollen pincushion.

My Novantrone treatment takes about an hour and that gives me plenty of time to reflect on my situation or take a nice nap. I find myself in a big, comfy recliner surrounded by people battling cancer. I think to myself that things could be worse, but I have learned that many of these people feel sorry for me. A woman with Stage Three breast cancer asked why I was there. When I told her I had MS, she said that at least her problem would have some resolution; either it would kill her or she could beat it. With me on the other hand, there would be no such resolution. I would have to continue to live as I am now with the prospect of deteriorating further. Leave it to a person with cancer to cheer you up.

I must admit that it is a surreal experience to look up at the IV poll and see the bag of blue stuff dripping down the tubing and into my arm. It's just not how I envisioned life. Most of the patients don't have a pretty blue medication like me, but one day the older gentleman sitting next to me did. However, his Novantrone was to treat prostate cancer. He asked me if we had the same medication, I said we did and he said that a probably wasn't treating the same thing. All I could think is that I would have to be a hermaphrodite and the thought of someone with MS and such an abnormality seemed rather extreme. I kept the thought to myself. Sometimes, it's best not to share.