Sunday, November 8, 2009


Today I attended a National MS Society sponsored function for African Americans with MS. I was interested in this event because I don't know any other African Americans (AA) with MS and have not been able to determine if my ethnicity has any bearing on the progression of the disease, primary symptoms, etc. As with all things MS, there is no conclusive evidence that ethnicity has any bearing on disease progression. Of course there is some genetic factors that make MS less likely in AA families, but since MS is not purely genetic, ethnicity is only a piece of a very large and complicated puzzle.

However, the first speaker (a prominent AA neurologist) did mention something interesting. She said that AA tend to have more eye problems and more waist-down numbness and pain. This was really interesting to me since I tend to have a lot of eye and leg problems. I also noticed that almost everyone at the meeting used a cane or crutches and the others were in wheel chairs. This didn't make me feel good at all.

The second speaker was a researcher and his presentation focused on the genetics behind finding the cause of MS and even with my science background, I found him hard to follow. They also served lunch while he spoke, which meant a lot of focus on eating and very little focus on the science.

The final speaker was a marriage and family therapist with MS and he was there to discuss the emotional side of MS. I was looking forward to this portion of his talk until I received the handout. I identify as a Christian and strongly believe that my faith helps me deal with the challenges of MS. However, I DO NOT believe that I have MS because I lack faith. I DO NOT believe that prayer will heal me. I DO NOT believe that I should turn to God and not a doctor when I encounter disease complications. After seeing the handout, I wanted to leave, but decided to stay and give the speaker a chance. Perhaps the statements on the page were going to be debunked and he was going to support a healthy mix of religion and medicine. But he didn't. When he started saying that a person may think they have faith in God, but the presence of MS is proof that they've faltered, I packed up my things and walked out. I honestly don't care what people personally believe, but I refuse to be shamed and blamed for being sick. No thank you. I plan to share my displeasure with the NMSS tomorrow.

The meeting location was about 10 blocks from my house, so I walked there. I used both crutches and took my time getting there. It took me 20-30 minutes, and I had enough time to get my bearings before the speakers started. The journey home didn't go so well. I was exhausted when I left and fatigue heightens all of my symptoms. I stepped out of the building, looked around, and had no idea where I was. I stood there a moment trying to get my bearings and figure out which way to go, but I couldn't remember the right direction. I walked around a bit and finally stopped someone to ask for help. The very nice lady was more than happy to help me, she just needed to know where I was going. "Jackson Street," I told her. "Jackson and what?" I opened my mouth and nothing came out. "Do you know the address?" I said, "Yes, I'm going home." And I just stood there, trying not to panic, and trying to remember my address or my cross street. I started to cry. She smiled and said, well let's go down to Jackson and see if anything is familiar. Of course, once we got to Jackson, I was still lost. And then my brilliant new friend asked me if I had any identification with my address on it. YES!! My driver license has my current address on it! She graciously walked me to the front of my building and after I said a million thank yous, she waited until I got in the door and waved goodbye.

I can't tell you how terrified, embarrassed, humiliated, and demoralized I felt when I couldn't get myself home. I've always been afraid of getting lost, but there's a big difference between being lost and not even knowing where you're going. I've been afraid of this happening, but didn't think it would happen so soon. I'm trying to remain positive and not let this one incident discourage other solo ventures out of the apartment, but I'm shaken up. I don't like the severity of my current symptoms (I had a fall recently and my pain is out of control) and I think my doctors need to reevaluate my treatment and come up with better ways for me to manage. Because, I'm trying to cope, but I can't live like this.

1 comment:

  1. Great post. It's hard for us strangers to MS to really understand what 'mental fog' is and your story make it completely understandable. So sorry that it happened, but thank you for sharing.