The Kitchen Table #391 - And On That Day, Like Any Other
Author's note: This article is a direct sequel to an article published in 2004 called "Revelations of a Magic Writer." In order to fully understand this article you must read it first. This is not a normal Magic request where you need to know some strategy before understanding the other; this is something very different. Trust me—read it first here and then come back.
All my life there's been one thing I've dreaded above all else. There's been one event that I've feared because of what it would herald. We all have muscle twitches and spasms. Every time a twinge occurs I glance down and convince myself that it's normal. It just happens to everyone. But this event that I fear would be different. My finger would contract and I'd look down and remind myself that it happens to everyone. But then it would do it again right in front of my eyes. And on that day I would know: the end has begun.
It's a dreadful thing to fear your own body. Yet it pales in comparison to the feeling of lost mental capacity. A genetic test revealed how powerful the disease is. My genes said that Huntington's disease would begin in my late 30s.
Last August at the ripe old age of 34 I noticed my sleep patterns becoming very erratic. I would tussle for an hour before going to sleep and then my sleep was fitful. I did some research and discovered that this is a common sign of HD. I also found out that mental signs of the condition arrive prior to physical ones.
After a few months I worked up the courage to see a neurologist and two genetic counselors. We met for about two hours during which time they informed me that it was clear I was evincing signs of palsy. I'd missed my moment. I felt cheated. It hadn't arrived. Instead of crashing through the gates my HD had stealthily crept up beside me. I hadn't even noticed.
At this point allow me to back up and remind people of what HD is just in case you ignored my note above and skipped reading the article. This is a genetic condition that is neurological in nature. It has two major impacts: physical and mental. Mentally it will cause memory loss change in personality and so forth. Physically it causes one's body and limbs to spasm uncontrollably. These ticks are called palsy. You might dismiss them as nervous twitching at first but soon things progress until eventually you are in a wheelchair then bedridden. This combined assault on both your mind and your body is traumatic. You are fighting on more fronts than is natural. I have this future to look forward to: a future where every day my body and mind slip a little further away from my inherent Abe-ness.
The greatest change over the last year has been mental. I have developed an unlooked for quirk. I will think of something have that concept in mind and then speak the opposite. Just last week I informed one of my fellow students that Sierra Leone was on the east coast of Africa when I had the geology of the west coast and other nearby countries such as Ghana and Togo in my head. I may say "up" instead of "down" and I have become a very uneven navigator in the car. It only happens about three or four times a week. I notice these things. My memory isn't as sharp as it used to be and I have to keep a planner now. For years I could keep my calendar in my head but no longer.
This constant ongoing assault on my mental acuity is much greater than any physical ailments—at least so far. As the British say "It's early days." I learned from my neurologist that many people have a slower run with the disease; for unknown reasons it progresses faster in some people than others. It often travels at different speeds from one generation to the next. In my mother it progressed to death in eight or nine years. There are cases where it may take twenty years.
I'm not sure I want to linger between life and death for years. It's an awful way to live. My entire life has led to this and there is no means of escape. No magic pill will erase the gene I carry in my breast. No panacea is on the way or just a few years from market. My doctor even said that the medication for palsy is pretty good for a while but the ones for the mental aspect are much worse. They do very little.
A life of progressing pain movement anguish memory loss and pills. It's going to be a long tunnel. I don't want to turn my article into one about Christianity but I'm often asked how I can make it and why I'm a Christian. Those answers are the same. I have the strength of the One who saved me and there's a light at the end of my tunnel. It may be darker than I imagined and this may have happened much sooner than was scheduled but my destination remains the same no matter what.
While I have entered the first step of my last dance before everything ends the song is just in the first stanza. I have many years before I won't be able to play Magic read a book write articles play video games or basically be myself.
I am a Magic player. It transcends. My new term for these games that transcend their genre and speak to us all are Alpha Games. Games like chess Dungeons and Dragons and poker. They create a community and illuminate a need we all have for each other.
I was playing Commander a few weeks ago against some new folks. I rocked Abe's Deck of Happiness and Joy. I had out a Honden of Seeing Winds and I drew Golden Wish. I told my fellow Commander players that I had drawn an illegal card and if they wanted I could just exile it and draw another. They asked what it was and I showed them the Golden Wish. I told them that I wouldn't retrieve anything broken with it since my deck already included all of the broken artifacts and enchantments. They agreed and I cast it. I pulled out a Commander deck with the Hondens I have in my box and I found Honden of Life's Web. I played it and they chuckled. No one was bothered and no one was upset that I had just broken a rule of Commander by casting a Wish (to be fair my deck is larger than 100 cards too since it's around 2600).
While this was happening I remembered an incident that occurred twice in two of my articles on Commander. Almost as an aside I suggested that—if you were so inclined—you could probably get your group to let you play with more than 100 cards. While playing cards that are off-color from your general may break the feel of the format I don't think very many are going to argue that the flavor of Commander is tied up in having exactly 100 cards instead of 125 cards. Each time I wrote this a few antagonistic comments emerged. That's not the rule. How dare I advocate setting aside the rules?
I understand that some people care about rules more than others. Everyone is coming from a unique place and has their own story of grief and pain. Yet consider the difference. One group chuckled when I Wished for a Honden. Then we have a handful of people who didn't just say that they were uncomfortable with the rules being broken but actually attacked me for suggesting it. Every hobby needs people of all sorts and all personality types. But we also need an understanding of that diversity as well. Not every playgroup is okay with breaking rules—I get that. But not every playgroup wants to play by the rules either. Both are out there.
Some casual players read tournament articles and some don't. Some casual players are very competitive and become upset when you call tournament players "competitive" rather than "tournament" players. Some players think natural Magic is played in a group and others think it's a duel. We are all different and that's a good thing. Don't become so tied into what you and your group are doing (which you love) that you want to force it on others. Just do what you love.
Magic is about more than rules and records. It's about us.
I haven't gotten enough Magic in my first weeks here in Pennsylvania. It will follow. I've just been busy with the beginning of school. I've played a bit here and there but not like I want to. It'll come.
It must. It's time for me to move out. Video games are a joy and I'll keep playing them. Books are awesome to read and I still will. Sports are neat-o to watch and I'll keep that TV on. But at the end of the day I have to break out of my 190 square foot apartment and do stuff. Life is about more than survival. We are lucky that Magic gets to be a part of it.
Life is precious. It slips by without notice. We look up and all of the sudden our disease has been here for months. And on that day like any other we realize how far the disease has come. Sure for me that disease is physically present. For all of us the disease is time. I spent my first six years in Michigan working in Ypsilanti a suburb of Detroit. My last three and a half years were in Detroit. I did more exploring and discovering things in the Detroit metro area in one year of living in Detroit than I did in six at Ypsi.
I want to see and do more things now that the end is in sight. There's no time to muck about; it's onward and outward. My challenge to you is simple. Find five things near where you live that you have never done. Then choose one and do it this week and over the next month do the rest. Go to a festival. Rest at a park. Tour a museum. Eat at an unusual restaurant. Walk around nature. Play a new sport. But most of all live. Live! This is your life so take it and live it.
All of our lives we have been spectators for too long. We play Magic instead of something else because it allows us to commune with friends and friends-to-be. So let's go out and do it. I look back at my life and I have never regretted spending time and playing Magic with my friends. I have regretted not doing it enough. Find some friends and enjoy your life!