Last Thursday I learned that I had new and active lesions all over my brain.
I was sitting at a bar on Fremont St, about to eat dinner on my first night in Las Vegas, already a bit buzzed.
Those that know me well, know I have a the ability to go off the deep end in Las Vegas or Atlantic City when I don’t care about myself, hell, even when I just get a little too drunk and make a bad decision. Las Vegas is the site of probably the action I feel worst about in my entire life.
About a month after I moved to San Francisco, with too much help from my parents for a 30 year old to even get, I officially broke up with my ex of 4 years. That same weekend, one of my longest friends was having a bachelor’s party in Las Vegas. About 10-15 of my high school friends would be there.
I had spent so much money on my trip out to SF, and I had such high rent living in Lower Haight, that it wasn’t the right idea to go out. My dad and my step-mother saw my relationship status on Facebook (again, I’m 30) and told me to do it, that they would help with the trip as an “easter” present, and that I could use the credit card that my dad gave me for gas for any expenses I needed until I got my first paycheck at work.
I jumped on the chance. Seeing everyone from home would be less frequent. Seeing everyone from home would make me feel better about my new adventure. I booked the flight.
On my first night in Vegas I got drunk and decided that playing poker was my best bet to not lose all my money, and figured I had about 500 bucks to lose. I sat for two hands until I looked down and saw two K’s staring up at me. Not to get into a poker story but 3 kings loses to a flush, and I was soon out 200 bucks. I checked the ATM and figured I wouldn’t gamble again, and then realized my geico payment had gone through. I had 0 dollars left.
I went back to the hotel and slept. The next morning I went drinking with my friends. I borrowed a little money, figured I wouldn’t do anything crazy, and then high school and college started for 3 hours in a bar at Planet Hollywood. I drank everything. I rolled down the steps of the bar for money, did chugging contests to win free drinks, and just got a little over the top. After a little it, I followed some friends to a pool party. Everything was looking ok, but after leaving the pool I walked by myself. I remember it being hazy, but I remember thinking if I just take 200-300 bucks out on my dad’s card, I can win it back playing poker (which, aside the previous loss, I’m actually probably a little above average at). Well I didn’t even make it to the poker table. Soon as I got money, I was at a blackjack table with a drink, then more drinks. It gets fuzzy here but at one point I had about $2000 in front of me in chips, and I know I went back to the ATM at one point – This being even worse, considering to get a credit card withdrawl, you basically have to give you ID, thumbprint, and signature, so I was technically committing fraud without using my own card (I have the same name as my father).
Well, as anyone that has gambled really drunk, by themselves, knows, this didn’t end well. I woke up the next morning feeling horrible. I needed to use my friends change to get a taxi to the airport, and I needed to overdraw my credit card to get an Uber back home from SFO (late flight, Bart was closed).
These types of stories were a little more frequent at 22-24, but I had moved past that. Going back to college, taking my loans out, dating and falling in love with someone that I went through a lot with, and just plain growing up had made me a more reliable, mature, and calm person. This stuff wasn’t supposed to happen when I moved to my dream city and was finally realizing my dreams. I was absolutely devastated, and felt as low as possible as a person.
Through a mix of luck, help from my mother, hustle, and friends in SF, I made it through the next 4-5 months without having to quit. It was close. Closer than anyone but my mother and my friend, Jennifer, know.
Now, 19 months later, after the most productive 2 months of my life, I’m sitting in that same city, hearing a doctor tell me, “not to get too down,” and that “we will need more time to figure out the right medication” and that this could mean I have a more aggressive MS path.
So much of these two months have been about my will to live for real. So much has been about wanting to experience life more. So much has been about the attention, about the acknowledgements that I’m actually doing it.
So much of it was not thinking and just going. Just do healthy stuff, don’t overthink it. So much of this has been about realizing that I’m not going to be able to move on with my life if I don’t address this, but that I can’t think about it because it makes me depressed.
Well, anyone that read my article from last week could see that after climbing the mountain, that depression was creeping in.
I’m not going to lie… it started to go off the rails. I took out money and lost it. I drank shots of whiskey. I cried in a bathroom stall. I paid $40 for my first cigarette in 34 days, because I wanted to punish myself for smoking it.
Worst, I had that thought, that horrible dreary thought that was kept in the back of my head for the last 2 years since my diagnosis. That one that I thought I was fighting off for two months. “You are going to be walking with a cane in 5-10 years so FUCK it, do whatever.”
I didn’t go full off the deep end.
I don’t want to give credit to any source and most of all I don’t want it to go to me. I tend to shy away from mentioning friends by name on here, because I don’t want to put their stuff out there, but my friend that was with me deserves a lot of it. The thoughts of letting all of the people that supported me the last two months deserve some too. One of my best friends, who I spoke with on the phone immediately after the doctor deserves some as well. The fact that I lost my debit card buying breakfast at the world’s premier hacker conference and had to cancel it immediately deserves credit for making it an easy choice to not get more cash.
But, I made it through the weekend. I drank a bit, hung out in the pool, walked around the conference trying to think about anything other than MS. I danced behind my friends at the blackjack table to 90’s hip hop videos, talked to girls, and ran around town. I didn’t buy a pack of cigarettes, and I didn’t gamble another dollar.
I’m not OK. I’m was actually hoping to be at August 28th when I got the news, because I knew it wasn’t going to be the good kind. It wasn’t the horrible kind, but it was mostly what I thought.
I can feel the fatigue, I can feel my memory weakening, I can feel the tingling more and more. I have been more and more active, and it has led to being more and more tired. Staring at a computer makes me almost fall asleep daily and walking 1-2 miles makes me feel like I climbed that mountain on some days. I know things weren’t going to be, “hey, we messed up, you don’t have MS!!” But, I didn’t want to hear it until I knew I’d be home the next day.
So, I’ve heard it now. I have my appointment at the end of the month to go in, and I need to prepare questions. I need to learn more. I will probably be on Tecfidera a little longer to see if it just hasn’t “kicked in” yet. I will have another MRI in 4-6 months to see where we are.
Looking online I saw that a study showed the amount of flare ups in your first 2 years can show some correlation to years walking without assistance. 1 flare up gave a median of 12-14 years. 2-3 was closer to 6-8. 4 or more was more bleak.
This puts me somewhere in the 2-4 range, because I don’t know when I actually felt good and when I’ve had the effects and when I haven’t. There’s been days where I feel dizzy and “out of it” for a steady 2.5 years. There was harsh vision and hearing effects 3-5 times. My cognitive ability has dropped significantly.
I would usually thrown in some inspirational stuff about how I’m going to keep kicking ass at this point, but I’ll just say this… The blog helped. The fund raiser helped. The messages from you all helped. It got me home from Vegas in one piece. It’s probably the reason I have money in my bank account, and am not smoking right now.
I’m just left with one question. What outlook do I take? Do I keep with my “I don’t have time to waste not living well” one, or is that more depressing because it may be more true?