MS sucks, plain and simple. It magnifies things that never bothered you. It makes you doubt everything you’ve ever thought. It makes you take risks, avoid challenges, run from real connections and people you care about and makes you overly emotional over things that may not have even made you flinch before.
Yesterday my left arm didn’t work from the elbow down. A few weeks ago my right leg felt asleep all day and then my ankle hurt for 3 days afterward for no reason. Today I stopped hearing out of my left ear for a while. I can’t catch keys when someone throws them to me. I get dizzy and feel like I’m going to fall over naked and scare the shit out of my roommate every time I step in the shower.
A few months ago, in Europe, I felt like I tore my Achilles tendon, and had to cut my vacation to go to the emergency room in Germany. I was scared that I would be in surgery and within two days I was walking normally again. I didn’t have any other major issues the next ten days in Europe, but I did own a set of crutches that hopefully someone can use in Germany or Amsterdam at some point.
Reading makes me fall asleep. Looking at a computer screen gives me a headache. Sitting for a long time makes my legs fall asleep. Good thing I’m a recruiter that has to be on a computer for at least half the day.
Everyone has trouble getting out of bed. Getting out of bed is normally not a fun thing to do. But, I have to grab the wall next to my bed and pull myself out of it to steady myself as I stand. My legs and arms feel like jelly for about 20 minutes to an hour every morning. Sometimes the joints ache, sometimes my nerves shoot pain up and down my arms and legs.
Every once in a while I feel like my lower ribs and back muscles are caught in a vice grip. To call this the “MS hug” is a cruel irony, because it feels like being grabbed by a heavyweight wrestler trying to crush the breath out of you.
Cognitively I can’t look at a phone number and remember it 10 seconds later. I’m a person who memorized every stat of Don Mattingly’s baseball career at the age of 8 off just looking at his baseball cards for a few minutes. I forget everyone’s name, and call girls I date a meaningful ex’s name here and then. I’m a recruiter, I remember people for a living. A day with 5-10 tasks is a mess. Just planning out how I will attack them, and remembering what I need to do is exhausting.
Emotionally I’m a wreck. I fluctuate from thankful that this disease made me take chances and make the biggest move of my life to California, to full of dread thinking that I won’t ever have a future that I care about.
Alcohol helps the pain. It helps make things fun. But, then you drink too much; to add a hangover after every weekend on top of the normal things is to start off a week staring at exhaustion.
I love people. I love being in pubic and living in cities. But I can’t hear in crowds. Being around more than 2-3 people in a conversation is exhausting yet again.
I wonder if every girl I date is someone I want to spend a long time with, as to not waste time that could be spent elsewhere. As soon as I start to really like someone, I start to wonder if I’d even want to burden her with my future.
This leads to meaningless hook ups. It leads to me being that person that doesn’t call people back at times. It leads to me over valuing any relationship I care about and not being able to have that “just fun” period that every romantic relationship deserves.
Money doesn’t matter, because what’s a bad decision at this point? I look at the money going into my 401k, and think about the trips I could take with that right now. I think the only reason I do invest anything is to placate my image that I show to my true friends.
No one understands. Not even me. There is no finality. There is no plan. There is nothing but guilt when you feel good. When you act like a jackass, you don’t just feel bad for hurting the people that care about you, but you feel guilty because there are some people that were 100% responsible after they were diagnosed, and they’re in wheelchairs.
I don’t know if I’m a good person anymore because it’s who I am, or because it helps me get people to like me. When bad things happen to other people it can roll right by you with no effect, and I don’t have the empathy I once did. Caring what everyone thinks about me has always been a problem in my life, but now it’s becoming the opposite. A chronic disease diagnosis will change the lens through which you live life.
And still, I don’t have it that bad. Not even close. My MS is steady. It doesn’t get much worse from day to day. I feel good sometimes. I felt pretty great when I was super healthy last year to kick off 2016.
Getting involved and interacting with other people with MS is a painful struggle. I can’t see it. It overwhelms me with guilt. You have guilt, for bitching about anything, when you see how much worse it is for others.
But, overall, a lot of this guilt is magnified by the look on someone’s face and the tone of their voice when you comment on how you feel. People don’t know how to understand or how to react to chronic diseases. They look at you with either disbelief, because you look fine, or judgment, because they know that you’re not being healthy. They talk with sadness in their voice, because they feel bad for you, or they sometimes speak with a dread, because they have their own shit to deal with, and no one wants to hear a sob story.
Then you realize that me avoiding others with MS, especially the ones worse off than myself, makes me this last group. I’m the one that can’t understand their situation. I’m the one that’s not listening, that’s not able to act normal around them.
I avoid talking to family because I like the image of me doing perfectly, traveling around the world, living this extremely exciting life that I’ve put together for myself. I don’t want to brag about this life. I don’t want to downplay it and let them know that the reason you do it with no regrets is because you don’t know how long you’ll be able to do it. That you, honestly, don’t think you’ll ever meet another person that makes you feel that you would want to spend decades with them in your life, and that even if you did, you know that the same fear, the same lack of confidence in your own future may very well doom that relationship too.
This isn’t a sob story. I will fully admit it’s aimed at gathering some sympathy, but not for me. I’ve lived the best four years of my life since the day I was diagnosed with MS. And that is NOT hyperbole or something I’m saying to make myself feel better. The sympathy I want is for other people. Don’t assume you know what anyone is going through. Don’t judge others off of your snap assessments. Talk to people. Listen when people complain, and try to have empathy for their situation. Most importantly, if you are in a good situation, help out others any way you can.
Donate time, donate things you own, donate money. Be the person a few people can count on. Be the person that cares about the well-being of people you barely know. Be the change in the areas that you think need it.
In less than 3 weeks, I will be holding my annual fundraiser. This year we’re raising funds for cancer and for MS. Cancer is something that has affected my friends and family more than any other disease. MS is the single most influential thing in my life.
I can’t help the loved ones you’ve all lost, or I’ve lost. And, I don’t care about helping myself. I’m fine. I do this to help everyone else. I do this to make one mother, daughter, father, friend, or grandchildren have more time with their family member as we improve cancer care. I do this because I want to have one person that struggles to get by each day, but sticks with physical therapy finally hear the news that the doctors can reverse the effects of MS. Yes, I do this to feel better about myself a little bit, but I’m doing this and will continue because this makes me feel alive.
If you’re near SF, please come to my fundraiser and have a great time. Come to the MS Walk with me. In October, come do Muckfest with me, I promise it’s fun as hell. If you’re elsewhere, donate to something. A few dollars, whatever you can give, would go a long, long way. Find events near you, and go help out. But most importantly, do what I’m doing, and fight to not lose your humanity. Fight to keep seeing the beauty in the darkness, to keep feeling alive at both ends of the spectrum. Keep caring, keep listening, and keep trying to make one person’s life better each day of yours.
Fundraiser Event: https://www.facebook.com/events/216171922193119/
MS Donation Page: http://main.nationalmssociety.org/goto/MattWalker
Cancer Donation Page: https://www.crowdrise.com/f-cancer-lets-beat-it
Thank you, all. I appreciate everything more than I can express.