Rafael Lara, who goes by Macho, shares his experience living with multiple sclerosis fatigue, including how it affects his daily routines, energy levels, and ability to spend quality time with his family while navigating life with MS.
Transcript
My name is Rafael Lara, but everybody calls me Macho. I am a tech instructor for a workforce development program. Outside of that, I’m a pastor. I plant a church here in Sunnyside, Queens, with my wife called The Table NYC. I am an author. I have self-published a book, and I am a dad to two teenagers.
I’ve only been living with MS for about 13 months, and I think it’s been a gradual getting used to the fatigue. I might look like I’m totally fine right now. In reality, I can feel the fatigue throughout every bone in my body, sitting here right now.
And that’s been probably the last month that I’ve started to kind of feel fatigue in a different way. Fatigue where I can take a nap, but it doesn’t mean that the fatigue goes away.
I can push through during the day, and I can exert myself. And if and when I do, it’s going to impact my evening time, my family life. I want to spend quality time with my family, and I’ll get frustrated and I’ll say, “I need to go take a nap.”
Now, in the grand scheme of things, it’s a short nap. Could be 15, 20 minutes. There’s times that I’ve napped for an hour at 7 p.m. because my body is just worn out, and I need to pace myself so that I can last.
How I work it in is whenever I feel tired is, you know, I’m like, “I’ll just kind of take that nap.” So having a consistent time where I’m scheduling in that break, whether it’s a nap, or just moments where I’m not ingesting things into my eyes and into my ears, that I can just allow my mind to just shut off.
I’ve been a creative for much of my life. About a year and change ago, when I was in a kind of downtime during my 9-to-5 job, I found myself finally jumping off of the ledge to try to write a book. And what the, what became the impetus for that book, it’s called “Control Alt Believe,” and it’s what happens when life crashes and faith reboots.
MS, for me, was the impetus for starting that writing journey because, for me, the reality of MS in my life was kind of like my life crashing. And what are you going to do in moments when things don’t kind of work out? So there’s a part of it where you almost want to prove to yourself that you can still do it, that this disease is not going to have a hold on you.
I know that physically I have limitations on my body, but I know that I still have a lot of stuff to contribute to this world. I have a lot of stuff that I can give, that I can bring.
The church that my wife and I lead, it’s called The Table, you know, here in New York City. And we love having people over for dinner. So when we started this work, what we started doing for the first four months, like we didn’t have any church services, we didn’t have any plan, any strategy. All we did was invite people over for dinner.
In a span of four months, I probably fed 79, 85 different people that came through our apartment. And it was, and it was, great. We now have a space that’s our church community space, but we want to continue just the beauty of hospitality and just being able to connect with people.
So what we’re doing tonight is actually the first night, we’re going to do six Thursdays in a row where all we’re doing is neighborhood meetups. We just want to meet people and connect with folks. We’re like, “Hey, if you show up and you’re new or you bring someone new, we’ll get you and them a drink and we’ll get you something to eat.”
I think as I look ahead with regards to my MS, I do hold on to a hope that I can be cured. But if that doesn’t happen while I have this disease, as long as I live, I hope that I can be a source of hope for others that are navigating stuff as well. That my story can help other people, you know, hold on a little bit more.
