Day-to-day life with an incurable condition can be tough, but it can also put some things into perspective. Samantha Payne Smith, 42, and Ashley Hughes, 37, who met through an online support group, discuss how living with relapsing-remitting multiple sclerosis affects their mental health and how they manage.
Samantha Payne Smith: I experience a lot of highs and lows. I try to stay positive and keep moving, which helps take the focus off my MS. But I still cry a lot. Even my good days bring me so much anxiety.
When I notice I haven’t had any pain or dizziness, I rack my brain trying to figure out why. I’m on a disease-modifying drug. But what did I do differently that day? How much water did I drink? What did I eat? What didn’t I eat?
I’ll get sad and frustrated when I can’t pinpoint exactly what to do to make those good feelings last.
And even on my best days, I still have some pain. I’m thankful I’m still active, but I’m not as comfortable in my body as I was 5 years ago, you know what I mean?
Ashley Hughes: I know what that’s like. I can remember the day before I felt like this: I was getting ready for my god sister’s wedding, and everything was fine. I was sashaying around to make sure the shoes would work for the wedding. Something happened to my legs the next day.
I could walk fine in my heels less than 24 hours before. But with a snap of a finger, everything changed. Now I have to hold on to a rail when I go up and down stairs, and I can’t go for long walks with my mom anymore.
Thinking back to who I was before my diagnosis can be draining. When I see older pictures on Facebook or on my phone, I’m just like I miss that girl. And I grieve the loss of my past life a little every day.
Samantha Payne Smith: I feel the same. I’m 42 and was diagnosed with relapsing-remitting MS about 2 years ago, but my grief continues. Do you think that feeling ever goes away?
Ashley Hughes: I’m 37 and was diagnosed 4 years ago this December, and it hasn’t gone away for me. But I have moments where I realize I’m the same person even if I can’t do some things the same way.
People tell me, you’re still Ashley. You’re a singer, and your voice is still the same. Your impact on people is still the same. You damn near walk the same – because I have a certain way to my walk – you just have to grab a chair sometimes to keep your balance.
So yeah, I don't think that feeling of sadness or loss will ever go away completely. But I think you have to – and I have to – come to terms with the fact that this is a new you and some of these things are still the same but some of them you have to modify, and that’s OK.
Living Better and More Boldly
Samantha Payne Smith: I think I’m even better in some ways because of my diagnosis. I used to be a bit of scaredy-cat – show me the line and I’m going to stay right behind it.
But with MS, you don’t know what will happen tomorrow or even at the end of today. Now, I live bolder and push myself outside of my comfort zone to take risks and try new experiences, including speaking publicly about my illness and starting my own hair salon.
Ashley Hughes: I’m super proud of you because I never knew you weren’t a risk taker. But now that you mention it, I think we kind of swapped places. MS has definitely made me calmer, but it made you bolder. And I love that.
I used to be the bold person that you are now; I used to jump out of airplanes and go scuba diving. But now I’m very cautious since I don’t know what my body will do or how it will react to certain situations.
‘I figure if these feet still move, I better move them because I can’
Samantha Payne Smith. Maybe one of the differences between us is that my symptoms have mostly been mild. I have a lot of pain, but I’ve never had numbness to the point where I couldn’t move.
I can only imagine how scary it is to wake up one morning and something doesn’t work. And then to worry about what might trigger those symptoms again once you feel better. But, so far, I’m kind of the reverse. I figure if these feet still move, I better move them because I can.
Ashley Hughes. I love your verbiage: I’m going to use my body not while I still can but because I can. And every once in a while, I’ll run down to the corner when I get a boost of energy.
Samantha Payne Smith: Exactly. We may lose more of our mobility one day, but that day isn’t today.
I’ve got a question for you, Ashley. I know you haven’t really shared your diagnosis outside of your close family and friends. This is a huge step for you. How do you feel about being so open about your illness?
Putting It Out in the Open
Ashley Hughes: I’m not sure how to feel yet. But I know it’s going to work out, especially because I have friends like you and family who support me. And you should know that I appreciate that you’ve been pushing and encouraging me to speak up.
But there’s a battle between my spiritual side – the part that knows God has a plan for everything – and the physical reality of living with this disease. I can’t ever forget about MS because I wake up every day and my fingers are numb, and sometimes my leg gives out.
So yeah, emotionally, this disease drains you. It’ll get to you every day if you let it. You have to make a conscious decision not to let it take you there. But you also have to remember to take care of your body.
I know people need to know about this disease, and I want to do my part to raise awareness. But I’m hesitant to claim it because it’s the owning it part I don’t like.
Samantha Payne Smith: That’s ironic because we met through an MS support group online and you were such an inspiration to me. I felt like you were relatable and had something to say.
I immediately thought, “I want to be friends with her” and sought you out.
Ashley Hughes: And I’m glad you did because I didn’t see a lot of Black women dealing with this. Then I looked on your page and saw you worked at a school, too, and I could talk to you about my natural hair journey. I knew you were definitely somebody I needed to link up with.
I have a question for you: How did you feel the first time you came out and talked about MS with a group other than your family and friends?
Samantha Payne Smith: It was sobering and a little overwhelming. I still have a hard time grasping that this is my daily reality. But I’m glad we’re talking about this because you and I want to be people who share our story, right?
This is how people overcome: knowing that others are going through the same thing and that MS has many faces.
Show Sources
Photo Credits:
E+ / Getty Images
Mondays are Beautiful
SOURCES:
Samantha Payne Smith, 41, multiple sclerosis advocate and owner of Samantha CurlHaus, Chicago.
Ashley Hughes, 37, teacher and entrepreneur, Muskegon, MI.
