The Heart of Service

I often divide my life with MS into two parts: BC (Before Chair) and AD (After Disability).

I was diagnosed with MS in 1988, the beginning of BC. At the time, I think I was in denial. I dealt with problems as they came up, and I pushed it to the back of my mind. It wasn’t until 1993 when I had a particularly bad exacerbation that AD began. That’s when I went into a wheelchair.

I was mourning who I was. I was worried I wouldn’t have a good quality of life. I was worried how I’d be a good wife, mother and woman in the community. I was scared I couldn’t fulfill these roles. I didn’t know where my footing was in life or my sense of purpose.

Gradually, I realized that while my life was different, it didn’t mean it was void of purpose. I began to get more involved in my community. I got more involved with the MS Society amd advocated for accessibility. I realized serving others gave me a sense of fulfillment like never before.

On August 26, Houston was hit with one the worst natural disasters in America: Hurricane Harvey. My husband Mike and I lived across from the George R. Brown Convention Center. Because of the flooding, the city was inaccessible, so my neighbors and I were a lifeline to get supplies together for the shelter that was to be set up at the Center. Disaster relief organizations like Red Cross hadn’t arrived yet, so it was on us to take action.

I helped organize donations from our building. Blankets, clothes, supplies for babies, you name it. The first night, 500 people stayed at the Center. Within 48 hours, there were 10,000 people. I worked 12-hour days at the shelter for 10 days.

In helping with Hurricane Harvey relief, I realized a lot of crisis situations follow a similar pattern. At the beginning, everyone is there to help. It’s all hands-on deck, and there’s a sense of togetherness. But once the initial shock wears off, that’s when it can start to feel lonely.

After the initial flood of support for my own MS-crisis back in 1993, the dust settled, and I was forced to deal with the realities of life with this “crisis” on my own. People brought food for me in the beginning, but it was trying to find someone who’d drive me to the store weeks or months later that got tricky.

After initial Hurricane Harvey reliefs, I didn’t want people to feel alone, because I knew what it felt like to navigate the aftermath of a crisis alone. So, I gathered the contact information of as many people as I could. As of now, I have adopted 27 families and check on them regularly to address any immediate or long-term needs.

MS has been a unique gift. It’s slowed me down to ponder what I really wanted to do with my life. For me, life would have no true meaningful purpose without serving others.

Before I was diagnosed, I was preoccupied with my children, my social life and felt I didn’t have time to do anything for anyone else. MS changed my focus—I realized there’s no better time than now to do something for others. It really put in perspective what matters.

MS is also a mixed bag of emotions. I do wish I had my old body back. I wish I could ride a bike with my husband or climb a mountain. But to get rid of my MS would mean I would have to give up the wisdom, resilience and experiences I’ve learned in living with this disease. I want to keep the experiences and I want the physical body, but life doesn’t work that way. And to be honest, the lessons I carry in my heart and head outweigh all the negative thoughts in my mind.

I know in my heart when I’m giving back, I’m right where I’m supposed to be. I’m at peace.
Tags Activism & Advocacy, Symptoms      3 Appreciate this
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Lisa Sailor

Lisa is married to her high school sweetheart, Mike, and they have three grown children and two adorable granddaughters. They lived in Houston for 26 years.

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  • Angie   Apr 21, 2018 7:45 AM
    So beautiful written! Love your message and everything this stands for. Your perspective is wonderful.
  • Jackie   Apr 21, 2018 9:18 AM
    Lisa, I was diagnosed with RRMS in 2012 and have since found myself homebound more than what we like or I want to be. Thankfully the Hurricane only gave us torrential and massive amounts of rain where we live east of Austin and Bastrop. So glad that Harvey or MS neither broke your spirit or your willingness to adapt. That is the best gift for me the disease brought to pass. Like you, and am sure everyone else living with MS, wish for the wisdom and the fully functioning physical body. We still have so much to be thankful for and happy to hear you feel that way too. It is a hard row to hoe but well worth the effort.
  • Kayleigh   May 12, 2018 5:28 PM
    Thank you so much for sharing your story! I found it very inspiring and helpful to know what it must feel like to go through this. It is good to know that you were able to stay positive throughout the hurricane and the news of your illness. I am very happy to hear that you have a good attitude throughout all of this!
  • MSSI , admin Chennai chapter   Jun 4, 2018 11:21 PM
    LIsa, a beautiful story filled with high spirits of volunteering, Cheers to your determination, Keep the good work moving..
  • Lisa Sailor   Jun 5, 2018 11:40 AM
    Thank you for printing my story. It’s a true honor to represent the MS community in this way. We all have our challenges yet we still all have our gifts to share. I encourage everyone to find your gift.