Pam Ayres - They Should Have Asked My Husband
I Married My Husband Knowing I'd Have to Take Care of Him
Four years ago, 's now-husband Steve was diagnosed with (amyotrophic lateral sclerosis), also known as Lou Gehrig's Disease, a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord, causing them to waste away. Steve, just 28 at the time, proposed two days later. She shares how the Georgia-based couple have faced the disease side by side.
We met about four years before we started dating, funny enough, because Steve had gotten a DUI, and he was assigned to my class. I was a drug and alcohol therapist. Obviously, we didn't date then. But one night four years later, I was going out with friends and he happened to be out with them, too. It was a really awkward moment when I walked in. But he was so charming, kind, and sweet. He's still so charming. He sat and listened to me for an hour just complaining about an ex that night. He didn't judge me or make fun of me, like all of our friends were. An awkward night turned out to be a wonderful beginning.
The very next day he called me. On our first date, I walked into the house where we now live together. There were Tiki torches, candles, and flowers, Frank Sinatra was playing, and he cooked me dinner. He cared enough about me to work hard and woo me. Don't we all want that?
But even that night, he had difficulty opening his crab legs. He'd had symptoms for about two years and kept getting misdiagnosed. Years playing hockey gave him broken bones and nerve damage. So when it started in his wrist, doctors said it was leftover pain from an old break. Then when it moved to his elbow, he had prior nerve damage so they said it was that. Foot drop started, which is a huge thing with ALS. But doctors assumed it was a reaction to having a metal plate in his foot. Everything was so conveniently explained — until he started falling. That's when they started doing serious testing.
We dated for four months before he was diagnosed. I went with him to that last appointment on August 9, 2011, almost exactly four years ago. We didn't believe it at first.
The next day, he told me, "You don't have to stay with me. You heard the doctor — it's going to be hard. I'm going to start losing control. If you want to leave, it's okay." I was like, "I'm not going anywhere." That was the first time we ever discussed marriage at all.
On August 12, he asked me to go on a walk to this place by the Chattahoochee River we always went. When we got to our spot, we stopped. He said, "I know you said you're always going to stay with me. If you are, will you marry me?" And I said "yes." I didn't even expect a ring, but he went all out for it.
I had never wanted to get married. But surprisingly, I didn't have any hesitation. Most of my friends and family thought I was crazy — that it was too soon. But when I told them I was certain, they didn't question it. This was real. We could face anything.
Two months later, in October, . Our friends chipped in and got us a honeymoon on a private island in Belize, which was amazing. We really tried to get out as much as we could while we could. At the time, Steve was still walking, though I needed to help him a lot. We were both naïve and somewhat in denial. We didn't really think the disease was going to progress that quickly.
The day after our wedding, he started a two-month, blind clinical trial. We didn't know whether he was getting the medication. But when he got really sick, we were hopeful that meant he was getting help. He also started falling a lot more. He didn't want to face that he would have to be in a wheelchair. That was really our hardest thing to accept. Within 5 months of our wedding, he was in a wheelchair full-time.
In those early days, we would fight about pain medicine. He would have excruciating pain and want to take extra doses. I had to be the tough caregiver and enforce the doctor's order. Or I had to tell him, "You need to get out of bed today because your lungs haven't moved in awhile." They weren't typical newlywed fights over stupid things like Facebook. It was intense.
But we also continued living our lives. When he got in the wheelchair, we started traveling — for a year and a half. We went on a cross-country road trip to California and back, spending New Years Eve in New York City. We really tried to pack in as much as possible.
Another precious memory was at Wanee Music Festival in Florida in April 2013. It was our first "dance party." Back then he could move his wheelchair more, so we started to dance around. Then later, I picked him up onstage and we got to dance together, me holding him. Dancing has always been our thing. If we're having a weird day or a bad day, we dance it out. Costumes are usually involved. It's a good release. And it makes him smile.
But then he lost his ability to speak. When we were in Pennsylvania in April 2013, he suddenly got really sick with pneumonia. We rushed home to our hospital in Georgia, where he underwent an emergency tracheotomy. He hasn't been able to use his voice since. (These days, Steve "speaks" with the help of a visual communication device.)
From there, it became a spiral. We'd be home for a day or two and then end up having to take him back. This went on for months. He died twice, but the hospital staff saved him. Steve slowly started to lose a lot of weight — down to 67 pounds. He developed gastroparesis, where you can't empty your stomach. Everything I fed him, he would throw up. I battled insurance companies because they wouldn't cover alternative food until he got below 70 pounds, which is insane. Finally, he got on IV food, which he's still on, and on a ventilator in January 2014.
Living with ALS
This is our life right now: A typical day for us starts at 8 a.m. I get up, do some yoga, and get myself grounded. Steve wakes at 9. We have about an hour routine of medicine, antibiotics, bathing, that stuff. Then Steve works the stock market all day.
I stopped working full-time in early 2012, when he started falling a lot and was having trouble eating because people weren't comfortable feeding him. And I don't miss it. I actually wouldn't want that job again if I could. Steve made me realize I wasn't really living the kind of life that I wanted — it's one of the little blessings that ALS has given us, opening my eyes to how I'm supposed to be. We find a lot of blessings in the bad. I was just going through the motions. With a master's degree, I felt like I was supposed to work in my field and I was a really good therapist. But I wasn't really fully connected to the job.
We've been very blessed and have made it so far. Steve paints with his wheelchair, so we sell those to make money. I sell paintings, t-shirts, and jewelry. We've made a documentary called "Hope for Steve" that we're waiting to be distributed wide.
Steve now weighs 150 pounds and is doing amazing. We still get out every so often. It's obviously getting harder because it's painful for him. But he's very stable right now. We have to consistently battle infections, but this is the best I've seen him.
He's Still Steve
Inside, Steve is the same man. He's sharp as a tack. And he just lets his spirit shine, despite losing his body completely. He goes out of his way to make people smile, especially me. My 30th birthday is next week, and I just found out that he scheduled a photo shoot with clothes, hair, and makeup, in our friend's farm with her horses. He planned that whole surprise using only his eyes — he has a communication device that he uses with his eye. I'm a sap about Facebook, so he'll do a post to me a couple times a week, just to make me happy. He has a cute nickname he always calls me: "boopy poopy ice cream scoopy."
Every day, he thanks me, too. It gets hard sometimes, to be here and not be able to leave the house. We have nurses twice a week. But for the most part it's just us keeping each other entertained. Somehow, I never get sick of seeing him all the time.
And, honestly, we appreciate life more. Our days traveling used to start asking, "What's happening next? Where are we going?" Now, we say, "Whatever we have today is a blessing because we're here together." It's a weird gift that we've been given. I don't know if either of us would have gotten to this point without ALS. And I have no regrets. Each argument or hiccup or mistake taught us something huge. Without them, I don't think we would have survived.
When Steve got his diagnosis, the doctor told him the average lifespan is 2 to 5 years but he also said there is hope, because associations like the ALS Therapy Development Institute are doing a lot of research. There are many clinical trials, especially after last year when ALS took over the headlines with the Ice Bucket Challenge. We cling to that.
Sometimes people ask us how we still feel hopeful. But how can you have life without hope?
Video: The person you really need to marry | Tracy McMillan | TEDxOlympicBlvdWomen
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