The number 13 turned out to be lucky for singer Will Downing. With his first dozen albums, the popular balladeer breezed into the studio, recorded his vocals and went about his merry way. But last year, as he embarked upon his latest recording, he fell down the stairs in his home. At first he blamed it on the fact that he wasn’t wearing slippers, until he found himself slipping in other ways: His muscles ultimately weakened to the point where it was hard to get out of a chair, cross a room or even breathe. Diagnosed with Polymyositis, an autoimmune disease that affects the muscles around the trunk area, he had to sing from a hospital bed or his wheelchair, recording only a line or a two at a time. To take such tiny steps to finish that 13th album, “After Tonight,” made him feel very fortunate indeed.
Pamela Johnson, ABILITY Magazine’s managing editor, caught up with Downing one evening at home, where he talked about facing the greatest challenge of his life, his biggest fears and the new faith he’s found in a higher power, and also in himself.
Pamela Johnson: How are you feeling today?
Will Downing: Pretty good.
PJ: Excellent. I was just listening to your new album and liking it very much.
WD: Well, you have to listen to it some more until you love it! Liking it ain’t gonna cut it!
PJ: [laughs] You had quite a challenge recording it. You started to feel some of the symptoms of polymyositis around the holidays last year?
WD: Yeah, that’s when I fell down a flight of stairs at home.
PJ: From the muscle weakness?
WD: Well, I didn’t know what it was at the time. I figured, Okay, I didn’t have my slippers on. My foot slipped. Then another thing would happen and I would blame it on something else. But it was this polymyositis slowly taking my muscles and reducing them to nothing.
PJ: I heard you were being a little hard-headed, and didn’t go to the doctor immediately. When did you actually get there?
WD: On January 3rd, 2007. I had gone through at least a month of these symptoms before I went to the doctor. I’m the type of person who can start feeling like something’s wrong—a toothache or whatever—and I can say, “Oh, I’ll be fine tomorrow,” and I’m going to put it off until it’s excruciating. That’s what I did in this case, and obviously I made the wrong decision.
PJ: Did waiting cost you?
WD: Doctors didn’t say that, but when you’re dealing with an illness of any type, the earlier the better. If you feel something, you should go get it checked out.
PJ: So that’s something you would do going forward, that was a lesson left with you?
WD: From here on out, that’s going to be my mindset. That’s what I would recommend to anyone.
PJ: After you fell down the stairs, what else were you feeling that was different?
WD: It felt as if I had someone on my back, like I was carrying another person around. When I walked, it was hard for me to lift my feet up, or to lift something, or to get up or even stand up. I’d be on a plane and they’d be deboarding, and it took me forever just to stand up and get my bearings. It was like nothing I’ve ever felt before.
PJ: You had plans to tour at the beginning of the year, right?
WD: Yeah, well, I’m always on the road anyway. We had plenty of dates booked for 2007, but this situation obviously sidelined that with the quickness.
PJ: One typical symptom of your condition is difficulty swallowing. Is that something that you dealt with as well?
WD: Absolutely. Eventually, everything that you’ve probably read about polymyositis came to pass for me: massive weight loss, problems swallowing, lack of usage of my limbs. I went through it all. I even lost my voice at one point.
PJ: Not only your health, it’s also threatened your livelihood.
WD: Exactly. You know with this thing, your lung capacity decreases extensively. You can’t breathe the way you’d like to. You can’t hold notes as long as you’d like to. All the things that you never really thought about are extremely important all of a sudden. It’s the crux of your life.
PJ: Compare and contrast before you were diagnosed and after you were diagnosed in terms of how you had to accommodate dealing with your condition. Before it, you could be casual about the process: It was your 13th album—like falling off a rock, basically.
WD: Yeah, before, it was just my normal routine. I’d cut tracks and go to a studio, cut the vocals, stand up and sing. After I got this, it was trying to figure out a way to get these vocals out, because I was basically relegated to a wheelchair and a hospital bed. So those were my two options. How do you want to sing today? You want to sit up or you want to lie down? It was extremely difficult, because breathing is the whole key to singing. And when my breathing was compromised, I had to find different ways to get the lines out.
PJ: How did you compensate for it?
WD: Recording, for those who don’t know, is rarely done in one take, and in this instance, we really Frankensteined this project together.
WD: That’s a hell of a way to say it, but that’s what we did. One day we’d do a verse and then we’d stop. Maybe the next day, if I felt up to it, I’d do a chorus. The day after that, if I felt like I could sing, maybe I’d do the bridge of a song or the end of the song. So it took me a lot longer.
PJ: How long would it usually take you to do an album, and how much time did your condition add to the process?
WD: I don’t know, there really isn’t a timeline on how quickly an album is put together. But under normal circumstances, I can probably do a whole song in about three or four hours, where in this case it might have taken three or four days. Same outcome, different procedure.
PJ: And probably more treasured, in a way.
WD: Well, more treasured, but also a mix of treat and trick in the same session. One thing that comes along with this lovely disease is that it messes with your head, so you’re extremely depressed. You have to deal with that fear: Am I ever going to sing again? and God, why are you doing this to me? That sort of thing.
PJ: What’s been your lowest point?
WD: It’s hard to say. I remember lying there one night going: If this is what it’s going to be like, I’ll opt out. I had days like that.
PJ: I thought it was really interesting that you recorded a Phyllis Hyman song No One Can Love You More since, as you know, her death was from suicide. Through her depression, she reached the depths of pain as well.
WD: Right, but some days I woke up and said,”OK, I’m going to fight back. This circumstance that I’m in right now, it doesn’t necessarily have to stay like this. It doesn’t have to define my life.” It helps to talk about it. It doesn’t make any sense to keep emotions to yourself. You don’t have to go through this alone.
My state of mind was affected by who I surrounded myself with, as well. The people that I surround myself with are very positive and very supportive. Also, everyone I’ve spoken to who’s had this has come back. It might have taken them a while, but they’ve come back.
WD: Pretty much. Some say 80 percent, 90 percent.
PJ: When you’re in the depths of the valley, I’m sure 80 percent or 90 percent must sound like heaven.
WD: Let me tell you something. If I can get up and walk from here to the door, I’m going to be happy.
PJ: You’re married to a singer [Audrey Wheeler], so I’m sure you’re able to commiserate with her about what singing means to you…
WD: Exactly. Singing is an outlet for me. It’s not everything, but it’s a great outlet. I think I’ve known what I wanted to do since I was young. And to be able to have fulfilled my dream is more than I could ask for. It ain’t been a bad trip.
PJ: A lot of blessings.
WD: Lots and lots of blessings. So this is the down side. And even in this, there’s a lesson to be learned. I haven’t quite figured out what it is, but I know there is one.
PJ: One lesson is to get to the doctor.
WD: Very true.
PJ: But I’m sure more is revealed as time passes.
PJ: How much weight did you lose?
WD: Oh! Under normal circumstances, I would average like this? between 200 and 210. At my lowest point I was at 115. Pretty kooky.
PJ: Oh, my goodness, Honey! How long were you in the hospital?
WD: This year I’ve easily spent six months in the hospital. The first time I went in, they kept me for three months, and I came back home and then I got pneumonia, and I had to go back. I went back to the hospital for another at least two, two and a half months. Now I’m back home.
PJ: How much do you weigh now?
WD: About 140, 145. So it’s gradually coming back. I’m probably one of the few people who can say, “I can eat whatever I want.”
WD: Everyone else is trying to stay away from bread and all these carbohydrates—
PJ: —ice cream and everything.
WD: And me, on the other hand, they’re trying to shove it down my throat.
PJ: Are you able to walk at this point yet?
WD: Taking a few steps here and there, working with the physical therapist, trying not to push myself too much. Just moving at the right pace.
PJ: What’s the treatment, then?
WD: Well, the treatment that worked for me was this drug called Rituxan. I’ve been on just about everything that everyone else has tried, but Rituxan works for me. It’s something that you take once a month by IV. It takes four or five hours to get into my system.
PJ: Excellent. And the doctor’s prognosis at this point?
WD: He’s ecstatic. As far as he’s concerned, he’s a musical genius.
WD: He’s seen me at my lowest and he’s seeing me come back. It’s good to have him look so happy about my recovery.
PJ: It’s common to have muscle conditions run in a family. Has anybody else in your family dealt with anything like this?
WD: No, not a soul. They don’t know where it comes from. No one can explain it to me. No one can explain anything.
PJ: We have weekly editorial meetings, and we talk a lot about our environment, and how much we can’t control. The stresses of our lives sometimes are not conducive to the level of health that we’d like to have.
WD: I agree with that. In my case, there are a lot of accolades to be gotten in the music industry, and I think that I was chasing all of them, sometimes to my detriment.
PJ: You had a high stress level?
WD: I was taking every gig that came up, doing two and three shows a night, chasing that almighty dollar. Get it while you’re hot. That has always been my attitude. I probably pushed it too far.
PJ: And now?
WD: I think that I would slow down a little bit more to, as they say, smell the roses. I’ve been all around the world, and yet I’ve never been anywhere.
PJ: You haven’t really spent time and gotten to know a place?
WD: Exactly. If I have a show in London, I fly to London today, we’ll take one day to kind of rest up a little bit, and the next day we’re working. After the work is done, we’re back on the plane back to America. It’s like, Okay, did you really see London?
PJ: What are some of the other roses that you might smell?
WD: I will spend a lot more time with my family. I have three children, and I don’t think I’ve been a bad dad, but in truth I certainly could have done better.
PJ: Do your kids recognize you?
WD: Oh, of course! They’d better!
PJ: (laughs) “I think that’s Daddy.”
WD: “Wait a minute, let’s see a profile!”
PJ: (laughs) How old are they, and are any of them musical?
WD: My oldest, Will Jr., is 22, my daughter, Siobhan, is 16, and my youngest, Aja, is 11. She’s very musical. I think she’s going to be the one to hold up the flag in the family.
PJ: Will, what would you say you’ve learned about yourself during this experience?
WD: I’ve learned that there’s more to life than the one or two gems that are put before you, and that you only go around one time. No one has ever come back and told me otherwise. So utilize your time wisely. Spread yourself around a little bit and enjoy what little time we have. It was a wakeup call for me.
PJ: It sounds also like your spiritual life grew richer?
WD: Oh, without a doubt. God has always been in my life and I’ve always attended church. But the relationship I have with God now is a whole lot closer than before I got sick. Like most people, when you’re down and in need, all of a sudden, Okay, He’s been sitting there waiting for you, and now here you come.
It’s like: Well, I think I’m gonna call on the Big Home Run Hitter now. I’m like most people, but I don’t think that when I come out of this I’m going to turn my back on the One who saved me. I got the message.
PJ: What about your relationship with your family?
WD: Oh, it’s fantastic now.
PJ: Has this experience changed it in any way?
WD: It’s always been good, but when you’re in this position, and I’m not talking about sick, I’m saying as an active, touring recording artist, there is a bit of separation. I haven’t been to a family reunion in 20-someodd years. I’ve missed birthdays and anniversaries and graduations and things like that because I was chasing the dollar. So maybe I can take some time out to put someone else first.
PJ: Needing to be home to recuperate, there wasn’t even a choice about whether you were going to spend time with family or not.
WD: Now I’m back in the sixth grade with my daughter doing homework. I no longer get a telephone call from her in whatever city I’m in. Now I sit with her at the edge of my bed, and it reminds me of when I was a kid. My mother was a schoolteacher, and she would make me sit at the edge of her bed and do my homework.
PJ: And your dad?
WD: He was a skycap at the airport.
PJ: Wow! Interesting. So neither one of your parents was an entertainer?
WD: No, no, no. I think I was adopted. My brother is an electrical engineer. My sister is a school principal, and my other sister is a schoolteacher. So I don’t know where I fit into this equation.
PJ: And where are you in the lineup?
WD: I’m last.
PJ: Oh, the baby?
PJ: Well, the baby always seems to stray the furthest.
WD: It’s certainly true in my case.
PJ: When you started recording again after your condition was diagnosed, did you switch out any of the material for After Tonight? No. 8 on the CD is God Is So Amazing. Did you plan to record that originally?
WD: Not at all.
PJ: Was it just the one song, or was there anything else you chose that was more of a mirror of where you were at the time?
WD: Other than God Is So Amazing, maybe the Bill Withers’ song, You Just Can’t Smile It Away. Those two are a little left of center of where the rest of the album is. But that’s where I was mentally and emotionally.
PJ: You talked to other people who have the condition. How did you get in touch with them? What have some of the conversations been like?
WD: When people heard what I had, they came forward and said, “You know what? My mother had that years ago. I’m sure she’d love to sit down and talk with you.” Or my next-door neighbor knew someone that had gone through it. So it was good to talk with these people and see what they had experienced, what they took, the exercise they did to get back, that sort of thing. It was great to have someone to talk with in detail about it.
PJ: What are some of the exercises you’re doing?
WD: A lot of trunk exercises, basically sit-ups from a wheelchair. Just imagine sitting at the edge of a chair, lean forward against your arms, and then lean back. You just keep doing that, where you have to use your abdominal muscles to pull yourself back and forth.
PJ: Starting out how many could you do, and how many can you do now?
WD: I probably started out at five or seven of them, and not being able to pull myself up at all, to today, I think I did 40, four sets of 10.
PJ: What other exercises do you do?
WD: Leg lifts: When I’m sitting in a chair, I lift my leg and hold it out straight for two seconds and then lower it. I do breathing exercises, where I might say my ABCs, sing them to myself. Breathing in through my nose, letting air out through my mouth, that sort of thing.
PJ: Is it a strain to talk to me now? It doesn’t sound like it.
WD: No, not at all, not at all. Every once in a while I’ll go on the oxygen to build my lungs back up, taking deep breaths.
PJ: What were some of the other things that you heard from folks with polymyositis?
WD: It affects each person differently, so some of what they told me was relevant to what I was going through and some of it wasn’t. Some people have gone to the extreme, where they didn’t have the ability to breathe on their own. They had to have a respirator. For me, my limbs, stayed pretty strong, my fingers, my forearms, but up a little higher in my shoulders and biceps, they’re extremely weak. So it’s a strange thing to be able to crush a can with my fingers, and then have somebody say, “Hey, reach over there and pick that up,” and I can’t move my arm.
PJ: It really affects the trunk, so the closer you get to the trunk, the weaker—
WD: That’s one of the things I really have to work on. That’s the thing that’s not allowing me to stand up straight. I’ll stand up with the aid of someone, and they might have to push me in my back in order for me to get my upper part straight. If not, I’ll just bend over. This thing took away all my trunk muscles.
PJ: With the people who said they got 80 percent to 90 percent of their former functioning, how long did it take them?
WD: It varied. I’ve heard some people say they’ve come back in seven months. Then I’ve heard some people say it’s taken them two years. Yeah, initially when I got sick and I heard seven months—
PJ: You hopped on that, right?
WD: I was like, “Great, I’ll be back by so and so.” And when I find myself being sick again, I’m calling people and saying, “Did you guys relapse at all?”
PJ: How has it been in terms of getting around in a wheelchair, reorienting yourself in your own home and in your life?
WD: Well, it’s a pain in the butt. I wish I could lie to you and tell you that it’s sunshine every day, but it is a pain in the butt. I haven’t been able to go upstairs in my house for a year. I am relegated to the downstairs area. Getting to the other rooms in the house requires that I go up 13 stairs. I don’t have that ability.
PJ: What is one of your greatest fears?
WD: That this very well could be my last album, and trying to figure out, okay then, now what? What do I do now? I’ve sung my whole life. Before that, I’ve only had odd jobs.
PJ: Obviously, as a result of the career you’ve had in music, you’re very familiar with a lot of elements of it. When you think of it now, if it weren’t singing, what might it be for you?
WD: Maybe management, maybe concert booking. If I had the patience to go back to school, I would probably go for law and then come out and do entertainment law. But I don’t have that kind of patience.
PJ: But you may develop it. It seems patience is actually being foisted upon you, if not coming from within.
WD: Oh, without a doubt. Another thing that I’ve done over the last 10, 11 years is become a photographer. So maybe I could really put my effort into that as well. I actually shot the cover of one of my CDs, All the Man You Need.
PJ: What would you say the biggest gift of this experience has been for you?
WD: I think for me, it’s about faith. If I never believed in anything before, I believe in it now.
PJ: You need a rock?
WD: Oh, yeah. When your back is against the wall and that’s all you’ve got, that’s really when your faith is tested. I’ve got a lot of faith now, in God and in myself. That keeps me motivated. My faith level is off the charts right now.
PJ: Tell me about how the faith in yourself has evolved.
WD: Maybe I reached for something, and I couldn’t get to it yesterday. But today I could. Instead of doing the 10 sit-ups, I might have done 11 today, which is going to push me to do 12 tomorrow. I have to believe that I’m getting better. I have to believe that God can cure anything. I may not see improvement in leaps and bounds. That’s not the way life is. But what keeps me going is that the light at the end of the tunnel seems to be getting a little bit closer.
To hear a song from Will Downing’s latest recording, After Tonight, go to www.abilitymagazine.com/downing