Every Family Has a Secret

A secret can be a dangerous thing. It has the ability to destroy relationships, create isolation and take control of your life. Looking back, I don’t even know why I agreed to keep quiet. It was never really asked of me, and yet I followed along. At least until the request was actually verbalized. It was only then that I was able to tell my husband: “No, I will not pretend that you don’t have Multiple Sclerosis anymore.”

It didn’t happen intentionally. When I first met my husband he blurted it out in the middle of a conversation, as if quickly ripping a band-aid off so that I may have time to gather my things and leave. Obviously, that isn’t what happened. However, looking back I see how vulnerable he was in that moment. It had happened to him before. M.S. didn’t fit into the picture perfect life for someone else and he wanted me to know that he was damaged goods.
I’m not going to lie. I was apprehensive. But love is a gamble for everyone. Healthy boyfriends are not guaranteed to be healthy husbands and he is the person that I love. No matter how my warped sense of humor at cocktail parties comes across.

The secrets started after I began doing research on the disease. In short, the National MS Society describes it as “a chronic, often disabling disease that attacks the central nervous system, which is made up of the brain, spinal cord, and optic nerves. Symptoms may be mild, such as numbness in the limbs, or severe, such as paralysis or loss of vision.” Even shorter, my husband’s body is attacking itself and could one day be unable to walk. It’s scary no matter what way you look at it and I really needed to talk to him about it. However, whenever I approached the subject he would shut down. He didn’t want to talk about the realities of what could happen to him. And for the most part, he was perfectly healthy. It wasn’t a part of his everyday life. I noticed that his family rarely discussed it as well. Not because they didn’t care. My husband was just really flippant about the whole thing and refused to allow it access into his life and we followed his lead. As our relationship progressed, I would come to understand that:

1. M.S. can be difficult to diagnose. He had gone in to see why he was losing feeling in his hands. After months of research, he was told that “we don’t know what the problem is. It could be M.S. or it could be something else.” Basically a young man was told something incredibly scary and then sort of left to his own devices on how to handle it. His parents found out later by accident.

2. My husband clung to “something else” like an antidote. If he didn’t acknowledge that he had it, than quite simply – he didn’t. Not having it became the way he waged battle on regaining control of his hand and how he would live his life for several years.

Not having it became my way to deal with it too. I made excuses for oddly timed mood swings and would pat his arm when he was more tired than the average 30-something. I knew he didn’t want to be defined for what he “didn’t have”, so I rarely told people about the possible diagnosis. I kept it a secret at work and rarely confided in friends. In retrospect, I was giving it more power than it should have had because making it into a secret meant that I was ashamed of my husband. I wasn’t – I just wanted to respect his deep desire to be normal.

One would think that we snapped out of our bubble when we had our daughter. We didn’t. Not once did we discuss how we would handle Daddy’s non-illness. Our naivety is embarrassing to write about. But I also don’t think we’re alone and writing about it is my way to let others know that they aren’t either.

The blinders started to slip one spring day when we decided to go running. My husband is all legs and was a long-distance runner at the time. Marathons were planned at two or three-year intervals. I am 5’4” and all torso. Basically, a picture of us running together was me running as fast as I could while he politely tried to look like he wasn’t speed walking. However, on this day he couldn’t keep up with me. I remember looking back to see where he and my daughter, who was in a stroller, were. I could see that he was having a hard time picking up his feet and my daughter was yelling to go faster. Even from the distance I could see the shame in his eyes as he yelled at me to keep going. I’m not someone who takes direction in the form of hollering. But that day I did. I turned and ran up around the corner and stopped to cry. I didn’t know what to do anymore. All I knew was if I kept ignoring the problem, I was going to lose my husband. And that was unacceptable. I had never been an ostrich in my entire life and in that moment, I held a mirror up in front of my face and felt like an utter failure.

Sitting down waiting for him, I nervously pulled at the blades of grass and thought about what to say when he came around the corner. Should I pretend I didn’t see what had happened? When he approached me, he began to yell about not having to wait, but I said I was tired and needed a break. Our daughter innocently whined to me about being left behind and I could see his back getting straighter and straighter as she talked. I gave her a kiss and said I’d stay with her this time and looked down at the ground.

“We need help,” I said.

He was quiet, but didn’t argue or make a joke. This might as well have been an admission to him, but he wasn’t ready to form the words. We walked the rest of the way home that day and it wasn’t brought up again for a few weeks. We were about to leave for a family reunion with his parents and sisters in Walt Disney World and both of us were starting to get nervous. Heat and humidity can exacerbate a lot of M.S. symptoms and we were going to one of the most humid places in the world.

“We’re going to tell my parents that I was injured playing soccer.”

He had said it very casually as he was pruning a tree and I worked in a flowerbed. Our daughter was in her playhouse on the deck. Contemplating his choice, I remember suddenly reflecting on the survival instincts of weeds. Some of them throw their seeds out as you pull it from the ground, while others allow the head to pop off, but keep the core deep under the surface. I didn’t say anything, but I knew it was time to stop start taking lessons from the dandelion I was staring at.

“No.”

“No?”

“No – I’m not going to lie to your parents anymore. I’m tired of them asking about you the second you leave the room and I’m done pretending that something isn’t wrong. The answer is no – absolutely not.”
I held my breath and watched his shadow on the ground. It shifted its weight from side to side. The silence was heavy.

“Fine.”

Air slowly came back into my lungs and I began to weed again as I hatched an intervention plan in my head. I didn’t want to feel alone anymore.
As it turned out, the heat beat me to it. He was having a difficult time keeping up with the group as we walked through the parks. One night, after a couple of beers, my husband suddenly couldn’t feel his legs and had a difficult time controlling them. His two brothers-in-law had to struggle with getting one very embarrassed and pissed off man back to his room. It also happened that his sisters had enough of ignoring the elephant in the room and the middle child of the trio let loose a tsunami of pent-up fear and frustration at her brother. For once in my life I knew when to keep quiet and let someone else do the talking.

The next day, his parents and I cornered him in the hotel room and forced the issue. It actually wasn’t that difficult. In retrospect, my husband wanted someone to make him face the problem. I think he felt alone too. We made him sign a written agreement that he would go see a specialist and be properly diagnosed with whatever it was as soon as we got home. He gave his word and he kept it. We began to heal.

It was still frightening the day we looked at his MRI and told that he’s lucky he can still see. The truth is, we were still holding out that he had something crazy like a slipped disk. The doctor we found is an odd mixture of hardcore scientist with stylings of a bleeding heart hippie. He delivers everything in a “isn’t that amazing and weird” kind of way. There is no room for feeling sorry for ourselves because he knows we are strong and can work on controlling symptoms through medication and therapy. He has a good heart, but he’s also a straight talker. This approach might not work for everyone, but it is the perfect match for our family. It also helps to understand that M.S. is not a death sentence and people all over the world go on to live long happy lives. But it will not be ignored.

Acknowledging the problem to ourselves and admitting it to friends has been a soothing balm for me. We had made M.S. a shameful secret and given it more power by trying not to give it any. We don’t want our daughter to make the same mistake – not with her Dad’s illness and certainly not for herself in the future. For as long as we avoided the subject, I am still amazed at how quickly we decided how we were going to expose her to the realities of her life. We decided that we would have a complete open door policy and share the process of diagnosis with her. She’s only four, so she didn’t really understand what was happening and the language we use to explain things is extremely vague for now. Our purpose is not to frighten her. Our thought is if it’s going to be a part of her life when she’s older than we want it to feel common place while she’s younger. Right now she’s young enough to simply accept without question that Daddy has to go to the doctor more than she does. I don’t look forward to the day when she’s a teenager and gets on the internet to see uncontrolled scary stories about what may or may not happen to her Dad. I know it is coming and like everything else now, will roll with the punches when it happens.

My husband has responded extremely well to therapy and I’m proud of him for becoming more open about it. He’s still flippant – after all, he is who he is. But now, it’s said while looking me in the eye and a hug soon follows. We’re in this together, all three of us – and that is the best thing of all.

For more information on Multiple Sclerosis or to find a local chapter, please visit the National Multiple Sclerosis Society. If you have the means to give to their cause, I urge you to help out. They help people like my husband every day – especially those that cannot afford to help themselves.

If you have a secret that is starting to run your life, please seek help. I’m glad I did.

Aimee is a working mom, vertically challenged, has a loud voice and laughs as often as possible (when it’s appropriate of course – except when it’s not).