Simply Lou: MS Get On Outta Here

article and illustration by Lou Davenport

I wrote the following a while back and just couldn’t bring myself to share it yet. It’s now been eight years since my daughter Paige was diagnosed with MS. She is still doing well and I hang in there with her. She works and has a wonderful “significant other” that loves her and takes care of her. She’s a real “woman of steel.”

March is designated as MS Awareness Month. Multiple Sclerosis. A hideous and cruel disease that usually, but, not always, strikes young adults. It is an autoimmune disease and its diagnosis is devastating. There is no known cause. There is no cure. It is not contagious. Sometimes, you can see a person’s MS, but most likely you won’t. My greatest intention in this month’s “Simply Lou” is to bring some awareness to this sneaky, unrelenting, “hellish” disease that I hate!

I can tell you all about MS from a medical stand point. , but, I am not the one who has it. My youngest daughter, Paige, does. I can only tell you her story from my perspective. For a mother, it is a difficult story to tell. I cannot come close to imagining what it is like to have MS. All I can truly tell you is my side of her story. Yes, my heart broke with her diagnosis. But, what about hers?

About eight years ago, I had gone with my daughter, Carolyn and my grandson, Noah, to Lafayette. Carolyn had a teacher’s conference and Noah and I had plans to be tourists while she was busy! We were in high spirits! Life was good. All was well with all the Davenports.

Paige had what she thought was a pinched nerve when we left. She was going to go get it checked out. I didn’t worry too much about it. She was a court reporter. I worried more about her working TOO much! She was almost like “a machine” she was so determined to be finacially independent. So, a pinched nerve sounded right. If that was the case, those are fixable!

Two days later, early in the morning, I got a panicked call from her friend, Brandi, who had gone to the doctor with her. The doctors had performed a scan and told her she had a brain tumor, an adenocarsinoma… the worst possible kind! She was told she would only have months to live. At that moment, she was in an ambulance on her way to LSU Shreveport all alone, but Brandi was in hot pursuit! Brandi was not going to let her arrive all alone.

I froze. I couldn’t process what I had just been told. I went into suspended animation. I wanted to scream, but couldn’t. Somehow I knew I didn’t want to scare Noah too death so I sent him downstairs to get breakfast. I knew I had to reach Carolyn and get on the road to Shreveport ASAP! Luckily, she answered her phone and I could barely choke out what I had just been told. She rushed back and found Noah barefoot in the lobby with pancake batter everywhere. I let her make the phone calls beacause I couldn’t even get out the words. All I was capable of was throwing everything we had into bags and getting us in that car! I HAD to get there. I HAD to see Paige. I couldn’t bear the thought of her in an ambulance all alone. I couldn’t let myself feel what I thought she might be feeling. I felt absolute terror.

Bless Carolyn for being able to drive, because I sure couldn’t. But, looking back, I really think “Jesus took the wheel.” We hit a terrible thunderstorm, the kind you have to pull over for because you can’t see! The minutes were ticking and the fear was getting worse. We were trying to stay calm, but let me tell you, we were not!

When we got to LSU Shreveport, we ran! There was nothing that was going to keep me from seeing my “baby!” We all would have run through fire to get to her. Brandi was waiting for us, and she ran with us!

There was Paige, looking so very small in that bed, but she was smiling. I couldn’t do much but grab her. My knees almost buckled. There was a sweet young intern with her and I will never forget his words. PAIGE DOES NOT HAVE A BRAIN TUMOR and I DO NOT KNOW WHY SHE WAS EVER TOLD THAT! Part of me wanted to kiss that young man and the other part wanted to beat somebody’s careless, insensitive tail in Monroe. HOW do you tell that to someone without any kind of PROOF?! The neurologists still didn’t know exactly what it was she had, but, just hearing that my baby was not going to die in a few months, I knew we could make it through whatever was headed our way.

We ended up being at LSU Shreveport for two weeks. Paige seemed to be a bit of a mystery for them. She had some signs of MS, but, they just couldn’t be sure. She had MRI after MRI and all kinds of scans. They found a huge lesion on her brain and few small ones along her spine. They finally came up with a diagnosis. A rare form of MS: tumefactive. Not a lot is known about this kind, and she was their first case of this rare type. “Tumefactive” MS is so rare it usually isn’t even on the list with all the different kinds.

There was never any doubt she would have to have brain surgery. There were risks involved. The lesion was very near one of her optic nerves. She might end up blind in that eye. Always having a sense of humor though, she borrowed a song lyric and called herself having “brain salad surgery.” When we got to see the scan of her lesion, she named it , since it was so big, “Big Bad Voodoo Daddy!”

Her surgery went smoothly and we were even allowed to see her on her way to ICU. She was in the best of spirits and commented on her cute doctor! She had part of her head shaved and had a large stapled incision and her face was bruised. To me, she was beautiful! But, the best part was, she was alive and her eyesight was not affected!

As I sat in that waiting room during her surgery, I was calm. I KNEW she was going to make it through surgery. I cannot say enough how well she was treated at LSU Shreveport. Everyone from the cleaning staff to the top doctors loved her and it showed. They even took care of me! Paige’s room had an extra bed so I had a place to stay. All of them became like “family.” She was surrounded by them, our family and friends every day we were there. Brandi “earned her wings” that first day for sure! All of them will never truly know how deeply I appreciate them showing my daughter all that love and support.

Since then, Paige has had to face having a life changing disease, one that has no cure. Facing that hasn’t been easy. She calls MS “a hard kick in her ass!” That is a lot to face when you are so young. She deals with fatigue, never knows what kind of day she is going to have. Some are perfectly normal, great days. Others are not. She has not had a relapse, and all her scans show no more lesions so far. She takes a shot once a week that knocks her down for a day or so. But, it is obviously working. To look at her, all you will see is one beautiful young lady. She is so strong and brave, but, I don’t think she really realizes that. I see it. It makes me more proud of her. But, I also see the other side, the uncertainty, the depression, the fatigue, seeing her have a bad day. She endures muscle spasms, aches, pains, being cold, and sometimes, as she calls it, having “wonky legs.” She has lost friends who could not handle “it.” That hurt her, but she’s learned to understand. She has found out who her true friends are. She can’t work like she did before, yet, she goes on. She lives. She does the best she can. And she laughs.

Paige hates sympathy. She just wants to be treated like anyone else. She doesn’t use MS as an excuse. She lives as normal a life as she possibly can. MS is just one part of who she is. She certainly doesn’t let MS define her. As much as any mother would, I wish it would just go away and so does she. But, it won’t.

There are blessings, though, she is alive. She’s never lost her sense of humor. She has hope. She has an inner strength as strong as iron. She is holding “her own” against MS. She has a family and dear friends that love and support her. She will never have to walk “this road” alone.

For me, I am so thankful I did not loose her. MS or not, she is my precious daughter. I celebrate her good days and do what I can to help her through the bad ones. But, I still hate MS!