Hey There, Lou: My Mother's Battle with ALS

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Hey There, Lou: My Mother's Battle with ALS

Hey There, Lou
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Words by:

Meghan Ryan

Illustration by:

Jenny Tarbell

Words by:

Meghan Ryan

Illustrator:

Jenny Tarbell

Contents

My mother was and is one of the most important people in my life. She was a teacher. She was one of the most giving and loving people I've ever known. She put my sister and I first. She thought always of her students and how to be the best person she could be on a daily basis. She was a devout Catholic and believed in contributing goodness and love to the world.

Photo of Mary sitting

In 2010, when she was diagnosed with Lou Gehrig's (ALS), it was devastating. ALS is a fatal diagnosis with a relatively short timeline to death. I was a senior in college and my mom was telling me she might not even be alive to see me graduate (spoiler alert: she did get to see me cross that stage!). I had so many plans and dreams before the day they told my sister and I our new reality. My world came crashing to a halt and all I wanted to do was hold onto every minute I could with my mom. 

My mom was a kindergarten teacher and loved Mr. Rogers, and after her death I found these words from him...

"To die is to be human and anything that's human is mentionable, and anything that is mentionable can be more manageable. When we can talk about our feelings, they become less overwhelming, less upsetting, and less scary. The people we trust with that important talk can help us know that we are not alone.”

I think when I started this blog, I needed someone to listen and to not feel so alone in the experience I was having. I also wanted to make it normal to talk about death and suffering because it's so often uncomfortable and pushed aside in our daily lives and culture. So I took to the internet to find a space to document what I was going through, to record the little moments I had with my mom so I could remember them long after her memory started to fade, and to hopefully also help others feel like they had an ally in the fight against ALS or another terminal illness. I think I needed people to listen so it all was less overwhelming, less upsetting, and less scary. 

I'm so thankful for those who allowed me then and those who continue to allow me to share my feelings, these memories, and make sure I know I'm not alone.


July 26th, 2011

Lou, meet Mary. Mary, meet Lou. 

In November 2010, my mom was diagnosed with ALS, more commonly known as Lou Gehrig’s disease, for the Yankee baseball player who dealt with his diagnosis with such remarkable grace. For three and a half years, we searched for a diagnosis to her ailments. 

Her list of diagnoses (she underwent treatments for each) prior to ALS included:

  • Multifocal Motor Neuropathy (MMN)
  • Fibromyalgia
  • Lupus
  • Porphyria
  • Lyme Disease
  • Chronic Inflammatory DemyelinatingPolyneuropathy (CIDP)
  • Systemic Strep
  • Guillain-Barre Syndrome
  • and 11 more. 

It was certainly a long and exhausting road to my mother’s diagnosis last November, but the lengthy, exhausting journey had just begun. 

July 28th, 2011

Tonight, I was helping my mom stand up from her bed and move into her chair so that she could go to the bathroom. She needs help in practically every step of every movement she makes nowadays, and I am more than glad to help her move her weakening legs and hold her upright. We go through very precise routines for every movement she has to make. From the bed to the chair consists of raising the hospital bed she sleeps in to its highest level, grabbing her around her waist and lifting her into a standing position. Then she has to grab the arms on her wheelchair to steady herself and we turn her around slowly so she can sit into the chair. 

Tonight, we are following the steps as usual, but for the first time in months, I actually got to hug my mom and feel her hug me back. In the middle of the step where I lift her off the bed to stand, she found the strength to lift her arms and wrap them around me and squeeze. We were both so shocked and happy that I just stood bent holding my mom while she hugged me for a few solid minutes. 

A hug can be the best thing in the world when you really need it, and my mom hasn’t been able to give me a real hug since about the time of her diagnosis. My feeling was beyond that of joy tonight as I finally got a simple hug from my mom. 

July 28th, 2011

Cards from Mary, one year apart.

These two cards are from my mom a little more than a year apart, one to me and one to my sister. 

She was a school teacher for 30 years before she had to leave the classroom because of her disease. Her handwriting has always been very pretty- as you can see on the left. But around the time of her diagnosis, her handwriting started to go downhill- as you can see on the right. 

The first time I opened a card from her at school and noticed the drastic change in handwriting, it took my breath away. Such a simple but marked change. 

August 1st, 2011

It’s August. In January, the nurses and doctors weren’t expecting mom to make it past March, then they said it’d be amazing if she could make it to my graduation date, and now it’s August. Tomorrow my parents will celebrate their 24th wedding anniversary..whoohoo! We don’t know what’s making her hold on and live, but I sure am thankful she’s made it to August!

August 3rd, 2011

This morning was the second time in 3 days that mom’s knees gave out and she fell. Whenever she’s moving from her bed to her chair or vice-versa we keep a hold on her so that if she starts to fall, we can try to lift her back up. This morning we couldn’t lift her up, and she couldn’t help us at all. Her muscles cannot work at all to lift or move herself, so we were holding and trying to lift dead weight, pardon the expression. 

When this happens, we have to lightly set her down on the ground, which ends up being very painful for her because her dead muscles try to work but can’t. Then we have to use a hydraulic lift to get her off the ground and back into her bed. Then we start all over and hope her knees don’t buckle. 

I’m getting worried that these falls will continue to increase and she will soon be bedridden, which is her worst nightmare, she would rather die than be stuck in a bed unable to move. This disease tests every strength and bit of faith you have- what do you do when a person physically cannot support themselves anymore but wants nothing less than to be bedridden? Do you throw your back out trying to lift her every morning, afternoon, and night or do you say she has to stay in bed?

How do you handle these decisions and these emotions when your life experience has never extended beyond the bubbles of education?

August 6th, 2011

 Did you know?

I bet you do know this, but Steven Hawking is living with ALS. He’s probably the most famous person to have ALS aside from Lou Gehrig for whom the disease is named. Hawking has a brilliant mind, but this disease has robbed his body of its capabilities. He can’t even speak anymore without computer assistance. 

August 8th, 2011

My whole life I have been scared terrified of needles. I hate all kinds of shots, finger pricks, whatever. So when I was really little, getting one of my many scratch tests at the allergist’s office, my mom told me to squeeze her hand as hard as I could and say “bubbles, bubbles, bubbles” until it was over. It really did help me and keep me distracted from the needle. To this day I still whisper it to myself whenever I get pricked by needles. 

This morning my mom had to have a PICC line inserted to deliver her pain medicine, and I held her held and distracted her with bubbles, bubbles, bubbles (even though she didn’t really need the distraction-she’s not afraid of needles). She’s been using patches and pills to manage her pain until now, but now she needs a more direct delivery method and to be able to give an extra dose when needed.

So now, we have yet another thing to accommodate to in our daily lives in having to watch every slight move she makes in order to prevent damage to the tube delivering the medicine. Every three days a nurse will now have to come by and reposition the needle in her skin. It gives me the shivers to think she has to get stuck with a needle every couple of days for the rest of her life (however short that may be). Yet another hardship for her, another change, another thing that makes life a little bit harder.

She really is the most courageous person I know.

August 9th, 2011

My mom used to be my Sunday school teacher when I was in second grade. I remember vividly the day she taught our class this song and we decorated banners with puff paint with the lyrics. I don’t remember how “You are my sunshine” had anything to do with church, but it was one of the best Sunday school lessons I ever had. 

This doesn’t have anything to do with her disease, but sometimes its great to just think about some happy memories or, in this case, hope that I can make her a little bit happier since her skies are so grey right now. 

August 11th, 2011

Mom didn’t even get out of bed today.

August 21st, 2011

A couple of my aunts and my uncle visited this past weekend. These visits always keep mom in good spirits for as long as they stay. The moment they have to leave it gets really hard for her. She’s always in tears by the time they walk out the door, and there’s really nothing to say to comfort her.

I try saying you’ll see them soon, or you’ll see them later, or you’ll talk to them on the phone tonight when they get home, or any other comforting phrases. But no matter what I try, it’s not going to be truly a comfort. She’s crying because she thinks this is the last time she’ll get to see them, which could be the truth, and she cries for them. She’s constantly worried that we will be sad when she goes so she’s sad for us. It’s so compassionate of her, but I don’t want her to feel she needs to cry for me or for our family. But I guess that’s just the way she is, and it’s one reason why we all love her so. 

Anyways, the visit with her family was great. She said she laughed and talked and remembered days gone by. I am so glad they got to visit. Any moments she gets to be pain free and happy are blessings. Thanks for the drive up family! 

August 24th, 2011

You know there really is something to be said for choosing to die at home. Mom has been in a Hospice facility for the past two days and she is finally getting to leave tomorrow morning. We ended up here because of a couple complications she won’t allow me to share on the world wide web but let’s just say it hasn’t been the most pleasant few days for her. Having to travel back and forth between home and the hospital, sitting in uncomfortable chairs, sleeping on rock hard pull out chairs while other people come in and out at all hours offering medicine, etc. is not exactly the most enjoyable of experiences either.

Home is much nicer. We have the luxury of allowing her to move around. We can use our hydraulic lift to take her to any chair, bed, what-have-you on the first floor. We don’t have to share spaces with other terminal patients, and we can fix any meal she wants (no hospital food involved). It’s definitely the better of the two choices to be at home. Home sweet home, here we come tomorrow. 

October 20th, 2011

Dear God,

If you’re out there, I hope you’re taking the time to listen to me right now. I know I’ve been doubtful, very doubtful, but right now I’m really hoping you exist and that you can do something for me. Since I’ve been so confused about faith for a while now, I haven’t come to you for much, so please, please just hear me now. 

My mom is so ready to leave us. She’s not unsure of you or of her salvation. She’s begging for your mercy. But I would like to beg for a little mercy for my whole family. I’m with her everyday. I know she’s ready, and I’m ready for her pain to end. But my little sister comes home Saturday- let her stay until then. My dad has a huge presentation in Chicago, one that will really make his colleagues proud. I know it can happen without him, but let her stay so he can have his moment of glory that he’s been working so hard for. And let her stay for him to come back to her. Mom’s CNA, who is like family now, has her birthday on Friday and she’s so excited to celebrate with us. Please let her stay for Michelle to get that wish. My uncle flies in tomorrow to see my mom- please let him see her one more time.

I know this is so selfish to ask to keep her here, but we need her, we need her forever. But we will take just for a few more days if you’ll give them. Then she’s all yours. Just please, please let me keep my wonderful mom for a few more days. Thanks for listening God. I hope you can help us. 

November 5th, 2011

"I love you" in ASL.
"I love you" in ASL.

I love you, Mom. My mom is fluent in ASL so we would always do this from a young age every time we were leaving each other. I will always think of my mom whenever I make the I love you sign. 

November 7th, 2011

One year ago today.

My parents and sister had been in Atlanta for 24 hours for my Senior Investiture. It was the first time I had seen any of them since July. 

I donned my graduation robes and got “capped” by Dean C, symbolizing my official seniordom. Whoohoo!

I ate a typical catered lunch with my 3 closest friends and their families. 

I bounced around on an inflatable, checked on the success of Harvestfest, and spectated while students decorated scarecrows to look like Dean of Students Staff members. 

And my parents sat my sister and me down at my uncle and aunt’s kitchen table and delivered the blow that would cause an avalanche of tears, choked breaths, and hysterics. My parents held hands and cried with us as they told us my mom had been diagnosed with ALS. 

What a massively different reality I live in today. One day last year my world changed, and I don’t even recognize the girl I was prior to Nov. 6, 2010 or what the picture of my family looked like before that dreadful day. 

November 7th, 2011

Today at 5:10pm, my mother lost her fight against Lou Gehrig’s Disease. I hate that phrase. Why do people have to lose the fight against cancer, ALS, Alzheimer’s, or any other disease? Don’t they fight with grace and talent and give it all they’ve got until they just can’t take it anymore. I think fighting to the brink isn’t really losing. I think it’s winning. So my mom won. She fought with every fiber of her being against this merciless disease, and I am one proud daughter to have a mother like her. 

She passed away with such grace and such ease. No one could have made a more classy exit. We held her hands; we kissed her cheeks; we said our loves, and she simply left. 

November 29th, 2011

It’s been three weeks and one day since my mother passed away, and I miss her everyday. However, I’m not perpetually sad or broken. I have her with me all day everyday. I feel down, and something reminds me of her. I wear a piece of jewelry everyday that belonged to her. I see her pictures, I can touch her clothes, I can hear her voice still. I feel blessed to be able to not be paralyzed by my loss but feeling fine I know comes with a cost. 

Something big will always be missing from my life and there’s no way to replace it. That’s where the pain will always be. It won’t and doesn’t always hurt, but the pain will always lie just beneath my surface, and the little things will hurt the most because she won’t be there beside me like she’s been my whole life to ease the pain away. Her death is the cause of my ache.

So when people ask me how I’m doing, I say great, fine, okay, dandy. I’m me. I’m happy. I’m continuing forward. But ask me how I’m doing in one of the empty moments, and I can’t tell you that I’m fine. I’ll be in excruciating emotional pain, missing the woman who taught me to be me with every fiber of my being.

January 10th, 2012

What on Earth did my parents do with an empty nest?

My parents had about a year and half without any kids living at home. They had four solid years without me and a year and a half without my sister. My sister moved back in the second semester of her sophomore year to take care of my mom, and I moved home after graduation this past spring to do the same. Since my mom’s passing, we’ve been pretty busy: funeral, Thanksgiving, my visit to Atlanta, finals for my sister, Christmas, trip to Columbia for my dad, New Years. Finally, things have calmed down a bit, and I’m throwing a wrench in the calm of my dad’s & my life: I’m moving to Atlanta for the time being. I would be so bored here every day if I weren’t packing to move as there is nothing to do near my house but typical suburban activities. So I keep troubling myself thinking, what is my dad going to do every day alone? 

This question breaks my heart and makes me want to stay put, just stay in the basement forever. I could easily do this for a little while longer if I could find a job here, but nothings panned out right now, and I’m still waiting to hear about applications for things beginning in the fall. I know going to Atlanta will allow me to earn some cash, be on my own for a bit, not sleep and/or watch movies all day, and gain some experience in art-related fields (since I have internship opportunities there). But I start crying every time I think of what I’m doing to my dad by leaving. It was bad enough to think that my parents, who put so much of their lives into being amazing parents and focusing 100% on us, would have less to do without my sister and me around. But now, my dad doesn’t even get to have my mom to keep him company. It’s just awful. I love him so much, and the last thing I want to do is hurt him by moving. I hope I don’t. And I hope those fall applications are accepted so I return here to be near him and keep him from being alone. 

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Written by the incredible Meghan Ryan. We can't thank her enough for sharing her journey navigating ALS.

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