Mara's Fight Against ALS
As many of you, this journey has been up and down since the beginning of 2015. After dozens of doctor visits to various neurologists, ENTs, 4 CT scans, 4 MRI’s, multiple blood work ups, heavy metal testing, an MRA, EMGs, a pulmonologist, primary care providers, French Hospital emergency, and more, Stanford's medical team discovered in November 2016 that my mom has ALS.
She is losing her ability to walk/talk, and swallowing and breathing have become increasingly challenging.
ALS is not the kind of news you ever expect to hear, and it’s a lot to wrap our minds around. We don’t have all the answers, or know what everything will look like. But we are praying, trusting God, and taking everything one day at a time. Please pray with us.
If you aren’t familiar, ALS is a horribly debilitating and incurable disease. A cure may exist, but it’s underfunded and there’s a huge need for more research to fully understand how to stop ALS from progressing. You may remember the ‘ice bucket challenge’ that went viral on social media two years ago, which was created to raise awareness for ALS.
You can read more about ALS here:
My mom and I hope that this journey—and even this platform— can be used to shed light on the desperate need for research and funding to find a cure for ALS. And even greater, for people to see and recognize their need for hope in Christ. The fight isn’t over and hope isn’t lost!
Your donations will go towards continued medical expenses and visits to Stanford, as well as towards ALS research.
Thanks so much for your continued friendship & generosity towards my mom on this journey. She has felt so loved, and we are forever grateful for your support and prayer.
“So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison…” 2 Cor. 16-17
As for me, I am working remotely from our home so I can be around to help my mom. Being in SLO has felt like putting on an old, warm comforting sweater. It’s familiar, it’s comfortable, it’s home. I am not going to miss the cold weather in SF or Karl the fog, but I do miss my close friends in the city and the amazing team at Twitter. I have felt really confirmed that moving home is where I’m supposed to be. Things fell into place so easily, which was a relief and an answer to months of prayers. There are also many things that are hard and new and different. Grieving the end of life in one city, and figuring out what life/friendships/community/caregiving looks like in a new city—that although is familiar—still feels like starting over in many ways. A relationship that meant a great deal to me came to an end, and I’ve really been grappling with that personally. It has felt like a lot of hard things have hit me all at once, and I will be totally honest with you, there are days that feel totally overwhelming and really hard to get out of bed. It can be confusing, and hard to understand, and tempting to ask God why all of this, especially why all at one time. I don’t have the answers or fully understand why. Life’s tragedies are heart wrenching and blindside us, and they are inevitable. But there are a few things I am really certain of. Life is going to be hard. For some of us, harder than others and there isn’t always a silver lining to the hard parts. But I’m confident God is so loving and so good. Right now, that’s what I cling to each moment of each day, and what I know to be true, even though there are moments when it doesn’t feel true or look true. Knowing my true home is heaven, and the best is yet to come, is the sweetest reminder and I am so sure that all of this is just temporary. I’ve had many moments where I’ve had a choice: I can sit in bitterness and anger that my mom has this nightmarish disease and that life is really hard right now, or I can choose to trust and believe that God is loving and good in all things, he doesn’t give us more than we can handle, and our time here is really short and fleeting. What lies ahead will be far better and sweeter, full of celebration and joy, and devoid of all pain and illness and brokenheartedness. That truth has brought so much peace and strength to our souls. I’m praying today, in whatever you’re feeling or experiencing, that you believe that too.
A lot of people have asked how they can help and although I probably can think of a hundred ways, asking for help is REALLY hard. First off, my mom’s tube feeding formula is costing her over $1,000/mo because insurance sucks and won’t cover it (she’s on medicare--I could rant about our broken medical system but I'll spare you). On top of other medical expenses, this is obviously a lot. If you feel compelled to gift her with formula, let me know, and you can purchase Liquid Hope here: http://www.functionalformularies.com/shop.html
Otherwise, if you live in SLO, it always means a lot when people are available/willing to run errands, grab groceries, or whatever. Kind and thoughtful letters/notes are also always welcome, and if you’d like to write a letter to my mom, please let me know. We also love flowers. ;) Lastly and most importantly, you can pray for peace, comfort, joy, and faith.
Thanks for reading and please send me your email address if you would like to continue reading updates. I am no longer going to post them on gofundme. If you have any questions for me about my mom or whatever, feel free to ask. Trust me, I get asked all sorts of things, so don’t be scared to say or ask the wrong thing, or afraid to reach out. I'm thankful for your continued friendship and support.
I haven't written in about four months and a lot has happened in that span of time that I'd like to share with you. I'd also like to write more but feel emails might be a better avenue than a gofundme/fb/twitter blast. If you'd like to be included on my update letters, please email me your email address at email@example.com and I will add you. Forewarning, this message is going to be very honest and real, which also might make you feel uncomfortable or really sad. I recommend choosing to read at a good time to feel all the feels.
It's hard to know where to start because so much has happened. After my mom's ALS diagnosis in November, things started progressing quickly. Walking and normal life tasks, like making food and cleaning, became really hard for my mom, so in February, we moved my mom in with my Aunt and Uncle in Temecula so she could receive extra support and help. For some, ALS affects breathing/speaking first, which is the case for my mom, so eating and swallowing became increasingly difficult as her tongue has atrophied over time. After moving to Temecula, she got down to nearly 80 pounds, and she had to have an emergency g-tube surgery at UCSD hospital at the end of May. Since then, my mom is being completely fed through her g-tube with feeding tube formula. Losing your ability to walk is also pretty typical for people with ALS. She’s still able to walk a bit around the house with the help of a walker, but when we leave the house, we will use a fold-up wheelchair, and also received a power chair (fancy remote wheelchair) that she can use around the house/neighborhood. She’s still using her hands/arms, so she’s able to bathe/shower/dress herself, do small tasks that don’t involve heavy lifting, text, write emails, and socialize with people on Facebook and what not just fine, and that is a huge gift. Fortunately, the g-tube has allowed my mom to gain a few pounds back and although she’s not able to enjoy solid foods by mouth, she is still enjoying the occasional smoothie and wine on the regular. ;)
While all of this was going on, I was still living up in San Francisco and working at Twitter, trying to figure out what my next move was. For a while, I thought moving to San Diego or LA to be closer to my mom was going to be my next move, but got endless rejection letters from companies in both cities. It was extremely hard and didn’t make sense, but in hindsight, I now see why that didn’t work out and am grateful. After a lot of thought and prayer and conversations with my mom, we decided moving her back to SLO (our home!) and having her live with me, would be the best course of action. Temecula was challenging for my mom for many reasons, but mostly, it didn’t feel like home and she missed her close friends, and we were way too far away from each other. I never imagined this would be possible, but Twitter approved me to work remotely for them so I could move back to SLO to care for my mom. It’s cool to look back and see why other opportunities fell through, and how God had a plan for me to keep my job, and move home all at once. I feel really fortunate to work for such an awesome, supportive company, and hold onto a job that I’m really in love with and get to spend this time with my mom.
Fast forward to August! With the help of my mom’s amazing friends, we found a new home in SLO, I moved my stuff down, and we moved my mom up, all in one week! It was a whirlwind and we are still very much getting settled into our new home and a new routine. My mom spends lots of time resting and relaxing, watching Netflix, reading, and luckily for me but maybe not so lucky for her… hanging out with me. ;) My mom is no longer able to talk at all, so we communicate using a “boogie board” that allows her to write, and an iPad app that she can type into that will speak for her. It’s a whole new world learning to communicate with one another, but we are figuring it out as we go and make light of it and laugh at the occasional miscommunications. Also, ALS weakens the diaphragm, which is vital in the breathing process, so breathing has also become really hard for my mom. She uses a bi-pap machine on and off throughout the day when she feels short of breath. We do love being back in SLO. My mom’s friends have really stepped in and have been great supporters and helpers, from fixing things around the house, dropping off fresh veggies and eggs, hanging pictures on the walls, taking my mom out to the store. I am extremely thankful for them. Although ALS is extremely challenging to navigate, we have a lot of sweet moments together. Last night we sat and watched the lightning and listened to the thunder together (and stayed up way too late doing so). Some days, we just silently watch the hummingbirds come to the feeder outside her window. This past weekend we drank wine together and listened to music, as I built a bookcase in her room. Last week, we went and saw Wonder Woman at the drive-in. These are moments that probably don’t seem memorable or grandiose, but are so special and mean everything.
For context, the ALS Association invests in research/science to help find a cure (if you don't already know, ALS is an incurable, terminal illness), and provide services/resources for people with ALS such as a case manager, medical equipment, and support groups. The ALS Association has benefitted my mom and I in big ways. We want to give back.
Please consider donating by purchasing a shirt here:
Thank you!! xoxo
PS I've attached a couple photos from this past weekend at the Walk to Defeat ALS event in SLO. It was a special day and over $60k was raised for the ALS Association!
I put together a team for the Walk to Defeat ALS event in SLO, which is next weekend!
One way you can donate/contribute to our team's fundraising efforts is buying a Team MZ shirt. You don't have to walk, you can just buy/wear the shirt to honor her and rep our team virtually.
Here is the link to buy: https://www.booster.com/teammz?side=front&type=1&zoom=false
They're $20 and all proceeds benefit the ALS Association. Please spread the word!
PS. Got to visit my mom in socal last weekend for Easter. Really great to see her, and wonderful to have at least one Warriors convert in the fam. Attached a photo below. :)
Etta Mae maino the insurance is Anthem Blue Cross PPO. May be partially the doctor pool here also. I've read other Gofundme pages of people deal with the same issue. It's just wrong when people who have always carried insurance can't get the care they need when they become ill.
What's the name of the danged insurance company? Peace and strength to you Mara.
Keep smiling Mara! Wishing you the very best. Leg braces look awesome!
Thank you for the update Hillary. Continued prayers for Mara for moving closer to treatment and healing. My thoughts, heart and prayers go out to you both. Love you both
Mara...smile that fabulous smile of yours and know that you have many many friends and family wishing you the very best outcome....you are strong and can do this...sending you all the healing and positive energy I hope will help !!! Love you..Doris Acosta
The kindness of human spirit is shining a light on me. I can't thank my supporters enough. How can I not thrive with all this love and support. You lift me up and give me immense hope. ❤️❤️❤️
it wouldn't let me post my e-mail address which I am sure its for my own good but I don't know how to reach her
hello Hillary its Debra Cristler I would love to get in touch with your mom I have so many questions. Can we talk or is writing better?
I'd love to come visit your mom. Is she back in SLO. I'm here for just a few more weeks. I've left her a few messages on FB over the months, thinking she's been too sick to read them. Please let me know how I can get in touch.
Card on its way already. Thanks Hillary
Lots of Love and healing power for your heart, mind and soul Mara. Keep your light shining! We keep you in our prayers and in our heart always.
Hillary, That was such a beautiful page you wrote, and oh so very very true. Thinking of you both so much and pray to give you both strength on this journey to your mom.s good health !!! ginny