In June, it will be 8 years since I was diagnosed with the death sentence that is Amyotrophic Lateral Sclerosis (ALS). On June 20, 2016, a well recognized, highly empathic, expert in the field told me that given my atypical characteristics, and rapid progression, he expected that within three months I would need to use breathing and feeding tubes. He stated that, while most patients with ALS pass away within 2 to 5 years, he expected that I had at most a year from the date of diagnosis. He said that I could expect my speech to go away, to lose my ability to chew and swallow on my own, and that eventually I will lose the ability to breathe. We are already witnessing a miracle. I have already surpassed the medical experts’ expectations and live in constant expectation of being fully and completely healed. While my prognosis is no different, my faith is the same. It is a daily testament each time God helps me to move, breath, and be understood. Moving now feels like the last mile of a marathon, my mind believes I can do it but my body is shaking and may give out at any time. Speech is even more difficult, my jaw just refuses sometimes, and even though I am blessed to be able to use technology to translate my thoughts- everything comes with a cost. 

Bridging Voices (an amazing nonprofit dedicated to facilitating communication for individuals with ALS) has transformed my ease of access with the tobii and even helped me use my phone through the device. It has transformed my daily life, but like everything else, there's a long way to go. Think about it. The way Tobii technology works is by using your iPad camera to track your gaze. It is amazing to have the ability to communicate more easily again, to break out of the isolation imposed by ALS's weight on my tongue. But, you know how you feel after multiple video calls? The headache, pressure behind your eyes, nausea, vertigo? Imagine needing that to communicate. It's absolutely worth it, but exhausting nonetheless. Similarly, contrary to Tobii's advertising, the eye gaze technology doesn't work well outside or with any sunlight or wind. So, it's a choice to communicate or enjoy the sunshine. Lately, I've been choosing to be understood, but I'm sure there'll be many beach days this summer where I'll choose sun and sit in silence. It requires a lot of patience for people to talk with me. I've lost count of the people who've walked away before I could respond. Unless you're familiar with the technology, it's counter-intuitive to keep looking at someone staring at a screen. I'm amazed by how gracious people can be! Prior to being forced to slow down, it would not have come easily to me.

Ephesians 3:20 says, “God is able to do much more than we ask or think through His power working in us.” God knows my frustration and pain. He’s there when I wake up at night because I stopped breathing. He can see the muscles spasming around my ribcage like a band preventing the air from traveling where it needs to go. I know because when I can’t speak or move, He wakes up my husband and if he’s out working on his car then God sends my mom, dad, or brother into my room. He knew how long my husband and I could live on our own and He prepared us for when we needed to move in with my parents.  God can see my muscles twitching faster than I can figure out where the new pain is and He knows what days I will need more energy or encouragement before I do. People ask, "How can God let people suffer?" I just wonder how can anyone function without Him.

The last few years have been filled with excruciating pain, endless frustration, and daily miracles.   CS Lewis once wrote that, “We are half-hearted creatures, fooling about… when infinite joy is offered us, like an ignorant child who wants to go on making mud pies in a slum because he cannot imagine what is meant by the offer of a holiday at the sea. We are far too easily pleased.” I love that God wants better for us then we can dream to ask Him. Romans 8:15-17 in the Message says, “This resurrection life you received from God is not a timid, grave-tending life. It’s adventurously expectant, greeting God with a childlike ‘What’s next, Papa?’ God’s Spirit touches our spirits and confirms who we really are. We know who He is, and we know who we are: Father and children... If we go through the hard times with Him, then we’re certainly going to go through the good times with Him!”  Anyone who has met my dad knows how much he loves giving gifts; they are thoughtful, helpful, usually expensive, and tailored to the receiver. Why would I have lower expectations for my heavenly Father?

ALS involves constantly facing your new worst nightmare.  It means thinking of the worst possible outcome and then watching it come true.   My mind constantly reminds me of my struggles but thankfully the Holy Spirit is there to provide counsel.  My body is pulling everything inward.  Gravity is not just making it difficult to walk but making it hard to hold up my head.  Eating is not just a workout to open and close my mouth but a struggle for coordination of my teeth and jaw.  My throat and heart work overtime, always inconsistent and spasming constantly.  Most actions require assistance.  It is not just exhausting for me but for everyone who has to help me everyday.  It is depressing and sad but I am so thankful for God’s perfect timing and that “we are God’s handiwork, created in Christ Jesus to do good works, which God prepared in advance for us to do” (Ephesians 2:10).  Last year when the majority of people could not understand me, I got a Tobii Dynavox eye gaze communication system; and when I went on disability, it perfectly coincided with my beautiful godson's birth in August.  My sister came over and let me hold him while I was on the phone dealing with all the many barriers to going on disability.  Thankfully, it is impossible not to feel joy with that beautiful baby.   My father and mother retired recently so now we get to spend time with Seth when everyone else is at work.  I really miss working but I am so thankful for the blessing of  time with my godson.

At this point in time I need assistance with many basic tasks. I have watched myself lose the ability to run, walk, cut my food, dress myself, bathe myself, and speak in the way that I have my entire life.  Through the help of brilliant family and friends, I am still able to communicate, though I am no longer able to work full time as a psychologist. We still need support each time we go to a doctor’s appointment. Even though the ALS clinic works to combine multiple therapists into one day, they are not in the business of giving hope. Unfortunately, they do not have proactive, functional suggestions to improve my daily life. For years my insurance has denied OT, PT, and Speech services even though these have shown to maintain functionality. Aetna kept saying that they do not need to provide anything that will not make me “better.” Since ALS is a terminal illness, that led to zero services.  Now we are navigating the new world of Medicare where medication that used to cost $240 a year will be over $4,000 for the year.  That is the medication that is approved.   I don’t understand how this system of inequality could be in place, but I am continuously blown away by amazing people and organizations who willingly step into that gap.  

Organizations like Compassionate Care for ALS (CCALS), Bridging Voices, Her ALS Story, and ALS United Mid-Atlantic  (formerly ALS Association Greater Philadelphia Chapter) do so much to alleviate the stress associated with ALS.  The individuals in these organizations are continuously working to facilitate life for those of us bending under the weight of ALS. Right when I started thinking that no one could understand what we were going through; two years ago, Leah started Her ALS Story which connected me to a beautiful group of women who are all going through the same thing.  It is such a blessing to be a part of this group.  Not only are the women hilarious but we are a fount of information for one another.   It is a Godsend to be a part of something positive and productive.  This past September, Jon and I were blessed to be able to attend the annual Her ALS Story Retreat, along with 28 other women diagnosed with ALS before their 35th birthday. It was such a unique relief to be surrounded by people who get it.  Of course, the downside to befriending us is the horrific reality of the rapid progression of ALS.  Accordingly, we have already had to mourn the loss of too many wonderful members.  Hebrews 11:1 says, “Faith is being sure of what you hope for and certain of what you do not see.”  As I have become more involved in this community, I have seen so much loss that I need to believe we will one day find a cure. 

“Be truly glad there is wonderful joy ahead (1 Peter 1:6).” My family and friends have worked to continuously come up with new suggestions that, while not technically a part of “the ALS treatment protocol” have greatly increased my quality of life. Many of our friends have stepped into the gap by offering their assistance. Their invested, empathic knowledge has gone a long way to giving us hope and more functional tools. Basic things have been literal lifesavers: the chiropractor and massages, especially cupping, and my epic massage chair (helps to decrease muscle spasms, facilitate circulation, release toxins), my sleep number bed (helps with movement, circulation, and decreases the amount of pillows I need from 5 plus a 7-inch wedge to just 1 pillow), pillows for my heels (help me keep sleeping without waking up from heel pain), Tobii Dynavox eye gaze communication system (allows my eyes to communicate without the hindrance of my speech), the perfect lift (allows me to get in and out of inaccessible areas), caffeine and a vitamin regimen-specifically B12 (provides much needed energy), pool workouts (provide a place where I can still walk), gel manicures (provide increased strength for my fingers), lightweight hand/wrist support and Oval-8 (help me to keep my hand open and  fingers outstretched), good sleep hygiene (a routinized 10-12 hours is now a necessity), passive stretching (helps mitigate my nerve pain and maintains more range of motion), shoes from Billy Footwear (alleviates stress for whoever is helping me, speeds up the process, and negates any shoving/pushing of my feet), and use of a bidet (provides a semblance of independence). These are all things that I wish I had known when I was first diagnosed. Now that I do, I am hopeful that other people can make use of what has been helpful to me and that I can benefit from their hard earned knowledge as well. Please if you or a loved one has questions- let me know!  Anytime someone can make use of my history it helps me to see how it all has a purpose. 

“Then the Lord said, ‘Pick up your mat and walk.” John 5:8. I have not been healed yet. However, one of the horrors of this disease is that once you lose something you should not be able to get it back; repeatedly, I’ve been told “you cannot regain abilities that have been lost.” Here are some of the miracles that we have seen. For two years I was unable to drink water, it made me choke and struggle to breathe, but somehow, since October 2018 I started craving water and was finally able to drink it. June 2018, I lost the capacity to walk independently in the pool. Miraculously, in late October 2018 I was once again able to walk unassisted for my pool workouts. During the pandemic, with 10 months out of the water, I lost this again but after a few weeks of practice the ability came back. As of July 2018, I was no longer able to stand on my own, but somehow, as of December 2018 I have been able to stand on my own for a couple of minutes at a time (all while people are standing close by watching of course).  Even though I can no longer stand up independently from a seated position, February 2019 I was able to stand up from my chairlift unassisted on multiple occasions. We are in constant expectation of the next miracle. 

It is still an effort to go out in public, beyond my close circle of friends and family, because navigating a world that is often inaccessible is frustrating and exhausting. It is uncomfortable to be unable to go into a building or to have everyone need to move to make space for your wheelchair to fit. People are irritated when the wheelchair has to be in front of them in the designated accessible seating and often are angry when I go by as though I may run into them. Many people are wonderful encouragers but still others can’t help but show their pity as I pass by. They still talk to me in baby voices as though I cannot understand them or assume that I am unable to talk and ask questions about me to whomever I am with. Honestly, I’m getting used to it. I talk a lot less now. My personality hasn’t changed but it is basic triage. The muscles in my face aren’t just twitching. They are pulling down, knotting, and solidifying. Daily, my dad or sister, try to loosen the fascia holding my thoughts hostage. It is not just hard to speak, chew, and smile. Rather, it’s exhausting- like a fight for each micro muscle movement. I share because I feel like God wants me to tell about the miracles He has provided for my family, rather than focusing on the shame and frustration fostered by this disease.

Isaiah 26:3 "You will keep in perfect peace those whose minds are steadfast because they trust in you." At times, when I am extra tired and struggle even more my mother reminds me that faith can come from your family and your friends. That God put them in place for us to help, so they can lift us here when we can’t feel His hands reach. One concrete example of this is in Luke when the paralyzed man’s friends literally lowered him down through the roof so that Jesus could reach him to be healed; “Then he said to him, "Rise and go; your faith has made you well (Luke 17:19)." I am so blessed with a wonderful husband, amazing family and friends- who are my feet when I can’t walk, my hands when they fail me, and provide me sustenance when I am weak. My life, like this walk, has become much more of a team effort. Like a child, I need to arrange for a family member to take me to and from each of my daily appointments.  My husband and I were blessed that when we needed more help we were able to move in with my parents and my brother four and a half years ago. Everything requires a lot of hands now. They have all taken on the task of helping with the minutiae involved in the movement of daily tasks, and in doing so, each day relinquish their hold on time being their own, but rather a collective commodity we all sacrifice for each other daily. My husband didn’t just carry me over the threshold; he always picks me up and brings me up and down steps, over grass and snow, in and out of inaccessible buildings, and he has developed the ability to both fix my splints and help me to move, in his sleep, when I am in pain at night. Working out, stretching, doing my hair or makeup, these are now all group activities- and I’m blessed that my sister is expert enough to do them for us both. My aunt has become a specialist in researching and pinpointing suggestions that provide hope that my energy and functionality can be maintained. My mother-in-law has taken on the terrifying task of dealing with my many insurance issues. Some of our family friends and champions, Mike & Jen Lotito, purchased a wheelchair accessible van so that I can continue to access the world with less stress on my family. My friends have all become advocates, ensuring that businesses are accessible and that I can continue to do many of the things that they do. We have an entire prayer team dedicating time in which people volunteer to pray for me and my family on a monthly basis. We feel the power that comes from those prayers. So many people are already a part of this team.

As you read this, my prayer for you is, “May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit” Romans 15:13. I have not been healed yet. Nevertheless, I am writing this because I know that God is doing amazing things in my life and in our world. I get a shot every morning, take 15 pills a day, and sleep with splits holding my hands, arms, legs, feet, and teeth in place - to prevent further degeneration and the debilitating spasming throughout the night. I am constantly uncomfortable and often experience severe pain. None of this is how I pictured my life but I know that God has a plan. My prognosis is terrible and my doctors do not have any recommendations of what they can do. However, my God is greater than medical science.

I have been truly blessed by my family, my friends, my church, and the ALS United Mid-Atlantic  (formerly ALS Association Greater Philadelphia Chapter). They sent me a walker when my insurance took too long to approve it, loaned me a motorized wheelchair for the year it took to get my own, and they provide caretakers and home support to ease the burden for other families like mine. ALS Mid-Atlantic is continually creating events to support families struggling with ALS; they also are willing to partner with other organizations like Her ALS Story, to make the most of our resources.  Jon and I are a part of a wonderful support group through the ALS Association which provides a much needed reminder that ALS does not just impact us. 

Our team “A Cure for Kait” will be a part of the Seaside Walk to Defeat ALS on May  4, 2024 and we would be honored if you want to walk, donate, or be a part of it in any way.

Together our team has raised  $111,385.70 over the course of six walks. This money goes to ALS United Mid-Atlantic  (formerly ALS Association Greater Philadelphia Chapter) who use it for research to find a cure for this devastating disease, as well as supporting families that are struggling with it right now.

Please feel free to join, share, and make an impact.

Let’s end ALS.