By Kaitlin Gonzales Swanson, Psy.D.
For the first 28 years of my life I think most people would say that I was pretty blessed. I lived in a wonderful supportive family home. I have always had an amazing support system of friends and family. I attended an elite preparatory high school and a well-recognized college. The year I turned 28 I got engaged to a wonderful man and completed my doctorate. Everything that I had dreamed for myself was coming true. The day after my 29th birthday, a month before my wedding, that perception that I had lived with for so long, that the future would bring all good things and that I would always be able to deal with them, was destroyed.
On June 9, 2016 I was diagnosed with Amyotrophic Lateral Sclerosis (ALS) also known as Lou Gehrig’s disease. To be honest, when I was first diagnosed I didn’t entirely know what that meant, just that everyone was really sad and that everything I had planned and thought was in store for my life was suddenly up in the air.
For as long as I can remember I loved to run. I could run with my mom, my sister, brother, father, or eventually my fiancé; and it provided time outdoors to get out all of that extra energy and just enjoy God’s creation. In January 2016, I started to have difficulty running. Running was always easy and that winter suddenly it wasn’t anymore. I didn’t understand how it could change. I couldn’t seem to stop my own impact, my feet hit the ground too hard, and it felt like I was continuously off balance. Then I started to actually fall. I would be running and I would wipe out or taking a step down the stairs and find myself at the bottom. In the beginning I could catch myself and then I couldn’t anymore. It didn’t make any sense. It felt like I couldn’t stretch enough, my balance wasn’t working, and I had lost my rhythm to run. People kept telling me to just shake it off or that it was all in my head. I hoped it was but couldn’t seem to fix that on my own. So I went to the foot doctor. That seemed like the logical starting place since my feet appeared to be failing me.
Around the same time, I started falling. I would be standing in place and suddenly be on the ground. It happened at church with friends, in a coworker’s office, standing at home, and then started happening more places than I could remember. In the beginning, it was kind of funny. It just seemed like something awkward was happening and it didn’t initially raise any red flags. When I went to the foot doctor, she asked about other falls and recommended that I see a physical therapist. The physical therapist noticed difficulties with my balance that I hadn’t noticed yet. He saw that I couldn’t skip or shuffle side to side and he asked a lot of questions about my falls, my walking, and my running. Unfortunately, as he worked with me, instead of getting more balanced I seemed to be getting worse. I went from not being able to run to having difficulty just being able to walk. As the drills showed less progress and more digression, my physical therapist recommended I make an appointment with a neurologist.
The first neurologist that I met with was brusque but relatively informative. During my initial appointment, he did a sensory checkup that I would soon learn would be done each time I met with a new doctor. This consists of checking my reflexes, ability to track with my eyes and hands, and an assessment of my sensation. This particular doctor pulled his keys out of his pocket and used those to scratch the bottom of my feet to see if I could feel it. I could. It hurt. When he then pulled a safety pin out of his pocket, to see if I could feel myself being poked, I half jumped off of the table. Meeting with him was stressful. He was not in the business of giving hope. Nevertheless, he scheduled a series of MRIs and made follow-up appointments.
During that time, my strength seemed to be getting worse, my balance increasingly off kilter, and my walking more noticeably impaired. My mother attended all of the appointments with me, and after our first negative experience my sister attended as well. Many of the doctors made jokes about how many of us were in the room. As psychologists, all three of us knew that under this type of pressure no one person could appropriately report the details that the professionals were saying. When they joked about my support system, I agreed and said that I brought a team of therapists with me which, luckily, I had. I was reminded of Isaiah 41:10, “Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand.” God gives all comfort and I know that “my God will supply every need of yours according to His riches in glory in Christ Jesus” Philippians 4:19. That doesn’t mean that I don’t need reminders. For me, those reminders often came from my family. They had the ability to shore me up, help me to walk when I couldn’t, and help me to believe when I felt empty. Later, as I prayed to see God more, that comfort would come from even more people; but it always came from my family.
As my progression of negative symptoms accelerated my family and I felt that we needed someone who could be more available and responsive to our concerns. In one of a series of blessings, a family friend reached out to a friend of hers who was also a neurologist. Although 30 minutes farther away, this neurologist was much more responsive, empathic, and invested in explaining the minutia of each neurological test as well as all of the potential implications. Through her, over a month and a half, I ended up having an EMG, two spinal taps, and a spinal and cerebral test to look for an AVM which resulted in me spending a week inpatient at a well-known hospital. My experience at said hospital was horrible. There was no confidentiality or respect. As a psychologist, I was surprised when a doctor I had barely met told me in a room full of people, some of whom I did not know, that I was diagnosed with ALS. She explained that there is no cure, no treatment, and that if her diagnosis is correct then there is no hope.
“A friend loves at all times, and a brother is born for a time of adversity.” Proverbs 17:7 When I was first diagnosed, my father sat down on the side of my hospital bed, took my hands, and said with tears in his eyes, “You are not alone. Whatever you need we are here. God loves you and He has a plan we don’t see yet. Know that I will do anything I can- if I need to leave my job or we need to move- anything you need- I’m here.” I knew. Other people may wonder about their support systems but I never have. That day in the hospital, my 4th day inpatient outside of my home state, both of my parents and one of their college friends were there in the room. In the hallway outside were two of my best friends who had come to visit and en route to the hospital on the train were my two siblings, fiancé, and two more of my best friends. I was never alone.
Unbeknownst to me, when my supporters on the train found out my diagnosis, my fiancé said something very similar to my father. They all took a couple of minutes to get themselves together, and then he said, “Everyone do what you have to do now because when we get to the hospital there can be no more tears. Right now Kaitlin feels alone and scared- we will not bring her down.” With that said, they came to the hospital bringing soft pretzels, gourmet cupcakes, hot dogs, energy and prayer. We took over one of the lounge areas in the hospital talked and enjoyed the blessings that come with community. Before everyone left that night, we all got together and prayed.
Each time we went to an appointment, we had to be reminded that “we live by faith, not by sight” 2 Corinthians 5:7. On June 20, 2016, my diagnosis was confirmed. 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. Unlike some of the other medical professionals we had spoken with, this doctor held my hand while my eyes filled with tears. He took a break in his evaluation when my mother, my father, my sister, and I appeared to need a minute and he competently continued when we explained that we did want more information.
Since there are no treatment options, over and over doctors asked me about donating my organs, giving permission to keep my brain frozen so that in the future if there are any new drugs pieces of it can be cut off so the drugs can be trialed for people who do have a chance. Even when my family explicitly replied that they would rather discuss suggestions for the symptoms at this point in time because we believe that I will be healed- the same rhetoric about the unavoidable end was repeatedly bought up. The perspective that research is the priority over the patient, the dehumanizing persistence in offering no treatment suggestions and only requesting invasive studies- all are areas to be careful of in choosing a clinic and clinician. The right clinician is aware that we as patients do still have many areas of choice and that this disease cannot take away our humanity if we do not let it.
“Don’t worry about anything, instead, pray about everything. Tell God what you need, and think Him for all He has done.” Philippians 4:6–8 Now, I get tired a lot. That means working full-time is hard. Over and over the question I get from doctors and friends is, “Do you want to work?” Or “Do you want to go home?” From a very realistic perspective I need to work on conserving energy and appropriately using the energy that I have on a day-to-day basis. That said, I love to work. I spent years getting to the point where I am qualified to do the job that I have now and that enjoyment did not change because of this diagnosis or these symptoms. So what I always say is “No. I love to work.” I know that I may not always be able to work and that maybe what I do, or the ways that I do it, will have to change but my goal is to work as hard as I can for as long as I am able. Jerry West once said, “You can’t get much done in life if you only work on the days when you felt good” (Maxwell, J. C, 2011, p.137). That statement resonates for me. Also, as tired as I often am, I know that in our society a lot of people are tired. At different times, I have been reminded of this and reminded that each day I have an opportunity to keep working and to let myself be used by God. So I pray for opportunities and reminders to be able to pray for other people like I know they are praying for me.
A lot of people start their statements saying, “Of course it’s not that serious but I am dealing with XYZ” or “It’s really no big deal I’ve just been struggling with…” And the reality is that whatever people are struggling with is a big deal to them. Everything that impacts our day-to-day functioning, makes us question or fear the future that we planned, and makes us wonder where God is, is important; and it can be just as nerve-racking and impairing for each of those people as my diagnosis of ALS. Fear can paralyze. The questions can make you trapped in your own mind. Time wasted worried about the future can make you miss out on everything happening in the present. Philippians 4:6–8 says “Don’t worry about anything, instead pray about everything. Tell God what you need and thank Him for all He has done.” The reality is I still have a lot to be thankful for and no matter what happens I know that God is good. For me, praying for my friends and seeing their struggles, is a reminder that it is not all about me. Although this diagnosis absolutely shook up my world, it didn’t up end the rest of it. There were still amazing things happening- friends getting married, starting or growing in their careers, and wonderful moments with so many family and friends. Not only did it help me to reassess and be reminded of how blessed I am with my family, friends, and church community, but it also helped me to see anew the fears other people had for their own health and the way that so many people now saw the diagnosis instead of me.
Thankfully there were many people who wanted to find ways to help me and listen to me as a person and not just as a diagnosis. I received a script for rollator walker in June. As of early October, the script still had not been approved by my health insurance. My mother-in-law, who has a gift for talking with insurance and other agencies, reached out to The ALS Association Greater Philadelphia Chapter regarding their loaner closet. At that point in time, no one had told me about the existence of the loaner closet. The ALS Association was amazing. Within two days they had said that they would send me the type of walker that I needed and, unlike my insurance, they clearly had an interest in helping me.
When I was first diagnosed, I was sitting in my hospital bed with my sister and I told her, “No matter what happens- I will not write a sad Facebook post about my diagnosis.” Supportively, she agreed. I went on to say, “And I am not doing a walk. I would love to donate and raise money after I am healed but not before.” Again, she agreed and said “Absolutely. When you’re healed we will walk and run and donate!”
I learned early that hair and makeup could make a huge difference in how I was treated and in moderating the pity that I saw on other people’s faces. I lost the ability to do my own hair and makeup early in August of 2016. Although I had some luck with large eye makeup crayons, I was truly blessed in my little sister. Before I realized that I could no longer get ready on my own, she began offering to do my hair and makeup. My sister had always been better at both of those things; so, I jumped at the chance. Over time, more and more went onto the list of things that she did for me without me ever having to ask. My husband repeatedly explained that he is also always there to help but I wanted to be able to do things on my own: to help more in our small apartment, to change and get ready my own, and to not have to ask for help with things that I had done on my own for over 20 years. The frustration in not being able to deny help, because I am unable to do it on my own, is difficult to fully express.
So, I worked hard to appear as typical as possible in public. Even though my best friends and family were struggling with the grief, I did not want that sadness to absorb every other aspect of our lives. I wanted other people to know that I am still experiencing joy even with the stress. Then I realized that some people did not know that I was sick. On some level, that was on purpose. But I know that there is nothing that Jesus Christ can’t heal and I believe that He will heal me. James 1:2–4 says, “Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing.” It has not been an easy verse to follow. That doesn’t mean that I don’t get scared or sad or overwhelmed but it does mean that I have confidence and that I can have peace in Christ. Accordingly, I realized that in order for people to know that I was healed, I had to let them know that I’m sick. I had to be humble and let go of my innate desire for privacy. So, I called my sister and told her that my diagnosis would be going on Facebook and that we would be creating a team for the walk. She was immediately supportive. We wanted to pick one that would give money to the Philadelphia Chapter since they have been so supportive and also choose one in New Jersey- all of which led to create team A Cure for Kait at the Seaside Walk to Defeat ALS this May.
In starting this team, I had no idea what would happen and I never expected the results that I have seen. Our friends, family, and support networks have blown me away with the depth of their faith, generosity, and willingness to put feet to their words. To anyone reading 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. Any goals that I had for our team have already been exceeded beyond measure. Nothing is impossible with God so “Be joyful in hope, patient in affliction, faithful in prayer.” Romans 12:12. I am hopeful that we will continue to bring awareness to this horrible disease and continue to raise funding to support the Greater Philadelphia Chapter.
Already our awe-inspiring team has raised over $25,000 and we have 108 members. We are so appreciative of all that this money can do for the Chapter and truly inspired by the many people who are willing to come and walk with us. My family, friends, coworkers, and church have completely blown me away with their support.
We are also always open to anyone who wants to be a part of our team in any way. Friends have been fundraising through Jambury nails (email email@example.com to get your own special nail wrap for the walk), through Stella and Dot jewelry (https://www.stelladot.com/ts/v52r6), and donating directly to our team #acureforkait. A friend also created an amazing shirt (email NicoleFiggs@gmail.com if you’d like to order a shirt $6.50 or a tank $8.00) for anyone who wants to start the conversation regarding how to knock out ALS. Over and over I am seeing that my friends and family all want to help and that they are amazing at it. We were looking at the walk as a way to bless The ALS Association Greater Philadelphia Chapter but it has also been a huge encouragement to my family and myself.
“With God all things are possible” Matthew 19:26. Two separate highly known medical facilities diagnosed me with ALS. I was told that I had one to five years to live and I watched myself lose the ability to run, walk, cut my food, type, dress myself, bathe myself, and speak in the way that I have my entire life. I have come to accept that people look at me with pity when they see me struggle to walk, talk, eat, and breathe. It is often still an effort to go out in public beyond my close circle of friends and family, because seeing the pity can make me sad and ashamed.
Once I received the walker, I had all new dilemmas. I had gotten a semblance of comfort in walking with someone to hold onto. I was used to the way that people would look at me out of the corner of their eyes and wonder if I was inebriated or if there was some sort of problem. I didn’t realize how much the walker would exacerbate that sensation. Once I began to use the formal assistive technology, people did not seem to feel any compunction in stopping to stare as I moved through the room. Many of them appeared to feel pity and did not seem to notice that I could see them the way that they saw me.
There was a story on the radio the other day. ‘It was snowing and the custodian began shoveling the steps to the school. A student in a wheelchair came out and asked him when he would shovel the ramp so that she could go to school. He said that he had to do the steps first so the majority of kids could get in. She said if he did the ramp first then everyone could get in.’ Blaming society and making people feel guilty will not generate change. Rather society needs to learn that making things better for everyone includes each of them. It is important to remember that people may not intentionally be ignoring physical limitations but instead they just may not know how other people struggle.
Like many other people with physical limitations I have many examples of this. One occurred on Friday, January 20, 2017, I went to see The Resurrection of Gavin Stone with 8 of my friends. At this point in time I required the use of a walker to get around. Upon entering the theater, my friends and I were shocked to see that the only handicap accessible seating was set up for one individual person to sit by themselves. The implication felt like those who have disabilities, or cannot get up the stairs, also would not have any friends to come and see a movie with them. I understand that those using a wheelchair would need space for it to fit in the theater. However, there are also those with other disabilities, such as myself, and I would expect an organization as large as this one to make accommodations for that. This made the experience sad for me and my friends- rather than the positive escape we were looking for. Everyone was upset.
My friends immediately sat on the floor so that I would not be alone. The five active, athletic, adult males I was with helped me up the stairs so we could all sit together. It took the group to also help me down the stairs at the end of movie. Luckily, we all made it through without incident. But not everyone has that. So what did I do? I wrote a letter.
My goal is to use every negative experience as an opportunity to see how to better help the system, to make it accessible for others who do not have as much support as I do, and to make accessibility the first thought rather than the second. I am hopeful that this walk, and our team, can help to raise awareness of this horrible disease. Hopefully, we can continue to raise funds and provide tools to help others to function to the best of their abilities until there is a cure for ALS.
Please join us on May 6 at the Seaside Walk to Defeat ALS. We’ll be there as part of A Cure for Kait to walk for the Greater Philadelphia Chapter and for all people facing ALS so that they can get the care and treatment they need.