Updated: May 31, 2019
"A dog is freedom, a dog is hope, a dog is life: my journey to embracing my new life with Athos, a service dog…" -Grace
After an incredible and arduous journey to recovery from post-infectious encephalomyelitis, I was back at work and finding it hard to re-enter my life as normal. Nothing was normal any more. I was struggling to find my new normal. I worried whether I’d be able to cope with the migraines, the anxiety, the triggers that made me fear I was dying again, and I’d leave my children motherless. Every twinge, every stutter, every sudden sharp pain propelled me into fear that this was the end, that the doctors missed something, that my rekindling hope was misplaced.
My journey started in December 2017 when I was pregnant with my third child, a little girl. I was 24 weeks pregnant and in the midst of administering final exams and serving on a hiring committee when I started feeling a little off. Just a minor headache and nausea. It could have been the pregnancy or just a bug. I wasn’t too worried. This pregnancy had been harder than my previous when I gave birth to twin boys. A singleton should be easy, right? Anything had to be easier than twins. It wasn’t.
I remember sitting in the interviews talking to potential candidates that I had screened with my committee members weeks prior, when my headache worsened. I struggled to the end of the session and went to my mom’s house to get my boys. When I got there, I felt terrible. I couldn’t move from the couch and we decided to stay for dinner. That dinner stretched into spending the night. I was feeling terrible and feverish. That night was excruciating. I remember crawling to where my mom was sleeping and telling her I had the worst headache of my life. The rest is a blur. I went to urgent care where they found nothing wrong and told me it was likely a migraine. They gave me medicine and it didn’t work. I was limited by what I could take due to my pregnancy. By that evening, my temperature was 104. I went to the labor and delivery emergency to be observed.
They eventually admitted me with no idea what was causing my distress. I began thinking of end of life plans. At one point I told my mom my desire to end my pregnancy if it would somehow save my life. I didn’t want to leave my children motherless. I desperately wanted this baby girl, but if I had to choose, I’d choose life for me and my boys.
For 4 days I was unable to eat much. Eating induced nausea and vomiting. I would go through periods of excruciating headaches that would abate slightly with Tylenol, and fevers that left me delirious and weak. After 4 days, just 2 days before Christmas, I was released when my fever stayed at or below 101 for 24 hours. I was sent home, with no diagnosis, still feverish and sick.
A day after Christmas, I got a phone call from my Ob-gyn asking me to come in for testing one more time, to check for Cytomegalovirus (CMV). I did and I had it. I was devastated. CMV can cause terrible birth defects in pregnant women, including death. There was a high risk my baby girl, who was perfectly healthy just a few weeks earlier, might now be disabled or die. I prepared myself for the possibility for her to be hearing impaired or have developmental delays, ready to meet any challenge she could potentially face, ready to help her love herself no matter what. We saw specialists who decided to monitor us for the rest of my pregnancy.
Despite having a diagnosis and a plan, I still did not feel my best. I could barely eat anything, and the weight was dropping from my frame as I entered my third trimester. Spring semester started back up. I had taken a reduced load to prepare for my pregnancy. I went to work on Tuesday. I called in on Thursday. Friday, I felt a weakness in my knees and went back to the ER. Nothing except I was in excruciating pain when they put the monitors around my belly, which should not cause any pain. They sent me home with a diagnosis of possible gallbladder issues. By Saturday morning I could barely stand in the shower, my speech was slurred, and I clung to the wall to walking down the stairs to avoid falling.
I called my OB exchange again, and my nurse lectured me for not eating. I physically could not eat. I felt like they didn’t believe me. Back to the hospital again, they wouldn’t see me in the labor and delivery ER but sent me to the regular ER…with a 3 hour wait time estimate… during flu season…when I was pregnant. My mom grabbed me and took me to another hospital, after waiting for an hour in the overcrowded ER in pain. She said she could see me dying right in front of her eyes and no one was helping me. I cried in pain when the arm pressure cuff tightened. My whole body hurt. Another nurse chastised me for not holding still and I nearly cursed him out. My dad convinced him the pain was real. Finally, a doctor saw me. He took one look at me and decided to send me by ambulance to a bigger hospital in the city to be treated by specialists. I was believed, and someone was helping me finally.
Once I arrived at the bigger hospital, I was met by a sea of faces in hazmat suits and face masks. I couldn’t tell who was talking to me as I couldn’t see their faces. It was terrifying. One nurse told me no one knew what I had and told me it was exciting. I did not feel the same.
Neurologists came to see me the first night and I could still walk. By morning I could not. Two days, two MRIs, and one spinal tap later I had a diagnosis—Transverse Myelitis caused by an autoimmune response to the CMV. Basically, my immune system went rogue and attacked my spine and brain after the virus left my system. A later Neurologist identified it as Encephalomyelitis as it had affected my brain in addition to my spine. I was put on a treatment of steroids and set about preparing to return home without being able to walk unassisted.
I received a walker after 3 days and met with an OT and PT. Side note: To lighten the situation, my family and I named my walker “Walker Texas Ranger” and my cane “Michael Cane.” I had to move my little family into my parents’ house and learn how to talk, walk, and regain my balance. One of the side effects was my speech became slurred due to a lesion in the speech center of my brain. I needed help to go to the bathroom, take a shower, talk to doctors and nurses, or to do pretty much anything. I went from being a college professor and mother who took care of her children, to being taken care of like a child, almost overnight.
One really negative side effect of all of this was anxiety. Every little symptom made me afraid the myelitis was coming back. I worried about the impact it would have on my daughter, still growing and being monitored for the effects of CMV. Panic attack after panic attack plagued me, along with new symptoms of migraines and dizziness. For a month I wore a heart monitor, which ripped the skin off my body where the leads attached. I attended physical therapy 1-2 times a week to work on balance and coordination. I called doctors and lawyers, seeing if what happened to me was due to negligence. And all the while, I was growing a baby that could potentially face serious challenges at birth.
Through the wonderful support system of my family and friends, I made it. Ramona was born in April, perfectly normal and beautiful, and afterwards I moved back to my home. I regained the ability to walk, but was now recovering from a C-section and trying to take care of a newborn and two small boys. I had three kids under the age of 4, and my mom moved in to help me and my husband.
About this time, I was convinced to seek out therapy. I suffered from postpartum depression and anxiety with the boys and started seeing a psychiatrist and started weekly sessions with a psychologist. At first my mom drove me (and all three of my children) to all of my appointments. By July, I was able to drive myself. I made improvements, but still was having mysterious symptoms that made me fear I would return to my former state.
In August, I went back to work and began suffering what I later realized were panic attacks and anxiety induced migraines. After one particularly bad day where I lectured through a panic attack, one of my colleagues said to me, “you need a service dog!” It was if a light exploded into the room. A small but powerful gleam of hope filled my heart. Yes! A service dog could come with me to my work, could calm my panic attacks, and maybe even alert me before one took complete hold and ruined my day. A service dog could give me freedom, could give me back my life. But how do I get one?
This began my journey to find a dog. I contacted service organizations, learned their process and prices, and thought there was no way to get one for myself. I reached out to a few places but was told a waiting list wouldn’t open for another year. I couldn’t even get onto a waiting list let alone come up with the thousands of dollars it would cost to get a dog. I nearly gave up.
Then in January 2019, a social worker called me offering a program paid for by my insurance to help me find resources to cope post-major medical problems. I asked for several things, but top of my list was one thing, a service dog. My social worker found me American Service Dog Association and Susanne. She also helped me realize I was minimizing my need and encouraged me to reach out for help.
In March I did. I spoke with Susanne and she reassured me that there were plenty of dogs to go around and that she could help me if I wanted to go forward. I was encouraged, but I still didn’t know how I was going to get the money to pay for one. Susanne told me about fundraising and sponsors as a possibility. I was sincerely hoping I had a medical malpractice case that would give me the funds I needed. Months earlier, a lawyer led me to be hopeful about my case, that I could possibly get what I needed to cope and get a dog.
In April, Susanne called me again to see if I was still interested. I called the lawyer and they dropped me. It seemed as if my chance of getting a dog was gone. I cried on the phone to my mom, devastated to lose the hope that had kept me going. My beautiful mom encouraged me to talk to Susanne again. I told Susanne that I didn’t know if I deserved a dog, but could I please see one to see what a PTSD dog could do. She arranged to meet me that weekend.
When I walked into Lowe’s with my kids and mom, I was anxious, still afraid that someone would think I didn’t need a dog and was overreacting. When I saw Athos for the first time, I was smitten. He was so beautiful. I didn’t want to get attached to him. For all I knew, he was already someone else’s dog and not available to me.
Susanne was wonderful and reassured me that there were plenty of dogs to go around and that I could have one if I thought it would be a good fit in my life. I was reserved, trying to hold myself back, but all the while snuggling Athos and letting his warmth soak into me. He leaned against me and snuffled my hand. This dog was perfect, but was he even available?
Yes! He was ready to go train with his person and I could be that person. I practiced with him a bit to see his commands and discuss how he could potentially help me. I left to think about it more, arranging to meet the next week if I thought he would work for me.
That week I thought what it would be like to have a dog like Athos. I dreamed about having a dog to sit close to me and touch me when I was anxious. I had another panic attack at work and thought how nice it would be to depend on an animal rather than try to hide my emotions from the people around me. When I am in a panic attack, people touching me or attempting to sympathize doesn’t help. But an animal, a dog, could just sit with me and I wouldn’t be worried about what he thinks about me. Not worried about him judging me or thinking I’m weak. I don’t have to put on a face of having it together. I knew he would just love me and lean on me. I was sold. I wanted Athos.
I met with Susanne the next week and submitted my application. I wasn’t sure yet how to raise the money for him but was reassured by Susanne that she could help with finding sponsors to help me out. I told my friends and family and asked for help. They were ready and willing, even agreeing to help me with a trivia night and donating art for a silent auction.
I trained with Athos, and when I missed a week, missed seeing his face. I kept a picture of him on my phone and looked at it often, imagining having him in my life and in my family. The boys and I talked about getting Athos and what our family would be like when he came to live with us. I thought about our fundraising and how we could accomplish the task of raising funds not just for me but other people who needed service dogs too. And then, I went to a class to train and met Katie.
Katie was there with Moxie and I had never seen her in the classes before. Moxie was her service dog, and both were happy to meet us, but I wasn’t sure why yet. While we were waiting for class to start, Susanne and Katie made an announcement telling the class about Katie’s program Moxie’s Mission. She spoke of her goal to unite service dogs with the people who need them. To not let the price of a service dog keep people away from the dogs they needed. She then told me they were sponsoring me in full! I remember feeling awestruck and humbled. To have complete strangers help me so much was overwhelming…and a blessing beyond measure.
It is a humbling thing to not only ask for help but to take it when it is offered. For the last year, there have been so many times I have felt completely out of control of what was happening to me. Being a planner and a control freak, I was absolutely wrecked feeling totally dependent on others to help me. When I was in the hospital, I spoke with a chaplain who helped me to realize there was power in my situation. I could learn to give up control and let others help me as I had no other choice! A life lesson so many of us never have the opportunity learn, yet can save us from unnecessary grief and suffering. I am thankful I have learned to ask for help, but even more I am thankful to all the people that surround me in this life who have offered their help so freely. Susanne with American Service Dog Association and Katie with Moxie’s Mission are just the most recent examples of the completely amazing and generous people who have gotten me to this point. I am forever grateful for having these two ladies in my life. They gave me hope, connected me to hope directly in the form of a dog. I have to say it just seems like a miracle the way all of my steps have been guided to this point. I am so thankful—thankful doesn’t even begin to cover how I feel, grateful, indebted, overwhelmed, in awe, beyond appreciative to these ladies. To give me this hope, this freedom, this life, this dog: Athos MY service dog.