Back in 2006 when I got sick, there was little knowledge about TM and ADEM—except for in specialty places like Johns Hopkins. It wasn’t until 2010 that more doctors and hospitals began to learn more about the two conditions. However, as with any neurological disorder, being proactive is key. And none of the doctors I’d seen up until now had been proactive.
ADEM is an autoimmune condition, which means that the body’s immune system mistakenly identifies its own healthy cells and tissues as foreign and mounts an attack against them. According to the National Multiple Sclerosis Society,
ADEM is a brief but intense attack of inflammation (swelling) in the brain and spinal cord and occasionally in the optic nerves. This inflammation damages the brain’s myelin (the white coating of nerve fibers). Other terms used to refer to ADEM include “post-infectious encephalomyelitis” and “immune-mediated encephalomyelitis.”I
Transverse myelitis is a similar condition and causes inflammation of the spinal cord.
The perfect storm.
Most, if not all, cases of ADEM and TM are separate. A patient may get one or the other, but usually not both. Both of these conditions struck abruptly and suddenly—within a month of each other—like a twister on a prairie that wreaks havoc, uprooting buildings and destroying everything in its path. ADEM and TM severely crippled my life and brought horrific pain and loss. They stole my innocence and many years from my life. And I’m still trying to pick up the pieces from that tornado.
Getting an answer brings a mixture of happiness and relief along with sadness, confusion, and anger. As I try to grasp the doctor’s words, nothing prepares me for what comes next.
“This could’ve been avoided.”
He tells me that a simple round of steroids could have prevented this inflammatory process from destroying my body and nearly taking my life. It would’ve been my best shot at anything close to recovery at the time of the initial onset. My heart sinks, and I don’t know if I want to cry, scream, or punch something. My head spins as I begin to process this news. I recognize this feeling of panic and distress and remember feeling this when I was locked in. I feel frozen, absolutely frozen on a merry-go-round that would not stop spinning.
Spinning.
Over and over again.
Breathe, Victoria.
Just breathe.
As I begin to calm down, I learn that if my previous doctors had been proactive, rather than saying my illness was psychological, I maybe would not have gotten sick, and I would not have lost all that I’ve lost. The initial onset of my illness was quite slow, which would have made me a perfect candidate for treatment and a relatively positive outcome with little to no residual effects. In most cases, ADEM and TM strike quickly, and within a few hours the victim has lost all function, and treatment may not be as effective. However, my medical decline initially was slow, and it was more than likely that I would have responded quite well to treatment. But I did not receive the correct diagnosis; instead, various doctors taunted me, degraded me, and told me I was crazy—for years.
I wasn’t crazy.
Those doctors told me I was crazy when they could have and should have helped me. All of those frantic emergency visits and all the condescending remarks were completely unnecessary. The unmarked facility was completely unnecessary. All those years lost—unnecessary.
I’m not crazy.
For years, I was confused about why all of those nurses and doctors called me crazy. Although deep down I knew I wasn’t, after hearing it so many times, a part of me secretly wondered and worried.
I’m not crazy.
I’m not crazy.
I’m not crazy.
Over and over again, I mutter these words, hoping each time that I will believe it. As I try to catch my breath, I feel both angry and relieved. I slowly begin to cry, as this truth sinks in.
Believe it, Victoria.
You’re not crazy.
You never were.
The rest of the appointment is a bit of a blur. “I’m not crazy”—those three words keep replaying over and over in my mind, drowning out what is said afterward. My mummy joined the appointment after I was given the news, and she later tells me that the doctor gave us some information about potential rehabilitation options for my legs. But he also told us that the likelihood of me walking was slim and that we shouldn’t “mortgage the house” for treatment. It was more so to help my scoliosis and the other medical complications that come with being paralyzed from the waist down. I was in horrific pain, and he wanted to see if rehabilitation could possibly help.
The car ride back with my mummy and grandma is quiet. I anxiously look through the packet of information that the doctor gave me, which describes ADEM and TM. I see the diagnoses, and I can’t help but feel overwhelmed with emotions. Finally, I have answers. Finally, I can move forward. I can grieve and process the turbulent journey that has consumed the last seven years of my life.
Closure.
It’s strange to finally know what happened to me, but it is also horribly upsetting. Now I know that I did not need to go through what I went through—all this could’ve been avoided. Finding peace has just become even harder, because none of this had to happen.
Breathe, Victoria.
It’s okay.
You’re okay.
You cannot rewrite the past.
There are many times in life when we don’t understand why bad things happen. Whether at the hand of others or damaging acts of nature or something else—there is no quick fix when it comes to processing and healing. Each of us has a different approach, and that is how it should be.
My reaction to painful things is to bottle up my feelings and keep them inside. But when circumstances and feelings come to an irrepressible boil, I finally break down.
But it would be a while before I finally break down.
*
I. https://www.nationalmssociety.org/What-is-MS/Related-Conditions/Acute-Disseminated-Encephalomyelitis-(ADEM).
12
EXHILARATION AND DEFEAT ON THE WORLD STAGE
August 2013 to September 2013
After my successes in London, I take only a week off to see my family, who live in Scotland. As soon as I touch down in Boston, it’s “back to work.” Back to 3:00 a.m. wake-up calls and back to long, grueling workouts with my coach. According to Coach John, “One gold is not enough.”
The racing season picks back up after the New Year, and I set my sights on the 2013 World Championships in Montreal, Canada. I’m excited to see what my times will be now that I have a solid year of training behind me and am no longer a rookie. In London, I had zero experience competing on an international stage, and there is a massive difference between competing nationally (maybe fifty to one hundred people in the stands) versus internationally (twenty-two thousand in the crowds and millions watching on television). Most large sporting events are accompanied by lots of media and drama. I am praying that there will be no drama at the World Champs so that I can just enjoy being a part of Team USA and focus on swimming.
Unfortunately, that will not be the case.
The IPC classifiers are not finished with me yet. In spite of the massive amount of medical documentation I’ve already submitted and the grueling evaluation they put me through in London, they are not letting up. It was decided that a year from my last classification evaluation (September 2012) I would be reevaluated to make sure everything adds up. The World Champs are in August, so I’m thinking I won’t have to worry about classification issues until after the Champs, in September. But …
“They decided that they are not going to wait until September and want to classify you in August,” I am told very matter-of-factly by our team manager, Queenie.
“You’ve got to be kidding me.”
Please be kidding.
In my opinion, it is beyond wrong to bring up classification during major events. Doing so messes with athletes’ heads and throws them off their game. Who knows what I could have done in London if I ha
dn’t experienced such a rough time with the classifiers. It honestly took until the very last night of competition for me to feel like myself and feel excited and relaxed.
So, I am dead set on making sure what happened in London doesn’t happen again. I don’t want to compete and then be humiliated again. My times are fast, and I am setting world records left and right in practice. My US coaches are very excited and keep encouraging me to go to the World Champs. Several coaches assure me that what happened in London won’t happen again and that this new evaluation is just a “formality.”
After a while, I believe what I am being told and agree to compete at the Champs. John and I have gotten into a groove, and I am beyond excited to compete—especially now that I have so much training behind me. Sponsors are beginning to take notice, and the “Road to the Rio Paralympics” advertisements and media teasers have already started.
My main competition is not swimming her best, and her times get worse post-London. As much as I don’t want to assume or be overconfident, I am confident that I can beat her in Montreal. It will be another showdown of the teenagers, but this time we’ll be on even ground. I have caught up in regard to training and maybe even passed her a little bit. I’m not the comeback kid anymore. Instead, I am the one to beat.
• • •
The 2013 World Championships in Montreal are going to be my event, and I have worked my butt off to get here. My family and friends have sacrificed their time and energy and have supported me endlessly. I am fueled by their support, so in spite of significant elbow and shoulder injuries from overuse, I keep pushing. Meanwhile, my family has spoken with various US coaches, lawyers, and officials and are aware of the IPC drama.
In retrospect, I can see warning signs of the intentions of the IPC and its CEO to bar me from competition. First, I am not included in the marketing video, which announced the Montreal World Championships, even though I am one of the most talked-about swimmers post-London. Second, Ellie Simmonds is included, in spite of the fact that I surpassed her in two out of the three races. I would be her greatest and—given her times—only rival competitor to put her placement at risk. It is also interesting that Ellie did not achieve qualifying times in World Championship trials for the 50 freestyle or the 100 freestyle, yet she was granted a “discretionary” position to compete.
I place no blame on Ellie for any of this. She and I enjoy sharing our competitive spirits, and I respect her tremendously. The fault lies well above either of our heads.
Another warning sign comes in June. Weeks before the competition in Montreal, my family and I receive a concerned email from WMUR, an ABC affiliate. WMUR had reached out through email to the IPC in preparation to send a crew to follow the World Championships and to cover my races. They ask for a schedule of my events. The IPC emails WMUR back saying that I am not competing in the World Championships. This is before any concerns for my classification have been presented to any of my coaches or to me. When the US Paralympic officials question the IPC, the IPC states that it was an accident that my name was not included and that they must’ve missed my name. My last name begins with an A. I am at the top of the list.
Even with these issues, never in a million years do I imagine that what goes down would actually go down. I have been assured by the United States Olympic Committee that what happened in London would not happen again. In truth, they were right … this is worse than London.
Since I have been told that my upcoming meeting with the IPC is just a formality appointment, I decide to trust that everything will work out. Of course, I’m anxious, but I channel that anxiety into my training and getting prepared to make my country proud. After all, being a member of Team USA is an honor, and I want to be there for my teammates.
Before I know it, I am on a plane to Montreal. I want to be excited, but my apprehension kicks in.
Is this going to be like London all over again?
Will I be able to swim?
It’s true that I am swimming significantly faster than Ellie, but it isn’t because I’m cheating. I had chosen not to take a long break after London and had worked really, really hard. The main difference between now and a year ago is that then I had only about five months of solid training under my belt. I had not tapped into my potential in the water. Now I have some serious training behind me, as well as a team supporting me and helping me train and compete at the highest level. I have done my job and have poured everything and every moment of every day into this sport. All those early morning wake-up calls, leaving prom early so I could be rested for double sessions early the next morning, not having a social life—all of it was for this event and the events that would follow—including the 2016 Rio Paralympics.
But in the end, all that hard work and determination gets me nowhere but into a car back home to New Hampshire.
Hope.
Even though the IPC has well over a hundred pages of medical documentation regarding every detail of my disability, they still want more.
My appointment at Johns Hopkins the month before was partly to get information for my peace of mind, but I also thought that surely a diagnosis from this respected institution would satisfy the IPC. And my doctor at Johns Hopkins did provide another concrete diagnosis that I am paralyzed.
Because he was so kind and thorough, I also asked him another question—one that has plagued me for years and continues to be in the back of my mind. I asked what my chances might be of regaining function in my legs and maybe even walking again. Very kindly, he told me that I could try rehab, and he shared some recent spinal cord research findings. But he also said that it would honestly take a “miracle” for me to walk again.
When I asked the doctor that simple question, I had no idea it would create the tidal wave of events that followed. And I never imagined that having “hope” would ultimately ruin and take away the very thing that gives me so much hope.
As it turns out, the IPC uses the doctor’s notes to classify me as ineligible. Because I have expressed hope that I want to walk again and regain function, the IPC uses my hope to oust me from the 2013 World Championships. His notes are taken out of context and misinterpreted. The IPC disregards all my other medical records and previous classification examinations. My disabilities are diminished, dismissed, and declared “not permanent.” Apparently, the IPC has found a loophole through which they can determine my disability isn’t permanent due to the mere fact that I have hope to find a cure for paralysis and gain back mobility.
“What do you mean, I can’t swim? I was told you wouldn’t let that happen again!”
Not again.
Please.
At this awful meeting, I am pronounced ineligible for classification: “Victoria, you have to go home. You can’t be here anymore. Please go pack your bags.”
This is cruelly done at 4:30 p.m. Friday afternoon with competition to begin Sunday morning—clearly not allowing enough time to prepare an appropriate appeal. As I leave this meeting with the “matter-of-fact” words and lack of information and explanation, I am numb. I sit in front of my hotel door, shaking and crying, trying to find the strength to scan my key and open the door. I collapse on my bed as my phone rings over and over again, but I have no strength to answer it.
Unable to move, I stare at my race suit and my Team USA swim cap. It is laid out perfectly on my dresser; my lucky goggles’ mirrored reflection stares back at me.
How could this happen?
How?
I think about my roommate who is still at practice, and I think about my team and the fun they’re having as they train and check out the competition’s pool. The IPC wouldn’t even let me go to the pool with my team. They made me feel like a prisoner with an incurable disease. Broken, alone, confused, and absolutely devastated, I muster up the energy to pack my things.
I purposely do not go near my swim stuff until everything else is packed. When I do reach for it, I’m overwhelmed with anger, and I throw my race suits, caps, and goggles across the room. As I
do, I fall out of my chair and hit my head on the corner of the table. But I don’t care.
You can’t get much lower than this.
I don’t know what to feel. I curl up in a ball and stare blankly at the wall. Closing my eyes, I just want to be woken up from this nightmare.
This can’t be happening.
This can’t be real.
Wake up, Victoria!
Wake up!
The worst nightmares are the ones you don’t wake up from …
This is real.
The rule book says it is mandatory that they evaluate me. But they had refused, and their timing ensures that their decision cannot be sent to an appeals court.
So, I go home. There is nothing that can be done and everyone’s “hands are tied.” That is it. No fighting, no appeals court.
In the blink of an eye, everything is over. Just moments ago, I was a world-record breaker, nominee for an ESPY (Excellence in Sports Performance Yearly) Award, and gold-medal-winning champion swimmer. Now, the sponsors who had been pursuing me stop calling, and my name is plastered all over the media for not being “disabled enough.” Which is a cruel and senseless misinterpretation of what actually happened.
As much as this isn’t my fault, I feel as if I’ve let my team down. I am one of the top medal contenders for these games, and people are relying on me. I have fans from all over the world who are looking to me for hope and ready to cheer me on. I have a coach and a family who believe in me and have sacrificed so much.
It’s over.
Within two hours of receiving this devastating news, I am in a car—driven by our team manager—to meet my mummy. I am numb, completely numb. I have cried so much that I have no tears left and cannot even formulate words. I sit in the backseat in silence, staring into oblivion and listening to “Oceans (Where Feet May Fail)” by Hillsong United over and over again:
Locked In: The Will to Survive and the Resolve to Live Page 11