The day my doctor informed me I would depend on a wheelchair for the rest of my life was a tough one. When I learned Charcot has no cure and eventually I may lose both of my legs below the knee was even tougher. Being told I couldn't swim again due to the risk of infection leading to amputation was by far the most devastating news of all.
The water has always been my solace. My first memory is of my father tossing me high into the air and then landing with a splash, plunging into the warm Texas waters of our swimming pool. I squealed with delight flapping my bright orange floaties like a baby bird trying to take flight as I plummeted towards the choppy waters. These are some of the best memories of my childhood before my father had his accident and passed.
Being a Skimmer on the Circle C swim team was where I learned I'm the only one who is responsible and able to improve myself. No one else can put the hard work in for you. I actually loathed swim practice. I may love the water, but I'm more of a manatee than a barracuda when it comes to speed. Coach Janet would be shouting with bulging neck veins and red faced, "C'MON, ALI, PICK UP THE PAAACE!! WHAT DO YOU THINK THIS IS?! SUMMER VACATION?!!" In my flustered frustration I would choke down gulps of salty sweat water and thrash even harder among the teaming 11 year old packed waters. I always won a ribbon at our meets. It the ribbon that was awarded the one's who didn't even come within a mile to placing "Personal Best". I would stuff my handful of "Maybe You Should Try Synchronize Swimming Instead" ribbons down the front of my suit and slink off to the car to sulk in my swim cap.
As a moody tween, when my family would take our rinky-dink ski boat out on Lake Travis in Austin, TX, I would sulk at the back letting my hand dip into the wake and spray as we sped along. Mournfully I would sing this forlorn love song I composed to the river god beckoning to steal me away to his underwater kingdom (no joke, I could still sing it for you today). Later on in life I would read the Twilight series and feel I needed to champion strong women figures in teen literature. I began writing a trilogy all about a mermaid (me) and of course, a river king who is madly in love with said mermaid (still to be determined). I got a little over 50 pages done and still have it stashed somewhere in my Google docs.
My very first job at 15 was as a lifeguard. We wore high cut one piece red swimsuits. My nickname from day one of training was "Baywatch". When I turned 16 my white T-top 1998 Camaro was emblazoned with red lettering on the bumper reading "B A Y W A T C H". All of my summers in high school were spent guarding. I loved it so much I became a lifeguard instructor and eventually a manager of several city pools. I was the strictest guard Garrison district had even known. Completely by the book. The local kids and I had standoffs daily due to my intolerance of any roughhousing or shenanigans. The incessant blows of my shrill whistle and constant bellowing of "WAAAAALK" should have been remixed into the Garrison pool's "Best of '99" summer hits. I welcomed any staring contest showdown. I always won with my Ray-Bans balanced on the tip of my nose and one eyebrow lifted sky high. I gave into the power of the guard tower. I definitely would have failed at destroying the one-ring-to-rule-them-all if I had been given Frodo's task.
Even into my young adult and adult years the water has been where I feel most at home. My family lived in Florida for a stint. I stayed with them for a semester during college. My brothers and I spent our days swimming and surfing. When we weren't hitting the waves we were getting down on our video games. Only months after my parent's bought their dream forever home on the pristine beaches of the gulf did Katrina hit. She wiped out the entire Cape we lived on. We barely made it out in time before the storm hit. Just hours before, we had taken our small fishing rig out to sea and had been swimming in the swells of one of the biggest storms to ever hit Florida's gulf coast, enjoying the extra big waves like it was no big deal.
Eventually I would find myself living in Hawaii where I spent nearly every day diving in the ocean. I would cliff dive at Maunawili Falls and off "Da Big Rock" at Waimea Bay. I loved floating like an otter, bobbing in the waters of Mother's Arms Cove, letting the waves lull me nearly to sleep. Tourists puzzled from high above how my friends and I managed the perilous cliffs down to the untouched sands. I became a free diver after seeing the documentary The Cove. That movie also moved me to become a vegetarian. That lasted about three months give or take. Being a Texas girl at heart I do love me some brisket, ribs, and Salt Lick BBQ sauce (pats tummy hungrily). Ironically, I broke my fish fast in Japan stuffing my face greedily with Takoyaki known as octopus balls in English. I had no idea what they were at the time. Delicious.
When Pirates of the Caribbean came to Honolulu to cast mermaids for The Black Pearl I was all in. I dedicated every morning to swimming a mile out to Witch's Brew where the ocean waves meet volcanic walls making the water bubble like a seething potion simmering in a cauldron. I would spend hours with my best friend swimming with the Honu (sea turtles) and diving as deeply as my lungs would allow. My favorite sounds were those of the Humuhumunukunukuapua`a munching on coral and the popping of air bubbles whisking after teams of fishes whirling around me. I even swam within ten feet of a white tip shark for a ten second spell one day at Hanauma Bay. Truly magical.
So, the day I learned I had grown glass for feet instead of flippers felt like a cruel joke. I asked my doctor, "At least I can still swim... right?" he informed me swimming put me at risk for infection which would most likely lead to amputation. I felt like a goldfish whose bowl had been shattered. Her only safe place, even if it were to be glued back together, would always be at risk of springing a leak and becoming her demise.
However, that's the thing about this disease. Everything I do could eventually lead to my legs being amputated. Even stepping out of bed without protection. I've met many people online with Charcot who are paralyzed with fear to leave the safety of their homes. Oftentimes it is necessary we stay housebound when we are suffering from an active episode. During this time our immune system attacks our foot bones causing them to break from just our blood pumping through our veins (so no blood thinning medication such as Advil). But you know, I have this one life and I refuse to stop living it. Even if that means I lose both of my legs one day. Which means I could get to run again with those fancy cheetah legs I've seen amputee runners wear! Although... I'm a manatee on land as well as in the water. I really loathe running. I would totally wear sloth legs over cheetah legs. That's more my speed. Plus I would have cool claws to nab snacks from higher shelves in the pantry.
Ultimately, I decided to speak with other medical professionals who supported my wish to continue swimming. My podiatrist now believes with special care and precautions swimming is the best exercise for me. As soon as I got the green light to touch my toes to the water, I was in the pool the very next day.
I struggled across the first length of the pool breathless and aching. Determined, I swam another, and another. Making sure not to push myself too hard but also not giving up before it was time. I managed to swim 100 yards that first day (four lengths). I wriggled out of the water like Shamu posing on his platform expectant of a mouthful of fish for a reward (I opted for glucose tabs). I flopped onto the side of the pool with a grin as big as Michael Phelp's after breaking his billionth world record. I let the sun shine down on me and basked in the glorious feeling of winning "Personal Best" for my own billionth time. Except this time, if I had had a handful of ribbons I would have sewn a new swimsuit out of them to wear proudly at the pool every day.
Recently I have been swimming at the Westwood Recreational city pool. A few weeks ago I encountered my first negative treatment since being in a chair.
Every day I attend the pool I pay my one dollar (special rate for people with disabilities, woot woooot!!) and the front desk attendant opens the door to the pool for me without question. I assumed this was normal practice. Always gracious and accommodating the staff always made sure I felt safe and looked after. Until a few weeks ago.
Per my usual routine I wheeled to the pool door. A guard I had never seen before briskly approached the entrance and proceeded to block it with his body, "You have to go through the ladies locker room." he stated firmly.
I smiled sweetly assuming he was new, "I always come this way. It's why I just bought a pool pass yesterday. This pool is easily accessible through this door while the ladies locker room has four doors and I have to wheel around the entire pool to get to the lap lanes. Just ask any of the front desk people. They always help me in." I nodded my head in obvious agreement with myself my explanation had done the trick and began wheeling forward.
He stepped closer lording over me, "Sorry, ma'am. I don't know who let you through but it's against the rules. We are ADA compliant. You must enter through the ladies locker room."
Beginning to bristle I argued for a few minutes. Before I went full Sonic the Hedgehog I gave up reasoning with him. He wasn't about to budge. I managed to get through the locker room maneuvering through a maze of swimming equipment the swim team had left lying out. Exasperated and out of breath I finally arrived at my usual lap lane. Before sliding into the water I complained to the guard on duty about what happened, "I totally get that rules are important. Trust me, I used to be the biggest rule enforcer of lifeguards. David Hasselhoff would have been proud to have me on his crew. But THAT guy is a real dick. If my feet didn't break so easily I'd love to kick him in the balls right now. But I also don't want him thinking he has brass balls..."
He luckily laughed at my jibber jabber (I can get wordy when I get flustered) and he assured me he would let me out the way I normally came in. I powered through my 1200 meters (an extra 200 hundred thanks to all of the extra adrenaline from my fightin' words). I felt refreshed, relaxed, rejuvenated, and had let go of the whole situation ready to roll on.
Once I wrapped up the guard who had offered his help earlier walked alongside me as I wheeled towards the exit. A booming voice echoed throughout the facility, "She CANNOT go out that way!" The same little punk guard called out as he power walked towards us, his hand making a stop signal like a traffic cop. "She is NOT to exit through the emergency exit. We are fire code compliant." I wheeled about face to face him and began to argue when he cut me off. And then that was it. The beast within me was unleashed.
"You will NOT cut me off while I am speaking. I used to be a lifeguard. I used to teach circles around the likes of you. I know for a fact I am able to exit out of that door according to city code." I whipped back around wheeling away in defiance. He called after me, "You didn't teach ME!!"
To my dismay I found that he had blocked the emergency exit with a table and an orange cone he had dressed up like a rule enforcer (pictured below). I laughed in disbelief, 'WHOA are you serious?! You did this just for me? Wow, we're talking about fire code compliance? If there were to be an emergency I would have no way of getting out of here, not to mention everyone else!! I'd like to speak with your supervisor."
He refused to give me his supervisor's name or information. We argued for another good five minutes. I refused to exit through the ladies locker room I was exhausted from my swim and the idea of heaving open steel doors sounded difficult, not to mention like an accident waiting to happen. Eventually he ushered me to the back of the pool area to unlock the back door to let me out the back. I explained I would have to wheel around the entire building to find an accessible ramp to the street, he still did not budge.
As he pushed the door open and let it swing on its hinges I looked him square in the eyes, "My name is Ali Dugger. I want you to remember my name. For when the day comes you find yourself in need of help, or disabled, I want my name to be the very first thing you think of. I will be the reason you find yourself in that situation. Remember my name because I will be cursing yours every night before I go to bed. Believe you me, you're going to regret the choices you have made today when you no longer are employed by the city after I'm done with you. Bye mother f*$@*!" I swiveled forcefully and wheeled out with my head held high and heart racing. Never had I EVER called anyone that, nor had I ever cursed anyone with voodoo. And never had I ever felt so constrained by my inability to stand.
The next day I was refused entry again. Only this time when I attempted to clunk my way through the first door it beat me to the punch. It flung open and crashed into my left foot. The woman responsible stood there in shock with her daughter horrified staring down at me as my eyes welled up with tears. I gripped my foot through my boot and shut my eyes tightly fighting back the tears. I wasn't about to cry in public, especially not in front of her young daughter who already looked scarred enough. Through quivering lips I assured the woman I was okay and braced myself for the next three doors. A young girl, maybe only the age of eight, who had witnessed the incident padded alongside me as quiet as a mouse. I wheeled along biting my lip and feigning a smile to keep from crying. She gingerly stepped in front of me and opened each door without a word. Her kind gesture only begging my tears to spill over.
I rolled through the last door to be met by the entire swim team wrapping up their practice. All of their heads swiveled towards me as I bonked into the frame of the door making a slight crashing noise. And that's when I couldn't hold back any longer. The floodgates opened, the dam parted, and Niagara Falls came pouring from my eyes. I felt completely exposed. I felt completely at the mercy of others. I felt completely dependent. I felt completely alien looking with my boots and my chair. I felt completely alone.
But I didn't let that stop me from pressing on. All of me wanted to retreat back into the locker room and go live in the cone maze until I was an old wizened woman. I could survive on vending machine stale crackers and Powerade. Instead, I sat tall and continued to wheel forward with tears streaming. I wheeled the entire length of the pool with my head held high (mainly for purposes of trying to see through my tear blurred vision). When I reached the opposite end I was met by a concerned guard.
When he asked if I was alright my story came bumbling out of me in a mess of blubbers and sniffles. Head shaking he introduced himself, "I am that manager's supervisor. The city already let me know you called and complained. I am so sorry this has happened to you. We all see you coming here and are so impressed and inspired. I will make sure he is spoken with and you have free access to come and go as you need through that door. We are here to help you, not to make things more difficult. Which days do you come regularly again? I will make sure he is not working those shifts."
With my tears finally abated I looked up at him thankfully, "I come nearly every day. But please, don't change his schedule. I want him to watch me crawl into this pool every day and see nothing can stop me. Not him, not my disease, not anything. I have fought tooth and nail to be able to swim again and nobody, or nothing, will stop me from what I have earned."
Now, when I roll up to the front desk, the red carpet is laid out for me. My name is posted in both the front and back office and special accommodations are made to ensure I can safely enter and exit the pool area. And now, whenever I see that manager, I stare him straight in the eye to remind him I will always resist being spoken down to. I may require a push to help get around sometimes but I resist being pushed around. I resist being told I can't, when I believe I can. I resist the negative and unwilling attitudes of others to help. I resist the urge to hide when feeling exposed. I resist the statistics of how and when my life will end. I resist the limitations others put on me. I resist being defined by my condition. And I resist ever giving in, or giving up.