By Katelyn O’Leary
Every day I have the same routine: I wake up around 8am, shower, brush my teeth and make a strong pot of coffee. I peruse the daily news on my ipad as I eat a bowl of cheerios and text family and friends. At 11:45 am I call Keck Hospital of USC’s infusion center and tell them I’m on my way. This is so they can have my medications ready by 12:30pm.
I pack a tote bag with the following essentials: ipad, charger, a book, medications, a folder containing my medication lists and infusion schedule, and my wallet. Because I can’t drive, I use ACCESS services (a transport service for Los Angeles residents with disabilities) to take me to the hospital’s front doors. As I walk inside, doctors, nurses, and patients filter pass me and I make a beeline for the table in the main entrance containing fruit infused water. This is a luxury you will not find in most hospitals – but Keck hospital isn’t your typical hospital.
I sip my orange and lemon infused water while waiting for the elevator. Standing next to me is a middle-aged woman wearing a back brace and clutching her IV stand. She looks at the plastic cup in my hand and asks, “Does that taste as good as it looks?” I give her a small smile and say, “It does actually. Would you like me to get you one?” She shakes her head and smiles and we resume our wait for the elevator.
When I get to the third floor, I check in with the infusion center nurse at the front desk. She directs me to my room and my bed – where there is a heart monitor and IV stand ready for me. I take off my shoes and try to get comfortable in my bed. I typically have the same nurse every day. She will attach electrodes and leads to my chest and abdomen to measure my heart rate and respiratory levels. She also attaches a blood pressure cuff to my left arm and a finger monitor to my index finger.
Next she confirms my date of birth and name and checks that it matches my ketamine medication. Before setting up my infusion, the nurse gives me Valium, Benadryl, and 4mg of versed. The combination of these meds makes me drowsy, and it is to prevent hallucinations from occurring. Then the nurse hooks me up to the ketamine.
Now I have been in many hospitals. I have had two surgeries. I’ve been injected with fentanyl, morphine, diluadid, and given oxycontin. With those medications I may be dizzy and high, but with ketamine? I cannot even walk let alone move on my own. The room takes on a hazy quality. My eyes feel like they are swimming in their sockets and my head feels like one of those bobble head toys they sell at baseball stadiums.
You would think that with these intense symptoms and all the meds in my body, that I would fall asleep for the entirety of the 4-hour infusion. But I rarely do. I get very drowsy but I am usually staring at the walls (which sometimes seem to be melting due to my drugged up state). So I watch a lot of Netflix or movies on my ipad.
Lately, my movie of choice has been FORREST GUMP. As a child, I was never particularly drawn to this movie. I always dismissed it as a kooky story that was over-hyped and played too often on TNT. But since I started my infusion three weeks ago, I have watched it at least 5 times.
I think I’m drawn to this movie now, because it grapples with issues so close to my heart. Forrest’s inability to run (and later Lt. Dan’s amputation of his legs) is a plot point that rests heavy on my heart. And when young Forrest heeds the now famous line of “RUN FORREST! RUN!” and his leg braces fall off and the look of triumph on his face – is exactly what I want for myself.
At the moment, I relate more closely with Lt. Dan’s character: I’m angry and frustrated with my physical limitations. For a long time my temper would be close to the surface, and I would lash out at people. These ketamine infusions have given me hope, but I find it scary to admit it out loud sometimes. What if I jinx it? What if the reprieve I feel goes away and the agonizing pain returns?
FORREST GUMP shows pain and redemption from all angles: war, disabilities, abuse, and disease. But Forrest never gives up hope, he lives an extraordinary life despite his pain. And that is all I wish for myself, to be able to run again, to fall in love and to carve out an existence that is more than just pain and coping. But for now, I do my best to cope with my condition and with my treatments. I watch movies, I read books, and I color (a rising trend among adults I’ve noticed).
There is a quote from the film that resonates deeply with me: “I don’t know if we each have a destiny, or if we’re all just floatin’ around accidental-like on a breeze. But I, I think maybe it’s both.” I don’t know what my destiny is, I don’t know if my ketamine treatments will work, but I will never stop searching. I will never stop trying to live the life I have dreamed about – and I won’t settle for less.
Katelyn O’Leary works in the entertainment industry in Los Angeles, California. She suffers from CRPS and is a frequent contributor to the National Pain Report.