Written by Rachel O’Grady.

Have you ever heard this saying before? This has been the story of my life each and every day over the last almost six years since I was diagnosed at the age of 33 years old with congenital spina bifida occulta and congenital tethered cord syndrome. Because I went undiagnosed for 33 years, I now have permanent nerve damage including full loss of my gastrointestinal (GI) and bladder sensation. I have also undergone eight surgeries in the last almost six years and may be scheduling another one in the near future for my bladder stoma. 

Because of my rare disorders, I was born with a deficient immune system, and I am prone to contracting infections that can become very serious in the blink of an eye. The infections that I end up with are almost always GI and/or urological infections. One infection, however, almost derailed my ability to finish my graduate degree last year, and had it not been treated as quickly as it was, it could have also cost me my life. 

On 26 September 2022 I went into hospital to again undergo surgery—in 2019 I had undergone successful detethering surgery. This time the operation was to correct severe congenital spinal stenosis, which had progressed from mild in 2019 to severe by 2022. At this time I was a graduate student in my second-to-last semester before earning my Master of Social Work (MSW) degree, commuting once a week from home to my classes. I was also working in my full-time internship placement for a local state representative. I was excelling in my internship and I had worked hard in my MSW programme, earning only top grades. I was on track.

The spinal stenosis surgery went well and was successful. I spent five days in the hospital but then made it clear that I needed to be discharged because I would be thrown out of the MSW programme if I did not return to classes the following week. The hospital was hesitant but agreed to my request. I had worked hard for two and half years of the three-year programme and was not going to be thrown out for a medical issue that was not in my control.

I returned to campus the following week with my backpack on my back. I made sure that I was in attendance in all four of my classes that week. But my determination not to be terminated from the programme because of medical issues outside of my control ended up resulting in my graduation plans being altered.

On 11 October (the week after having returned to classes), I woke up in excruciating pain with a fever, sweats, chills, severe nausea and feeling severely light-headed as if I may pass out, and I was shaking uncontrollably. I had still planned to carry on with going to my internship that day and told myself that I would be fine. God decided however that there was only one place that I was going. 

Upon lifting up my shirt to look at my incision, my mother found a large red lump at my incision site. My father packed me into the car and drove me back to hospital, where I was attended to immediately. The results of the tests and all of the imaging revealed that I had contracted a very serious MRSA infection at the site of my spinal incision, which had gone into my spinal fluid. I spent 13 days in a step-down unit of the ICU on IV antibiotics to clear up the infection. 

Thankfully, during those thirteen days my professors went out of their way to accommodate me and allowed me to Zoom in for my classes so that I could accomplish my goal of graduating with my MSW. 

Despite feeling awful because of the side effects of the IV antibiotics, I Zoomed into every class for those 13 days. I turned in all of my coursework on time and stayed in contact with my internship. I did not want my graduation derailed.

Once I was cleared to leave hospital on 25 October, I was sent home with a PICC (peripherally inserted central catheter) line in my arm, and every day for 13 weeks I did IV infusions of an antibiotic at home, twice a day for one hour a day, and I even did them at school. This required bringing in the infusion balls (disposable pumps) with the medicine and all the other necessary supplies. I was prepared to do whatever was necessary to graduate on time. 

I finished the IV antibiotics and thought I was clear to resume my “normal” life. Not long after planning out my last few months before graduation, God decided that I needed to make myself a priority. This time it was a blood clot in the vein next to my PICC line, followed by a serious urological infection. 

Because I just kept getting sick from infections, I ended up having to complete my internship from home via Zoom for my last semester and a half. Never feeling 100% as each week passed, my days on campus came with schlepping a pharmacy with me, including oral antibiotics, medicine to treat pain and swelling, blood thinners, and medication to prevent nausea and vomiting—just to get through one day of classes each week. I stayed on course the best that I could.

I am proud to say that, even though these medical issues ended up pushing my graduation back by three months, in August 2023 I graduated from college with my Master of Social Work Degree with a concentration in community outreach, education and advocacy. 

All of the unplanned medical challenges have helped me to understand that there is no point in planning and that I need to focus on one day at a time and on being present in each moment of every day. I am grateful for having learned to take life one moment at a time and how to be present in each day that I wake up. Learning this has made life less stressful and more beautiful.

Editor’s Note: If you would like to contribute your own Patient Voice piece, please contact: hello@rarerevolutionmagazine.com

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