A tribute to my dedicated nurses, who go above and beyond

Second in a series. Read part one.

My mum likes to say that my home-care nurse is like a second mother to me, and I’d have to agree. Ever since my SMA care was transferred from a pediatric to a general hospital after I turned 18, my home-care nurse, who is assigned to me for things like home checkups, has been an emergency contact.

Whenever I need to schedule an appointment, renew a prescription, or be admitted to the hospital, or even when I’m just seeking medical advice, my home-care nurse is there for me. If what I ask for doesn’t fall within her skill set, she’ll quickly facilitate contact with someone who can help. I don’t know what we’d do without her.

Once when I needed care and the hospital in our neighborhood wasn’t able to accommodate me, my home-care nurse arrived with my neurologist to assess me and transfer me to my main hospital, where I usually receive care. Both my neurologist and my home-care nurse did this on their day off of work.

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When my rehab neurologist referred me to a pain specialist last year, my home-care nurse convinced me to give the specialist a try. We’d been discussing whether I should be admitted to the hospital for chronic and severe spinal pain. I’d figured that with a pain specialist, I’d just be prescribed more medication. I didn’t think he could treat the cause of my pain like a spinal surgeon could, so I told my home-care nurse I wasn’t interested in palliative care.

My nurse patiently explained that pain medicine isn’t palliative care, although there is some overlap. “This is for symptom control and to bridge the [care] gap while we get a surgeon to assess you,” she said.

Today, at the end of an appointment, my pain specialist will advise me to contact my home-care nurse if I have any additional pain or other complications. “Yes, I know!” I always reply.

Forming new bonds and appreciating old ones

Another thing my mum likes to say is that nursing is a calling, which I also agree with. Some of the most important moments of my life happened because of incredible nurses.

When I was receiving care at the pediatric hospital as a child, I was admitted so many times that the nurses treated me like family. They’d come to visit, play with me, and comfort me. They’d also advocate for me when my parents were away. I even remember them sharing their pizza with me when they’d have a late-night staff meeting. Their presence made my time in the hospital easier while I recovered from illness.

After I transitioned to a general hospital, I didn’t think I’d be able to form bonds like I had at the pediatric hospital. But over the past few months, I’ve been bonding with nurses in the neurology ward, who not only took care of me, but also my mum. One nurse, who was pregnant, pulled up a chair next to my bedside for my mum to rest on. Another nurse, afraid to leave me alone, practically turned my bedside into her desk on the first night of my most recent hospitalization. A third nurse called to check on me after I was discharged.

All of the nurses on staff made me feel safe enough to focus on rest and recovery. And on my 26th birthday, when I was too weak to be discharged, they planned a birthday surprise for me.

I could go on and on. In fact, the only way I can think of to effectively illustrate how much the neurology nurses have done for me is to share an anecdote about my brother. We’d been talking for two hours when he finally said to me, “OK, you can tell me about one more nurse and I then I have to go!”

I know it would’ve been even harder than it was for me to handle my frequent hospitalizations if the people caring for me weren’t as compassionate, skilled, and dedicated as they are.

Of course, I respect and am thankful for doctors — my pain specialist and neurologists are indeed special to me — I sometimes feel like they get all the credit for a patient’s recovery. Nurses also play a crucial role. They’re the ones who ensure that doctors get to me in the first place, and that I’m well enough to survive the procedures I’m being put through. It’s important to give them their due credit.

Next month: I’ll reflect on my pain journey and where I’m at now. 

Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.