Changing My Vision, Recreating My Role
A disabled nurse? I don’t think so.
“Life’s challenges are not supposed to paralyze you.
They’re supposed to help discover who you are.” ~Bernice Johnson Reagan
Apparently, my body didn’t get the memo…but my mind did.
Being a nurse is hard work, no matter who you are. The physical, emotional and psychological toll of caring for others for hours on end wreaks havoc on our souls and our bodies. We cope. We work together to minimize the trauma. We learn to work as a team, utilizing the strengths and acknowledging the weaknesses of team members to get through each shift as efficiently as possible. We learn from our losses and celebrate our victories. So what happens when one of your team members can no longer carry her own weight…literally?
I never thought I’d live to see the ripe old age of 40 (I haven’t, actually…it’s still a few weeks away). I was diagnosed at the tender age of 18 with NMO spectrum disorder after a debilitating attack that left me a quadriplegic. Per the Guthy-Jackson Foundation, “NMO stands for neuromyelitis optica… NMO is currently an incurable but treatable autoimmune disorder. The body’s immune system attacks its own healthy cells, most commonly in the optic nerves and spinal cord. It can cause temporary or permanent blindness and/or paralysis, and may have periods of remission and relapse.” NMO affects an estimated 4,000 individuals in the US and half a million worldwide; I am one of the unlucky ones. I have been both blind and paralyzed. I have learned to roll over, to get up on my hands and knees, to crawl, stand and finally to walk. It has been a constant journey of literally falling down and learning to get back up, over and over again. I have learned to be a fighter.
In the year 2000, I graduated with honors as a Registered Nurse on my beautiful island home, Maui. I have been a nurse now for nearly 14 years and have practiced in areas including ICU, PACU, Endoscopy, and Ambulatory Surgery, among others. I am also a certified Forensic Nurse and work as a Sexual Assault Nurse Examiner and a Deputy Coroner in Washington State. I have worked and educated myself strategically, knowing one day I would no longer be able to practice as a bedside nurse. I am now an Advanced Legal Nurse Consultant and a Life Care Planner. I started my own business, Lifeline Legal Nurse Consultants, Inc in 2012 and it continues to grow. I will not allow this disease to take from me what I have worked so hard to achieve!
Let me tell you a little bit about working as a nurse with a relapsing/remitting type of disability: with each relapse, in addition to coping with the physical loss, there is also an emotional and psychological process that occurs, each and every time. As nurses, we all know the Kübler-Ross model of grieving: denial, anger, bargaining, depression and finally acceptance (I’m pretty sure I skip the “bargaining” phase every time). Although I go through this process with each relapse, I’ve developed coping mechanisms that prevent me from sinking into a chasm of depression.
- I allow myself time to grieve over each loss. Some losses take longer to “get over” than others.
- I don’t hide from the pain…I share it! I found a group on Facebook of people just like me, where I feel free to discuss really personal issues. Surrounding myself with positive, supportive people has been the cornerstone of surviving this disease. I count on my family, friends and coworkers to kick me in the butt when I need it, but also to allow me space to heal.
- I change my vision of what is next in life for me, and sometimes that means reinventing myself. I frequently evaluate my own health, changing my goals as needed. Hence, the launching of my own home-based business. Being a LNC and a LCP gives me the freedom to make my own schedule and allow myself to rest when needed, therefore helping to preserve my health.
- “Learn to let go.” I haven’t quite achieved this goal yet…I’m still angry that fatigue has taken half my day away and that I can’t work the way I used to. However, I have accepted these losses and have changed my dreams to reflect my newest reality.
Don’t get me wrong…I don’t have this all figured out, not by a long shot. Life with NMO doesn’t just affect my working life, but my personal life as well. It’s extremely challenging to find a balance between work, family, and my health. I have to ask myself, “What is living?” Is it pushing myself so hard at work that I end up in a debilitated physical state, or is it staying home, mentally and physically wasting away (I know the answer, but I don’t always follow my own advice)? The answer is tricky and requires a lot of planning to maintain stamina throughout the day. For those of you who haven’t read The Spoon Theory by Christine Miserandino, please take a moment to read it at http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/. It will change the way you look at disability and at your own life. Balancing life with work is already a difficult proposition, but to add in NMO, it makes standing in the middle of that teeter-totter a bit more perilous.
An excerpt from The Spoon Theory:
“Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.”
I now work in an Endoscopy suite at our local hospital once a week. I use my wheelchair when needed, which lately seems to be quite often, and trade tasks with coworkers to keep the unit flowing. For example, I may start an IV in exchange for a coworker pushing a gurney down the hall for me. I often worry what my coworkers think of me so I posed this question to several coworkers and received several responses, including:
- “You have always been one the hardest working, motivated professionals I know. You have lost some of your stamina in the time I have known you but you still push yourself to do the best you can and build your knowledge base. You always maintain your sense of humor. You are also a realist. I admire and support you in all the ways I can. You have been an asset to our hospital and I am glad you are a team member!” (L.B., department manager)
- “I love your work ethic which trumps any physical disability you may have. When things get hairy, you are one person I know who will just suck it up and move on (even if you give me an earful).” (R.C, physician)
I also continue to work for the Coroner’s office, attending death scenes and studying the deceased to help determine cause and manner of death. I am a Sexual Assault Nurse Examiner, responsible for completing forensic interviews and exams, from pediatric to geriatric cases. I work regularly with law enforcement and the judicial system throughout many of these investigations. I have successfully changed the type of work I do to reflect my physical capabilities. I win, NMO!
The moral of the story?
Everyone has disabilities as well as traits that they excel at. Some nurses can’t start IV’s or clean up vomit, and some sweat the new electronic charting. My disability is a visible loss of physical function, but I have a gift for analyzing data and looking at the big picture. The point is, we all work together on our units and in our lives to combine our strengths to create the strongest, most competent and proficient teams we can. Despite having NMO, I have created a successful business that accentuates the positive attributes and skills I have. Being both a patient as well as a health care professional, I have a unique perspective when it comes to understanding and anticipating patient needs. I have turned my “disability” into a “super-ability”, reigning in my strengths and reinventing myself yet again to maintain a productive life.
“Life isn’t about finding yourself. Life is about creating yourself.” ~George Bernard Shaw
Jennifer Smith, RN, ALNC
For more information on NMO, please visit http://www.guthyjacksonfoundation.org/