“Disability is a matter of perception. If you can do just one thing well, you're needed by someone.” ~Martina Navratilova
What do you do all day? A question that I have been asked many times by a variety of people. For those of you who don't know me, the question gets asked because I have not worked at a job for approximately three and a half years now due to a medical disability. I am forty-one years old. I have no children. In a society where most citizens work, stay home and raise children, do both, or are retired, I am an anomaly. And yes, I am very well aware of this fact.
I will be honest here. Up until recently, anytime this question was asked of me, I would get angry and defensive. The question gave me the impression that if I was not working a job outside of the home or raising kids in the home, what else was there to do in life? It made me feel that because I could not do either of these things due to circumstances way beyond my control, I was no longer useful. And that is why I would become defensive. Because for a while after I became disabled, I did feel useless. But that was MY issue, not the other person's issue. I was in my late thirties when I became disabled and I felt like my life was over.
But my life was far from over. I started over and built a different type of life for myself and made my days productive and fulfilling in ways I never thought possible before I got sick. I don't know what my future holds medically and maybe the routine of my days will change again someday. Although I am very realistic about the nature of my illness, I also hang on to the hope that maybe there is a chance that as insidiously as my work life was taken away from me, maybe someday it will eventually be returned to me.
Very recently, someone whom I respect and care about very much asked me "what do you do all day?" I had not been asked the question in quite a while and something in me clicked. Because it came from a person who I knew genuinely cared about me, I knew the question was just one of curiosity. It was at this point that I realized that maybe people just did not understand that there can be more to life than going to work every day or raising children. That someone like me can go through their days without being bored. Or even go through their days feeling fulfilled and with purpose. Maybe people just don't understand how much is involved on a day to day basis in managing a chronic illness.
And because of those thoughts, here we are. Instead of getting defensive when the question was presented to me again, it made me think of how I do spend my time and I would like to share that. Not because I feel like I need to justify how I spend my days or my life but because I hope that this blog entry may help bring awareness and understanding to those people who may be curious what it is like to be in my situation. And trust me, I am not alone in my situation.
First off, none of my days or weeks are typical. Sjogren's syndrome is a very unpredictable and sometimes progressive autoimmune illness. I can have a week or even a few months without any major issues and then suddenly be unable to function for days, weeks, or months. This is the part that keeps me out of work because you cannot hold down a job when you could be out sick several days a week or even several months at a time; not to mention that you actually have to work several hours at a time, in a row! Even when I am not having a major issue that requires immediate intervention or concern, I have daily issues that need to be dealt with that have become an accepted part of my life. An example of this is the dryness issue. Not necessarily something that would keep me from working a job but it is something that requires regular medical follow up care and daily attention.
OK, so what do I do all day? It greatly varies depending on how I feel. One of the biggest considerations is that I cannot do a full day of activity for several consecutive days due to pain and fatigue so I have to plan accordingly. Due to physical issues and limitations on some days, many activities can take me a lot longer to do, such as housekeeping. Before I got sick, I could have cleaned my current home top to bottom in about three hours, scrubbing floors and all. Now it can take me several days because I have to break the work up into sections. Keeping up the house, shopping, and cooking is my responsibility for the most part. I have made it my responsibility. I have a fiance (Chuck) who works about 55 hours a week and I do not. Although I do have a disability income, I feel that this is my way to contribute more to our household. Now of course this all goes out the window when my symptoms flare up but I do the best I can.
I sit out on an open field on a sunny day and watch my dog run free with elation. I have never had as much appreciation for the good moments in my day as I do now.
When I am physically able to, I get myself involved with worthy causes and other people. I volunteer with my church. I volunteer for whatever comes my way when I am able so that I can make a difference in this world, even if I am not getting paid for it. Sometimes I cannot do something like this for six months at a time and sometimes I can do something helpful several times in one week. I make it a point to never commit to anything on a scheduled ongoing basis because I have done that in the past and it just does not work out due to the unpredictability of my illness. I help out my friends with their children when needed. I also help out friends who are also facing their own health struggles.
Unless something very catastrophic is going on with my body, I try to get to the gym five to six days a week, even if it is just to go and float on a noodle in the pool or swim a few laps. Exercise has been a salvation for me. My hope is that as I take better care of my body, it will become stronger and this will help my illness.
I am constantly doing something to sustain and nurture my personal relationships. Because I have had to slow down, I have the distinct advantage of being able to give my relationships the time and attention that they deserve.
I have been blessed with several passions that I pursue during the week when many other people are at work and they are activities that are especially helpful when I am confined to the house or laid up in bed. Learning to cook and experiment with different recipes has been wonderful; especially since starting a gluten and dairy-free diet seven months ago. And I have also pursued my passion for writing. I truly believe that during the past several years writing has been my other salvation. I can easily spend several hours at a time writing for either my blog, a book I am working on, or for a variety of places that I send submissions to. It is through my writing that I have been able to connect with the world and help people in a way that I can no longer do as a nurse.
I spend time in a library or online learning something new.
Last, but of course not least, I have made a part-time job out of being a patient. This is by far my least favorite thing to do but quite necessary. As I was driving to Hartford last Thursday for an appointment, I did some rough calculations in my head. In the past seven days leading up to the appointment I was driving to, I had spent approximately seventeen hours in the previous week managing my illness. I know there have been weeks where maybe this was a bit less, although not by much and I know there have been weeks where this amount has been MUCH greater. This includes: driving to appointments, hanging out in waiting rooms, the actual appointments, blood work, phone calls to doctors, getting lab results, a support group, picking up prescriptions, calling in refills, calling insurance and disability companies, dealing with social security, taking medication, managing my dry eyes/mouth, saline rinses, setting up/cleaning humidifier, and preparing medications and such for travel.
Like I said, never bored.
I truly hope that this essay has shown that it is possible to have a life outside of a 9-5 job or raising a family. There is more than one way to define yourself as a person. I used to think that if I wasn't a nurse or if that I wasn't anyone's wife or mother, that I could not be of value to this world. Although there are great values to being all of those things, there is also great value in being many other things as well.
A dog mommy.
A human being.
As people with disabilities, we may not always be able to get out into the world every day to define ourselves. We have physical, mental, and emotional limitations that we need to work around on a daily basis. Most of our days may just be spent trying to meet our physical needs. But I also think that it is important that we allow ourselves, as much as possible, the opportunity to spend some of that time doing something in our day that allows us to define ourselves.
Not just our sick selves.
But as our true authentic selves.
Photo Courtesy of Chuck Myers http://myerscreativephotography.zenfolio.com/