I’m in my final semester getting a master’s degree from Georgetown University. The last course in the program requires creation of a full, detailed communication plan for a real company. It’s a very serious project that involves a tremendous amount of research, analysis and writing … including the creation of surveys, charts, and graphics. As life would have it, multiple sclerosis has decided to mess with me more than usual this semester. There’s not much for MS to physically steal from me anymore, except the use of my left hand, with which I must do everything. When the MonSter flares up, my struggles to type become magnified to the point of impossibility.
Last summer a MS flare-up hit hard just as a class was beginning, and I felt I needed to withdraw for that summer session. Things were back to the usual level of physical difficulty in time for the Fall semester, and now this Spring semester should be my last in this program. Assuming, of course, I manage to get everything done and pass.
This semester, I had to do something I refused to do for the entirety of the master’s program; I informed the school of my disability. I notified the appropriate department at the University. I completed the requisite paperwork. My neurologist completed the requisite paperwork. I received the necessary accommodation for minor deadline extensions when necessary, for written assignments. The work quality and quantity standard still must be met, but if I need an extra couple of days to get it done because of my disability, the University will accommodate that.
So, why is it such a big deal to me to have formally revealed my MS struggle? Why do I find it so distressing?
Disabled doesn’t usually mean lacking intelligence
I absolutely hate to acknowledge that MS affects everything in my life. I know that seems ridiculous because it’s got me, quite literally, homebound.
But I want people to understand that I’m impacted by the medical condition, but I’m not stupid. And in some cases, I don’t want people to know about it at all, because I don’t want their opinion or perception of me negatively impacted by that knowledge. When it comes to grad school, the other students in the class are your peers, your colleagues. At Georgetown, they are all highly intelligent, highly competent, Type A individuals from around the country and around the world. Discussion and several types of interactions are part of the learning process in every class. The very last thing I need is for people to even subconsciously perceive me as less capable or less intelligent because of my disability. Yes, some disabilities affect mental capacity… but most do not.
Over the years, other people have shared with me that this is a source of frustration them too. We – the disabled – don’t want to be talked down to as if we’re mentally deficient. Being sick or disabled is not synonymous with being stupid. I’ve written about this a little bit before, about how when I’ve been out in a motorized chair, people will often completely ignore me or instead address whatever person they think I’m with. It’s beyond frustrating. It’s infuriating and insulting. It’s also very sad.
The oppressive power of disability
In my daily life, my disability is oppressive. I have great security cameras in my house that let me “see” all kinds of the stuff that needs to be done around the house and yard. I also have my kids Facetime me from different parts of the house so I can see the condition of different rooms. But I’m not able to do anything about the disorder and disarray.
It’s frustrating beyond belief to stare all day at a sink full of dishes, a floor that needs mopping, groceries that need to be put away, or something in the yard that needs cleaning, not be able to just handle it myself. Instead, I have to nag my kids or hire somebody to do everything. I hate to nag my kids about every single thing. I can’t afford to pay people to do all the things that seem to always need to be done. So I just end up having to deal with a rotating barrage of things that aren’t the way I want them to be.
It’s really easy to let these things like the attitudes of others and all that I cannot control, make me angry. In fact, there are moments when I’m honestly a combination of both angry and frustrated at life, at the ridiculous disease I did nothing to cause, at the obliviousness of others, at the disinterest of relatives who just don’t care, at the friends whose friendship couldn’t withstand the difficult circumstances life threw at me.
And then I have to take a deep breath and just figure out how let those moments go.
As human beings, I think we have this ingrained idea that life should somehow be fair. It’s not going to be a newsflash when I say that Life Isn’t Fair. Discrimination in all its forms and all its directions are proof of that. The concept of inequality regarding health issues and chronic illness is not often thought about, except perhaps, sometimes, when framed by other subjects such as racial or gender inequality.
Absolute fairness is an ideal, not usually reality
Over the years, I’ve had to let go of the idyllic concept of fairness and accept that life is just not fair. It’s easier said than done.
As difficult as it may be, you have to figure out a way to enjoy life despite the unfairness … and that includes the unfairness in life that a chronic illness brings along with it. You have to focus on what you can control, and not waste time and energy dwelling on what you have little or no power over.
For me, when I was going into this last semester of this program at Georgetown, I had to accept that MS has been making my life even more difficult and that I might potentially have more difficulties with typing. It was one of those issues I would have little or no power over. I focused on what I could control, which was having a plan in place in case I did run into that increased problem. It turned out to be a good thing I did so.
Some people have huge, “unfair” advantages in life based solely on the circumstances of their birth. Others have “unfair” results from being in the proverbial ‘right place at the right time’ or by having a genetically advantageous appearance or talent.
Isn’t the most important thing how we handle the advantages and disadvantages given us by our own life? After all, with incredibly rare exceptions, there is no advantage that guarantees happiness and no disadvantage that totally precludes it.
1 thought on “Struggling Against The Unfairness of Life With a Disability”
Denise, the last sentence really struck a chord. Yes, that’s where our power lies that others can’t take away. Your writings always are sobering, thoughtful and give great insights into subjects that few of us focus on by choice.
Thank you for sharing in such a clear and candid way your daily pain and your difficulties caused by your severe and relentless disability.