Fabulous for those who own it, bad for those who don’t.
I am one of those people who quickly feels guilty about having to cancel hospital or advocacy appointments when I’m too unwell to leave the house. It might be innate, or it might just be one of those famous Irish guilt-trip things that are attached to my dwindling Belgian roots. Either way, I often “suffer” from feeling “over-responsible” when I fail to do something.
After watching Dole Life, a program on Irish television about the difficulties young adults face trying to find and keep a job, the topic of responsibility and maturity was on everybody’s lips the following days and weeks. Shauna (Jake) had just started a new job, yet in the first week of her employment, she arrived late for four consecutive days. She said coming out as transgender was the reason for being late, but her reasoning didn’t help her cause, and it might, in fact, have turned more people against her than she intended to.
On the other hand, chronically ill people like myself often wonder why healthy people sometimes lack personal drive, have or feel no accountability and have an unwillingness to be active either professionally or in the community. Despite jobs being available, it’s almost as if they willingly choose losing self-respect when they prefer benefits as a lifestyle choice. And that baffles me.
And that baffles me.
On a professional level, would I not do everything within my power to be able and allowed to work again? For most of my professional life, I got up at 5.30am every weekday, commuted 3h or 4h a day and arrived home at 7 pm. And yet, I loved my job.
On a physical level, would I not murder to be healthy again, just to enjoy complete freedom from often intense chronic pain, utter fatigue, radical rest and 28 pills a day?
Have I not cried and been angry because I was denied the chance to keep on making something worthwhile of my life and career?
Said that I wished healthy, lazy people should physically feel what it is like being denied the chance of contributing to society?
Loving yourself, knowing you’re a fighter come what may and being accepted for who and what you are, is what makes you, you. In my view, we owe it to ourselves to take a stand, prove our worth, to live in the moment and share our world with others. Silly, perhaps. Altruistic, yes.
After recently running into an old friend, we ended up having a few coffees while digging up memories about how much we enjoyed our time in the office as well as the responsibilities and promotions we grew into. That we knew that to get recognition, we had to work hard.
On several occasions, we had both been sent home by our respective managers because we were too unwell to be at work. I still hear my manager shout, “I can’t do anything with you here if you are ill! Go home! Stay in bed until you’re better!” That was hard to hear, but where I felt I had been a responsible adult by going to the office, it had been an irresponsible action as I would slow down the performance of my team, and halt a possible MS-relapse-recovery.
No matter how difficult it was as the years dragged on, I eventually had to take responsibility for the physical decline that was visibly present to everyone who knew me. Trying not to show weakness when I was meant to guide a team into performing better, often felt like an unimaginable, very personal war: my body versus my job.
There were added worries each day I was in the office, as I prayed I would have enough energy left to do the 15-minute walk from the train station to home at night. Too many times I stood in front of the staircase after coming back, unable to muster the last bit of energy to walk up to my bedroom and go straight to bed.
Eventually, I felt I had become a liability to my employer and colleagues for not being the professional person anymore they once relied on. As a rational and accountable adult, you try to do the best you can; after all, we have all been at work when we were supposed to sweat it out under the duvet. The time of returning to work, however, had ended for good.
You see, taking responsibility has a domino effect once you accept its challenge. Self-actualisation is needed, and to be able to see its benefits and to survive, you need the drive to improve yourself and as a result, have a positive effect on those around us.
Once you see yourself progress, loving yourself becomes easier, which in turn makes it easier for others to respect and accept you. The vicious circle is complete when following this, you take on more responsibility, widening the circle of your influence on the world around you.
Responsibility is also this: being proactive within the boundaries of your life. Take charge of what is going on, work on improving yourself and stop blaming others for your malcontent. Being a “woe is me” person every day of every year gets you nowhere at all. Know you need change, and that it will benefit you in the end. Like Tao Te Ching once said, “A journey of a thousand miles begins with a single step.” If I have learned anything valuable in my past 10 MS-filled years, it is just that.
As I am writing this, I am reminded of someone my coffee-drinking friend and I once knew many years ago, and who seemed to have hypochondria down to a tee. Many times we wanted to tell her to take a totally stripped-down, god-honest look at herself and tell her to stop hiding behind those diagnoses she always wanted, made up by good, old Doctor Google or Psychiatrist Yahoo!
During our time working together, I remained diplomatic about her way of being, as I had only been diagnosed with MS. In a selfish way, I didn’t want to step into an open minefield of self-induced psycho-babble trying to help her, knowing that her negativity would drag me down. After all, my illness MS was and still is all too real while her mind-spinning was self-inflicted and imagined. There were times however where I wanted to shake her out of it, and shout, “Look, will you for goodness sake just give over! You are healthy; there is nothing wrong with you! Be happy that you’re OK, stop idolising being ill!”
Being a practical, solution-seeking person, if I met her today under similar conditions, I would tell her in no uncertain terms that being ill is not the fancy, wild house party she believes it is/was. Like I wrote in my ‘Thanksgiving!’ piece of November 25th, “When physical restraints curb your potential, you realise that you want so more from your life, and out of your reality. Life is moving forward outside your medically induced world, and you feel annoyed when healthy people don’t realise the worth of their bodies, their unused potential.
It merely reminds you that being chronically ill sucks. It’s energy being depleted in all the wrong places. There is no uptake to being ill. There is no room for manoeuvring when you’re faced with an illness that will -quite literally- be there until you draw your last breath. Do take it from someone who’s already stared death in the face because of it; it is so not all it’s cracked up to be, honey.”
Let me just make it easy to understand. No, there is no end to life with a chronic illness. Chronic is chronic, and that is simply the unfortunate truth. There will be more doctors, more medicines, more hospital waiting rooms and more shattered hopes for a cure within my lifetime. Nobody will be able to take that illness away, or replace that hope for reality.
Friends with MS will decline faster than me (or vice versa), some will perhaps pass away because of medical complications, or some may never walk again. I might not be able to hold a pen again next week or some within my group of friends will lose the ability to speak.
What I see in that group is life played out in a dignified way: they take responsibility for their health, their treatment options, their relationships, their pastimes and much more. They assume responsibility for things their family doesn’t have the guts for, or they decide to waive medical treatment against family’s wishes.
What they do -what we do- is look at ourselves in the most honest of ways in a blackened mirror or under bright lights. They lift me up and by god I hope that I can give them the same gift.
Its power is limitless. Use it, so.
Willeke is a disability awareness advocate and originator of Ireland, Multiple Sclerosis & Me. She actively writes for other people’s blogs as well as for the MS Society of Ireland blog.
Connect with her on Twitter and Facebook. Also check her new blog Kick-Ass Ireland.
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