Top 3 Things About Being Single and Chronically Ill

The ringing of my cell phone cut through the mumbled cacophony of rush hour traffic as I sat huddled against the window of a city bus.  Slightly embarrassed by the volume of it, I quickly closed the book I was reading and fumbled with the zippered, buzzing compartment of my backpack.  A text message from one of my keepers lit up the tiny screen:

“Have you noticed how many people are getting married or having babies on facebook??”

Her text made me think:  I’m not married.  I don’t have babies. And surprisingly (or not surprisingly), I don’t mind at all.  Actually, being single is helping me understand and learn things that I hope will make me a better partner and perhaps, a better mother in future.  It’s also preparing me for the possibility of a different kind of future that doesn’t include children or a partner.  I’m not saying that to be negative or put myself down, I say it because it’s always a possibility and my mind and heart needs to be prepared and open to whatever lies ahead.

I have read that the divorce rate among couples where one person is chronically ill is 75%.  It’s a dismal statistic, but I wonder how many of those individuals were diagnosed during or before their marriage.  Would the stat be the same if the chronically ill individual came into the relationship during a stage of acceptance versus the shock and denial of initial diagnosis?  Would the stat decrease if that person had the time to understand their disease as an individual versus as part of a couple?  Every person’s story is different and there are many couples out there who become closer and stronger while battling and living through illness.  As a woman who has, in the not so distant past, connected being in a relationship with her own self-worth, I have now found myself on a journey to make peace with my chronic illness and this solo chapter of my life story.

Here are the top three things I have learned so far about being single and chronically ill:

3.  You have to do it yourself: There was a time when I never had to wash my car, or walk from a distant parking spot in the cold, take out the garbage, or carry heavy grocery bags up the stairs to my apartment.  I never had to open a tight lidded jar or get myself a glass of water when I was feeling sick.  There’s a certain amount of pride that comes with finally doing those things.  Bit by bit you restore your faith in your abilities and when you can’t do those things, it helps you understand what you need from others.  If you need help, that’s perfectly fine, but it will be an “informed ask” instead of one that stems from frustration and fatigue from dealing with ongoing physical pain.  It’s about celebrating the little things that you CAN DO instead of focusing on what you can’t.

2.  It makes you plan ahead: It helps you understand in the most visceral sense that you must plan and be prepared, financial or otherwise, for a future with you and only you.  This doesn’t mean that you refuse love and support of your loved ones, it means that at the end of the day, you can’t rely on it.  It makes you think about what you need to implement to be self-sufficient in the future if you ever had to be and it makes you even more grateful for the support that you do have.

1.  You invest in yourself: There’s no one to worry about except you.  There’s more time and energy to reflect on what you really want, not in the future when you’re with what’s-his-name, but what you want right now, what kind of person you want to be and what you want to contribute to this world.  It’s a chance to redefine what being alone means to you and what you want to get out of it.  Not many people’s life stories allow for this kind of alone time and I know I am lucky.

I’m still learning and coping with bouts of loneliness, as every human being does, but I know that life is an utterly strange string of unexpected experiences, so I’m just accepting that this is part of the ride.  Let the baby-makers and brides proclaim themselves on facebook!  Yes, it is their “time,” but I think I’ll just sit here on my bus and take my time getting there.

Bathtubs, Bat Signals & Single-dom (Oh My!)

At chemo on Thursday, I sat beside someone who was diagnosed with Rheumatoid Arthritis when she was twenty years old, the very same age I was when I donned my “Lupus Face.”  At one point, this woman to my left, sitting by her “drip, drip, drip” of the RA miracle drug Remicade, asked me if I was married.  She must have been in her 50’s, her entire head of hair pulled back in a silvery ponytail, her oversized sunglasses slipping every so often down her nose, which she curiously kept on for the whole 4 hours of her IV treatment.  I smiled at her question and shook my head “no.”  I was not surprised in the least when she smiled back, shook her head sadly and said, “yes, relationships are hard.”  

She continued on to describe one night when she approached her now ex-husband and asked if he would help her out of the bath if she chose to take one that evening.  He said yes and so, like many RA and Lupus sufferers before her, she ran herself a hot, soothing bath for her achy body.  When it came time for her to get out of the tub, she called out for her husband.  There was no answer.  She called out again… nothing.  She had to wait three full days for him to return.  Among other medications, she was on steroids and her body went into steroidal shock and withdrawal.  When he came back he said simply, “I was hoping that you would die.”

There is so much more to this story that I didn’t hear and so I choose not to put too much meaning into that dramatic last line.  It just made me sad.  I am sure they were very happy once.  She said he married her when she was already sick, but “I guess you never really know until you’re really in it.”  

My eyes have been red lately – that’s a Lupus thing…you know, inflammation of the eye vessels.  I remember having a particular bad bout of the “wolf eye” when I traveled to Toronto for a conference a few years ago – it took gargantuan inner strength to simply look at people!  My inner voice was working overtime – “surely they think I have a grody case of infectious pink-eye (not at all conducive to any kind of social networking) or I had clearly just been in my hotel room getting high!”  Oh, the drama.  The bat signal (butterfly rash) is out too, I’ve noticed.  Started showing up last week.  I have thanked my rosy moon cheeks for the warning and I’ve made sure I’m extra tuned into the sights and sounds of my body, especially now that I am weaning off “Evil P.”  I’m getting headaches now, nothing major, but enough to send me back to bed for hours.  I feel Chester, my cheeky, chest inflammation monkey, poking at me lately.  Breathing is fine, but every so often he’ll give me zings of pain to carry around in my breasts, just to remind me that he’s still there.  I’m cool with it.  I, of course, understand the need to get a little attention now and then.  

I’m still feeling the affects of chemo today… had to say no to several lovely invitations to venture out into world that exists beyond my fuzzy blanket and the whirring buzz of my little portable heater.  That’s what happens when the bat signal lights up the sky – instead of going out to “save the day,” I know I must stay in.  Obviously, I don’t have a very good track record for doing this, but I am working hard to be a better Superhero.  Don’t they say that the best way to save the world is to save yourself?  Well, most in the city are watching the Pacquio fight, including my parents, so saving the world involves an empty house and I’m thinking, perhaps some popcorn?  Watching the French Film, Amelie, is certainly on the menu – it’s the perfect movie to watch when you hear a story like the one I heard at chemo.  I suppose it’s expected that I would go home, eyes wide open with fear that, oh my god, that could be me, in that metaphorical tub, waiting, waiting, waiting, for someone who will never come.  A previous me would have definitely done that.  Instead, I choose the me that would buy one of those remote control bathtubs that Ed McMahon promoted, so that I wouldn’t have to ask anyone to help me out of the tub at all!  So to all you lonely Lupies (and general humanoids) – Take showers, not baths!  Eat popcorn, watch Amelie (English subtitles, not dubbed, please and thank you)!  Rest, sleep, then meet one of your favourite keepers tomorrow morning for pancakes!  That’s my plan… what’s yours?