The Elevator of Grief and Acceptance

When you’re first diagnosed with a chronic illness, there is, quite understandably, a period of adjustment. There are the physical changes that are now an undeniable part of your life. There are treatments, doctors’ appointments and medications. You are likely to be more tired (if not thoroughly exhausted); whether it is from the side effects of medication or from the inevitable toll that illness takes on your body as it tries to heal itself. But perhaps the hardest adjustment is the mental processing as you come to terms with these changes.

elevator

(photo/www.forms-surfaces.com)

ONE

Your first chronic illness hits you the hardest, but can also (down the road and after much introspection) be the easiest to bounce back from. Obviously the changes to your life are hard to take, but the biggest hit is to your identity. Going from being a healthy ‘normal’ person to a ‘sick’ person is a devastating blow. There is a lot of crying and “why me?” and feeling sorry for yourself. Accepting that this is your new normal can be very difficult to accept, especially as you work your way through the available treatments for your illness and they prove ineffective.

Ultimately though, you’re faced with two options: giving up or moving forward. Some do give up. Or resort to substance use. Or commit suicide. But for most, I think that the feeling that you can’t possibly go on fades a bit when you discover that you are going on every single day.

So while you may not recover physically, you recover mentally (if bruised and battered under the surface).

TWO

Your second chronic illness feels like a betrayal. The first one was a betrayal too, of course — bodies should be able to be trusted to do what they are designed for — but the second illness carries with it a meanness that catches you off-guard. You faced your first illness head on and survived it! You put in the work from grief to anger to acceptance! How is this possibly fair? 

Pushing through the grieving process the second time goes faster because you already know the drill. You know there’s no point in fighting it. There’s nothing to be gained by being a drama queen or asking for sympathy. You’ve already lost some friends with the first illness and so losing some this time around doesn’t feel like a surprise, just an inevitability. You accept treatment options, but without the same optimism you had with your first illness. Time has taught you that treatments for chronic illnesses are hit and miss. Publicly you are stoic. You cry in private.

You find your new normal and accept it, but there is an underlying bitterness that wasn’t there before.

THREE

With your third chronic illness you start to feel paranoid all of the time. Your body feels like the enemy. With all the drugs you’re on it’s hard to distinguish the difference between symptoms and side effects. You don’t expect treatments to work, but you go through the motions anyway, because you can’t quite bring yourself to give up. You have almost no friends now (and you’re not a very good friend to the ones you have), your marriage(s) have disintegrated and you’re worried you’re going to be fired because of missing so much work.

You feel out of control. Every time there is stress in your life, whether it’s a change in dinner plans or moving houses, you freak out and have a panic attack. You find being around people emotionally taxing.

You don’t feel safe. You wait for the other shoe to drop.

FOUR

When your fourth chronic illness is diagnosed and it’s a mental illness, you’re not surprised — it only confirms your shame. By now you’ve long since suspected that your physical deficiencies are your own fault. You know that it’s your personal shortcomings and the poor choices you’ve made that have initiated this reign of terror. Whether it’s God or the universe or karma or just some sort of subconscious internal justice, you deserve what’s coming to you. The battle lines have been drawn and the war is on. You feel sorry for yourself, but you’re inclined to lie down and take it.

It takes a long time to push through this one. But you keep not dying and life gives you reasons to care so you try again.

FIVE

Your fifth chronic illness feels strangely anti-climactic. By now you’ve become an expert at spotting the signs and knowing when something’s not right with your body. You know the diagnosis before it’s given. Hearing it is still upsetting, but in a strange sort of detached way, like it’s happening to someone else. You’re not sure if you’re just in denial or if maybe this is your new, more mature way of handling these things.

SIX

Fuck being mature. Fuck being reasonable. Your life is over. You’re not dead but you’re in a state of limbo where you’re trapped in your body and even your mind won’t even cooperate. You think a lot about suicide, but mostly about how mad you are that it’s not an option. You feel bitter and angry at everyone.

Then things ease up a bit and you think “Now’s my chance. I have to act quickly to get the things done that are important to me.” And by doing those things you start to have some hope. You think maybe you can just pretend that things are normal.

SEVEN

“This is how it is,” you think. “I am never going to escape this.” You try to look ahead to the future and all you see is your useless body, crumbling before you. You know that you are falling apart. Organs are going to continue to fail. You see a pain specialist who tells you that there is no solution and that you are going to have to learn to live with the pain, just like you have had to learn to live with all of the other unfair tricks that your body has played on you.

None of the illnesses you have come with cures, except for that one time you had cancer and they could just cut it out of you — you hold a certain fondness for that cancer for at least coming with a clear solution. Now your illnesses are causing other illnesses, like a cascade of evil dominoes spreading throughout your body. You hate your flesh and bones. When the pain is very bad you want to cut off the offending limbs; except the pain is so widespread you’d be left with nothing.

You try to remember the stages of grief and find your place back at acceptance, but acceptance isn’t the problem. You accept that this is reality. You accept that the eighth illness is coming (and for that matter nine, 10, 11…). You just don’t know how to be happy about that. Or at least during that. You don’t know how to not be bitter and angry all of the time, when everything is a struggle. You don’t know how not to guard yourself and close yourself off from the world. You don’t know how not to be scared.

It’s not that you haven’t learned how to do these things before — it’s just that with each successive illness, there isn’t much space left in your mind to do the good things. You’re so busy fending off each illness from all sides on a daily basis, that trying to also connect with people, and being trusting and relaxed feels impossible.

How do you relax in the middle of a war? How do you ignore the pain in your limbs and the screams in your ears (and new threats all around you) and try to be happy in spite of it?

/rk

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How Wasting Money Made Me Happier

Becoming permanently disabled in my 40s was emotionally stunting. After all, when you retire before 50, what exactly are you supposed to do with the rest of your life? We all imagine that when we finally retire we will travel around the world, or study, or sit in coffee shops maligning scruffy teenagers, or do any number of fun things by choice. But the reality is that when that day finally comes, our bodies and abilities may not be so cooperative. Or worse, like myself, you may find yourself forcefully retired before you even achieve any of the things you may have imagined were important to you.

reena coffee outsideThe other unexpected issue with early retirement (or even regular retirement) is, of course, money. Even if my body were able to accommodate my desire to travel to exotic destinations, a retirement pension isn’t much to live on (and a spotty work history due to years of chronic illness isn’t conducive to saving much money).

Faced with overwhelming feelings of plummeting self-esteem and general aimlessness, how do you go about ‘finding yourself’ again?

I suppose it’s not unlike any mid-life crisis — the halfway point in one’s life is difficult for anyone. The difference in my case was simply that so many options felt cut off from me due to physical and financial limitations. At a certain point, though, creating a new identity for myself became less a matter of choice and more a case of necessity. You either evolve or die. I picked evolve.

Things I Did That Were Free:

  1. Stopped saying “Nothing” when people asked me what I did for a living. For what it’s worth, that is a supremely crummy question. There are plenty of people who are not wage earners but still have jobs (stay-at-home parents being one example) and the question makes plenty of people super uncomfortable. In my case, though, I started answering with the other things I did in my life (like writing and acting) rather than de-valuing myself.
  2. Claim my disabled identity. Society really, really wants disabled people to feel like they are lesser-than because they cannot work and/or because they are perceived as broken. By deciding that my disabilities were just part of who I was and that it was society who was disabling me when it did not make basic accommodations, I regained much of the self esteem I had previously lost.

Things I Did That Wasted Money:

  1. Investing money in my writing. I have always written, but finding time to devote to it was always a challenge when I was in school, and later work. Since I have become permanently disabled, I have had bouts of writing, but I’ve sometimes found it difficult to follow through without a dedicated spot to write. While it was initially difficult to justify spending money (without any guaranteed money coming out of it in return) to finance a work space, I have definitely reaped the benefits of that decision — I have completed two more books (with several more on the go) and a multitude of essays. (Obviously I could not have done this without the privilege of a two-income household — I am very grateful for a partner who recognized that my emotional needs were a priority.)
  2. Giving change to street people. I have always been a somewhat private person when it comes to discussing charity. I don’t like to telegraph when I give money because I have it in my head that you shouldn’t expect praise for doing something that is simply a decent thing to do. But I acknowledge that there is value in leading by example. My feeling, when it comes to giving money to anyone who asks, is to give some if you can spare some, and not if you can’t. It’s that simple. I’m not that interested in hearing people’s convoluted reasons as to why they don’t give. If you don’t want to, don’t. But I’ve found that having some change in my pocket every day to give when people ask, and acknowledging them by saying “Have a nice day!” makes me feel pretty great. When you feel like you no longer have a purpose and that you cannot possibly make an impact, the act of helping someone else and connecting for a moment is an unbelievable boost to your self-esteem. I’m not talking God complex here — I’m talking about recognizing the connection we all have as human beings. Even when you can’t make a big impact, the small gestures still count.
  3. Activism. It can sometimes be difficult for disabled bodies to participate in social activism. Not all activist spaces are accessible, nor do we always have the energy to participate in marches or sit-ins. But some of us can make posters, or write online or a variety of other tasks. And it’s vital for disabled persons to be intersectional voices within the feminist and other movements.
  4. Volunteering. Again, accessibility can be a challenge, but there are many ways to volunteer and be part of organizations that are important to you (while being able to set time and job limits that fit within your abilities). Both activism and volunteering have helped me feel connected to the world and recognize the importance of my role in it.
  5. Buying lattes. Other lists will tell you that the first thing you need to do to improve your life is to stop drinking coffee. I think that is a fair assessment. But those same lists will likely point out that you need to allow yourself some form of reward or thing that brings you happiness. In my case, I don’t drink, I don’t smoke, I have to limit my sugar. Basically I have no vices. Buying the occasional latte (with no syrups or whipped cream or toppings) is what makes me happy. It also gives me a destination; a place to go that requires me to be social (if only for a few minutes) and it feels like a splurge. Maybe your splurge is buying a newspaper, or getting your nails done. The point is that sometimes we need an extra reason to get up in the morning or get out of the house. Wasted money, perhaps, but totally worth it.

If we accept the concept that we have to “spend money to make money,” it shouldn’t be so novel that we need to invest in ourselves to find our self-worth.

/rk

If a Crazy Person Falls in the Woods and No-One’s Around, Do They Make A Sound?

The other day in the car with a family member, we were having a discussion about how hard it is to access adequate healthcare (specifically pain treatment) when you are mentally ill.

“Is it?” they said.

“I’ve seen it happen countless times with other people I know, and it certainly has been for me,” I said.

They looked at me with confusion. “But you’re not mentally ill?”

I was gobsmacked.

I asked them what they meant, since they knew I was being treated for bipolar, and they said, “But you’re not crazy crazy.”

It’s a weird thing that family and friends do — even if they can bring themselves to acknowledge your diagnosis, they still don’t lump you in with (what they imagine to be) the raving lunatics who get locked away in mental wards. The thing is, not everyone who is mentally ill ‘looks’ like a raving lunatic. But some do. And some people can be both of those things. The point is, you do us a disservice by trying to candy-coat our disorders.

It’s not that I want to come down too harshly on the people that support us, the mentally ill. A huge number of people in our lives (possibly the majority) will turn around and walk away because they simply can’t handle being around someone who is mentally ill. Maybe because all they see is the stereotype of the maniac. So the last thing I want to do is alienate those who can see past their own fears and are game to stick it out.

But you also don’t get a free pass for your ‘altruism.’ I mean, when it comes down to it, caring for and about your family members or best friends should just be a normal thing that you do. The fact that they suffer from mental illness is certainly a challenge, but we all come with our own bits of baggage and as long as your mentally ill friend is a putting work into the friendship too, the fact that they are mentally ill shouldn’t be something they need to constantly apologize for.

If you are going to support someone who has mental illness, you need to acknowledge all of their parts. Glossing over their illness or pretending it’s not really there isn’t helping them.

show my crazyThis whole business of playing down people’s mental or physical disabilities seems to be something that is culturally ingrained. Parents play down illness when kids complain because they think they’re just doing it for attention. Doctors play down symptoms and refuse to apply labels because they are convinced that it will become a self-fulfilling prophecy and patients will develop somatic complaints or hypochondriasis (the nocebo effect). But this can have a devastating effect on people with genuine complaints who end up feeling like no one believes them, which in turn can lead to self-harm and avoiding much-needed medical attention.

When you care about someone, avoiding using labels or acknowledging their mental illness feels like you’re being kind. Certainly the last thing you want to do is to bring it up every time they behave erratically or use it as a weapon in arguments. You can’t blame everything that someone does on their illness. So it might seem like the kind thing is to avoid the label entirely, to prove that you see the person beyond the illness.

The problem with acting like their illness doesn’t count or that they are some special case is that it a) is not recognizing the whole person, b) suggests that you think that part of them is somehow unacceptable, c) makes it extra hard for them to get help or talk to you about their illness.

In terms of c), getting help can be in big ways or little ways. It can mean that they feel safe calling you when they need help getting to the hospital, or it can just mean that they feel safe telling you that they can’t meet up today because they feel extra anxious. It is really hard maintaining friendships when you have bipolar and anxiety, for example, for the simple fact that you end up having to cancel or reschedule plans based on your mood. If you are someone I feel I can trust I would simply explain what my issues are that day and reschedule. If you are someone I don’t trust with my mental illness, I just might not make plans at all, for fear of disappointing you or having to deal with uncomfortable questions.

There is a growing trend for public acceptance of mental illness (depression specifically), with lots of public campaigns to increase ‘awareness.’ I remain slightly skeptical about such campaigns, mostly because what I see is a lot of people sharing memes and pre-scripted platitudes with very little actual one-on-one support of people in need. It seems to me that we’ve traded the public erasure of mentally ill people for public awareness and private erasure. Now when people try to speak up about their mental illness, other people pipe up with “well I have depression too, so you’re not special.” It’s great that more people are coming forward with their own struggles, but the last thing that should be allowed to happen is for it to result in a watering down of the significance of mental illness. That more people are experiencing mental disturbances should not make it less significant. It should make it even more apparent that it is an important issue.

It is crucial that we do not create a further hierarchy or caste system of mental illness (depression, anxiety and bipolar are treated in a much more favourable way than schizophrenia or Tourette’s, for example), and playing down someone’s illness as if it is not ‘one of the bad ones’ or ‘doesn’t count,’ hurts not only them, but the mentally ill community at large.

/rk

New Digs, New Work

Last year was supremely difficult, creatively speaking. My ongoing health issues got even more complicated, with new symptoms requiring new medications, and overall I felt really defeated. It took a toll on me physically, and ended up triggering a lot of mental fallout as well. Writing under those circumstances was almost impossible.

As we go into the fall this year, though, I’m finally feeling a sense of renewed creative energy. Some of this is down to some changes in medications and learning how to deal with some of my new physical challenges, but the biggest change is that I’ve found a new writing space.

I have always wanted to write. But writing is work, and for most people, you have to treat it that way. You need to set aside time and space to commit to getting it done. One of the things we sacrificed in our move to downtown was our home office, which makes writing at home even more difficult. I used to do a good deal of my writing from bed (out of necessity sometimes), but there were inevitably distractions that would make it hard to concentrate.

It hasn’t helped that I have been struggling with depression since I officially retired and became fully disabled — depression due to my lack of direction and identity. I needed a reason to get up and get dressed in the morning. I also underestimated, when I moved in with my husband, how much I would miss having my own space — something that was mine alone.

mybywardofficedesk

My space: I’m surrounded by my books, my art and a cactus I haven’t killed yet. There are also windows and other nice creative people here.

I realized that what I needed to feel like a whole person again was to find a creative space, commit to finishing all the projects that had been in limbo, and hopefully find a way to re-establish a professional identity for myself.

It took a bit of searching to find a space that fit the bill (and the budget), but I’ve been really pleased with the amount of work I’ve gotten done so far (and it’s only been two weeks!).

What I’m working on / coming soon:

  • A book of poetry and essays on counter-culture subjects called: “I’Mmoral”. It is 98% complete and I hope to have it published and available for sale in the next month (the ebook version should be ready in the next few weeks, with the paperback version taking a bit longer due to proofs and distribution, etc.).
  • A compote cookbook! You can catch up on my recipes in progress at Compote is My Jam. I would like to finish this one and have it available for sale in time for Christmas.
  • A memoir focusing on my childhood stories of abuse and mental illness. I’m about half-way through writing this one, so my tentative goal is to have it complete by early 2016.
  • A re-imagined work of Oedipus Rex (fiction novel), hopefully to be completed by late 2016.
  • I will continue to blog here, at Cuckoo My Cuckoo, as well as on my transgender/androgynous lifestyle blog, That’s My AgendA.

I have sincerely appreciated the support of my blog readers and those who have purchased my existing books. If you might consider further support to help me subsidize the cost of my writing space, I would be super grateful!

It’s tough being a writer, period (most people don’t make enough from their writing to make ends meet), but being a disabled writer is even tougher. I really don’t have any other options in terms of working. I’d like to think, as well, that my writing adds something to the world and has value on it’s own.

I have set up a page over at Patreon, where supporters can sponsor me for as low as $1 a month. Rather than set it up with walled access to content (I believe content should be accessible — I want you to read my writing!), what I might do instead is set up a Thank You or Sponsors page here on my blog where I can put your name (or avatar name) showing that you are one of my awesome patrons.  Please consider sponsoring me here:

https://www.patreon.com/rkbelford

Thanks so much! Without readers, being a writer is pretty boring, so you’re the best part of my day!

/rk

You Probably Think This Memoir’s About You

Writing memoir doesn’t come without fallout of one kind or another. I write about myself and my feelings and experiences. And I get a lot of good feedback from objective sources for doing so. People relate to it and thank me for putting into words the things they’ve held back or buried over time. Because it’s easier, sometimes, recognizing yourself in someone else’s story when giving voice to your own can be so painful and feel so risky.

Why risky? Because when you write about your life, other people are featured in the story, and our instinct is to keep private things private.

Well, let’s not be disingenuous here — for those of us among the emotionally wounded, the PTSD sufferers, the mentally ill — privacy has usually been drilled into us from a young age. It’s that stifling environment, where expressions of discord or discussions of fears or ‘working on relationships’, were either not the status quo or were entirely verboten that helped to pack up all that emotional baggage and lock it away.

IMG_0553Memoir writing is cathartic. I mean, that’s the appeal, right? That’s what drives the writer to write; to un-cork the bottle and spill out its contents, while hopefully painting them with a careful brush into something that inspires or resonates with the audience.

But it takes courage to air your dirty laundry out for the world to see. Not so much because of the fear of letting people inside, or because you open yourself up to judgement — strangers knowing your business is actually less intimidating than you might expect — but because the ghosts from your past often aren’t content to stay ghosts.

“Men’s memoirs are about answers; women’s memoirs are about questions. Most male authors want to look good in their memoirs and have a place in posterity, while most women know that posterity is what happens when you no longer care. Women want to connect with others here and now; they couldn’t care less about legacy!” — Isabel Allende

Memoir writing tends to be (for me) a lot about emotional processing. Certainly at its root, a memoir needs to contain an event or series of events, whether unique or uniquely told, but it’s the emotional connection that differentiates memoir from autobiography. Which is not to say that memoirs aren’t based in fact; but those facts are tempered by perspective. Does this make the author an unreliable narrator? Maybe. But I would argue that reliability of the facts isn’t the most important goal: honesty of intent is.

My mantras for memoir writing are as follows:

  1. Make it YOUR story.
  2. Be honest.
  3. Be fair.

That’s it. As for as making it your story, it’s crucial to remember that the other players are really there to serve a purpose: as tools to tell your story. As such, the basis for their inclusion should always be as a means to move the story forward and/or to allow the reader to learn more about you.

“I think most memoirs, though they purport to be about this particular time or this person you met, are really about the effect that person or time had on you.” — Rosemary Mahoney

That’s not to say they don’t have value as human beings! Of course they do; but we’re talking about story-writing here, and these people probably didn’t consent or want to be written about. But I believe fundamentally that as long as I stick to the rules/mantras, I have a right to re-tell my life. Because who else has a right to tell my story if not me?

Honesty is one of those things you will undoubtedly be challenged on. In disseminating life events for my readers I ultimately let them decide for themselves: When I have objective facts or markers, I say so; when I am making assumptions or interpretations, I say so; and I temper everything with reminders that my recollections are subjective at best. That’s the nature of the beast. My reality may not be the reality, but it is mine. About that there is no deception.

As for fairness, the things above are part of that, but it’s also about representing all the players in a balanced way. I try to keep #1 in mind in the retelling of every interaction. I keep it about me. And I don’t mean that in an egotistical way, but rather that the goal isn’t to tell anyone else’s truth — it’s about telling your own. And doing that fairly means a) being honest about what you know, b) being truthful about what actually happened, c) being honest about what you don’t know, d) being honest about perspective and how that influences your recollection, and e) acknowledging that the people around you are human and are going through their own shit.

That last one is pretty important. If you feel it’s necessary to represent someone else on paper in order to tell your story, you have a responsibility to treat them like a multi-faceted, fallible human being. You need to cut them some slack. Even if they hurt you or did a crummy thing, you need to avoid crucifying them. For one thing, it’s pretty doubtful that anyone is 100% evil.  Or even evil at all. I’m damaged and I’ve hurt people because of that. Ergo the people who’ve hurt me were probably hurt themselves.

If you’re going to tell about the bad things a person did to you, you have to also tell about the good things. If you don’t, you’re a shitty person; because that’s not fair. You’re also a shitty writer; because this isn’t a fairy tale where  you’re the hero and everyone else is the bad guy. Which is why, to be fair, you need to lay out your demons as well. Because what is the point of writing memoir over fiction if you’re not going to at least try to be honest?

Unfortunately, whether you’re ethical about it or not, people probably aren’t going to thank you for writing about them. So why do it? Why put yourself out there and open yourself up to criticism or recrimination from the people from your past?

For me, there are a few different motivations. Firstly I should point out that writing about my relationships was a last resort. When you try for years to mend fences (or at least try to figure out why they’re broken) and you continually run up against a brick wall, it’s not very satisfying emotionally. Those feelings need to go somewhere. I needed resolution and I wasn’t getting any. Also, it was about breaking unhealthy patterns: I grew up in a family where a) we didn’t talk about our emotions and b) because I was mentally ill, a lot of the conflict was blamed on my mental instability. Those two in combination do a number on your self-esteem.

Memoir isn’t the only writing I’ve done. I’ve written a novel and a book of poetry, and there are other books in progress. But it’s the stories of my past that keep forcing their way to the surface. I can’t move on until those are dealt with and filed away.

Which explains my need to write and to process, but why make things public?

Well… I’m a writer, not a diarist. It’s what I do and has always felt essential to my existence (emo but also true), and a crucial part of being a writer is the interaction between writer and reader. I also really truly believe that I have a responsibility to speak up and out because not everyone feels similarly able. For those who for whatever reason, be it personal or professional, can’t face the risk of exposing themselves, it’s important that there are beacons of light that shine in the darkness to let them know that they’re not alone. When you’ve suffered abuse or neglect, when you’ve suffered depression or loneliness, it helps to know that you’re not alone.

Sharing stories has long been society’s collective coping mechanism. We feel an inherent need to connect and understand. Sharing experiences helps us heal emotionally, and when we read about the experiences of others, it gives us insight into our own.

So I’ll keep writing about my life, even if it risks alienating the people from my past. Because the reality is that those people removed themselves from my life long before I started writing, and holding up the writing as the reason is dishonest and re-writing history.

Re-writing history isn’t what I intend to do. I want to write about it, attempt to understand it, and then tuck it away where it can’t hurt me anymore.

/rk

Insane, Got No Brain

Insanity is inconvenient.

There is this impression which ‘normal’ people have that insanity is somehow a result of personal deficiency.  As if somehow having your shit together can prevent it from sneaking up on you.  That having money or friends or a good family will offer some sort of protective barrier.

It certainly seems that way, right?  Because the really crazy people you know are separated from family.  They’re destitute.  They’re those lunatics on the street, mumbling under their breath and yelling at no-one and everyone.

It doesn’t occur to them that many of ‘those people’ might have had all of those things.  It’s simply that insanity pushes those things away.  It pushes them away and takes you away and discards you.

It is really hard to form connections with people when you are mentally ill.  Doing that requires opening up.  Not just opening up and revealing who you are inside (which in itself is terrifying), but opening yourself to damage from the outside.  Because other people are dangerous, even if that isn’t their intention.  When you are mentally ill, your wrongbrain tries to steer how those interactions are going to go.  It sabotages.  It distracts.  It exhausts.

~~~~~~~~~~

About a year ago I started feeling things that weren’t there.  Burning sensations.  Popping sensations.  Vibrations, numbness and even feeling moisture on my leg when I could clearly see there wasn’t anything there.

I was diagnosed with peripheral neuropathy, caused by my diabetes.  Unfortunate, but normal.  Normal to feel things that aren’t there.

~~~~~~~~~~

I’ve been having auditory hallucinations.  This isn’t new.  I’ve had them to some degree on-and-off since I was a child and it’s probably why I was originally thought to have ADD.  I could sit for hours, staring off into space.  I remember performing really well on tests (at the gifted level), but struggling to focus while I pushed the sounds and images out of my head.

Hearing sounds that aren’t there means you’re crazy.  Not normal to hear things that aren’t there.

~~~~~~~~~~~

Wshhhhh shhhhhhhh whisper shhhhh wuhhhhh shhhhh

Why? Shhhhh whisper why shhhh no no oh shhhh

Sounds filling my head in a quiet room is not quite so bad.  But it wears on me.

Stick me in a room with other people, all competing to be heard, and the sounds in my head do battle.  I can’t focus.  I can’t keep track of my spot in the conversation.  I can’t sing in the choir when there are two voices; the one that comes of my mouth and the one I hear in my ears.  It’s wrong.  All wrong.

I know that I can’t trust myself to be with people when I start to see them as antagonists.  I feel the stares.  I hear whispers and can’t tell if they are from inside my head or behind my back.  People’s looks feel aggressive.  Their words feel dismissive.  I don’t want to be around friends because I don’t want my brain to tell me lies about them.  It’s easier to hide where the voices can lie, but at least my eyes don’t confirm my suspicions.

But I can’t hide completely.  What do you do when your lover reaches to kiss your hand and the nerves endings in your skin send your brain a message of burning and your brain answers back with a mental image of melting, sloughing skin?

~~~~~~~~~~~

My body is sending my brain the wrong signals.  My brain is sending my body the wrong signals.  Those two things should be the same and reasonable.  But I don’t kid myself that they are.

On a drive to the doctor’s with my mother, we make casual conversation.  “Do you miss your car?” she says.

“Once the neuropathy and the muscle spasms got bad I didn’t feel it was safe to drive.”

“Ah.” she says. “Good point.”

“I also kept finding myself thinking about driving into oncoming traffic.  I couldn’t get it out of my head.”

She says nothing and just presses her lips tightly together and keeps driving.

~~~~~~~~~~~

Insanity says “fuck your schedule”.

Insanity says “you’ll never achieve anything”.

Insanity says “I decide”.

/rk

My Father Died

My brother and sister scattered my father’s ashes over the water in Port Dalhousie, Ontario. I was not invited. I would not even have known if I hadn’t happened across a single random Facebook post that made reference to the occasion.

It was hardly a surprise, and I acknowledge that their choice to exclude me was the direct result of a situation of my own making.

If I had the opportunity to go back and change how I handled my father’s passing, I don’t know that I would. Even though I was confronted repeatedly with threats of “you’ll regret this” by other family members, I cannot see how I could have done anything differently and still maintained my sanity. (Such that it is.) The word compromise was thrown around a lot. But it’s funny how often, when people are asking you to compromise, what they mean is that they want you to change while the other person remains immoveable.

971298_10152271549526830_1794482042_nI don’t remember who told me he had cancer, that last time. I honestly don’t recall if it was my father himself, or maybe the news came via my sister or my mother. For some reason that moment was deemed inconsequential by my mental Rolodex and not filed away. I do remember the first time he lied and told us he had cancer (at my 16th birthday) very clearly. I remember crying. I remember mourning. I remember finding out that the whole thing was a fabrication, and my slow-growing resentment. But I don’t remember anything about finding out that he had cancer for real. Somehow the details were inconsequential.

To say that I felt nothing upon learning of his terminal illness would not be accurate. I just didn’t feel the right things. I didn’t feel what others needed me to feel. 

I did not rush to his side.

In the years leading up to this point, I had already become estranged from my father. I had tried, for a long while, to mend fences. I had tried to understand the rift between us. I had tried to have real conversations with him, where hopefully we could try to find some kindness between us or something real.

A few years before he died, he invited my son and I on a trip to Nassau and I accepted, uneasy to allow him to pay our way (because these sorts of gifts always had strings), but anxious to make one last try at connecting. I also hoped it would give him a chance to get to know and understand his autistic grandson a bit better.

It was a disaster. My father drank and chain-smoked and dominated all conversation. Any attempts at communication or interjection on my part were mocked or denigrated. He wanted an audience for his superficial boasting and someone to laugh at his jokes. He wasn’t capable of listening, nor was he interested in a heart-to-heart. The majority of his interaction with my son was in anger or frustration; which made the both of them sullen. I spent most of the time with a migraine from the cigarette smoke, and took to drinking and sleeping and escaping to the beach with my son when I could.

When we returned, my father told everyone we had a lovely time.

When he made a similar offer a year later (with minimal interaction in the interim), I declined and I think it hurt him deeply. I told him he didn’t have to buy us trips and I’d rather he just talk to me like a normal human being. He hung up. A month later he had throat cancer.

Chemotherapy for the throat cancer gave him leukemia. There wasn’t any coming back from that.

My stepmother, sister and brother spent a lot of time with him in the hospital, which was easier for them in terms of proximity, but physical distance wasn’t the only thing that kept me away.

My father had his difficult moments with most people, but he had genuine love for the three of them. If he had love for me (and I like to think he did), he was never able to express it in any way that did not hurt me. Somehow by my brother moving to Toronto (i.e. close to him) and me staying in Ottawa (i.e. close to my mother), we had unwittingly identified our allegiances. He treated me in a similar fashion as he did her — but of course since their divorce she was rarely in his presence, and I took the brunt of it.

My sister pleaded with me to go see him. This was a variation on the same pleas she had expressed practically since she could speak. It was almost the entirety of our long-distance relationship. “Please talk to dad.” “Please come see dad.” “Why can’t you do this for me?” “I don’t care if it hurts you — WHY CAN’T YOU DO IT FOR ME?”

It could be argued that a 17-year age gap and growing up in separate cities is why my sister and I have never properly bonded. But the truth is, I don’t know her. She doesn’t know me. Any attempt I have made to get to know her has been thwarted by her obsession with putting our father between us. And so I tried. For a long time I tried to get along with him. For her. For me. Even for him. But in the end I couldn’t handle the repeated cruelty. Not for anyone.

He broke my heart.

Not just once, but on a regular basis.

And I knew if I let him keep doing it, there would be nothing left of me. I couldn’t live my life, or be a parent, and operate in a constant defensive position.

My brother called and asked me when I was coming. I cried. Not for my father, but for my brother, who barely talks to me, and who I wanted so desperately to have a relationship with. I wanted to do this for him, too. But I couldn’t.

My mother didn’t ask me to go. But she said she would go with me, if I went.

I went to see him.

It was a very brief visit. I barely spoke to him. I didn’t want to say the wrong thing, because I didn’t want him to have any ammunition against me.

He yelled at my son for making too much noise.

We said goodbye tersely and left. It was the last time I ever saw him.

My brother and sister continued to beg me to come back and see him again, but I knew that was the end for me. I was done.

I wasn’t afraid of seeing him die. I wanted to be able to be what he needed, if he needed me to sit there and tell him I loved him.

But I was afraid he would see it was a lie. And I didn’t want to hurt him.

I hadn’t stopped loving him all at once. It started when he lied about dying the first time and I mourned him and hardened myself to his impending (or so I thought) death. And then, with each repeated hurt, I withdrew a little more, until there was nothing left. I felt nothing for the real him.

I mourned, but it was for the father and relationship I wished I’d had.

And I knew that I couldn’t bear a single cut more. If the last words he ever spoke to me were cruel, I couldn’t bear it. It would tip me over the edge. I couldn’t be haunted by the memory of that moment for the rest of my life.

And so he died. And I felt relief.

Relief that this burden of a man, who had haunted every minute of my consciousness and inspired all my feelings of inadequacy and self-loathing, was no longer my responsibility. I no longer had to waste all my energy doing mental gymnastics, trying to figure out what I did wrong and why I could never please him or earn his respect.

I was free.

Because a dead father is easier to explain to people than an estranged father.

Because him being dead means I don’t have to keep trying and failing to fix our relationship.

I finally discovered I could start living for myself, and not just in reaction to him or his actions. I was grateful to find that I could write, without feeling like it would threaten his fragile journalist’s ego or earn his mockery.

I haven’t ever stopped thinking about him. But I’ve started to heal. It’s something I tried to do for such a long time while he was alive, but his continued existence seemed to necessarily dictate his participation in that process. And because he was not forthcoming, I made no progress.

But now that he’s gone, there is only me left to heal our relationship.

I heal.

In bits and pieces, I heal. I still don’t understand why he did all the things that he did, but I’m not angry any more. Without him here to twist the knife, it is easier to feel compassion for him and accept that he can’t change any of it now. He can’t fix it, but he also can’t hurt me anymore. There is comfort in that.

I forgive him.

/rk