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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