May 22: Illness Purgatory

There is a place that no one talks about, many don’t even know of its existence. It’s a complex place with no rules, very individualized, but with many commonalities amongst the people who are there. It is a place that millions of people have visited, and some people reside there permanently. It is not an uncommon place for older people to visit, although it is younger people who seem to be caught in it for longer periods of time, some never leaving. It is not a place where anyone would chose to go, but can be an advancement of sorts.

You have never heard of this place for a very good reason: I created the phrase myself, feeling there needed to be an acknowledgement of the stage between ‘sick/dying’ and ‘healed’. And while it can apply to different phases or times in sickness, I’m using it now specifically for the recovery phase. And this has more to do with after a surgery or procedure rather than an on-going medical issue, which have separate debilitating problems in their own rights.

Recovering from a serious or sudden illness can be surprisingly tricky. You aren’t really sick any more, you aren’t dealing with the hell of dying, the horror of the surgery or treatment that stops you from dying. But you aren’t back to being fully recovered, either. You aren’t happy, the way everyone says you should be. You aren’t singing and dancing and grateful to be alive. You’re someplace in between hell and happy—you’re in purgatory; that mystical, foggy, unknown place in between what are supposedly two definite realms. Illness Purgatory—I’ve upgraded it to worthy of capitalization as a specific locale.

It’s a psychological place, a mindset, a place no one told you about. It’s difficult to explain to your friends and family, much less to your doctors. “You’re fine!” they have announced. Your family is thrilled, grateful to have you here with them instead of your being dead. And you are supposed to be as ecstatic as they are—you’re alive! You have a new lease on life! You just got an extension! You should be happy and wonderful and terrific!

People think as soon as you are ‘fixed’ that you immediately return to ‘normal’, with the addition of extreme gratefulness for having been spared. The sun should be brighter, the grass greener, the flowers prettier, your mood euphoric. But often that isn’t the case, and it leaves others frustrated and even a little angry at you. What’s wrong with you? Why aren’t you happier? You don’t have anything to worry about now—you’re all better. As a matter of fact, you’re better than before, because the disease inside of you has been cured.

If your illness was such that you are improved, people’s reactions are predictable: you’re fine, be happy and get on with your life. Nothing bad happened to you, just take the pills that will keep you healthy and everything is fine. Logically, this is true.

There is an expectation of your mood acting like a faucet: the terror you felt at being ill being turned off, and then happy being turned on because you are healed. Instantly going from one to the other, off to on. There is no allowance for an adjustment phase, no understanding that you are struggling to go from hell to happy, but you haven’t made it there yet. You tell yourself that you shouldn’t be scared or depressed. You know what they are saying is true—nothing happened, everything is fine. You should be happy, relaxed, grateful for your existence. And yet, you aren’t. Why not?

Because you could have died. Because there is the sudden realization that there was something inside your body trying to kill you that you didn’t even know about. Because you are wondering how to recognize it next time. Because every little ache, every little pain, every twitch now has new significance. No longer do you dismiss these things, instead agonizing over what each ache, pain or twitch means. Is it your illness coming back? Does it mean something? Are you going downhill again? Or is it something else, a different something that is again trying to kill you? You keep coming back to the recognition that you could have died, and not having done so isn’t necessarily as reassuring as one could wish. Illness Purgatory.

So, how do you get released from here? How do you get out of this murky unpleasant, ill-defined place? Catholic purgatory, as I understand it, is overcome by prayers, lighting candles and the grace of God. All of those things may be helpful in this purgatory as well, but no guarantee. A lot of it is just time. Time passing really is the best healer. Medication can definitely help, although most think of that as not being necessary. Everyone wants to believe that they will be able to cope with things, will adjust to it on their own. But there are real chemical changes in the brain when you have suffered a trauma, and admitting that can be the start of healing psychologically. Accept as well that sometimes a little chemical correction can speed the process along.

Try doing the things you enjoyed and prove to yourself that death doesn’t ensue. Watch other people with similar situations and how they live their lives. Gradually make adjustments that allow you to slowly get back to normal, but understand that there may be a 'new normal' to accommodate the results of your illness. Know that there will be a time when you can look back on this phase of your life and say “Boy, that sucked. I’m so glad it’s over!” Unfortunately, there isn’t a specific time or date when that occurs for everyone. It would be nice if there were, if you could mark a date on your calendar and say, “That’s when everything will be OK again.”

Remember one of my oft repeated phrases: It's all relative. When you come back from the depths, then an improvement is relative to how you felt at your worst, not what you were in the 'before sick' phase of your life. It is very common to lose some of the physical, if not mental, capabilities that you once enjoyed and took for granted. And the word "OK" certainly falls into the category of relativity--and not in the way of Einstein.

But, honestly, I don’t think that you ever totally get back to the ‘before’, you can never resume the innocence you once enjoyed before death was so imminent. While on the surface life may return to normal, there will always be a part of you that is touched by the experience. In the long run you may appreciate what you have more, stop putting off goals or plans, express your love for others more frequently. But things will never be exactly the same again. Once you have encountered death you are changed forever, as it leaves its mark. And this is what those who haven’t experienced it can never fully understand.

Thanks for checking in, Laurie