This Is How (18 page)

When you are the partner of somebody diagnosed with something, you are codiagnosed automatically as a Disease Bride. Because Disease Brides are not the ones with the disease, they have room to carry additional information about complications, uncommon side effects, worst possible outcomes.

As the Disease Bride learns about the condition on this first day, he or she will experience a thickening of the brain. There will be a point when no additional information can be absorbed. The reason for this is far too obvious to be apparent: you will be learning a new language now, in the style of the Berlitz Total Immersion method. One week from the day of diagnosis and you will find it difficult to believe there was ever a time when you did not know what a tumor marker was.

The next several days will be intense and emotionally exhausting for both of you and for everyone else in the household.

But already there is good news: while it may seem the days are getting heavier and more overwhelming, this is optical illusion. Ninety percent of everything you read or hear is unfamiliar. When something is unfamiliar, you shield your face from it, you try to shove it back. But very soon after diagnosis, you will learn that information about the disease is not something to fear or run from. Information is your friend. You will come to crave much more information than is available.

These first couple of weeks you will be on the long, steep
ramp that leads to the highway. This is where you have to learn the fundamental features of the disease and understand what this disease means in the context of your life. Better to know there is the possibility of sudden blindness than to wake up blind and surprised. And absolutely, this will be overwhelming, stressful, frustrating, and utterly confusing and contradictory. In other words, this is Satan’s medical school.

But this initial, getting-to-know-you/getting-to-know-all-about-you phase is transient and not a new facet of your life. You will never feel as overwhelmed and over your head as you do now.

During this time, there may likely be additional tests to confirm or rule out various possibilities, and available treatment options may be discussed or even begun. Each visit to the doctor should result not only in more information about the disease but a prescription for antiwrinkle face creams, high-potency pain relievers, muscle relaxers, and other luxury or life-cushion medications.

You may be forced to make choices without enough time or information to feel confident in the decisions you make. This is a new and permanent architectural feature of your life.

Confidence is rarely encountered and will almost never be felt in any medical context.

Everything will always happen too fast, or not fast enough. This is Disease Standard Time and it moves much faster than Eastern, Central, Mountain, or Pacific Standard Time. Unless, of course, it moves much slower or does not appear to move at all. More on this in a moment. Early on, get the cell phone number and personal email of every doctor who will be caring for you. Nobody attends medical school so they can leave the office behind at five and enjoy a peaceful evening scrapbooking.
Never abuse your access to your physician; never hesitate to contact her if you have a real, non-Internet-solvable issue.

After the initial shock of diagnosis and the overwhelming information overload of the ramp-up and any additional diagnostic procedures are complete, you, your newly diagnosed loved one, and your new disease will be alone together.

What happens now?

Your life happens now.

With disease, it’s strictly Pay As You Go. What affects you now is what you deal with now. We never overpay disease.

This means, if one of the possible issues you may face is a loss of motor skills or even paralysis, know that these may at some stage be features of your own disease but until they are, they are not. So, a twitching in the pinkie is not the shuttle bus to paralysis and a feeding tube. A twitching in the pinkie is only a twitching in the pinkie and this remains true for as long as it is true.

Pay only for what you use. Accept one’s current state as one’s new default and move forward. If last week your diseased loved one’s vision was fine but this week it is compromised, accept the compromise as the new default. It may be temporary, it may not. It may get worse, it may not. The sooner you are able to accept new features of your disease and not resist with denial, the sooner you will experience the single blessing of sickness: once you’re in it, it’s okay. But you must be in it. You cannot live in a state of refusal. You must accept what’s happening now; know what could happen tomorrow but never accept tomorrow’s possible disease feature before it arrives.

In diseases that qualify you for handicapped license plates and parking stickers, get these now. Never mind that not having them makes you feel normal. “Normal” in this context is a
lie: it means “prediagnosis.” With Disease is your new normal. As part of your compensation package for taking on disease, you are owed easy parking for the rest of your life. Shaving four minutes off walking from your car into the mall might seem ridiculous right now but there may come a day when those four minutes are needed on the backend. Those four minutes could end up feeling like the very thing all the other minutes of your life were leading up to. So get the sticker and the plates and use them.

Nothing is ever as bad as you anticipate it will be. Even the worst thing you can imagine is not so terrible when viewed from the inside. Because
once you are inside it, it’s okay.
Be aware of the potential worst. But don’t accept it in advance.

The reason is that it may never arrive and so we must never overpay the illness. Current symptoms should be understood to contain the potential to improve or stay the same.

Accept this state of fluctuation. The feeling of frustration one encounters when speaking to medical personnel is usually the result of “trying to get a handle on this disease,” to “know what to expect.” This is merely a coy rephrasing of one’s natural desire for structure and definition. It is only human to seek facts that can then be used to construct a sense of definition, if not certainty. But disease requires we live our lives fully and well, inside of the moment currently at hand and beneath the umbrella of uncertainty.

Part of accepting disease is accepting that any or all of its
potential features may apply to you at some point. This means facing the possibility of some frightening physical changes.

But once we are diagnosed, we are within the disease. It is not an option now to return to a previous state of being. There is no “before” and there is no “after” because there exists only now.

Before and after, then and tomorrow are ideas. They are concepts. These places do not actually exist until they do. Nobody wants severe symptoms. Nonetheless, they do occur.

It is best to be aware that they may happen to you. Once diagnosed, you are automatically and irrevocably now one of the “other people.” These are the people who experience the awful things you, yourself, are immune from. So, while cancer may have once been something that happens to “other people,” now you are one of the other people. Anything can happen to you.

In order for this to not be extremely terrifying, it is essential to understand what I told you before: even severe symptoms are not as severe when you are inside of them. Just as your car has airbags you never see during the course of normal, uneventful automotive ownership, so too does your human self contain a powerful ability to adapt that you may be entirely unaware of until this ability is activated within you.

This is a fact: never “hope” you don’t get certain later-stage symptoms. When you “hope” not to get a set of symptoms, you automatically empower those symptoms. If hair loss appears to be inevitable, allow the hair loss to arrive but do not give the hair loss a police escort and a parade to make its arrival that much more impactful.

Hoping one will avoid certain symptoms never prevents
the symptoms. It only makes the possibility of their arrival all the more terrifying by infusing them with the parade of dread.

If one day a new symptom appears, you will adjust and the new symptom will no longer be new. It is the unknown that we are compelled to fear and dread. It is the unknown that we see as the enemy.

Once you are inside any given set of symptoms, they become a familiar part of you and the fear is drained away and replaced with the task of coping. It’s just like how if somebody showed you a photograph of your clean home as it would appear if occupied by a curious, energetic, uncoordinated, and filth-adoring two-year-old, you might very well decide that goldfish and not children would better suit your lifestyle. But if you have such a two-year-old and your house is currently in such a state of chaos, the mess is probably the last thing you care about.

You are not moving into a new gated community where everything you know will now change. This is not a new lifestyle. You have not just purchased your first home beside a lake in Cancertown or AIDS Point. It is only a disease.

And it becomes ordinary very fast.

And it remains ordinary for as long as you live.

So, do not become a couple with MS who still finds time for a dinner out. Be the busy couple that eats out frequently but is able to work MS into their schedule. This is what works best. I know, I have done it both ways.

Never sit at the kitchen table dipping crusty sourdough into olive oil and talking “realistically” about “how bad this could really get.”

Disease does all the work for you. It was designed for the lazy.

Your disease will inform you of what to worry about, when.

Furthermore, two people with the same disease may face very different issues. If Jan went blind two months after diagnosis, this does not mean you should be online shopping for braille flash cards. Likewise, if Jan experienced pain in her lower lip before she went blind, experiencing pain in your own lower lip does not mean you will now go blind as well.

Only when a feature of the disease presents itself should that feature be incorporated into your life.

There will always be new materials to read with respect to the disease. These will always be helpful unless they are frustrating. Either way, both the person with the disease and their Disease Bride should take lots of naps and have lots of snacks.

When it all feels so daunting and confusing, dramatic and horrible, when you feel like, why even try?

Take a nap. Naps are especially helpful during the overwhelming initial ramp-onto-the-highway phase.

Knowledge is important but naps are more important. The details of treatment are often confusing. Cheese is easy to understand. Eat cheese.

It helps to reward yourselves with things like real butter and cupcakes. Looks like both legs will have to be removed next Thursday? That means buttercream frosting. The doctor would like to review some lab results with you?

If he is willing to go over the results on the phone: French fries.

If he insists on seeing you in person: cheese fries.

Don’t forget to always have soup on hand. Bad news should be followed with soup. Then a nap.

Fight each new horror with an even richer treat.

Why nobody tells you this is a great mystery: on the day you have a blood transfusion, a grilled cheese sandwich will be the best you have ever had.

If the ability to walk is lost, brownies will taste better.

This is a fact.

The person who loses their ability to walk will care more about the brownies than about the walking. Because if they have lost the ability to walk, they have accepted the loss. Walking was then, brownies are now.

You would be amazed by what you can give up, lose, or break and yet still be a person who gets happy over brownies.

It only
seems
like I am kidding.

When concerned friends ask if there’s anything you need, the answer they expect is, “No, we’re doing okay.”

This has two effects: the person who is concerned and would like to help but doesn’t know how continues to do nothing and you do not have a casserole dish of scalloped potatoes sitting on the counter. So when friends or family members ask if there’s anything they can do, suggest that they make from scratch the very best thing they make from scratch, then drive on over, open the door, and place the food inside. They can
then turn around and head home because nobody at your house has the energy to even say hi.

The person will absolutely love this suggestion. Especially the part where they don’t have to see the sick person. Nobody knows what to say to somebody who suddenly has stage-four ovarian cancer. It’s exactly the same as announcing to your friends that you have taken a second husband and that the three of you will now be living under the same roof.

Your friends naturally have a thousand questions but not one of them seems appropriate to ask.

But not asking will create emotional distance. It’s better to ask. When walking into the sick room of the diseased, instead of saying, “Hi Julie, oh my gosh, those are lovely flowers,” you could say, “Hi Julie, so if you could improve one thing about this setup here, what would it be?”

Maybe there’s something you really could improve.

GRATITUDE IS ESSENTIAL. “THANK YOU
disease hammer for giving me brain cancer instead of ———————————.”

“Thank you disease hammer for giving me ALS
after
I lost my virginity.”

“Thank you disease hammer for giving me a variant of ALS that does not prevent the swallowing of vanilla pudding.”

There is always something for which you can be extremely grateful.

Even if the disease progresses with relentless speed. Even if suddenly, you sense that death has slipped into the room with you.

. . .

ONE DAY YOU MAY
find yourself lying on the bed beside the person you love. Both of you inside of disease. Perhaps you will be watching the liquid slowly rise in a column within a straw.