Some Things I Learned

I haven’t decided yet if the blog is back, but it felt good to post one last week. So I’m taking it on a week-by-week basis. I make no promises, friends. But I did miss you.

For those just joining us here at Theblevinsblog, allow me to get you up to speed: My father had gastric bypass surgery on March 24th. The surgery went very, very, very wrong. I moved down from New York to North Carolina practically overnight, and have been living in Durham ever since. After five months in an ICU, two months in a ventilator weaning facility, and two months in rehab, my father finally went home last week. It took eleven surgeries and nine months of hell to save his life. And it sucked. It sucked on an epic, nightmarish level. It sucked so bad I can’t even tell you how much it sucked.

But I will try. Because I want to share some of the things I learned with you. It’s some seriously important shit, and most of it I had to learn in a trial-by-fire sort of fashion. I had a few great people helping me out along the way, but for the most part I was just making it up as I went along. I learned some really painful lessons, and I would love to spare some of you that pain. This is by no means an exhaustive list, but it’s a start. Tuck this list away in a back corner of your mind that you hopefully never have to visit again, but keep it there in case one day your entire life falls apart in a matter of hours and you’re vomiting and shaking and trying to stop yourself from falling through the ground beneath your feet:

#1: Take notes. Write down the names of doctors, nurses, medications, procedures, etc. Make notes about important conversations. Put the date on these notes, maybe even the time of day. Put these notes in a small notebook that you keep with you at all times. It would be best if this notebook has a little folder in the front or back where you can store business cards and other random small items that people hand you.

#2: Choose your battles wisely. Some of the healthcare professionals tending to your loved one may actually genuinely care about him, but most of them are just at work, punching a clock and doing their job. If you piss them off too much by arguing with them over stupid crap, you risk adversely affecting the level of care your loved one receives once you walk out of the hospital. So don’t risk it. Prioritize.

#3: Try not to care if people hate you. Your primary job is to be an advocate for your loved one, and that person may not be able to speak for himself. You are not there to make friends, so don’t be afraid to rock the boat occasionally (as long as you follow #2 the rest of the time).

#4: People will try to “help” by saying things that may deeply offend and anger you. I could write an entire book on this topic. The primary offender: “I went through [insert personal experience here], so I know how you feel.”

Story Time: It was the end of May, and I had just made the decision to officially quit my job in NYC, break the lease on my apartment, and move down to North Carolina. I was sitting in my dad’s hospital room, making calls to movers and storage units in New York while my father ranted and raved in his crazy, critically-ill state. The nurses came in to change out his rectal tube, so the room smelled like shit and he was screaming in pain and I was turned toward the window with my laptop open to avoid watching the procedure. I was logged on to my Facebook account, and suddenly someone I barely know FB chatted me with this note: “Hey, Blevins. I just wanted to tell you that my wife’s grandmother was in the ICU for two weeks once and it was really rough. So I want you to know that I know how you feel.”

Everyone will want to tell you that they “know how you feel.” And every time they do, you will get one step closer to totally losing your shit and committing a crime that will land you in prison for a very long time. Intellectually, you may be able to recognize that they are trying to “reach out” to you or “help.” But your ability to think rationally and logically will be one of the first things to go. You will become a bleeding, pulsating, open wound. This transformation will alter your brain and behavior, and you will have very little control over either.

I’ve thought a lot about this problem. People sincerely want to be nice and supportive, yet they sometimes say clueless and offensive things. I think the problem is that they try to do too much with the things they say. While some will tell you they “know how you feel,” others will try to assign some sort of cosmic or spiritual meaning to the hell you’re going through…or they may try to give you unsolicited advice, which usually just comes across as condescending. But I know that they feel helpless and don’t know what to say. I have spent nine months trying to come up with a solution to this problem, and here’s what I’ve got:

You ARE helpless and you cannot change the hell your friend is going through. Nothing you say will make the problem go away. So send them a link to a funny YouTube video. Or give them a gift card for a massage. Or take them out to dinner. And if you want to say something, here are the three best things you can say:

#1: “I am so sorry you’re going through this.”

#2: “Is there anything I can do to help?”

#3: “I love you.”**

**when applicable

#5: This experience will affect you physically. I lost six pounds during the first week. Then I gained the six pounds back. Then I gained another ten pounds. I’ve now lost six of those pounds. And that’s a kind of math I can’t even do.

Somewhere along the way I started to develop this scary-looking stress bump under my jaw line. At first I thought it was a zit, but it continues to grow every month. His name is Ken. Hopefully one day soon I’ll get Ken removed and he will be benign.

I used to love coffee, but now I can’t drink coffee without wanting to vomit. I wonder if I have an ulcer. I wouldn’t be surprised if I do.

I sometimes catch my reflection in the mirror, and I look old. Gray. Worn. Beaten down. The muscle definition in my arms, legs and abs that once made me so proud is now totally gone. I am mushy. And slow. And pale.

Some people will actually make comments about how bad you look. Oh, they never come out and say: “You’re not as gorgeous as you used to be.” (Well, my mother did actually say that about me to a car salesperson while I was standing right next to her….but that’s my mother.) But they will make comments that will make you want to cry. I don’t know why they do it. Do they want to hurt you? Do they think they are helping? I still haven’t figured this one out. But here’s my advice to you if you ever have a friend going through an experience like this:

If she has gained ten pounds and has a big lump under her chin, don’t tell her. If she looks gray and old, don’t tell her. If she’s covered in shit from head to toe and her hair is on fire, DON’T TELL HER. Because I assure you she already knows, and she just doesn’t have the energy left to deal with it. And when you see her months later and she’s no longer covered in shit and on fire, please don’t reference back to how bad she looked when you saw her covered in shit and on fire. Trust me: she knows.

#6: Your parents are mortal. They may not want to acknowledge this fact, but it is true. Years ago I tried to have a conversation with my dad about these issues. He was my mother’s caretaker and their sole source of income, and I asked him what we would do if he could no longer care for my mother. He replied, “We’ll cross that bridge when we get to it,” and would not continue the conversation. Last April I realized he meant: “You’ll cross that bridge when you get to it.” For years I begged him to let me scan all of the family’s important legal documents so I could save them to my computer and have immediate access to them in case of emergencies. He kept putting this off and putting this off, and when the shit hit the fan last spring we could not find a single important legal document. It was months before we could find his Power of Attorney, Living Will, and Final Will and Testament. And my father is an attorney.

I guess he thought he was invincible. Maybe he thought there was no way he could die before he was ready. I don’t know….I will never understand it. But it made a terrible situation even worse. And the real kicker was that in 40 years of marriage my parents apparently never had a conversation about what they would do in this situation. In June, we came to a point where we had to make the decision whether or not to keep going or let my father die. Those weeks were some of the hardest, especially because we didn’t know what he wanted and he couldn’t tell us. It is very difficult to make a decision like that for someone else. If I were in his position, I would have wanted my family to let me die. But I wasn’t making the decision for myself. Oh man…that was a horrible time.

#7: Tell your family and friends how you want to die. Be as specific as possible. This year I intend to craft my Living Will, and it will be a work of art. I foresee a sort of “Choose Your Own Adventure” novel; each section will end with choices like “For acute renal failure, turn to tab 38” or “For cardiac arrest, turn to tab 79.” It will have charts and graphs and will cover every possible scenario I can think of. After spending five months hanging around an ICU, I can tell you that there is a fate worse than death. You need to give a lot of thought to how you want to end your life, and you need to make sure the people who will be making those decisions for you know what you want.

#8: Try to take care of yourself, even though it’s mostly impossible. That’s another common way people would try to help. I can’t tell you how many times someone instructed me to “take care” of myself. I did everything I could, but nothing helped. I worked out. I ate healthy food. I tried to do things like get massages and pedicures, but nothing seemed to work. Even drinking lost its luster for me, and that was a first. The one thing that helped was sleep, so whenever possible I slept. But I could never replenish myself. This experience depleted me so much that I believe it will take me years to fill back up. Right now I feel like an empty shell. I’ve got nothing left. I feel like I lost about 20 I.Q. points in the last nine months, and I’m surprised I can even write this blog. I took the GRE in December, and as I sat there in the testing center I literally could not get my brain to work. It’s like I lost part of my brain this year. It terrifies me and depresses me. I really hope I get those I.Q. points back.

Friends, I hope you never go through something like this. Even if you’re someone I don’t particularly like, I still wouldn’t wish this experience on you. But if you do one day find yourself covered in shit with your hair on fire, I urge you to contact me. You can yell and scream and say offensive things to me, and I will let you. I will understand that you are not in control of your brain or behavior. I will forgive you for everything you do and say, no matter what it is. I will not offer you advice unless you ask for it. I won’t tell you that this is “God’s plan” or that “At least now you know how strong you are!” or “I know how you feel.” I will say only this:

“I am so sorry you’re going through this. Is there anything I can do to help? I love you.”

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Tags: family, gastric bypass surgery, taking care of your parents

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