This year, it’s time to take action. It’s time to pull our heads out of our asses and make some plans for world domination.
How? By telling the world, not what we want to do this year, but what we will.
So what will YOU do this year?
It’s already been a rough year for me. Just seven days in, my five-year old son was diagnosed with Leukemia. It has floored me. I am still in shock. Daily I struggle with the WHY WHY WHY of it all.
Still, I can make this year my bitch. I cannot – and WILL NOT – let the whole year be a sinking ship.
I will take care of myself. This means giving myself a break, letting myself off the hook, taking days off work when I need to, continuing my healing through therapy, taking naps… It also means getting dressed every day, showering, and not letting myself slip into a depression. I will continue to do things that bring me joy – like travel – and try to let go of the worry.
I will be there for my son. I will advocate for him and help him create good memories to balance out the less palatable ones. I will continue to give him a stable home life with structure despite the bomb that has gone off in our life.
I will keep working toward my goals – personal and family goals. My husband and I have plans for this year and next – plans we’ve been working toward since we met – and I will not let them get derailed. It would be easy to push everything aside, but the RIGHT thing is to show our son how to live in the face of adversity.
I will nurture my primary relationship. I’ve been stressed and overwrought and altogether tapped out emotionally lately. It’s okay to have low points, I know, and my husband and I are helping each other as best we can. Our relationship is important and provides a foundation for our life as a whole. If we take care of our marriage, the rest of our life will benefit.
I will allow myself to stumble. I will give myself permission to be less than perfect. I will celebrate my victories. And I will make it through this year.
Fortunately, my daughter Sam, who has ben recently diagnosed with Triple Negative Breast Cancer, has medical insurance through her employer.
As long as she can keep her job during all of her treatment, it covers a fair amount of some of her costs. At least after her catastrophic cap was met for the year (didn’t take too long to reach it).
We all consider the deductibles and copays, and prescription copays in our lives, but be sure to check your policy on investigative drugs. Medical trials. Travel and time off work. Did you know that many insurances do not cover care if the “Standard of Care” doesn’t work? Some don’t cover food unless it’s eating out instead of buying a loaf of bread and lunch meat. Some only will cover hotel rates available to AAA members in the 1950s. Some will pay a portion of their “idea” of what your gas should cost, but only on the DATE of your appointment, even if you’ve had to drive out of state the day before or after.
Pray you never need to know the intricacies of your health insurance. Even if you mange to jump though the right hoops and snag every receipt, it would take a team of dedicated government trained legal assistants to maneuver through the paperwork. Oh, and then you can wait for over a year for any reimbursement.
Moral of the story.
EVERYONE.
Including your 20-something year old child should have some type of additional policies, because my 20-something had never been sick in her life. She had to use her insurance for the first time and we learned a very hard lesson: chronic health issues and cancer do NOT care about your age, your gender, your race, your educational level, or your income bracket. Buy that add-on policy you pray you never have to use. I mean, yeah, it’s going to crimp on picking up that name brand mayonnaise, skip a few cups of designer coffee or don’t upgrade your phone to get it, because you don’t know how important it can be.
Pray you never need it, never have to walk this walk or fight this fight while being financially sucker punched at every turn.
MD Anderson Infusion Therapy
Traveling 400 miles for treatment in Houston, TX, at MD Anderson alone adds up. Lodging is expensive. On her third trip out of state, she and I were in Houston away from home and family for several weeks straight. After that, we’ve got weekly visits for treatment and tests will go on for the foreseeable future.
Imagine you are just finishing college. You’ve invested all these years into student loans and grades and worked from the bottom up in a field helping others, so you’d be all set in your field after just one more test. You’re 20-something, but you’re invincible; you’ve never been sick.
You’ve got all your ducks in a row and have considered every possible decision.
You have spent your entire life on college student budget working your own way through school, accumulating debt, but going into a field where you are guaranteed to be a super star. Soon, you are going to kick open the doors and rock the world.
You dream of the vacations you didn’t take because you had to write papers and pay for copies and laundry, and you begin to plan them in your head. You go to sleep, dreaming of how great it’s all going to be now that you’re done. Once that last test is passed, you can consider your future. You have dreamy conversations with your parents about how one day not only will you buy a house, but this will have a little retirement cottage in the back for them, and they won’t have to worry about anything.
You tell your baby brother to keep up his grades, you bribe him and tell him to work his way to and through college, but you will be there for him if there are any hiccups along the way.
Your phone rings on a Friday afternoon as you’re in a store looking for a pink bow tie for your little brother’s prom coming up this weekend. It’s the doctor you saw, and out of nowhere, he says you have cancer and he will see you again next week. Just like that.
You’re alone. All alone.
You’re holding a bow tie for the baby brother you adore and have dressed his entire life. Your life just changed. The air is sucked out of the room, and nothing moves. You walk over to the dress shirts and begin looking for his size, but now you can’t remember for sure if he has that adorable little boy neck or of he has now grown into a lumberjack.
You call your mom to check, but instead, “I have cancer” falls out of your mouth.
Everyone’s life just changed and it all hits you.
Imagine dropping everything to live in a city far away for a month while still having to pay rent, utilities, and a car payment. Leaving your bed, pets, plants, and family behind. Being afraid of checking the mail or answering the phone: there will be bills in there with numbers that look like jackpots for the PowerBall.
Seeing things you never wanted to see. Learning a language you didn’t want to learn (Cancer Speak). Realizing you aren’t in invincible 20-something with the world at your feet, that you now must depend on the kindness of strangers when you don’t even recognize yourself in the mirror.
In the meantime, you travel every week to Texas, three states away, sleep, eat, get prescriptions, anything else you might need. Make sure you keep your job so you can keep your insurance and have a life when this is all over. Oh, also, you’re fighting cancer, so we are going to dump some of the most horrible chemical combinations known to mankind into your body and you are going to be sicker than you could ever possibly imagine.
Lucky that our family is tight. We pull together we pull through. All of my kids have sacrificed what they have and the course of their futures for family members and this is no exception. WE ARE LUCKY.
Samantha’s cancer is rare, which means she’s interesting to the scientific world, which opens us up to the option of seeing the Most Genius Medical people on the planet who study her type of Cancer. WE ARE LUCKY that we were able to get together the resources to get her to the people who could try to help her in the first 3 months.
WE ARE LUCKY that friends, family, and strangers have taken it upon themselves to raise money, cook dinner, open their homes, offer a ride, send a card, give a hug, and pray for us.
We are simply terrified, we know the first chemo regimen and treatment plan failed. We see the doctors and nurses faces when they hear her diagnosis. We realize what it means to be in trials, research programs, and testing studies. We know that we can only get the only hope kind of help out of state. We don’t feel very lucky because we know as a family that as the expenses, bills, costs pile up, the income has gone down on several fronts. Things like car repairs, broken air conditioners and power going out don’t stop because of cancer.
We don’t feel lucky because there’s interest on the credit cards and interest on the payments, and we are paddling like a herd of ducks in a hurricane just to get thru every day. We don’t feel lucky because it’s unnatural, it’s unnatural and soul-emptying to be a parent whose child has cancer. We don’t feel lucky that ”she’s grown up.”
We are her parents and she will always be our child. We don’t feel lucky that “at least she doesn’t have kids,” because she loves children and wanted to be a foster mom, because that’s who she is.
We don’t feel lucky because no one who has cancer is lucky.
someone tries to bullshit me on what repairs my car needs
I’ve just been told “go to Hell” (the implication being, been there done that)
people are having a grand time trying to place my accent — for some reason, no-one has ever guessed right, so I just give up after a while and tell them this is 30 years of living in and around Detroit talking. Thank you for guessing that I’m maybe Irish, but the truth is gonna make you make an “Ugh” face.
Saying “Detroit” makes everybody make the “Ugh” face. If you live there, it’s your resting face: Either you’re constantly consciously aware of how much of a deliberately-constructed torture-machine of poverty and racism and environmental awfulness it is, or you’re unconsciously aware of it and your Ugh face is hiding a half-inch behind a desperate Midwestern smile.
It took two years after I moved away for my face to reconfigure away from the constant pained expression of a person trying to live a life among a seething ruin after rubbing shoulders every day with people on the absolute edge of desperation. And no, I don’t mean the homeless and the addicts. There are far more, and equally desperate, people in southeast Michigan who are still, for now, managing to live indoors. You won’t notice them unless you live there, and they outnumber the ones wandering the street by a wide margin.
Since I was a tiny child, I’ve been trying to say, “Oh my gods y’all — This is where the whole country is headed if we don’t wake up…this right here is industrial capitalism’s next phase! Let’s stop and change while we, while anybody, still can!”
But after you grow up a while, you realize that telling people doesn’t matter: they either know it full well, and think it’s worth it – probably because they’re wealthy, or privileged enough that they think they will be one day – or don’t simply don’t care (because, I’m guessing, it feels inevitable…or maybe I should say “they’ve bought the lie that it’s inevitable”).
I’ve now lived in Boston almost a decade, and while my inner Cassandra will still come out in heated discussions, I’ve mostly given up on sounding the warning-siren of Detroit.
It’s tiring and depressing, and if I’ve ever opened anyone’s eyes to what Detroit’s absurd segregation, its grotesque violation of one of the most gorgeous natural environments in the world, or aggressively anti-human city-planning means to the rest of us, I’m not aware of it.
If you’re not from Detroit, you don’t think it could happen to you, and/or you’re buying the perennial line about how “making a nice expensive spot in the middle of downtown will fix it. And if you are, you’ve probably given up – or will soon.
I’m an expat / refugee of Detroit, and I gave up SO MUCH to get out.
After 30 years I finally realized that if I ever wanted to be mentally “okay” (never-mind healthy, just…okay), I had to get away from the constant background scream of hopelessly-flailing-against-awfulness that is the D.
The biggest thing I gave up was being near my family — my only family in this world; we’re a small handful and we’ve always been very close. I had high hopes that I could “get them out” too, once I was established here, but my older parents and mentally-disabled brother (who, I stressed, could have reasonable health care here — hell, if they were homeless in Boston, their options would be better than in Michigan) just weren’t up for that kind of life-change, and they’ve decided to stay.
I talk to at least one of them every day on the phone. I travel back to D-town four or five times a year (my spending every holiday in Detroit is a fun “you’re so hardcore” joke for my friends here), and every summer they take a vacation (their only one) to come visit me and Boston. The pain of that separation is a little easier now, for the most part, but not really.
I have survivor’s guilt. I miss them like crazy, and I hate that if something bad happened I’d need to make an 800-mile journey to reach them. I struggle with the moral implications pretty much daily: Is it okay for me to have done this, to have found myself a home that makes me incredibly happier and miles healthier, and to have left my loved ones behind in Hell, USA?
I’m not going to talk, here, about the details of growing up in Detroit; about what the background of intense violence, racism and poverty does to a person – though maybe I will later. This one is about getting out, and where that leaves you…partially because I’m sick to death of the sensationalism around it, and can’t quite handle yelling about the realities of it yet.
I hate Detroit, still, the way you hate an ex-lover; instead of Ugh-face I now have Rage-face, but at least it’s not a constant thing.
It’s SO difficult to have your hometown, the place you grew up and will forever know best, be the embodiment of modern evil; to feel like you’re walking into Mordor every time you go back; to have a wonderful family Christmas and then gasp with relief when it’s over and you can leave, even though your chest burns because you won’t see your family again for months.
I left my daughter there too, Band. My only child. I’ve always shared joint custody of her with her (thankfully awesome) dad, and when I left I had to decide if seeing her every holiday and having her live with me here in the summer would be enough for both of us…and that, I think, is probably the worst and hardest decision I’ve ever had to make.
But eight years on, I still feel like I made the best decision I could. Her situation is pretty well-protected from the worst of it: She lives in a rural area safely far outside the city, in a nice house, and goes to a great school with her three half-brothers, and again, we talk almost daily (she’s a teenager now, and getting too busy for daily :P) — and we have a great relationship. She loves Boston, and I’m SO glad she gets to have more and broader experiences than I did…my hope is that she won’t feel trapped in Michigan, and won’t have to make a decision to either stay in shit-town forever, or rip her life in half to get out and have a chance at happiness. Also, she isn’t stuck there with one of her parents being a miserable, grotesquely depressed mess, like she would have been if I’d stayed. That was definitely my experience — my Mom hated Detroit too, with every breath, but she never could stomach the hard change of leaving, so we never did. And now she seems resigned to dying there and just…hating it the whole way.
I guess we all do whatever we can to do better, to provide better for ourselves and our kids, any way we can. Sometimes that means cutting your own roots, and giving yourself a chance, however much a long-shot it is, to grow in better soil, to be nourished instead of constantly poisoned by where you live.
It’s important to say this, before I wrap up this topic (which I’ve needed to get off my chest for so long now; THANK YOU BAND I’M SOOO GLAD YOU’RE BACK) — and that’s that I carry a dark fear with me always, a terrified certainty that at some point, I will likely have to give up my better life here and go back to D-town.
Everyone in that place is precarious, and like I said, my parents are aging and my brother needs pretty constant care and support; and we’re all we’ve got, really. I’ll be in a better place to help them thanks to the good career and vastly better health (physical and mental) I’ve been able to cultivate here in Boston — but I very well might need to give up all my progress here in order to give them that help, and I know that if they really need me to, I will.
So every time I walk back into Detroit, I know that I might get trapped there again someday. If I think about it too long, I’ll start shaking and crying, so I try not to. But that’s another angle that may be helpful to remember for all survivors of nasty situations: A lot of the time, you don’t just get to leave your Hell.
People who got stuck there for a while can get out and never look back, but those of us who were born and raised in Hell can sometimes never get free.
Detroit is a place I’ll live with, even if I don’t live in it, for the rest of my days.
And it’s so hard to write that, because the rage, the ungodly anger at everyone who caused it and is keeping it going and is punishing all of its people with it every day, has never let me go. It’s even somehow scarier, now that I’ve gotten some reprieve from having that rage as my resting-face, to contemplate being immersed in it again…but it’s not a dragon I can slay; it’s too big. It’s my hometown. It’s in my blood and my voice and my life, no matter how hard I work to cut it out of them.
In June of 2017 my daughter was diagnosed with leukemia. She passed away in November. My husband and I have custody of our 11 year old granddaughter. Grieving is taking it’s toll. Last month I was admitted to the hospital for being suicidal.
I think about my daughter all the time. I spent every minute in the hospital with her for 5 months. Telling my granddaughter that her mom was dead was the worst thing I’ve ever had to do. Whenever I go outside for a smoke, I think of my daughter. Whenever I drive the car, it reminds me of the drive to the hospital.
My mind won’t stop thinking suicidal thoughts. My brain constantly hammering me with negative thoughts. I’m hopeless, sad and feel out of my body. I don’t recognize my thoughts or myself. I am so lost. The emptiness is everywhere and I don’t know what to do.
I’ve been treated for depression for years and have had suicidal thoughts the entire time. I spent 2 days in the psych ward. I slept most of the time. I attend an outpatient program and went to a new psychiatrist today. He said my bipolar diagnosis was incorrect and adjusted my medications.
Lyme has done some awful things to me. I think the worst are the feelings of despair, anxiety, loneliness. The physical symptoms are not permanent. And although it is sometimes hard to believe, the emotional and psychiatric symptoms are not going to linger forever either. No one can understand how disabling this can be if they haven’t walked this path. If I said I had cancer or MS, I think people would relate (“oh, so and so has that”). We’ve made those illnesses a part of our vernacular. Chemotherapy is almost universally understood. As a society, we know what to expect when someone gets those diagnoses. We are compassionate, sympathetic. I know when my dad was diagnosed with cancer, people came out of nowhere with cards, meals, time.
Lyme is not yet seen the same.
Late-stage Lyme is debilitating. But it is invisible. There is a great website called “But You Don’t Look Sick” that has some great stories about perseverance through invisible illness. I’ve been called a hypochondriac by people who claim to love me. That’s heart-breaking. I sometimes don’t have enough energy to get out of bed to make dinner. I certainly don’t have the energy to convince someone that my whole body hurts and that I have fatigue that can only be temporarily overcome by several large cups of coffee. I’ve realized that putting on that front though only makes it less obvious that something is wrong.
I don’t want to be a burden to those I care about, so I try to minimize my complaints. But truly, I feel very alone. When my dad was sick, I felt there was no other choice but to move in with him, make sure he was cared for, that healthy food was on the table, that he didn’t have to worry about driving home from chemo. Where is my caregiver? I don’t mean for that to sound desperate or clingy. I guess I just don’t understand. I would do anything for friends and family. Quite frankly, I have, sometimes to a fault to where I haven’t left anything for myself and my family.
I am ready to be healthy again. I want to have non-caffeinated energy. I want to be able to work out without feeling crushingly fatigued from lifting ten pounds. And I want a social life back. I know it takes time to maintain friendships, and I feel like I have lost my ability to do that. Mostly I’m just tired of being alone.
And being sick is just one more reason for me to feel distant from others.
Being a caregiver to a loved one is one of the most gut-wrenching things a person has to do.
This is her story:
I’ve been contemplating blogging for quite sometime. I’ve been afraid to for several reasons, but to rattle off a few: anonymity, vulnerability, and pure avoidance. I have a fear that if I actually put the feelings/circumstances/questions out there, it means I actually have to deal with them. Thank you Aunt Becky for starting this blog…so I can get my toes wet.
From what I can tell of this space, many are dealing with loss, mostly stemming from the unfathomable experiences associated with childbearing/loss/postpartum/depression and the host of other issues those of us who are now “adults” face. I would like to add another sad layer to party – dealing with caring for someone whose mind and spirit are being slowly ripped away through Alzheimer’s Disease.
My mother, the beautiful, talented, smart, amazing hero of my world, is slipping away. I cannot say things like…she has had a full life, this is part of getting older etc. You see, she’s only 61 years old. We are at least 5 years into this battle (it took most of those 5 years just to get a diagnosis) and it feels like this freight train is traveling full force. Every day, for my mom, is the best it will ever be. Tomorrow, some different aspect of the person she is today will be gone. For now, she knows me, she knows my kids, she know she is my mom. She doesn’t remember where she lives, when the last time she talked to me was, whether or not she fed the dog (yes, at least 5 times now) or how old the kids are, let alone that she just told me the same story for the tenth time in a single conversation. It can be so frustrating, but I have to constantly remind myself…today is as good as it gets.
I need an outlet…and hope this can be one. Caregiving, whether its for an infant, child, spouse, sibling or parent, means giving more of ourselves than we ever thought we could give.
And that comes at a price. I look to you, fellow fighters, for insight, laughs and support. I promise to give it all back.
Living with Lyme Disease can be a brutal burden.