Fighters (a study guide and profile)

Healthy people, this post might offend you. Just a warning, and if you’re offended, it’s because you are “one of those people” of which this post is about to speak, or you just have no clue what I am talking about. This post is for the suddenly ill, the chronically ill, and their actual caregivers – the people who are tangibly there. It does not pertain to the well-wishers who want to be acknowledged for more than they are. Well-wishers are needed and have an important place in the life of the sufferer, but they are not caregivers and the sufferers don’t see them this way. Again, just a warning.

I have had a serious autoimmune disease since 1996. I have been through many medications, several major surgeries, lots and lots of infusions, chemotherapy drugs, much more radiation than I believe I need, etc…And this is not unusual for someone who fights chronic disease every day of their lives. I tend to feel a certain sort of resentment when I am recovering from some sort of disease-related treatment.

At first, way back in 1996, this feeling would rise up in me like an acid and eat me, literally, from the inside out. I would be unable to eat food or absorb nutrients, It stunted the healing process and did nothing for me. Over the years, the feeling has diminished a bit. With time, anything dulls a bit, even the kind of resentment about which I speak and with which I have actively struggled during my entire adult life, for brief or lengthy, seasons. I write about it differently today, and somewhat reluctantly, because I think it is important for sufferers, or Fighters as I’d rather call us, to wrestle fully with this beast, like Jacob with his angel.

It often visits at night when you are puking your brains out, over disease or medication, when you are crying out in pain from disease or medication, when you can’t feed yourself, bathe yourself, walk alone, or retain a simple thought for more than a few moments. It comes when it takes you hours, literally, to tie your own shoe laces, and you just have to do it alone, because there is no one else, except, you. You’re alone, but your Well-Wishers believe themselves present. This is when Resentment swoops in and settles inside the wide open spaces of your broken heart. I do not feel Resentment deeply today. He started in last night. Last night, when I received a long email from a friend, who has almost never been present during any of my trials, with the words, “As always, I will be there.” And to clarify, I have received a few of these messages over the past few days since I returned from the hospital after my thymectomy – a serious, major, thoracic surgery for Myasthenia Gravis – the disease that has nearly killed me – twice – and tries to do it every day. It won’t win. I am living proof.

This email was too much for me, because Resentment started leaning heavier on my shoulders, pressing on my incisions and all the tender spots that pain medicine can’t reach. He said, “She’s never been there. She just thinks she has. You should tell her off in that sharp, long-lasting writer voice you own so powerfully. She’ll never forget your anger.” I listened. It made sense. It was all true. I should tell her to shut up and stop patting herself on the back, while mine hurts so much. Resentment smiled. I felt good for thinking it. But my Christianity is stronger, I hope, than my old sparring buddy, Resentment, and I fought pain and nausea instead of my friend. The truth is, I have a collection of dear friends who are Well-Wishers, and like I said, they have their place and they are needed probably even more than the hands-on caregivers. They send words of love and encouragement and hope and prayers and light. Some of my greatest and most helpful Well-Wishers are Pagan and atheist. They tend to be fairly honest and they tend not to offer physical things they can’t deliver. They don’t usually claim to be my best nurses either. They simply say, “Geeze, that sucks. You have my love. Get better, pal.”

Those words are true and they heal better than a good antibiotic. My religious – Christian, Jewish, Buddhist, Hindu, and Muslim pals (I have them all) – who do the same (offer only what they truly can, even if it is just kind words and the genuine warming light of their prayers) – offer me the same kind of balm. I treasure these gifts during times of illness and/or recovery.

Not every friend needs to be a caregiver to the Fighter. The screaming, cheering crowd, the quiet affirmative nod, is more important than the doctor with all the answers. True story. Well-wishers who have still stuck around to read the rest of this, never feel that you are not doing enough if your words and prayers are all you have. That is everything. These are your two mites. They are like so many continuously unwrapping miracles. Keep it up. You are just fine as you are.

Well-Wishers who claim to be anything more, are the conception of Resentment . They are the ones who make the Fighter want to punch all the wrong people and tear at their own recovery. They are the ones who say things like… “I will come visit when you’re all better, because I can’t handle watching you suffer.” “What can I do?” and then they follow this up with, “As long as whatever you need does not conflict with x,y,z.” or “I don’t do ‘sick’. Feel better.”

I have had a friend for years who has done this from the beginning of my disease. When I was first paralyzed with a weird Guillain-Barré’/Myasthenia Gravis Combo Crisis, she visited me and then told me that she could not handle illness and I did not see her until I was all sparkly and recovered and walking around in fast, long-legged strides around my block several months later. When I started to weaken again, she said, “I can’t handle anything more. Don’t even tell me about it. I have too much to worry about right now. I am sorry, I know that’s mean, but I just don’t have anything for you.”

Okay. Fair enough.

I suffered completely without her friendship during the rough times. She was never there when I couldn’t feed myself or when I slept in my own vomit for three days. She was never there when I had to have a chest tube inserted without pain meds. She was never there when I learned that my baby was stillborn. She was never there when I lived three months out of a wheelchair and could only eat soy shakes, because swallowing made me choke. She was never there for any more of the many hospitalizations or surgeries. She knew about most of them. A few of them, I just never bothered to tell her about. She didn’t want to know. Said she couldn’t handle it. Always had a reason.

But she cared for other friends, who lived further away and whom she hadn’t seen in years. She told many others the same thing, but she actually helped them.

Why do people do this? Resentment makes me ask myself this question. He whispers it into my dreams at night. I have an incredibly supportive husband, and over the years, we have achieved much greater faith, trust, and spiritual growth. We two, have healed together and even though this is the most serious surgery to date, I have learned the ropes and Resentment is only a whisper now and not a roaring train, derailing my every waking moment.

This particular Well-Wisher could have several different names, because she is like so many others who have done similar things. She has promised so much and offered only words, but she does not stop there. She does not want just to be noted for her words. She wants to be noted for the care she has only ever given, really, ONCE. Once, she supported me physically, and I will forever love her for it. In fact, I loved her before the support and I would have loved her just as much without it, as I did not expect anything from her. I never do. When she has needed support, I have been there…sometimes.

Most of the times, when she needs more than a sincere Well-Wish (remember, these are great things), I am ill or recovering and I cannot offer her anymore, but I try. I tell her than if I can do something, I will, and I mean it, but then I usually have to tell her that I can’t help, because I am physically impeded. I do not help any other friends more than I help her.

I have another friend, who is a Fighter of debilitating Major Depressive Disorder, and she is ALWAYS here. Not there. She is here. She drives me around, she helps me tie my shoes, she makes my family dinner, she takes care of my children, she laughs, complains, and cries with me.  I do the same for her. We irritate each other. We encourage one another. We lift one another up and sometimes tear each other down. But, mostly, we spend the good and bad times together, A lot. When I am ill or recovering, I know I can call her, and that is not because she is single or childless. It is because she is a Fighter too. We understand each other in a way that our other friends do not understand us. She is truly family. We’ll be at each other’s bedsides when we’re dying old ladies. My husband will be present as well. She is like his sister. We’re family.

Resentment cannot grow around her. She smashes him the minute she walks in the door and my stinky, scrubby Labradoodle tries to knock her down in love. It disappears, I hope, when her godson (my youngest) comes running into her apartment door and completely disturbs whatever peace her neurotic birds have finally found. Fighters, if you have a friend like this – keep him or her close. Make them chocolate cake every Friday.

This is what my pal and I have done for each other for years and while it has only made us fatter and less healthy (on the outside), it strengthens our hope and resolve on the inside, and the inside is really all you have, My Dear Readers. If you ever have to have a grumpy nursing assistant shove a bed pan under you or a sloppy spoonful of sugar free orange jello into your mouth, trust me – the inside is all you can lean on in that moment. Best protect it.

So, during this season of recovery, and it’s a pretty good one, I can still feel Resentment pressing against my skull in the late of night, and at the edge of sleep, but I can press him back, because I have been able to build up good things on the inside. I have been blessed with a brain and I have realized how to safely categorize the Well-Wishers. Well-Wisher A – is defined as a person who offers the Fighter all the kindness within their abilities, using words, expressions, Facebook thumbs ups, cards, or the encouraging handshake. This is everything. This is authentic. This will do just fine.

Well-Wisher B – is defined as a person who offers the Fighter all the above, but claims to have offered physical help as well. They may even mistakenly believe that “being there for you” means just saying “I am there for you”. They will want recognition for what they haven’t given and they will create incredible drama for another friend who is suffering, even while you suffer, and he or she will not see how this public open affection for them and the public and open ignoring of you is so painful. He or she just simply won’t understand this dichotomy. Resentment is the child of B. Fighter, you must shut Well-Wisher B out of your mind while you heal and take all their offerings with a huge grain of salt. They are not your Chocolate Cake Friday pal. They are your Fair Weather Friend. Beware. WWB will tear you down and if you’re living on tapioca, that’s demoralizing.

Love WWB. He or she needs your love probably even more than WWA does. WWA is solid and probably emotionally healthy. Take their words and affections and apply it to your wounds. WWB is a rope connected to nothing and if you grab onto it, you will fall alone on the hard ground and they will not respond well to your screams. “I offered you a hand! Stop being so selfish!” they’ll say.

Well-Wisher B’s just don’t know what they are talking about most of the time. They have other gifts and they are probably someone else’s Chocolate Cake Friday Pal even, just not yours, and Resentment gains in stature and vision when you try to change one of your WWB’s into a WWA. It’s a square peg/round hole thing. King Solomon said there is a season for everything. I believe, as a Fighter, that this applies to Well-Wishers as well, One cannot have 20 Chocolate Cake Friday Pals. That would have a horrible, opposite effect. One cannot be completely surrounded by only Well-Wishers either. One needs, at least, one CCFP (I have several – Lenya Papciakova, The Hot Latin Husband, our Hot Latin Children, and my parents).

One will have a few WWB’s in their lives. They are not for times of illness, usually. Sometimes, they surprise. Take those surprises as they come, but don’t bank on them. They are mostly a mirage that will leave you thirsty. I believe WWB’s are God’s way of showing you who needs your prayers as much as you need a good friend. The revelation of their shallowness towards you might be His revelation of their great need, and it could be bigger than yours. Again, true story.

Attack Resentment with prayer and thankfulness for what you have – even if it feels like only a speck. My blessings are huge, but Resentment would have me to believe that my Well-Wisher B’s are the only remedy I will ever have and that I must spend my days and terrible nights chasing them. That’s a lie.

The world breaks everyone, and afterward, some are strong at the broken places.  - Ernest Hemingway

Others become the unhelpful kind of Well-Wisher during a natural disaster. They continue to break, and, Fighters, they stab and grab at you because you have something they don’t have: Grit and Faith. WWB’s are like spiritual zombies. They hurt you with falsities, because they are starving for even a fraction of the reality you have faced and survived. Your strength and pragmatism frightens them. They may even address it in a veiled sort of way – “You’re strong. You’ll get through this,” they say, knowing it makes you want to rip their heads off and….(well, I won’t finish that, because my mother might just read this). Don’t give them a moment of your healing time. But send them prayers and light when you get better. They may, or may not, ever improve. But you will.

If you are reading this, and you’re a Fighter, and you completely understand what I am saying, you’ve already come a million miles. You have the antidote. You have drawn a crowd and drawn the greatest of medical minds to your bedside and you have confounded and astounded them. There is something special about you, and you’ve been places others will not tread until the very tip of Old Age Mountain. You climbed it when you were 16 or 21 and again on your 40th birthday. And your caregivers and your Chocolate Cake Friday Friends are your sidekicks. They are your Robins, Batman, or they are your grouchy, but inspiring trainers, Rocky.

You’re a superhero and all superheroes have a nemesis, and most of them (if not all) are Well-Wisher B’s. Would you stop to help a zombie during the flight from a poisoned civilization, Fighter? Would Superman stop to campaign for a weakening cryptonite industry?

Then don’t stop to entertain the notions of Well-Wisher B. Leave the rope dangling and get better. There are others like you, and we are stronger than most anything even when we’re living on pudding and and walking with canes.

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