Loneliness – the side effect nothing prepares you for

In looking at cancer, I’m also going to look at other disabling medical conditions, because many of the problems faced by cancer patients are faced by anyone facing a life changing illness. A problem faced by cancer patients, and anyone whose life changes due to illness, is loss of friends and in some cases family. No, I’m not talking about the sick person here. I’m talking about people who called, came over, spoke to you in the store, invited you places, emailed you, posted things on your Facebook wall, texted you – to put it in a word, INCLUDED you in their lives. But get a serious illness – I dare you! Suddenly the invitations dry up. Your phone sits for days without ringing unless it’s a wrong number. You go from over 1000 texts a month to less than 200. You still have 487 friends on Facebook, but the direct wall posts are gone. Getting tagged with 21 others – it’s not happening. You find out that someone you used to talk to every day is getting married – make that got married two weeks ago – you didn’t know. The face to face meetings are the worst. You run into someone in the store – the handshake (that would have been a hug before you got sick) is perfunctory, if it happens at all. They ask how you are – your gut says tell them – tell them about the fact that until the doctor changed that last medicine, you puked every day at 11 am without fail, that you no longer have any feeling in your feet, that your hair is gone, that you are in the wheelchair unless you are in the bed or the car, that someone else has to help you shower, because you can’t reach all the important parts anymore, that you can’t wipe your own butt because your arm won’t reach because the arthritis is so bad, that your “cute” short haircut is because you can’t brush your hair at shoulder length anymore, that you are only able to be in the store at all because you took a pain pill right as you were walking out the door, and if you stay out more than 4 hours and it wears off you will be in tears. But you, being the polite person you are, say, “Oh, you know, I’m adjusting to having {insert illness here}, but I’m okay.” I’m going to date myself here – remember the cartoon “Tom & Jerry” – when Tom would have the little angel on one shoulder and the little devil on the other? Well, at the point you say all is well, your little angel looks you dead in the eye and screams “LIAR!”. Do you listen – no. Because you already see in their eyes the deep desire to distance themselves from you. The unconscious step back. The curtain falls. Oh, there are still more words – “I’ll come by soon” “I’ll call next week” “We need to meet for coffee soon”. You both know it’s just words. It’s what you are supposed to say.
You say your goodbyes, and you both know that until the next time you just so happen to run into each other, that’s all folks. The promised visits and phone calls never come. You might get a couple of those group emails again – maybe.

So what causes this phenomena? Why is it when you need your friends and family the most, they are suddenly too busy? When it was all fun and games, they had plenty of time. So what happens? I can count how many people came to see my husband the 75 days he was in the nursing home. 75 days – 2 1/2 months! 12. Take me, my 3 kids, my son-in-law and grandson out of the equation  and that leaves 6. Yep. 6. Since he has been back home no one is breaking down my door, I’ll tell you that much. Oh we have friends – on Facebook. We have seen more of people who live 2 and 3 states away than we have of people who live 2 or 3 miles away. We have a couple of locals who come in on occasion. But most of our care and compassion come from those we have never physically laid eyes on.

You really want to know lonely – get the word “terminal” attached to you! I see it all the time in posts – it’s a common thread. The ones who stick with you are pearls without price. Even with just a life changing illness – the friends and family who stay are your allies – they are your buffer zone. They are the ones who dry your tears, put up with your tantrums, ease your pain, make you laugh. But the longer the illness drags on, the more crap you deal with, the closer you get to the end – the shorter an already short list gets. The online list gets longer. But the hands on list shrinks.

What makes us turn away from those we claim to care about? How is it caring about them to leave them when they need us the most? Time for some soul-searching here. I know all the excuses. I have to work, I have a family, I’m busy, I don’t have time. I’m here to tell you – you have time. If you truly care, you make time. So lets look at some facts – dismantle some excuses.

First and foremost – it is indeed a rare case that a terminal or life changing illness is contagious. You can’t sit next to a cancer patient and contract their cancer. You can’t sit in a room with a lupus patient and suddenly be ill. Nothing used to irritate me more when I waitressed than the people who would stop in the restaurant after a doctor visit and proudly announce to me and anyone who cared to listen that they “just came by for lunch after going to the doctor and getting a shot for that strep throat I got”. Great – its bonanza day – a paycheck, sore feet AND a need for antibiotics all at once. But most people with life threatening or life changing illnesses are only worried if YOU are sick – because in most cases their immune systems are in overload and a simple case of the sniffles can become full-blown pneumonia overnight. So if you are in good health, and want to come by to talk, or show me your new car, or share the pictures of the grandkids – come right on! If you are worried about it being a bad time – call first! Or just call!!! My number didn’t change when my health did. But chances are pretty excellent that you will not leave after a visit with the same illness as me.

Second – are you too busy or are you too scared? You were never too busy back when. You always had time for breakfast and coffee at 1 am. You texted at 10 am – just because. You called to ask if I wanted to be a hitchhiker cause you were going to the mall. But I got sick – and you got busy. Coincidence? No. Fear? YES. You are afraid of my illness. Admit it. You don’t know what to say to me – although last week/month/year, before I got sick, we talked for hours. But now, when my world is consumed by medicines, needles, doctor visits, and all the baggage my illness brought with it – you have nothing to say? Let me put this out there – I want to hear about your world! Your life! I want to hear about how that woman – you know the fake blond who showed up for karaoke every week and couldn’t carry a tune in a bucket – fell off her 5 inch stilettos and landed in lap of the drunk guy who drank whiskey and Sprite? No, I couldn’t be there for whatever reason – but tell me about it! I want to know! Just because I don’t have the money to go out all the time anymore, or the energy, or I can’t drive myself anymore – I still want to know! Include me! For heaven’s sake, don’t think telling me these things will depress me! I might even surprise you by going with you somewhere! You never know. Because I’ve pulled back too – maybe you need to pull me forward! You know, I might be self-conscious about being in a wheelchair, or having to use a cane, or having to wear a doo rag to cover my hair loss. I might be concerned that someone will be offended if I happen to have a choking fit or a nose bleed. Be my friend – help me! Don’t make me feel like I belong in a leper colony! If we go somewhere, and I get in trouble, it’s not personal, trust me. Its part of my illness, but please don’t make it define me. *** Big Big Concept HERE*** IF YOU ARE OUT WITH YOUR FRIENDS AND YOU SEE SOMEONE WHO IS OBVIOUSLY HAVING A BAD TIME, HAVE A HEART! YOU WILL NOT HELP SOMEONE WITH AN ILLNESS FEEL BETTER BY SNIDE REMARKS, SNICKERS, AND THE “PEOPLE LIKE THAT SHOULD STAY HOME” CRAP! DON’T PRETEND YOU DON’T KNOW WHAT I’M TALKING ABOUT!!!

Third – and this is the hard one – don’t let me push you away. I might be having a bad day. I might simply be a private person – I don’t want you to see my “warts” – and in the case of a serious illness, these may include, but not be limited to, throwing up, nose bleeds, gagging fits, loss of control of bodily function, drug induced falling asleep at the drop of a hat, inability to pay attention, seizures… the list is endless. So, no matter how much it absolutely creeps you out – try not to show me. If I see that I make you uncomfortable, I will naturally pull away. Believe me, as much as I don’t want to walk this road alone, in my gut I would rather do just that than make anyone around me suffer – that’s just human nature. My other knee-jerk, gut reaction is to shut everyone out. I hate what is going on with me, I hate the limitations I now have for whatever reason, and I don’t want to push my limitations on you. It’s just easier on every one if you go on without me – that way I’m not a burden. Problem is, to someone who truly cares, you aren’t a burden. Your illness may be a burden – but you aren’t. The person with the major illness finds themselves apologizing for everything. They are dealing with a complete life change. They can’t do things like they used to, or if they do they pay for it later. Some of them even bulldoze through all the pain and crap and look like nothing has changed – and then they cry themselves to sleep every night.

Most important – and this is huge – don’t give me platitudes.  Sorry if this offends anyone – don’t blow sunshine up my ass. When I tell you how bad my illness sucks, and that because of my illness I just had something repossessed, or can’t make my bills, or can’t afford groceries, or I got denied for disability, or whatever else I may bitch about – agree with me that it sucks, and give me support – but not sympathy. And for crying out loud don’t tell me you understand. I’m stomping my own toes here. You may have had similar experiences – you might know someone who has. But you don’t understand. I don’t expect you to understand. I am telling you because I need someone else to know why I can’t stop crying, I need someone else to know why I am so short-tempered, I need someone to just give me a hug and be there. A good friend posted yesterday sometimes all you need it a hug. I’ll go it one step farther. Sometimes you just need a hug and a listener. Just because I seem to complain to you – I don’t expect you to fix it. You already are helping me by just being there and acknowledging my pain.

Yes, this “blog” is a writing teachers nightmare. I have gone from first person to third person and back again so many times your head is spinning, but I hope it hits some nerves. This ties in with my “people are not disposable” post. They aren’t. Are you one who has “disposed” of a friend or family member when they needed you? You know what – life altering illnesses exist. They WILL touch your world – like it or not. You can do two things – adapt to them, and those who suffer from them, or run. I have some friends who call this the ostrich syndrome – people who stick their head in the sand and pretend the bad things don’t exist. Maybe this post is for those ostriches – get your damn head out of the sand – there are people you claim to care about who need you. Or maybe this post is for those who claim to care, tell those who are sick “if you need ANYTHING, call me” and then always have a reason or excuse why they can’t help. Or maybe it’s for those who are ill – for the cancer patients, the diabetics, those with lupus, those with arthritis, those with whatever disabling condition. To tell you all – I may not have the same illness as you do, I may not care for someone with the same illness as you do, but some things transcend that. I really do know – because no matter what the infirmity – we have common ground. All we want is some semblance of a quality of life, and some compassion. Because guess what, folks? You think MY illness scares YOU? Just turn it around – how scared do you think I am?

Thanks for your time in reading this today – it’s not my normal form, just something I had to put out there. If you so desire, please give me 5 more seconds and share.

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This entry was posted in awareness, cancer, death, humor, life, major illness, malignant neoplastic disease, Uncategorized and tagged , , , , , , , . Bookmark the permalink.

5 Responses to Loneliness – the side effect nothing prepares you for

  1. wranglersrear says:

    I cannot tell you what this post means to me…..it is completely right there with ” things that urk me”……….and u hit it right on the head !!

  2. Marylevert says:

    Oh my Lord,, you did it you did it…I tip my bonnet to you…welcome to our world people…I have found this to be so truthful …and in hopes others will take a moment to feel …I have found even in groups…rather it be prayer or other…sometimes clickie either you have to have known someone before…be louder than the next guy…..how smart you are….be witty say a prayer better ….even then some walk away…..or maybe they just don’t like you period…Or maybe you have said the wrong thing in a moment of hurt…and have been judged far to soon for anyone to get to know you…..LOL or your own hang ups….because your world is so small….And then again there are some beautiful people in this world ..who do go the extra sentence to welcome you ,,,makes you feel all warm and fuzzy….I thank you for this blog…am sharing ….

  3. I do not know whether it’s just me or if everybody else experiencing issues with your blog.
    It seems like some of the text within your content are running off the screen. Can someone else please provide feedback and let me know if this is happening to them too?
    This might be a issue with my browser because I’ve had this happen previously.
    Appreciate it

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