Warrior: A person diagnosed with a Terminal Illness fighting to live and helping others to realize how precious life is.
TI: Terminal Illness
Hello Dearest Reader
Have I told you lately how much I appreciate you? Probably not, so let me start with that. YOU are the reason I write, and keep writing. It is YOU that help me look for things in everyday life that inspire me to become a better person, to help others, and to – in turn – help you. What you do with the lessons I provide and the personal challenges I offer are completely up to you. Whether or not you choose to share your experiences with me, or with others, is your choice. I just hope in the end; you obtain what you are looking for.
With that being said; I need to apologize to you in advance for this particular blog entry. I’m breaking one of my own rules – never write (ok.. technically never publish) when I’m too tired, in too much pain, or not in the right frame of mind for whatever reason. However, sometimes it’s the only way to convey a message... so it’s with that broken rule I bring you today’s entry. I might not even publish this, and if I do… it may not stay published for long. Then again, you never know, maybe I’ll be brave enough to keep it up – only time will tell, I suppose.
It’s currently 11:30 am on Saturday morning, and in the past 4 or 5 days I’ve spent more time IN the hospital and doctors offices than I have out of them. In fact, as we speak, I’m sitting in a hospital room, borrowing a laptop, to write this. It just plain sucks, but that doesn’t change the reality of things. Bitching doesn't change anything either, which is why I go to great lengths not to do it. Although I am here as a patient (sometimes a “good” one… most of the times a pain in my Doctor’s ass), I try to take on another role as much as possible – counselor. I do medical counseling for terminally ill patients (both the newly diagnosed and the long term Warriors) as well as their families and support system. It’s just as important to counsel the support system as it is the patient, because without your support, we would be aimlessly floating around waiting for the end. Though sometimes that’s what we do regardless of who we have around us.
We Warriors fully appreciate the support systems we have (family, friends, animals, doctors, counselors, etc.) and we wouldn't be half as successful as we are without you. However, I feel compelled to help the support system people be as supportive and helpful as they can be; especially when things start getting bad… or when the end of our lives near.
It’s interesting, how we as human beings process things. Almost all of us know (and if you read my blog on a regular basis – even if you haven’t met me in person – you KNOW) someone with a terminal illness. I think most of the people that read my entries have someone close to them with a TI (that’s slang for Terminal Illness, kittens). You've found your way to my page through knowing me, someone who knows me, a Doctor, a Warrior, or some other version of the support system. Maybe you stumbled upon me during your rounds on the blog-sphere and you liked what you read … and keep coming back for more. Either way, if you read my pages, then you know me… so you’re now in the company of the masses who are a TI support system.
When a loved one is diagnosed with a TI; or when we meet someone with one; they very rarely “look and act” sick. The wonder of modern medicine; the treatments and medications we take help us keep as active and “healthy” as possible. There are, of course, exceptions to this rule as certain treatments take us closer to the edge of existence than others. However, most of the time; it’s easy to “forget” that our loved ones are sick; especially terminally sick.
So, we help our TI loved ones live as fully as we can and most of the time we ignore their illness. Sometimes it’s at the Warrior’s request (“I just want to pretend that everything is normal today”). Sometimes it’s a coping mechanism for ourselves (“If I act like she’s not sick, then it will be easier for me to help her”). Sometimes we do it without even realizing… it doesn’t really matter what the reason is. The fact of the matter is, most of the time we over-look the illness and help the Warrior feel as “normal” as possible. While this works most of the time, sometimes the Warrior needs to accept, and in turn needs our support system to accept, the fact that we are NOT normal, and that we are sick.
Warriors know, and in most cases, we have accepted the fact that our lives are shorter than everyone else’s. And, again, in most cases, we have accepted our own mortality and impending end of life in this time and place. I know I have; as have most of the people I’ve counseled. Our support systems…not so much.
This is where we get to the meat of things, kittens. It’s those days that the Warrior doesn’t want to “pretend” that life is wonderful and that they are normal when we need you the most. We need that person that can identify that we are not “OK” and is willing to sit down, let us break, and NOT break in return. We are not looking for someone to badger it out of us, we need that certain someone that just knows, and sits patiently and waits for us to break. Sometimes, no matter how strong we seem, we need a rock that’s a little bit stronger than us.
The Warrior should not be counseling their support system; but I’ve seen it so many times that it’s become the normal. If we break, and you break .. then we end up playing the role of the counselor “It’s OK .. don’t worry we’ll get through this. I’ve gotten through worse” etc. Here’s the cold hard truth for me: If I have had to counsel you through my issues once, you will NOT be my rock. I don’t have the courage to break in front of someone that I’m afraid won’t be there to help me find my way back to myself. It’s just the truth; and I’m sorry that it has to be that way – but it does.
We also have limitations and boundaries that we don’t always explain well. Maybe they are emotional limitations; sometimes we don’t want to tell you EVERY little detail of our illness and our treatments. Whether that’s because we don’t want to re-live it or the fact that we don’t want to share something so very personal (when cameras are going in places that are not meant for eyes to be… we don’t always want to discuss it). If we say something like ‘same old thing’...that might be a hint that we don’t want to talk about it further. If we don’t necessarily tell you all the details right away; it’s not because we don’t want YOU to know; it’s probably because we don’t necessarily want to discuss it.
We also have physical limitations that we don’t want to discuss. Some are obvious – radiation burns, hair loss, loss of limbs, etc. Some are not so obvious. One of mine is hugging/physical contact. I’ll be the FIRST to admit I’m not a very touchy-feely person; I like physical contact from certain people all the time, but from most people very rarely. However, it’s more than that – lately almost EVERY day I’m in a massive amount of physical pain (that’s what happens when you’re at war with your own body). I’m not talking about being uncomfortable; I’m talking about downright pain. The kind of pain that would send most people to the hospital or to a corner to curl up in the fetal position. I’m on painkillers that don’t really help; and when it’s unbearable for me; I take Morphine – unfortunately it only takes the edge off. Therefore, hugging can be a very painful thing for me. You know what.. all of this is fluff on a rabbit’s ass. The fact of the matter is simple… we have boundaries and they exist for a reason….and if you truly loved us we shouldn’t have to explain the reasons to you.
Yea, this is getting a bit heavy, isn’t it? Sorry about that – I warned you in the beginning :-p. Interested in how this came about? Why this blog? Why today? Well it’s a culmination of my last couple of weeks, but moreover it’s because of the movie that is just now finishing on the TV I’m watching. The Haunting in Connecticut. It’s an interesting story about a teenage Warrior who accepts his own imminent death and risks his existence (both in his current life as well as his potential after-life) to save his family. I won’t get into the intricacies of the movie... but one particular scene is what prompted me to write this. Matt (the Warrior) is talking to his mother who is having a very difficult time with his new treatments and how they are making him feel and act. He says ‘Mom, I just want you to know that if I …” and she cuts him off by saying “YOU WON’T” and walks away. He finishes is statement, mostly to himself. “if I die, it’s not your fault”. THIS is pretty much what I’m talking about. WE WARRIORS ARE GOING TO DIE. Just like every other human being, pet, animal, plant, and bug on the planet. Yes, our death seems closer than everyone else’s; but it doesn’t’ make it less true. I’ve tried to have these conversations with people in my life… “when I die” “why can’t this be on MY terms”, etc... but most people just don’t want to have this conversation. In fact I get cut off in the same manner as Matt did “You’re NOT going to die. Don’t you dare, we need you here. Your work here isn’t done yet.”
Warriors need to have these conversation with our loved ones; but most of our loved ones just don’t want to discuss it. When we are responded to with the above statements or similar ones, we are forced into shutting up out of guilt. We don’t want to hurt the people we love, and we know our death will hurt them. So, in trying to talk about it, we are hurting them. Therefore, we don’t talk about it. This, by the way, is a very difficult thing for a Warrior to deal with. We already feel terrible for putting our support system through hell watching us be sick, act sick, look sick, not have enough energy to do things, etc. But to know that our death is difficult for them is VERY hard on us. When we don’t have anyone to talk to about the inevitable, we tend to pull away from everyone in our lives and just deal with things ourselves.
As I said before, if I’ve gotten that “NO” response from you, I won’t bring it up again. That doesn’t mean that it’s not still on my mind, or that I still don’t need to talk about it; it just means that I’ve recognized that you’re not the person I can discuss it with. Not that I don’t love you and not that I don’t appreciate what you do for me, it’s just a personal truth and those are very important to each of us.
Hmm.. have I babbled on long enough? I think so. Have I gotten across my point? I’m really not sure; but I hope so.
For those of you that I've leaned on – thank you for being there for me; even when I know it was difficult for you. For those of you that recognize that you might have done the “NO” thing to me, or that have recognized that I’ve counseled you through my illness … thank you for being you …and for sticking around even though I’m impossible to love at times and difficult to deal with.
I love you .. each of you dearest Readers. More than I tell you, more than you know.