Hi Kittens! Some of you may already know this; however, last weekend I was asked to give a key note speech at a light fundraiser. I was so grateful to receive the call, and even happier that I was able to be there at the last minute for them. Their original speaker had a family emergency and was no longer able to make the event; so the event coordinator called me.
The coordinator of the event, a lovely lady by the name of Bethany, provided me with a transcript of my speech; so I thought I’d share it with you today. The talk was about an hour long, so don’t be surprised if this takes you some time to read.
To provide you with a little bit of background, the keynote was part of a fundraiser for “first line” support of Terminally Ill patients; lovingly referred to as Warriors. First line of support usually means significant others and immediate family. Although, at times, close family friends are included in this definition. There were about 200 people at the event, from all walks of life. As I stepped into the room to prepare for my talk (until I arrived, I wasn’t sure exactly what “topic” they wanted me to cover – so I was prepared for just about anything); I was reminded that Terminal Illness (whether it’s cancer, renal failure, heart disease, or any other TI) doesn’t discriminate between race, sex, religion, age, or sexual orientation. It effects people from EVERY part of the world, in every group imaginable.
Bethany requested I discuss what it’s like to be a first line of support, as most of the people in attendance had a loved one recently diagnosed (within the last three months). So that’s what I did.. from the perspective of the Warrior, and some best practices around being “THAT” kind of support .. the best kind for the Warrior. So here it is, Kittens: The transcript from my speech (FYI – I added some punctuation and parenthesis to make things a bit easier to read. Otherwise it sounds like I’m babbling more than usual).
Bethany: Ladies and Gentlemen, it is my pleasure and honor to introduce to you our key note speaker. She is a Warrior if I had ever met one, battling one thing after another with a smile on her face and the ability and willingness to put everything aside to help others. She works full time, raises a daughter on her own, does a variety of different types of counseling and volunteers at a charity haunted house. She’s the person we all strive to become and why we are here – to learn more about how to be supportive of those we love who are sick. May I present to you: April-Mae Davis
April-Mae: 4 Terminal Illnesses. That’s my most recent count. I send up my personal requests every day not to add to that, but I won’t hold my breath, apparently someone thinks I need a challenge. Just to give you the quick run down, my four are: Leukemia, Breast Cancer, Congestive Heart Failure, and Renal Failure. I have a couple of other smaller things wrong with me that complicate matters, but for the most part, those four are why I’m here today.
You’ll notice I didn’t start right away with the typical introduction of “Hi my name is”. There was a reason for that. When you are diagnosed with a terminal illness you lose part of your own identity. As Robin Williams states in his movie Patch Adams, we become “that interesting cancer patient.” Or, in my case patient #99-RD283-D. That’s my case number and what I’m referred to in medical journals and teaching manuals. Part of that is Federally regulated and part is because it’s easier not to get emotionally invested in people when you don’t use their name on a regular basis. So, before I get into the meat of things, please allow me to tell you a bit about myself.
My name is April-Mae Davis; although I’m more commonly known as Trinity. Consider it a nickname of sorts. All my friends refer to me as Trinity and as we already have so very much in common; you’re already considered friends, so please feel free to call me Trinity. My first diagnosis came somewhere around 13 years ago. I was feeling a bit fatigued and run down, usually with a low-grade fever and a whole lot of bizarre bruises. However, I was a new mother of a then 3 year old and it was the middle of Summer. Of course I was going to be tired, I was running after a bundle of toddler with more energy than the Energizer Bunny. I’m a redhead; so the sun and I are mortal enemies and I had a fever due to sunburn. I was born a klutz – constantly bumping into things and falling… therefore the bruising.
Like most of us, I had an excuse and reason for every symptom. After all, I wasn’t really feeling all that bad. At the insistence of my Mom – ok mostly it was just to make her stop worrying so much – I scheduled an appointment for a physical. My regular doctor was on vacation, but her colleague was filling in for her. I didn’t see the big deal, as it was just a physical. As I went into the office, this new Doctor (who, by way was more supermodel than doctor) took my medical history and reviewed my symptoms and reason I was there. She did a couple of quick once-overs of my body – checked the bruises and grabbed my hand. She inspected the left lobe of my hands – the pad below your thumb and above your wrist – and said the words that will forever change my life. “You have Leukemia but I don’t know what kind or how bad it is.”
OK ..hold on a minute. I was at this office for a physical – and suddenly you tell me I have CANCER? How dare you?!? Turns out this colleague of my normal practitioner is a Hematology Oncologist – a specialist in Leukemia. Don’t try to tell me things don’t happen for a reason. This woman was supposed to see me and she’s been my primary Doctor ever since.
And so started my journey – I’m not here to tell you all the gory details – that’s covered in a completely different type of talk; but I’m happy to discuss it with you later if you’d like. However, I will give you the high level of what I’ve been dealing with for the better part of my adult life. Turns out, the Leukemia was the type that is very rare in Adults, and a type the Doctor’s weren’t sure how to treat. As Doc said to me in the beginning “treating you like we would treat the other patients would be like giving you a baby aspirin for a migraine, just not going to work.” After my initial diagnosis – I was given 6 months to live without a viable treatment procedure. Thank Isis for practical medical research – it has saved my life more than once.
So, here I am 13 years later – having survived multiple rounds of chemo therapy, radiation, cobalt, countless surgeries, 2 total stem cell transplants, cardiac failure, flat-lines, total renal failure, the loss of eyesight on one eye, kidney dialysis and countless other medical treatment and medications. I am a Warrior.. and I’m here to help you help your Warriors.
One of my mantras about the support system is simple. A terminal illness is harder on the support system than it is on the Warrior. That’s because there isn’t any ‘right or wrong’ way to help a Warrior, and everybody’s situation is different. There is an inherent guilt that comes with not being able to “make it all better” and help as much as you want to. There is no fixing it for them, and most of the time, the Warrior will want to do more for herself than she will want done for her. This is our way of trying to stay in control. The number one rule and the top advice I can give you is to BE PATIENT. Try not to get too frustrated with us and our stubbornness and hard-headedness. We are trying our best; just like you are.
When someone is first diagnosed with a Terminal Illness, it’s a devastating and horrible time. A million things go through your mind all at once. Things ranging from “Why me?” to “I don’t have the money to cover a funeral”. We worry about who is going to take care of our plants, our pets, or house and our kids. We feel guilty for making our family and friends worry about us. We stress out over medical bills, insurance form, doctor’s visits, and how we are going to pay the mortgage if we can’t even get out of bed for work after treatment. We freak out about when pillow will be covered in hair and when we will start seeing a ghost staring back at us from the mirror. We start the research, the worrying, and the treatment all at the same time. We need to talk to someone about what’s going on .. and that’s when the Warrior will go to you for the first time. This is your chance to show them what kind of support system you can be for them. It’s important to keep in mind that no matter how scared you are about everything that’s going on ... your Warrior is probably more scared. It’s their mortality they are facing and it’s a frightening place to be. So, when your Warrior wants to talk about their diagnosis, what’s happening at the appointments, the positives and negatives of a particular treatment – listen to them. Don't show them that you are mortified about a needle being drilled into their thigh bone, don't shrink away when they tell you that they have to have a catheter stitched into place for weeks on end. Provide your advice when you can, and let them cry. Don’t act uncomfortable, or try to make light of the situation –this early in the game, very few Warriors are ready to joke about what’s going on in their lives. Joking about it before they are ready will instill a concept of “you don’t want to take this seriously” in their head, and they will think twice about going to you the next time they need to talk.
Getting through the “diagnosis” phase of an illness can take anywhere from a week to several months. It depends on the illness, the extent of tests that are needed to accurately diagnose the illness, the tests needed to determine viable treatments … and the list goes on and on. Most often during this diagnosis phase of an illness, the Warrior will go through what we call “The Big 5”. It’s the five stages most people relate to death or grieving; though in practicality getting a diagnosis such as this is a form of death. Life as the Warrior knows it is over, and you’re suddenly dealing with a whole different life. We go through denial “This is NOT happening to me. Maybe the tests are wrong..they have false positives all the time. This is just a dream, I’ll wake up and be able to brush this all off in the morning”. Then the anger “Insert your favorite Sailor Terminology here. Why ME? Why NOW? I have so much to live for. Stupid environment, stupid carcinogens in my food.” There is a LOT of anger to process with an illness…. Mostly because things are suddenly veering out of control and there’s no stopping what’s going to happen. Then, of course, we bargan. We pray to our favorite Deity and baragain with our Doctors. “if you take this away I promise to be a better person.” Or .. because we are trying to gain some semblance of control “if I went to the Doctor’s sooner, they would have caught it before it got this bad.” We go through a stage of depression; where every thing is terrible and all we want to do is lie down and die already. Why bother going through anything when the treatments are usually worse than the illness? Why put myself and my family through all this? I'm going to lose my quality of life, I won't be able to do anything like I used to. I wouldn't force my dog to go through this, why am I expected to? There is also the stage of depression where we try to figure out how to say goodbye. After all, it’s called a terminal illness for a reason, right? Finally, we find Acceptance. Acceptance of our illness, or our new "life". Acceptance that the world and our lives are forever changed. Acceptance that our life span isn't measured in decades, but in years. For some Warriors it takes a while to get there, and some never get there at all. I was lucky; I found my acceptance very early in the process. Part of that is just who I am ..I accept the things that I can’t change and find a way to use them to my advantage. For me, it’s using my experiences and knowledge to help others through these processes.
The best thing you can do for your Warrior is NOT to try to push them or counsel them through the Stages. They will get through them of on their own time, with help from you -- being there when they need to talk, or cry, or just sit in silence. Remember, you are not a trained counselor - my apologies for those who are - , you are a support system. Leave the counseling to the experts. Of course, YOU will be going through these same stages, so if you find yourself overly frustrated with life, try to recognize what phase you might be dealing with; that can help out a lot. And, of course, counseling can help you as well.
I tell everyone I can that there is a difference between therapy and counseling. Therapy is where you go to someone, spill everything and all they do is listen. It’s helpful for a lot of things, but to me counseling is a much different ballgame. Counseling is where you go to someone, discuss what’s wrong in your life, what you’re having a hard time dealing with and talk it through together with your counselor. They can offer advice and guidance based on their personal experiences and help you get through the hardest of times. Trust them, and they can take you a long way.
Soon enough you’re going to start ‘noticing’ the illness part of your Warrior’s TI. Whether it’s the illness taking its toll, or – most often – the treatment’s effect on the Warrior’s body. You will notice that they have less energy, are easier to anger, or are in pain. There’s nothing you can do about any of these, things, so the best thing you can do is stop saying “what can I do?’ The answer will be the same every time “Nothing.” Because, in all honesty, there is nothing you can do to relive the pain, or the radiation burns, or the uncomfortable-ness of a catheter. Instead, sit with the Warrior and play a game, read a book, watch a movie and just co-exist with them. If they will let you, clean up the house for them, take out the trash, go grocery shopping for them. I say if they will let you, because there’s a pride thing that happens with the Warriors. WE want to be able to clean our own houses, do our own grocery shopping, take out our own trash. We don’t want to have to depend on others to do the things that everyone else takes for granted. So we get stubborn about it. Sometimes we let up, but if we say “no, just leave it” that’s your cue to leave it. Change the subject, and allow the Warrior their pride.
Another piece of advice I offer is to not argue with the Warrior if they want to do something. Imagine your Warrior being up all night throwing up after a round of Chemo and in pain from treatments. In the morning, they shower and get dressed and start out the door. You ask “Where are you going? Do you have an appointment today?” Their response is “No, I’m going to the mall.” What do you do? You know the best thing for the Warrior is to stay home (where there are less germs to interfere with her compromised immune system) and rest. The worst thing you can do is tell them not to go. “You should stay here and rest” is the last thing we want to hear. We are tired of being sick and sick of being tired. We want a day of “normal” even if we are completely bald, and look like something out of The Walking Dead. So, unless there are specific instructions from the Doctor NOT to do something, grab your shoes and hit the mall with them. They need a sense of normalcy now more than ever. There comes a time where the Warrior will push themselves to the very edge of existence, just so they can feel like a part of the living world again. You have to allow them to do this, as difficult as it might be for you. Remember, it's not about YOU and what you think is best, it's about supporting your Warrior and helping them live a life worth living.
OK Kittens this is about ½ of the speech that I did… I figured I’d give you some time to digest this part and I’ll post the other ½ in a couple of days. As per my usual speaking engagements, I give some time for questions and answers…and this is not any exception. If you have any questions, please just ask me; I am more than happy to answer them. You can ask in my Facebook page, here on my blog, or in person. I’m an open book when it comes to my illnesses and my treatments. I do that for the very fact that I want to help others understand the TI Warriors and how to help them live life to the fullest. Even when it’s close to the end and you can smell the gravesite.
I love you all, please be kind to each other; you never know when your last negative word to someone will be your last.