words

[lilyjohn]

Sunday in church the pastor's wife was talking to me about her Chemo. I knew everything she was talking about. That got me to thinking about words. In the last 4 years I have learned so many new words. Words that I may have heard but never really thought about or knew the whole meaning of. Words like Cancer and COPD and Unbalanced blood gases as well as Accute Respiratory Accidosis. Then there are other words, Vicodin, Hydrocode(the same thing) Morphine, Ativan and Xanax, Oxycodone, Paxal, Remeron and all of the Chemo drugs. The hardest are words like Death, Panic, Anxiety and Euthanasia. So many of those words I got to know intimately. They still haunt me every day.

There are other words too. Words that I knew the meaning of but never realized the depth of. Those are words like Love, Joy and Fulfillment. There are others too like Hope and Compassion and Patience. Somewhere in there are the words Advanced Directive and DNR. I knew about those words but they all seemed like something distant that had nothing to do with me. Then Johnny and I were together again and I learned the full meaning of Love and Joy and Hope.

After he died I discovered how deep Heartache can go and Dispair and Helplessness along with Hopelessness. Just words. How could simple words become so much a part of my life? I wish I could go back to a different time before I learned so many of those words. God how I wish I would never have had to learn them

Now in my work I have discovered other words. Words like Indifference and Dementia as well as Alzhiemers. Our lives are made up of words. We hear them everyday but until something happens in our lives that is so tramatic we just take them for granted. Oh to be so uninformed again

Now I live by other words. Those too are words that I have heard all of my life but now they are words that I cling to. Words like Afterlive, Eternity and Reunion. God and Faith have new meaning for me too. Without these words I doubt that I could ever face the nightmares that the others cause me.

Does any of this make sense to anyone? Has anyone else stopped to think of all of the words that just roll out of your mouth that you would never have really gotten aquainted with if it had not been for that monster of a word Cancer?

[Ann]

Lil...I have to tell you that I have thought about this same thing...words. Right after Dennis was diagnosed, it seemed that my vocabulary completely changed. Suddenly, I knew way more than I had ever wanted to know about cancer. Many of the words you mentioned in your post became a part of my everyday life. Now, it seems my life is built around these words...peace, hope, strength and love. The peace comes from finally being able to accept the fact that God had a purpose for taking Dennis from this life. I don't know what this reason was but I can accept it (on most days). My hope is that each tommorrow will be better than each today. My strength is knowing that I was strong enough to survive after losing Dennis. I never thought I had the inner strength to make it. And last but least....love.....for family and friends that have been there for me and helped me survive.

[melindasue37]

You asked if your post made sense....boy, does it ever. It's ironic, and like Ann, I too had thought about this same topic just the other day. It was after someone had asked a question about my Mom. Before even thinking words like tarceva, chemo, ct scans, blood levels...etc..came out.

It hit me suddenly that less than a year ago these words were all foreign to me. I wish I wouldn't have needed to become so familiar with all the cancer words. But, yet, I can't seem to get enough and am always trying to learn more and more.

Thanks for the interesting topic Lily.

Melinda

[nancy c]

Lil, yes it makes sense! I understand completely. I am a nurse, so alot of the words I was familiar with. But the phrase "quality of life", now that's what changed my whole outlook. When the oncologist talked about quality of life, when Mike was first diagnosed, I didn't pay attention. Why was he talking about quality of life, for god's sake? (Mike was up and about and still golfing!) When Mike was going thru chemo, I didn't pay attention. (He was sick some days and then ok some days) When Mike was so very ill, his last 2 months, when the oncologist said "quaility of life" I fricking paid attention!!! I never in my life thought I would have to address "quality of life" for any of my loved ones. I was a nurse! I took care of people and their families had to deal with "quality of life", not me. This is a long journey, and not a pleasant one. But, now I cherish life and "quality of life" more than ever. As, it has hit me right in the face. God bless you, Lil, you are loved, Nancy C

[Treebywater]

I do understand. I've had thoughts along very similar veins. I never wanted the vocabulary I've become so accustomed to. I never wanted to say the sentence, "My Mom died in July." Those were words I never thought would be strung together.

And now I find myself wanting to stay kind of close to some of those earlier words, because somehow that makes me feel closer to Mom.

Anyway. I do understand. And you put your thoughts about words into words very well.

[gerbil runner]

What a beautiful, though-provoking post. Thanks for sharing.

[Maryanne]

Hi Lil,

Yes, it makes so much sense, but that is life and death unfortunately, But I go for the love, hope and faith anytime.

But ya know Lil, all those words, the good ones the bad ones, the ones that gives us hope and peace, and hurt and anger is all part of our makeup of very being.

You know these words, the ones you wished you never knew, but now these words can help patients who have Cancer turn to you because you know the meaning and can help them.

But as far as the Alzhiemers goes, they have no clue of the meaning of words, bad or good. That to me is devestating, not to have memories of good, bad, illness, treatments, antidepressants, belief in religion, hope, freedom, freewill, pain, suffering, losing a love one, movies, happy occasions, news, disasters, funerals, babies, FAMILY etc,

Then words are a blessing not matter what, especially when you don't have them anymore.

My mother-in-law and I were like sisters. She has alzhiemers for 7 years now. I miss her soooo much, it hurts so much. If she could only remember her lifetime full or words...

Take care Lil, I hope life is getting better for you, now that you are working. But I know you are working to hard and too many hourse. You must take some time to just take a long bubble bath, listen to some good mood music and read a good book. Or just go and get that choclate fudge sunday. Get a facial, nails and hair done. You need some feel good time.

Maryanne

[lilyjohn]

I want to think all of you for your comments. I wondered if I was the only one who thought of such things and now I know that I am not. There was a time not too many years ago when I would never have mentioned those thoughts. I guess that is just one more of the changes that I have gone through in the past four years. Knowing all of those new words are not the only changes in me. I think that all of us change when we have a tramatic experience. None in my life has been as tramatic as loving and losing Johnny again.

I know that I have really changed. For years I kept all of my deepest thoughts and feelings to myself. I had no one that I felt comfortable sharing them with. Johnny changed all of that. I know that deep down even tho we had not spoken in over 40 years I always knew that he still loved me. Once we started talking again my life changed for the better. He gave me a great sense of selfworth, something I had't ever had. That was just the beginning.

Through him I learned that things that we think important are not always the real important things. He taught me that it is just as important to take time to just be as it is to always be doing something. His love helped me grow into a person I like much better that the one I was for so many years. So many changes have taken place in my life. I don't just mean physical changes like being alone. I mean inner changes in my thoughts and attitude. I have always thought of myself as compassionate but in the past few years I have learned to not only feel compasion but act on it. I think that is the reason I love my job so much and why I am very good at it.

I have learned to value people. All people no matter who they are or where they come from.Johnny believed that there is good in everyone, you just have to look harder to find in in some. I have my likes and dislikes like everyone else but I know that nothing has more value than people and above all love for people. I guess it was just natural for me to become a caregiver because I have been taking care of people sense my mom was injured when I was 15 but the people that I have learned to value so much are the ones who inspire me. Had I not seen the indifference that Johnny recieved from those who should have cared enough to really help him I doubt that I would have realized just how many people who are either old or sick are emotionally neglected. The sad thing is that most people just don't realize how much impact their emotional neglect has cost those that they are supposed to love.

I can't really judge those people because I know that most are really good caring people and just don't realize that they are doing something wrong. They just don't know how to face those who are growing old and they don't know what to do with them. Often they are certain that they are doing all that can be done. I can understand that. It is heartbreaking to watch as people who have lived long and productive lives and can no longer funtion it the everyday world. Many can not remember from one moment to the next what they just did. Most people don't want to face the constant reminder that someday that could be them. I need that reminder. As painful as it can be I have to be reminded so I can be the kind of person that Johnny knew and loved. That is what makes my life worthwhile.

Sometimes I feel like an entruder in the lives of these people. I know that the work I do with them allows them to be at home longer with their own possesions and memories. I know that is important because those memories are all that most of them have. They can't make any new memories. Still I can't help but wonder if they knew that I was a witness to their deterioration how they would feel. Mercifully most of them live without realizing what is happening to them. They live in a state of ignorant bliss.

Maryanne I want to thank you for your concern for me. I have been working very long hours but that is about to change. I don't drive at night at least not this mountain road comming to my home. So next week I start working shorter days. I will have more time at home for myself. I feel that I need that. There are times I really feel the lonliness or maybe I should say the aloneness but for the most part I am content if not happy. So many things I wish that I had someone to share with but the truth is the only one I want to share with is Johnny. I have tried but it just doesn't seem to work. A good example is what happened Sunday.

The man next door to me lives alone. He has somethings in his past that are very hard to live with too. Like many of my neighbors he has helped me from time to time with things I just can't do alone. Sunday afternoon I was finished with my calls to my kids and church was long over and still I had the afternoon ahead of me. Normally I would welcome the time alone but Sunday I just wanted someone to talk to who could hold a normal conversation. I don't get that often.

I went to visit my neighbor and on the spur of the moment I asked him for dinner. I just couldn't face eating alone again and I know that he just grabs something and seldom cooks. I fried chicken and made mashed potatoes and corn with salad and fresh leomonaide. I enjoyed cooking for someone other than myself and he seemed to enjoy the meal and conversation. The problem is that when our meal was finished I fould myself wishing that he would leave. It had nothing to do with him. He is a very nice man. The whole problem is I can not look at a man and not compare him to Johnny. Everyone pales beside his memory. So I guess I will just keep on with my flowers and my work and when the cold comes I will tuck myself in with a quilt to sew or an afghan to crochet. A good book is always something I look forward to as well.

I would never have thought that I would change so much. My priorities have all changed and somehow I can't help but think that dispite being alone that is a good thing. Even as important I think that Johnny would approve.

How quickly my life changed. In 4 years I have found my place in the world. It is not a place that I would have ever dreamed of or expected. Johnny gave me many gifts such as love, laughter and joy but the greatest gift he gave me is enjoying being myself. Maybe for the first time in my life. Thank you my love thank you from the bottom of my heart!

[Ann]

Lillian...I'm so glad that you have realized that you do need company from time to time. I know that for a long time, you wanted to only be alone and the only company you wanted was memories. You're doing great gal!!! I'm so very proud of you!!!