Dianne's Blog
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Recovery Con't.
One of my best days during recovery was when Dad brought home a shower chair. He had borrowed it from an elderly lady at the church. You have no idea the freedom this gave me! I could now wheel myself into the bathroom and manuever by myself onto the chair from the wheel chair. I could finally bathe alone! Now, it was still a little complicated, both feet had to be out of the shower, but I had running water hitting my head for the first time in months. I know cried as I sat under the water just from the pure joy of being able to do so and to do so alone. This also became where I cried when I needed to grieve, so that I could spare my Dad more concern for me.
The recovery was moving along. a woman my Dad knew even hired me in the wheel chair knowing I would be going to the doctor three times a week. How wonderful it was to get out of the house and occupy my mind. Then, I was hit with a set back. The crack they missed in my right ankle wasn't healing with the cast. I would need another surgery. Most people would be nervous about surgery. I remember friends becoming upset with me because I would joke about having a hole drilled in my ankle and having the screw put in. Insensitive yes, but humor is also a coping mechanism. Nevermind the fact, I don't care at this point if something happens to me. As a matter of fact, I'm looking forward to being put under. We've all had people in our lives talk about out of body experiences, or maybe you've heard of looking into a mirror and getting a glimpse of a loved one that has passed over. Well, I learned I didn't have the patience to sit and concentrate hard enough to accomplish this. If it is possible, I will never know, I can't stop my mind from thinking (this is also when I started needing tv to shut my mind off so I could sleep). Anyway, I come up with this plan, that as they administer the anesthesia I will be relaxed enough to just jump out of my body. I'm looking forward to the possiblity.
Unfortunately, I will never know if it would of worked. I've had multiple surgeries, and usually they have you count back from ten, not this time, the nurse complimented my fingernails, which distracted me and that is the last memory I have until waking up in recovery. I was so disappointed when I realized what had happened, and now I'm in pain. I ask for some pain meds, however, they want me to take a pill and wait for it to work. Aparently they think this is my first rodeo, so I proceed to let the nurse know that I know they have better stuff in the hospital and someone better fix me up and quick! i am in agonizing pain. I had no idea I would be in pain, I was so doped up after the accident, I really didn't feel anything unless someone tried to move me. Now I'm just lying in bed and I'm in horrific pain. The nurse is holding out, because this is "day surgery" and I need to be able to go home (if anyone is reading this and is going in for surgery, do not panic, they now put a pain pump at the site, I've since had additonal surgeries). This is when my sister decides to call. I remember her asking if I was sure I wasn't exagerating and I believe I said something to the effect of "let me drill a whole in your ankle and see how you feel". I think she got the message.
My sister comes to visit. Remember me telling you there is humor in every tragedy. Well, this was funny, for everyone else. We are shopping and my sister just rolls me into the middle of the aisle and lets go. Yes, if you are playing around in a wheel chair and doing tricks or getting pushed really fast it can be exciting. When you have a cracked pelvic, two broken ankles and a broken leg, any behavior that could add to your list of injuries does not make it to the list of things you want done to you. She didn't see it this way. After I have my near heart attack we go shoe shopping., I don't remmeber who was looking at shoes, but we're in a shoe store. My sister accidentally hits the release lever which sends my right leg flying outward. I am screaming in the middle of footlocker (remmber me telling you i had to pivot so my waist moves at the same time as my legs so I don't re-injure my pelvic). Shooting pain is coming from my pelvic. This caused quite a scene, everyone's coming over to see if I'm ok, I begin to catch my breath, and my sister tries to explain what caused the incident, only she's more of a show and tell type person. Rather than just explain what happens, she hits the lever again. Again, I am screaming in the middle of the store. I never want to go on an outting with my sister again.
My sister's visit did comfort my soul, this was the first time I truly smiled without pretending since the accident, which is great only I wasn't the only one that noticed. I remember my Dad yelling at me (when Dad was emotional he didn't realized he raised his voice) that I needed to snap out of it that the only time I smiled was when my sister was there and don't I know how glad he is I'm alive. I felt horrible. I loved my Dad so much, I didn't want to hurt him. I know it was hard on him to see his little girl go through so much and I know how terrified he was for me. I would do anything to save my Dad's feelings. He told me that the paremedic said they went to the other car first, because they didn't believe anyone could possibly be alive in our car. My Dad when he heard got in his truck and drove to Florida,. He didn't know what he was going to find, but knew no matter what he was bringing his little girl home and would need his truck. My Dad, my hero, my confidant, my shelter, my safe place to fall.
My Accident was August 1, 1994. The following New Years Eve, my Dad has a heart attack and is admitted to the hospital. A lump forms in my throat even now as I try and tell you how I felt back then. Through everything I had been through even with all the pain I felt God, I knew he had tried to prepare my spirit for the loss of Kevin and I knew ultimately he was in control. But I'll be damned if he gets to take my Dad too. I remember going into the courtyard of the hospital and literally yelling at God, that he can't take Dad too, not if he expects me to survive this.
My Dad was diagnosed with congestive heart failure. The only cure is a transplant, he will be on medicine the rest of his life until one day, his heart just gives out, it can't be repaired. This is when you pray to hear there's blockage, blockage can be fixed. My Dad is faced with his own mortality and I his daughter am faced with it too.
In the midst of all this tragedy there is the complication of his current wife, who I will just refer to as Ms Mauve. How Ms Mauve is able to live with her own reflection in a mirror I will never know. I really don't even want to give her time on this page she's already had too much time of mine, however one element is necessary to understand me just a little. My physical recovery has progressed and I am getting the last cast off. It is this morning that Ms Mauve hands me a piece of paper as I am sitting at my usual place in the dinning room. On this sheet of paper is a list of everything I could use while living there and the associated cost, right down to a glass of milk, also included is what I owe for my flight from Florida. Seriously, the flight from the hospital home to Dad's house. I ask her if my Dad has seen this, and through gritted teeth she grunts leave your father out of this. I immidiately call out for my Dad. I can tell by his reaction he had never seen that sheet of paper, nor did he approve. It progresses into a it's her or me kind of argument, at this point I have left the room, but can hear the words being shouted back and forth. My Dad comes in my room, he is visibly upset and he doesn't know what to do, he doesn't want to be divorced another time, and he actually says to me "maybe you should leave". With tears in my eyes, I remind him of his promise that his kids would always have a home to come home to, that I wasn't here because I failed or had a choice, and now he's telling me I don't have a home. He caught himself and he hugged me immediately and took back the words. But the person I trusted most in the world, the only person I trusted had just let me down. It was devestating to know that even for a second he would choose some woman over his child. Mom had always put us last, but not Dad. I know how horrible he felt after he said it, but God it still hurt. I moved out. I moved out before I was ready.
Alone
I had lived alone before, but before was before I had fell in love, before I had plans with someone else for a future, before when I was looking forward to the rest of my life, before when everything was new and exciting. This is just alone. The body heals way before the soul.
I'm still seeing Kevin in my dreams at this point. And there is a distinct difference between dreams when you dream about something that happened, and a dream where he was communicating with me. I lived for the communicating dreams. Sleep does not come easy, I now can only fall asleep if I have the tv on. The tv occupies my mind, otherwise I can't get it to shut off. I would just lie in bed thinking.
I love work, you can count on work. It is always there and it occupy's your mind. I don't like being at home. I don't know what to do with myself. Food becomes an activity. I literally sit on the couch watching tv and ponder what to snack on next. This also becomes a way to occupy my mind. I was always very thin, too thin back then. My hip bone was actually visible through my jeans pocket. So, as strange as this may seem, when my clothes started to become tight, I literally thought the cleaners had shrunk them and switched cleaners. Well, as you probably have guessed, it wasn't the cleaners.
i also am introduced to night life by a neighbor. I find I love the energy at bars. All the people, the live music, its kind of a thrill. At this point in my life I had never even been to a concert, so the energy that came with live music was new and exciting. I fall into a pattern, I worked hard during the week, eat when I get home, watch tv until sleep comes, and go out on the weekends. To anyone looking at me from the outside they wouldn't know what a depression I was in.
It became what I felt was almost expected of you. To look ok, say you're ok. No one wan'ts to hear that you really don't want to be here and no you aren't over what happened to you. I remember a guy that was interested in me asking "You're over it aren't you". This was around June, around 11 months after the accident. The way he asked implied that the right answer is to say was yes. It wasn't just him, it was my Dad, friends, everyone. The truth is most people need you to pretend your ok even when you're not. Choosing not to pretend is not the popular option. I stop sharing how I feel and become the pretender.
Mark
Remember my brother the one who lived in a tent off of US1, well he's sober now. My accident gave him some awakening. He's dreaming of getting married and having a house someday. Only this wasn't meant to be.
My brother was diagnosed with testicular cancer, he was either 30 or 31, can't remember exactly. I do remember he died on July 19, 1999 on my couch. Testicular cancer has a high survival rate if caught early. Unfortunately for Mark it had already traveled through the lymph nodes to other parts of his body when he received the diagnosis. I remember how horrible I felt for him that he finally decides to get his act together and he receives this devestating news. I am telling him on the phone one night how sorry I feel for him. I remember him saying, "you feel sorry for me?" "Why?" I stumbled with the words, but I tell him that he's finally getting his life together and he is hit with this. He replied, "don't feel sorry for me" "my life has been one hell of a ride". And it probably was, he didn't always have a place to put his clothes or know where he was sleeping but he did have one adventure after the other. I mean he is the only one I know that ever spent a night in jail for hunting lobster out of season. He's also the only one I've ever known to have someone smuggle a bottle of vodka in the hospital so he can drink during chemo (sobriety was pushed to the side as the prognosis worsened). He just didn't conform to what most of us in the world would consider normal. My brother is stubborn, but when he realizes he is out of options and can no longer live alone, my Dad and I travel to Florida to pick him up. Mark can't stay with Dad, we have the problem of Ms Mauve, so my brother stays with me and I become his care giver. At first my brother is very brave. I really never knew him to care about anyone other than himself, but here he is his body wrought with cancer and he gets up before me and makes me coffee. Somedays breakfast (which my dog Romeo helped himself to his pancakes one day, which he was pretty bent about, I said it served him right for leaving his plate unattended). He makes a huge dinner for Dad on Fathers day. When Mark wasn't drunk he was a damn good chef. It was chicken cordon blue, he even used a cooking thermometer. I say this so you understand the care he put into meal. He went out of his way to be a better brother, a better son.
Things with Ms Mauve come to a head, and Dad moves in with me as well. Which is nice, Mark and I have been fighting, and I'm so frustrated. I feel guilty because I am fighting with my brother who is dying, but I also can't handle him. The only thing worse than your brother dying of cancer is having an alcoholic brother dying of cancer. I have to manage his meds and we fight about this, he wants to take more than he should. He wants to go to Walmart nightly. I can't afford to go shopping every day. He needs something for the fish, he needs vacumn cleaner bags. One day I just said no, and the man goes into the garage and proceeds to empty a vacumn cleaner bag with a hanger (which mind you, my kind mother says probably brought on the pnemonia) because he is bound and determined to get his way. One day we are putting together a night stand for the room Dad is going to be staying in and he is just fighting me tooth and nail. I have to do the work and he is shouting instructions, because his way is the right way. Finally I can't handle it, kind of throw my hands up and just start crying. He says, don't you get it, you're the only one who still treats me like me, when we fight, I don't feel like someone who has cancer, I just feel like your brother. OK, where did this sensitive person come from and what the hell did he do with my brother.
I take Mark to his Dr visits. Each time the Dr asks if he has considered Hospice, each time Mark says no, he still wants to fight. We call it living your life, only your life includes cancer. One day we are in the parking lot about to go into an appointment and Cher's song Do you believe in life after love comes in , so I crank up the stereo. My brother looks at me and goes "are we jaming now". We both start laughing. And we sit there and listen to that song.
July 4th, Dad Mark and I go to dinner at Crack N Barrell and then to Vista Ridge Mall to watch the fire works together. We sit in chairs in the back of Dad's truck and watch the fire works. It was so special for the three of us to be there together, something that hasn't happened since we were little. The next morning I get up, Dad is in the kitchen, no Mark. Dad says, he hasn't heard him yet. I'm immediately concerned. Mark has been waking up every day to make me coffee since he got there. I go into his room. He is in bed and he is confused, troubled, he can't find his glasses. Hes disoriented. I get his glasses for him, but know it's more than that, something is very wrong. I go get Dad. We know what this means. We all know what this means. We take Mark to the Veterans Hospital.
At the hospital
Mark absolutely did not want to be in the hospital, dying or not he was bound and determined to not stay there. I'd say we took turns staying there with him, but it's more like we took turns standing guard. Mark refused to remove his tennis shoes, so if you dared to doze off, iv and all he'd be bolting out of bed to take off. He has Cancer in his lungs, brain, lymph nodes, bones and pnemonia and the man finds energy to try and leave the hospital every time you fall asleep. Where the energy would come from, I still don't know. One moment he'd be at deaths door, the next you're trying to rise yourself awake to keep him from leaving. When caught, he would settle for a cup of coffee and going out side to smoke. I remember one of the machines had International Coffe and my brother saying to me "so, are we celebrating the moments of our lives". My Dad finally struck a deal that Mark would give the treatment a week, no matter the outcome, we would then take him home.
One early morning after my night on duty, my brother slipped into a coma. We had already decided that no extra ordinary measures were to be taken and he is not suffering in this coma, but how do you choose to let someone just go. Right then, my brother was gone. I just thought, no, not on my watch, this can't be my decision. I remember the Doctors (the VA hopsital is a training hospital so there are multiple doctors) asking me if I wanted them to try and bring him out of the coma. I verify with them he is not in pain, but how do I say no don't help him, no I don't need to speak to him again, no it's ok for him to go and go now, that this is it. It's over and on my watch. I can't, I want my Dad to make the decision, to be there, he's not, the doctors adminsiter a drug to reverse the effects of the morphine and he awakes.
"Hey there". My brother says "hey there" as if nothing extra ordinary has occurred, he just looks at me and says "hey there". Seriously, I wanted to kill him. I wanted something more profound, like where was he just minutes before. Something amazing he had seen or thought to acknowledge the near death experience he had just had, anything, but hey there was not on the list. True to my Dad's word, we find out that Mark's condition is not improving and his lungs are filling with fluid, we bring him home, my home, my first house. I was 29 and we were bringing my brother home to my house to die.
Home
When we brought Mark home we had the help of Hospice. God bless the Nurses that work there. I don't remember the name of the nurse we had, but I do remember her spirit. She helped prepare us for what signs we might see, things we might experience. They say right before someone dies they have a last horrah, a burst of energy if you will. This was true of my brother he had been couch ridden for days. Mark didn't want to be closed off in a room, he wanted to be in the center of things, so he was on my couch. Dad and I would take turns spending the night on the other couch so one of us could tend to his needs at all times. HIs needs now consisted of breathing treatments, medication, feeding and helping to the restroom. My brother absolutely did not want his sister helping with the bathroom or to be diapered or even a hospital bed where it would of been easier for us to manuever him. I don't know how he managed it, I think now he must of took effort to only need to go to the restroom when Dad was around. The strength he found in himself still amazes me when I think of it. During this time I remember we all were somewhat paralyzed. We would sit in the dinning room just off the living room, not talking, just sitting and truthfully we were watching my brother breath. People tend to think that when someone has an illness you are prepared for their passing. Let me clear that myth. Your mind can not comprehend gone. What you do comprehend is your current reality has changed that your brother is sick and your reality is caring for him and watching him breath and making sure he is ok. There is no comprehending that this won't just be. One day we are sitting there watching Mark, at this point my Mom is also here and we hear on the news that JFK Jr's plane went down. I am struck by their loss, here we know I won't always have my brother, Dad won't have his son within days, maybe hours and yet this family who thought they had forever just lost their brother. It reminds us all sick or healthy, young or old, life is short.
I don't remember how long, but we had been off work a couple of weeks, when one night my brother decides he can get off the couch and come have dinner with us. I notice he doesn't eat much, but he put forth a great effort and then him and I sit on my back porch and watch the sun set. Just him and I and I know he is proud of me, his little sister has a house and we are sitting in my back yard. He tells me he is proud.
The next morning, Dad & I decide to go back to work. We decided my brother is stronger than we imagined and this isn't the end. He did have a bit of a rough night (little accident on the couch), so we had to have the talk with him that we need the hospital bed to be able to care for him and that it's time for a diaper. Mark doesn't like it but understands it's too much to lift him without help. As I go to leave for work, I don't say goodbye, I tell him Ill be back soon and just to rest that I love him. I swear he said goodbye. I tried to make him repeat it by asking him what and he wouldn't, he covered it up with see you later. So, I let it go and I went to work.
I was at work a couple of hours when Mom called, "get home now, he's not breathing". We couldn't comprehend gone that this just wouldn't always be and we had forgotten what hospice had said, "they wait until they are alone to leave". We had left for work and Mom had stepped into the garage to do laundry when my brother left.
When I got home I ran to my brothers side, he was gone, sometimes I think he kissed my head, but I know that couldn't be. I remembered I just cried. I wasn't ready. I wasn't prepared. I hadn't said anything profound. The hospice nurse is there and my Dad, myself and the nurse stand and watch as cover my brother and remove him from the home, my home.
One of my best days during recovery was when Dad brought home a shower chair. He had borrowed it from an elderly lady at the church. You have no idea the freedom this gave me! I could now wheel myself into the bathroom and manuever by myself onto the chair from the wheel chair. I could finally bathe alone! Now, it was still a little complicated, both feet had to be out of the shower, but I had running water hitting my head for the first time in months. I know cried as I sat under the water just from the pure joy of being able to do so and to do so alone. This also became where I cried when I needed to grieve, so that I could spare my Dad more concern for me.
The recovery was moving along. a woman my Dad knew even hired me in the wheel chair knowing I would be going to the doctor three times a week. How wonderful it was to get out of the house and occupy my mind. Then, I was hit with a set back. The crack they missed in my right ankle wasn't healing with the cast. I would need another surgery. Most people would be nervous about surgery. I remember friends becoming upset with me because I would joke about having a hole drilled in my ankle and having the screw put in. Insensitive yes, but humor is also a coping mechanism. Nevermind the fact, I don't care at this point if something happens to me. As a matter of fact, I'm looking forward to being put under. We've all had people in our lives talk about out of body experiences, or maybe you've heard of looking into a mirror and getting a glimpse of a loved one that has passed over. Well, I learned I didn't have the patience to sit and concentrate hard enough to accomplish this. If it is possible, I will never know, I can't stop my mind from thinking (this is also when I started needing tv to shut my mind off so I could sleep). Anyway, I come up with this plan, that as they administer the anesthesia I will be relaxed enough to just jump out of my body. I'm looking forward to the possiblity.
Unfortunately, I will never know if it would of worked. I've had multiple surgeries, and usually they have you count back from ten, not this time, the nurse complimented my fingernails, which distracted me and that is the last memory I have until waking up in recovery. I was so disappointed when I realized what had happened, and now I'm in pain. I ask for some pain meds, however, they want me to take a pill and wait for it to work. Aparently they think this is my first rodeo, so I proceed to let the nurse know that I know they have better stuff in the hospital and someone better fix me up and quick! i am in agonizing pain. I had no idea I would be in pain, I was so doped up after the accident, I really didn't feel anything unless someone tried to move me. Now I'm just lying in bed and I'm in horrific pain. The nurse is holding out, because this is "day surgery" and I need to be able to go home (if anyone is reading this and is going in for surgery, do not panic, they now put a pain pump at the site, I've since had additonal surgeries). This is when my sister decides to call. I remember her asking if I was sure I wasn't exagerating and I believe I said something to the effect of "let me drill a whole in your ankle and see how you feel". I think she got the message.
My sister comes to visit. Remember me telling you there is humor in every tragedy. Well, this was funny, for everyone else. We are shopping and my sister just rolls me into the middle of the aisle and lets go. Yes, if you are playing around in a wheel chair and doing tricks or getting pushed really fast it can be exciting. When you have a cracked pelvic, two broken ankles and a broken leg, any behavior that could add to your list of injuries does not make it to the list of things you want done to you. She didn't see it this way. After I have my near heart attack we go shoe shopping., I don't remmeber who was looking at shoes, but we're in a shoe store. My sister accidentally hits the release lever which sends my right leg flying outward. I am screaming in the middle of footlocker (remmber me telling you i had to pivot so my waist moves at the same time as my legs so I don't re-injure my pelvic). Shooting pain is coming from my pelvic. This caused quite a scene, everyone's coming over to see if I'm ok, I begin to catch my breath, and my sister tries to explain what caused the incident, only she's more of a show and tell type person. Rather than just explain what happens, she hits the lever again. Again, I am screaming in the middle of the store. I never want to go on an outting with my sister again.
My sister's visit did comfort my soul, this was the first time I truly smiled without pretending since the accident, which is great only I wasn't the only one that noticed. I remember my Dad yelling at me (when Dad was emotional he didn't realized he raised his voice) that I needed to snap out of it that the only time I smiled was when my sister was there and don't I know how glad he is I'm alive. I felt horrible. I loved my Dad so much, I didn't want to hurt him. I know it was hard on him to see his little girl go through so much and I know how terrified he was for me. I would do anything to save my Dad's feelings. He told me that the paremedic said they went to the other car first, because they didn't believe anyone could possibly be alive in our car. My Dad when he heard got in his truck and drove to Florida,. He didn't know what he was going to find, but knew no matter what he was bringing his little girl home and would need his truck. My Dad, my hero, my confidant, my shelter, my safe place to fall.
My Accident was August 1, 1994. The following New Years Eve, my Dad has a heart attack and is admitted to the hospital. A lump forms in my throat even now as I try and tell you how I felt back then. Through everything I had been through even with all the pain I felt God, I knew he had tried to prepare my spirit for the loss of Kevin and I knew ultimately he was in control. But I'll be damned if he gets to take my Dad too. I remember going into the courtyard of the hospital and literally yelling at God, that he can't take Dad too, not if he expects me to survive this.
My Dad was diagnosed with congestive heart failure. The only cure is a transplant, he will be on medicine the rest of his life until one day, his heart just gives out, it can't be repaired. This is when you pray to hear there's blockage, blockage can be fixed. My Dad is faced with his own mortality and I his daughter am faced with it too.
In the midst of all this tragedy there is the complication of his current wife, who I will just refer to as Ms Mauve. How Ms Mauve is able to live with her own reflection in a mirror I will never know. I really don't even want to give her time on this page she's already had too much time of mine, however one element is necessary to understand me just a little. My physical recovery has progressed and I am getting the last cast off. It is this morning that Ms Mauve hands me a piece of paper as I am sitting at my usual place in the dinning room. On this sheet of paper is a list of everything I could use while living there and the associated cost, right down to a glass of milk, also included is what I owe for my flight from Florida. Seriously, the flight from the hospital home to Dad's house. I ask her if my Dad has seen this, and through gritted teeth she grunts leave your father out of this. I immidiately call out for my Dad. I can tell by his reaction he had never seen that sheet of paper, nor did he approve. It progresses into a it's her or me kind of argument, at this point I have left the room, but can hear the words being shouted back and forth. My Dad comes in my room, he is visibly upset and he doesn't know what to do, he doesn't want to be divorced another time, and he actually says to me "maybe you should leave". With tears in my eyes, I remind him of his promise that his kids would always have a home to come home to, that I wasn't here because I failed or had a choice, and now he's telling me I don't have a home. He caught himself and he hugged me immediately and took back the words. But the person I trusted most in the world, the only person I trusted had just let me down. It was devestating to know that even for a second he would choose some woman over his child. Mom had always put us last, but not Dad. I know how horrible he felt after he said it, but God it still hurt. I moved out. I moved out before I was ready.
Alone
I had lived alone before, but before was before I had fell in love, before I had plans with someone else for a future, before when I was looking forward to the rest of my life, before when everything was new and exciting. This is just alone. The body heals way before the soul.
I'm still seeing Kevin in my dreams at this point. And there is a distinct difference between dreams when you dream about something that happened, and a dream where he was communicating with me. I lived for the communicating dreams. Sleep does not come easy, I now can only fall asleep if I have the tv on. The tv occupies my mind, otherwise I can't get it to shut off. I would just lie in bed thinking.
I love work, you can count on work. It is always there and it occupy's your mind. I don't like being at home. I don't know what to do with myself. Food becomes an activity. I literally sit on the couch watching tv and ponder what to snack on next. This also becomes a way to occupy my mind. I was always very thin, too thin back then. My hip bone was actually visible through my jeans pocket. So, as strange as this may seem, when my clothes started to become tight, I literally thought the cleaners had shrunk them and switched cleaners. Well, as you probably have guessed, it wasn't the cleaners.
i also am introduced to night life by a neighbor. I find I love the energy at bars. All the people, the live music, its kind of a thrill. At this point in my life I had never even been to a concert, so the energy that came with live music was new and exciting. I fall into a pattern, I worked hard during the week, eat when I get home, watch tv until sleep comes, and go out on the weekends. To anyone looking at me from the outside they wouldn't know what a depression I was in.
It became what I felt was almost expected of you. To look ok, say you're ok. No one wan'ts to hear that you really don't want to be here and no you aren't over what happened to you. I remember a guy that was interested in me asking "You're over it aren't you". This was around June, around 11 months after the accident. The way he asked implied that the right answer is to say was yes. It wasn't just him, it was my Dad, friends, everyone. The truth is most people need you to pretend your ok even when you're not. Choosing not to pretend is not the popular option. I stop sharing how I feel and become the pretender.
Mark
Remember my brother the one who lived in a tent off of US1, well he's sober now. My accident gave him some awakening. He's dreaming of getting married and having a house someday. Only this wasn't meant to be.
My brother was diagnosed with testicular cancer, he was either 30 or 31, can't remember exactly. I do remember he died on July 19, 1999 on my couch. Testicular cancer has a high survival rate if caught early. Unfortunately for Mark it had already traveled through the lymph nodes to other parts of his body when he received the diagnosis. I remember how horrible I felt for him that he finally decides to get his act together and he receives this devestating news. I am telling him on the phone one night how sorry I feel for him. I remember him saying, "you feel sorry for me?" "Why?" I stumbled with the words, but I tell him that he's finally getting his life together and he is hit with this. He replied, "don't feel sorry for me" "my life has been one hell of a ride". And it probably was, he didn't always have a place to put his clothes or know where he was sleeping but he did have one adventure after the other. I mean he is the only one I know that ever spent a night in jail for hunting lobster out of season. He's also the only one I've ever known to have someone smuggle a bottle of vodka in the hospital so he can drink during chemo (sobriety was pushed to the side as the prognosis worsened). He just didn't conform to what most of us in the world would consider normal. My brother is stubborn, but when he realizes he is out of options and can no longer live alone, my Dad and I travel to Florida to pick him up. Mark can't stay with Dad, we have the problem of Ms Mauve, so my brother stays with me and I become his care giver. At first my brother is very brave. I really never knew him to care about anyone other than himself, but here he is his body wrought with cancer and he gets up before me and makes me coffee. Somedays breakfast (which my dog Romeo helped himself to his pancakes one day, which he was pretty bent about, I said it served him right for leaving his plate unattended). He makes a huge dinner for Dad on Fathers day. When Mark wasn't drunk he was a damn good chef. It was chicken cordon blue, he even used a cooking thermometer. I say this so you understand the care he put into meal. He went out of his way to be a better brother, a better son.
Things with Ms Mauve come to a head, and Dad moves in with me as well. Which is nice, Mark and I have been fighting, and I'm so frustrated. I feel guilty because I am fighting with my brother who is dying, but I also can't handle him. The only thing worse than your brother dying of cancer is having an alcoholic brother dying of cancer. I have to manage his meds and we fight about this, he wants to take more than he should. He wants to go to Walmart nightly. I can't afford to go shopping every day. He needs something for the fish, he needs vacumn cleaner bags. One day I just said no, and the man goes into the garage and proceeds to empty a vacumn cleaner bag with a hanger (which mind you, my kind mother says probably brought on the pnemonia) because he is bound and determined to get his way. One day we are putting together a night stand for the room Dad is going to be staying in and he is just fighting me tooth and nail. I have to do the work and he is shouting instructions, because his way is the right way. Finally I can't handle it, kind of throw my hands up and just start crying. He says, don't you get it, you're the only one who still treats me like me, when we fight, I don't feel like someone who has cancer, I just feel like your brother. OK, where did this sensitive person come from and what the hell did he do with my brother.
I take Mark to his Dr visits. Each time the Dr asks if he has considered Hospice, each time Mark says no, he still wants to fight. We call it living your life, only your life includes cancer. One day we are in the parking lot about to go into an appointment and Cher's song Do you believe in life after love comes in , so I crank up the stereo. My brother looks at me and goes "are we jaming now". We both start laughing. And we sit there and listen to that song.
July 4th, Dad Mark and I go to dinner at Crack N Barrell and then to Vista Ridge Mall to watch the fire works together. We sit in chairs in the back of Dad's truck and watch the fire works. It was so special for the three of us to be there together, something that hasn't happened since we were little. The next morning I get up, Dad is in the kitchen, no Mark. Dad says, he hasn't heard him yet. I'm immediately concerned. Mark has been waking up every day to make me coffee since he got there. I go into his room. He is in bed and he is confused, troubled, he can't find his glasses. Hes disoriented. I get his glasses for him, but know it's more than that, something is very wrong. I go get Dad. We know what this means. We all know what this means. We take Mark to the Veterans Hospital.
At the hospital
Mark absolutely did not want to be in the hospital, dying or not he was bound and determined to not stay there. I'd say we took turns staying there with him, but it's more like we took turns standing guard. Mark refused to remove his tennis shoes, so if you dared to doze off, iv and all he'd be bolting out of bed to take off. He has Cancer in his lungs, brain, lymph nodes, bones and pnemonia and the man finds energy to try and leave the hospital every time you fall asleep. Where the energy would come from, I still don't know. One moment he'd be at deaths door, the next you're trying to rise yourself awake to keep him from leaving. When caught, he would settle for a cup of coffee and going out side to smoke. I remember one of the machines had International Coffe and my brother saying to me "so, are we celebrating the moments of our lives". My Dad finally struck a deal that Mark would give the treatment a week, no matter the outcome, we would then take him home.
One early morning after my night on duty, my brother slipped into a coma. We had already decided that no extra ordinary measures were to be taken and he is not suffering in this coma, but how do you choose to let someone just go. Right then, my brother was gone. I just thought, no, not on my watch, this can't be my decision. I remember the Doctors (the VA hopsital is a training hospital so there are multiple doctors) asking me if I wanted them to try and bring him out of the coma. I verify with them he is not in pain, but how do I say no don't help him, no I don't need to speak to him again, no it's ok for him to go and go now, that this is it. It's over and on my watch. I can't, I want my Dad to make the decision, to be there, he's not, the doctors adminsiter a drug to reverse the effects of the morphine and he awakes.
"Hey there". My brother says "hey there" as if nothing extra ordinary has occurred, he just looks at me and says "hey there". Seriously, I wanted to kill him. I wanted something more profound, like where was he just minutes before. Something amazing he had seen or thought to acknowledge the near death experience he had just had, anything, but hey there was not on the list. True to my Dad's word, we find out that Mark's condition is not improving and his lungs are filling with fluid, we bring him home, my home, my first house. I was 29 and we were bringing my brother home to my house to die.
Home
When we brought Mark home we had the help of Hospice. God bless the Nurses that work there. I don't remember the name of the nurse we had, but I do remember her spirit. She helped prepare us for what signs we might see, things we might experience. They say right before someone dies they have a last horrah, a burst of energy if you will. This was true of my brother he had been couch ridden for days. Mark didn't want to be closed off in a room, he wanted to be in the center of things, so he was on my couch. Dad and I would take turns spending the night on the other couch so one of us could tend to his needs at all times. HIs needs now consisted of breathing treatments, medication, feeding and helping to the restroom. My brother absolutely did not want his sister helping with the bathroom or to be diapered or even a hospital bed where it would of been easier for us to manuever him. I don't know how he managed it, I think now he must of took effort to only need to go to the restroom when Dad was around. The strength he found in himself still amazes me when I think of it. During this time I remember we all were somewhat paralyzed. We would sit in the dinning room just off the living room, not talking, just sitting and truthfully we were watching my brother breath. People tend to think that when someone has an illness you are prepared for their passing. Let me clear that myth. Your mind can not comprehend gone. What you do comprehend is your current reality has changed that your brother is sick and your reality is caring for him and watching him breath and making sure he is ok. There is no comprehending that this won't just be. One day we are sitting there watching Mark, at this point my Mom is also here and we hear on the news that JFK Jr's plane went down. I am struck by their loss, here we know I won't always have my brother, Dad won't have his son within days, maybe hours and yet this family who thought they had forever just lost their brother. It reminds us all sick or healthy, young or old, life is short.
I don't remember how long, but we had been off work a couple of weeks, when one night my brother decides he can get off the couch and come have dinner with us. I notice he doesn't eat much, but he put forth a great effort and then him and I sit on my back porch and watch the sun set. Just him and I and I know he is proud of me, his little sister has a house and we are sitting in my back yard. He tells me he is proud.
The next morning, Dad & I decide to go back to work. We decided my brother is stronger than we imagined and this isn't the end. He did have a bit of a rough night (little accident on the couch), so we had to have the talk with him that we need the hospital bed to be able to care for him and that it's time for a diaper. Mark doesn't like it but understands it's too much to lift him without help. As I go to leave for work, I don't say goodbye, I tell him Ill be back soon and just to rest that I love him. I swear he said goodbye. I tried to make him repeat it by asking him what and he wouldn't, he covered it up with see you later. So, I let it go and I went to work.
I was at work a couple of hours when Mom called, "get home now, he's not breathing". We couldn't comprehend gone that this just wouldn't always be and we had forgotten what hospice had said, "they wait until they are alone to leave". We had left for work and Mom had stepped into the garage to do laundry when my brother left.
When I got home I ran to my brothers side, he was gone, sometimes I think he kissed my head, but I know that couldn't be. I remembered I just cried. I wasn't ready. I wasn't prepared. I hadn't said anything profound. The hospice nurse is there and my Dad, myself and the nurse stand and watch as cover my brother and remove him from the home, my home.
