Suicide – my thoughts in the wake of a celebrity’s death

Yesterday I read some jerkwad’s *coughmattwalshcough* opinion on suicide after the media frenzy of Robin William’s death. (I started this post last week, but haven’t had the strength to finish it until today.)

To say I felt he completely missed the nail is putting it lightly. He wasn’t even hammering in the same room as that nail.

I feel like I have something to offer on this subject and I want to share it. Normally I don’t want to share the deepest darkest parts of me, but I have been rolling the whole subject over and over in my mind since the news broke and I just can’t stay quiet. I have been appalled by some of the things I have read concerning suicide and his suicide in particular.

I have been depressed before – clinically and situationally depressed. I have been depressed to the point that I have lost jobs, only left my apartment to get some soda and cigarettes, stopped talking to friends and family, and self medicated – heavily. In those times I have often thought that perhaps the world would be better without me. I have thought that I was no good and nothing good could come from me and I would never ever get better. I have toyed with the idea of killing myself. I still struggle sometimes with depression.

But twice, twice I was truly suicidal. Twice it was only because something interrupted me that I am still alive today. Twice I had a plan and a time and day and I was ready to go through with it. That’s the difference between being depressed and having suicidal thoughts and being truly suicidal. The plan, the preparation, the time and place and day. That is what it means to be really suicidal. One of those times I was hospitalized for about a week. Obviously I am happy I was interrupted and happy I had the chance to get past those times in my life, as hard as it was.

Matt Walsh (I won’t link to his article because I don’t want to increase his traffic, but all you have to do is google “Matt Walsh blogger” and you will find him and his article) states:

“I can’t comprehend it. The complete, total, absolute rejection of life. The final refusal to see the worth in anything, or the beauty, or the reason, or the point, or the hope. The willingness to saddle your family with the pain and misery and anger that will now plague them for the rest of their lives.”
From this one comment I can see he has never been suicidal in his life. He has no idea what it’s like. Being that depressed and that suicidal is not a refusal to find beauty. It’s not a turning of the head away from anything good. It’s a feeling that there will never be anything good again for you. Not that you can’t see what you once did, but that you can no longer enjoy it. Not that there will never be happy times again, but that you can’t find a way to get to that point. You can’t find a bridge to take you from the worst emotional pain you can imagine to a place where you are happy again at least most of the time. And the family part – yes, most of us think of our family. We try to make it easier on them. We hang on as long as we do because of their love. We don’t want to hurt them, but our pain is so great that we can’t hold on any longer, not even for them. Depression lies. Sometimes it tells you your family would be better off without you anyway. It lies and it’s lies are mean.
Mr Walsh also indicates that happiness is a choice. That people who are depressed need to chose to be happy. While there ARE things that help many depressed people (therapy, medication, exercise, eating well, meditation, socializing, being outdoors, getting sunshine) there is no one choice you make to become depressed or *ping* undepressed. It’s not a conscious choice. I dare anyone out there to choose to change their body chemicals. Why isn’t he calling on diabetics to change their blood sugar and for thyroid patients to make their thyroid start functioning more correctly? It’s a chemical imbalance tied together with a whole lot of situational stuff that has kicked you until you are down. And kept kicking you. And most people don’t ask for help until they are truly down
There is another component in this particular case, though. Robin William’s wife issued a statement that he was in the early stages of Parkinson’s Disease. A horrible disease that takes away the control of your body. It attacks the nerves. People can live for decades slowly watching their body betray them more and more. When people learned this fact, the whole tone of the suicide changed. Suddenly the angry and mean comments were no longer being said.
I also know something about this side of the issue. My mother was diagnosed with early onset Alzheimer’s. A little more than 3 years later she killed herself. She told us from the start to expect that. She had seen other people decline with this same disease and she wasn’t going to allow herself to get past a certain point. She didn’t want to lose all she was and had been. But she was also depressed. From the moment she realized what was happening (in my opinion) it depressed her. While Alzheimer’s does that to many people – the chemicals in the brain being completely different can cause chemical depression – I feel it was also situational. She couldn’t stand her mind not working the way it used to and she didn’t want us to see her in a different light. She couldn’t take the land slide of changes in her life due to this disease.
She attempted once and then she succeeded a few months later. Everyone in my family has a different opinion on it. Some just feel like she died from Alzheimer’s – that the suicide wasn’t really her choice, that it was the disease that forced her hand so to speak. Some feel like she purposely planned it to happen just as she was really losing herself so that none of us would see her at the worst part of it. I fell like it was an act of love and kindness as well as the act of a diseased mind. She loved us too much to “become a burden” (though none of us saw her that way) and she wanted to spare us from taking care of her in that state. I also don’t believe she would have killed herself if she hadn’t been physically ill.
The interesting thing to me is that while many people see it as tragic, I haven’t met anyone who sees her death as wrong or selfish or hurtful like they do with a younger or physically healthier person who takes their own life. They understand it. They empathize with it.
Why is that empathy removed from so many people’s reactions when the reason is “just depression”? Why can’t people understand that depression is just as painful as other diseases?
I suppose my answer lies in the fact that people who can’t understand suicide have simply never been in the type of pain that severe depression brings.
When I was in high school a teacher of mine asked the class to raise our hands if we had been in physical pain before. Then he asked us to raise our hands if we had been in emotional pain before. Then he asked us which one we would choose if given the choice. Of the three people who had raised their hands for both, all of us said we would choose physical pain. Being 20+ years older now, I have had severe physical pain due to cancer and surgeries. Very severe pain. And I have experienced more emotional\psychological pain since then as well. I would still chose physical pain over psychological any day.
(I won’t even start with how the physical pain and psychological pain feed off each other.)
I suppose I am writing this post is to implore you. To ask you to please try to see suicide for what it is. To stop calling it selfish and hurtful and weak. To ask you to realize that it takes a lot of pain for someone to get to that point in their lives and that you may never realize just how much it takes, but that perhaps you can try to remember that your experience and someone else’s are completely different. I can’t truly know your pain and you can’t truly know mine. But we can BOTH be kind. We can both stop pointing fingers and saying that this or that is wrong for the other person. I think that the post I read made me so upset because instead of finding compassion and hoping to reach readers who need help and give them just a little, this person instead chose to blame and tell others that their pain isn’t real – it doesn’t count. That they can just suck it up, pull on the old bootstraps and fix themselves.
Please, instead, find it in your heart to open your arms and help others who are in pain. Listen for the people who need help. Show them compassion and love. And know that even if, in the end, they choose to leave you, like my mother did, that the compassion and love was not wasted. The kindnesses I showed her were not in vain. She felt them and they helped her at that time. Please know that the good doesn’t take away the bad and the bad doesn’t invalidate the good.*

“When we honestly ask ourselves which person in our lives means the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand.” Henri Nouwen

Be the one who chooses to give love and share pain rather than telling other people what they need in these situations or that they are wrong.

*paraphrased based on a quote in Dr. Who

life

Life is hard. It is. It’s hard. And it’s lovely. Both. One of my favorite bloggers (Glennon Melton at Momastery) says that life is brutiful. Brutal and beautiful at the same time. I agree. But here is the secret: you can’t know one without the other. When I was young I was somewhat obsessed with quotes. Especially the inspirational kind. I would type them up (yes TYPE on a typewriter) and cut them out into little strips of paper and put them on my wall. One of those quotes was “you can’t enjoy the sunshine without the rain.” I have no idea who first said it or if we even know. It seemed to strike a chord with me. I didn’t know that I would one day learn (as perhaps we all do) how true that saying is. You can’t know happiness unless you know sadness. You can’t know peace if you haven’t experienced turmoil. Our understanding of emotion is based on how we interpret our lives. Sometimes things have to be difficult. Sometimes things have to hurt a little. It is only then that we have a comparison for the good things. That’s how life goes.

I have several friends struggling lately. I worry for them. One of the common themes I find in all people who are going through a hard time is the “I just can’t wait until this part is over” thinking. I do it too. Maybe it helps us get through that part of life. Maybe it’s a defense mechanism – it makes us think about how things will be different, better, later on. It gives us a point to focus on and push toward. It’s like running long distance and finally seeing the finish line. I think. I don’t run, but if I did I can totally imagine me seeing that finish line and it giving me a little extra nudge to get there. If that’s how it helps us, I don’t think it’s a bad thing.

I have always been a “runner”. Not the racing kind, but the “I can’t get out of here fast enough” kind. It’s like my default way of dealing with stuff. I would run away from problems. Either by moving or by quitting or by using a variety of “chemicals” to help me forget. Sometimes I just used sleep and tv. Sometimes food. In the past few years I have experienced some things I can’t run away from. Things that you have to face head on or be broken by them. I believe those lessons have made me a better person. I want to share some of what I have learned. Maybe one day it will help someone. Maybe one of my struggling friends will find comfort from it.

1. Pain is inevitable.

Pain is part of life and you can not escape it all. No one can. When I was younger, trying to find myself, I took some meditation classes from a Buddhist center where I lived. It was a lovely place filled with lovely people. They gave meditation classes to the public every Sunday night. I enjoyed what I learned there. We had lovely lessons and even lovelier guided group meditations. One of the things that struck me was a set of phrases they used. They told us that if you feel pain while doing your meditation (say your back hurts from sitting too long, or your leg falls asleep, or your foot itches), don’t move, don’t try to wiggle it out. They said that life is full of pain. Trying to run away from it or change it does not help you. Instead they told us that if we experienced pain during our meditation the best thing to do was to accept it, breathe into it, acknowledge it and just be in the moment. That the pain would pass. Pain can be physical, emotional, and mental in the way I am using it here, and trust me, they all hurt. I believe this ties into the “you can’t experience the sunshine without the rain” thought process. If you don’t allow yourself to experience the bad, how will you know the good? I actually used the “breathe into it, acknowledge it” part a lot in years to come when I had painful surgeries, when my son was born, or when my chronic pain tortured me. But let’s analyse this in a real life situation, because let’s be honest, most pain doesn’t come when you are sitting in the Lotus position and breathing deeply with a calm mind. Let me use an example. When my mom was sick it was very painful for me. (for her more, but we are selfish beings) I worried about it. I stressed over it. I felt unable to help, and unable to fix things and unable to even be there the way she needed. Those are very difficult emotions for me. They caused a lot of emotional pain for me. I always fix stuff. But I couldn’t’ fix this. When I would quiet my mind and meditate and breathe into the pain, it helped me calm myself back down and find a more centered spot. It didn’t last long, but it did help me center myself again for a while. When my mom died it had been a really hard 6 months for our family. I can tell you almost all of the moments during a 5-6 day period of time with my family during the time of her death and funeral. I can remember all of the love, all of the pain, all of the breathing, all of the faces, all of the kindnesses. Because there was nothing I could do but sit, breathe, acknowledge the pain. Roll around in it. Wrap myself up in it. When time slows down like this, you know – you know you are in a life changing moment, and I am thankful I was able to accept it in this way. That’s not to say I didn’t have pain anymore. Or I still don’t. But I did my best to treat it like a part of life. A moment to learn from. When my Grandfather died I was not in a good place. I was using alcohol and drugs to calm my mind. I was hiding out from my family – not keeping in contact. I was losing jobs left and right. I was living in a dirty apartment. I was unable to process my feelings about his death at the time. Because I ran. I am happy I was able to learn that lesson later. Not all people meditate (though I recommend it to everyone because it’s awesome), but that doesn’t mean you can’t learn from the hard parts of life. Attempting to push the lessons you may be needing to learn away, trying to stop things from happening, trying to shelter yourself or others, does not help anyone. It causes more pain because your stress builds up. Your worry intensifies. You do not learn the lessons you are meant to learn. You do not progress.

It is the same way with our children. We want to protect them, stop the bad things from happening, keep them from being hurt. Some of these things are wise and good – like keeping your child from playing in dangerous chemicals, or keeping your baby from putting things in the electrical socket. But some things need to be experienced by our children – it’s how they learn. When my son was a baby I read that the way a baby learns to stand and walk is by falling down. Falling down and standing back up develop muscles babies need to be able to stand longer and one day walk. Falling down also helps them learn how they are oriented in space, cause and effect, how to control their bodies, and many more things. If we keep our toddlers from falling down, we rob them of the chance to learn. If you have read very many of my other blog posts, you know that my son struggles from time to time in different ways. One thing he struggles with is social aspects of life. He is loud, persistent, expectant, demanding. He knows what he wants and he WILL get it. Sometimes other kids don’t like these qualities – they call him bossy or mean or tell him to leave them alone. When this first started happening my instinct was to run to help. I was the mama bear just wanting to keep him from getting his feelings hurt, and to protect other kids too. Because he would throw big fits, I got into the habit of kind of hovering. I would always go with the kids so I could intervene at any moment. I would try to protect him from other kids AND himself. It wasn’t until he stopped the fit throwing most of the time that he started to really learn what other people expected of him socially. I realized that was because I was finally stepping back and letting him learn it on his own. I was finally giving him space to get hurt a little, or mess up a little, or even lose a friend so he could learn how to act in a socially acceptable way. I was protecting him too much. You can explain to a person HOW to ride a bike all you want. Until they actually do it for themselves they can not learn it. Now, sometimes he still needs social cues, and I try to give them if I am there and able to hear what is going on. But I also let him work things out on his own. If he asks what to do, or gets upset, I will give him advice or hints. But I let him fall down sometimes so he can learn. There is a time for everything, including being in pain. There is a time to sit and breathe in the moment and just accept the pain and let it roll around you. Robbing my child of his chance to have those moments didn’t do him any services. Like a toddler who’s parents don’t allow them to stand up on their own some, he would never learn to walk if I didn’t allow him to get hurt some.

2. This moment will never happen again.

This lesson brought to you by the words Cancer, Parenthood, Alzheimer’s, Death, and Love. Actually this lesson was brought to ME by those words. Life is fleeting. It really is. When you are 5 years old, each moment can last all day. When you are 35 you turn around and your son is in Preschool and you don’t know how it happened so fast. You can never get this moment back. And thank goodness for that for some of them, right? Like the ones where you are elbow deep in child poo and can’t reach the wipes that fell on the floor. Or when you son comes up to you with his hands full of something smelly and brown and says “Mom, I think there is poo on the playground.” (thanks to a friend for this example) Or when you are at the store and your son throws a fit because he wants something and you end up having to haul him out of the store kicking and screaming while everyone watches you and (in your mind) judges you as a bad mom. (hm, that’s a lot more potty talk than I am usually prone to. sorry for those mental images) Thank goodness some of THESE moments are fleeting. But some, some you do need to absorb. To slow down and look around you and make a mental photograph. To remember the exact way his smile turns up. To remember the laughter at your silly faces. To remember your husband and son holding each other, trusting each other, loving each other. To remember your mom walking with your son, holding hands, telling him the names of flowers, pointing to beautiful things for him to see. Things you did not see yourself. If you are constantly in a rush, how do you absorb and remember these? If you can’t slow down and stop pushing forward, stop forging the way, how do you remember the lovely lovely moments in life? How do you let them into your heart? When I was at my sickest from cancer – when I was at my mom and dad’s house with my baby – my husband 500 miles away – trying to prepare for another surgery – when I couldn’t lift my son – I sat and looked at him. I watched him. I touched his hand, stroked his toes, kissed his head. I handed him the soft ball he liked to hold, or held a toy up for him to reach for. I tried to absorb all of the moments I could. I had nothing to do but sit. Sit and rest and let my body be strong again. And so I did. I sat and I paid attention to those things in my life I needed to remember. When they wheeled my down to surgery, doped up on Versed, all 4 times, I had one beautiful thought in my head. I remember consciously choosing to drift off into never-land with the image of my son yawning in my head. The first time was spontaneous, but it calmed me so much I made it the routine. From the beginning he did the funniest cute little pucker of his lips at the beginning of his yawn. I loved it with all my heart – that moment of pucker, that second of adorableness – and I clung to that image. I let that image be my life raft, bringing me back to him when the surgery was over. I couldn’t help but think that this is what it must feel like when we die. Flashes of the most precious things in our life. A look, a touch, a kiss on a forehead, a pucker. Slow down. Slow down and see these moments. When you are bent over a pile of paperwork, or trying to get the dishes done so you can help with homework and get the kids in the bath, or counting the minutes until bedtime…. stop. Listen for a second. Look around for a second. Capture a moment instead of pushing them away.

3. No one can live like this all the time.

When I was at my sickest, as I mentioned in #2, I was at my Mom’s house. She watched Grey’s Anatomy every week at that time. I was off my thyroid meds and couldn’t follow 5 minutes of anything, so I just sat and watched with her. One of the episodes had a scene – and this scene is branded onto my mind – involving “enjoying every single moment.” One of the women characters (Izzy maybe) had had a near death experience of some sort, and had been going around all week telling everyone to enjoy every moment, pointing out the beauty in every single thing. Telling people to just be thankful they were alive and stop bickering, thrusting her amazement at the beauty of the world onto everyone else. One of the other women characters (Meredith perhaps) told her to knock it off. She said she was glad that her friend had this experience, and that it helped her see the beauty in every moment, but that most people just can’t live like that all the time. Most people are just trying to get through the moment. ** That hit me as well. It was true. While I was sitting, getting stronger, absorbing every minute I was able to stay awake, my family was bustling around me. Arranging child care help, feeding us, cleaning up after us, helping me with showers, getting up in the night with my baby. I doubt they were able to absorb much of anything, honestly. And I realized that sometimes it isn’t the “season” for absorbing and loving and seeing the beauty. Sometimes it the season for pushing ahead, getting up and going forward a few more steps, pushing yourself to keep going. Like a child learning to ride a bike, if you fall down and just sit there and wallow in the hurt and think about how scary it felt to fall, you will never get on again. If you don’t pick yourself up and try again, you won’t learn to ride. Sometimes it’s the season of getting up and trying again.

4. Life is easier with those you love.

Find strength in those whom you love. In those who love you. Find happiness and peace and a place to be safe in your friends and family (whatever your definition of family is). Give to them as they give to you and everyone’s load will be lighter. I could go on all day about this one. Just know that in every hard moment, and in every good one, the people you love will make it better. And remember not to only call them when life is hard. Definitely call when life is hard, but also when life is normal or happy. Share all the times, not just the bad ones. My husband’s family is better at this than I am. They make time to get together, they drop by each other’s houses for coffee and tea. They see each other all the time. I have been trying to work on this more – getting together with people who make me happy, and children who make my son happy. We all need that in life.

I know that none of this is easy. Again, life isn’t easy. It’s messy and it hurts and it brings you to your knees sometimes. But it’s also beautiful and full of love and beauty as well. Life is brutiful. Live it accordingly.

** You’ll forgive my lack of knowledge about this episode of Grey’s Anatomy, I hope. I never was a devoted follower and I was so sick I didn’t know what was going on around me. In a thyroidless induced walking coma. If any devoted fans know this episode I would love to watch it again. It may or may not have been around the time of the “red mist” episode in which there is a bomb in the hospital – I remember watching that episode in the weeks I was there as well.

Fat, Fit, Free

There has been a large amount of press this last few weeks about weight, and fat shaming, and people not feeling good about themselves – or about people feeling good about themselves despite living in a culture that tells them they shouldn’t. Or about people who work really hard/hurt themselves/go to extremes to feel good about their body.

A friend of mine posted about it today and I loved her post because it wasn’t just about the societal issues. It was also about health. It inspired me to talk about my own story.

My opinion on this comes from a different point of view and I feel it is a valuable opinion that might help others out there.

First, a little background.

Most of the women I grew up around were a healthy weight. I remember them talking all the time about needing to lose weight though. My mom was proud of the fact that she was 98 lbs until after her second baby – she was also short so it wasn’t an unhealthy weight for her. After that she was always talking about the 5-15 lbs she wanted to lose, though I never saw why she needed to. Some of the other women in my family had closets full of different sized clothing because they were constantly trying to lose weight and went up and down the scale. Most of the women in my life, however, were a healthy weight and they were not super active, but busy with family and work and such.

As an elementary school child I was skinny – much more skinny than most of my friends. I remember being teased about it a little. Not much. I was never athletic – I was clumsy and didn’t enjoy running or sports or PE. In middle school and high school I was healthy – definitely not over weight but not super skinny. I still didn’t enjoy sports or exercise, except weight lifting. I had injured my ankle twice and had to do physical therapy after surgery. Part of that included going to the gym and I liked feeling strong and healthy when I could lift weights. When I was sixteen I went through some situational depression. I lost weight and the doctor had my mom give me carnation instant breakfasts in addition to anything she could get me to eat. That was the last time in my life I was underweight. When I went to college I put on a few pounds – the freshman 15 – because I was eating top ramen and noodles and cheesecake. I did exercise at the field house though and enjoyed that, especially with a friend.

During college I was put on a bunch of medicines for “psychological issues” and many of those had a side effect of gaining weight. After that I perpetually went up and down on the scale. Dieting, exercising, losing weight, then gaining it back again, being sedentary, eating poorly.  Most of the time I was a little overweight. Sometimes I was a lot overweight. That’s hard to say. But it’s true.

When I was 24 I had my gall bladder out. I found out that gall stones are often a result of extreme weight loss, which I had recently experienced. I had been dieting in a very unhealthy way and lost a bunch of weight and my body created gall stones and by the time they took it out it was gangrenous. I had a horrible recovery, staying in the hospital for 28 days and numerous drains placed to try and stop the abscess in my gut. I was so weak and sick when I got out I couldn’t walk around my apartment. Little by little I gained back my strength, but I don’t feel like I ever really got back to the health I had before that. I was also putting a lot of partying miles on my body. I’m sure that didn’t help.

I look back now and I wish I had realized the wonderful thing it is to have a healthy body. I wish I had realized that having a body that could run and jump and exercise and take a walk without asthma acting up or my vocal chord collapsing was a wonderful thing. I went through periods where I was more active and physical – running and eating well and going to exercise at the gym. I went through times in my life when I was less active – rather sedentary – and didn’t use my body at all. I went through times when the fuel I put into my body made me feel healthy and clear. And times when it muddled my brain and other body parts. I went through times where the work I did was very physical and I enjoyed being strong. I went through times where my work was very sedentary. But through it all, one thing never changed. I didn’t know how wonderful it was to have a body that worked well and allowed me to use it in strong, healthy ways.

Wait, let me say that again. I didn’t know how wonderful it was to have a body that worked well and allowed me to use it in strong, healthy ways.

And then cancer came into our lives. And my body forever changed. I won’t list all the ways it has changed, but there are a few that are important to this discussion. First – I have asthma. AND a paralyzed vocal chord. Sometimes breathing is difficult. Especially when I am exercising. Protip: Ya gots ta breathe to exercise. I have several parts of my body that are permanently damaged in ways that cause me extreme constant pain. I have limits to what my body can lift. I can no longer lift weights with anything but my legs. I can’t lift my body in any way – no push ups or pull ups or burpees or whathaveyous. I can’t lift my son. I can’t even do many of the household/gardening type activities I used to do – my pain flares and I am down for days. Carrying groceries is a monumental task. I no longer have a thyroid and no matter what they tell us, a synthetic pill just doesn’t completely replace the natural chemicals your body makes. I have fatigue issues. Many thyroid patients do. I have found ways to deal with the pain, with the help of some awesome doctors. But I have yet to find ways to deal with the fatigue. Still hoping to find that part of the puzzle. I get sick extremely easily. It seems we are sick every month and when that happens, I am in bed unable to complete daily necessities, much less exercise.

And now – now I see what a wonderful thing it was to have a healthy body. To have a body that worked the way it is supposed to. I see what I shouldn’t have taken advantage of. But… that is the way of health. You never really know what you have until it’s gone. You don’t truly appreciate being healthy until you aren’t. You don’t truly appreciate having a strong body until you don’t.

When I read these articles about “losing weight and being healthy and crossfit and boot camp and if I can do it you can too”… it makes me angry. It makes me angry that I can no longer do those things – because I think if I could again I would. I would never stop running and lifting weights and doing crazy crossfit workouts. If I could feel strong again I would never want to let that go. It also makes me angry when others don’t realize that not everyone is like them. Not everyone CAN do those things. That “if I can do it you can too” attitude isn’t the truth. I want to scream: “There are plenty of people out there who literally CAN’T do what you do. So stop shaming others and go enjoy your healthy body.” I love that they are encouraging others to use their bodies in a healthy way. If you encourage in a certain way, then it WILL help. But shaming others into feeling fat and “not the way they could/should/ought to be” is wrong.

Could I do more? Yes. I could. I should. I work towards that. But my body will never be the same. I will never do what I did 7 years ago. I will never be strong and healthy and full of energy again. I will never feel like I once did. I honestly think about whether I will live another 20 years and what I will feel like at that age a lot. The other day I said “blah blah blah in 20 years…” to my husband. He said “do you think you will live to be that old?” He was teasing. And he wasn’t. I don’t want 20 more years of pain and exhaustion. I don’t want to live in a body that often feels like a prison.

What’s the point of this post? The point is this: I encourage everyone I know who has a relatively healthy and strong body to use it. Use it in ways that make you feel good and alive and happy to be here. Use it in ways that make you feel like you are the king or queen of the world. Jump and dance and run around with your kids. Ride a mountain bike. Climb a tree. Go on a zipline. Run up a mountain. Feel the sun on your face. Backpack with your friends. Go to the school jogging club in the mornings with your kids. Take martial arts with your friend, or boxing, or ballet. Go rafting and ice skating and slide down slides. Go to concerts and dance until you want to pass out. Do all of this for those of us who can’t anymore. And do it for your family. And do it for you. Don’t do it because you want to see a certain person in the mirror. Don’t do it because you feel like you have to weigh a certain amount of pounds. Do it because it feels damn good. Do it because you are alive and you want to FEEL alive. Don’t put pressure on yourself to weigh in or measure up or have a certain body type. ENJOY your body. That’s the magic of the human body. It can be enjoyed. And the more you enjoy it, the better you feel. And the better you feel, the more you enjoy your body. It’s a wonderful “mysterious” cycle.

Use that cycle – love your healthy body – allow yourself to realize that all that really matters is if it works well. And if it doesn’t, well, you and I have a lot in common – and we still find ways to be happy and love life. That’s the big secret. Love life. If you do that, the rest is just gravy.

The Good Cancer

I have had 3 conversations in the last 3 weeks with people about thyroid cancer and it being the “good one”. One of my support groups also lost a lovely, young, vibrant lady to thyroid cancer this week. So, I decided I need to write another post about it.

(Please don’t feel offended, people I had these conversations with. I feel like if I don’t use the experiences I have had to help others, then it is all in vain. I participate in several support groups because I have a lot of advice to give. I try to educate about different parts of thyroid cancer. I just want to get the word out and I’m not upset or anything.)

When most people get diagnosed with thyroid cancer the doctor says “BUT, if you have to get cancer, this is the one to get.”

Totally true. That’s exactly what my doctor said and what numerous doctors and nurses and lab techs and radiology techs have said since.

Now, I know that doesn’t sound so bad. I know that it is meant to be encouraging. In fact, I felt encouraged by it at first. But I feel it does more damage than good. The following are the reasons I feel that way.

When my doctor (whom I love) diagnosed me he said “well, you have thyroid cancer. that’s the bad news. BUT if you have to get cancer, this is the one to get. We just take it out, you do a pill form of radiation, and you take a pill for the rest of your life and you are back to normal.”

First of all, even if I had had a straight forward, simple case, this isn’t actually what happens to most of us. I know over 500 thyroid cancer survivors and none of them had that experience. ALL of them have several long term lasting effects. I compare that to the 50 breast cancer survivors I was in an IRL women’s cancer support group with, only about 50% of them had any kind of long term effects. They were all surprised by my stories of what I felt like after and how my body reacted to not having a thyroid and such. Yes, some had neuropathy from chemo, some had lymphadema, some had burns from beam radiation. All had permanent changes in their actual breasts of course. But most were able to go back to their normal life after their surgery and treatment were over. (I am not saying breast cancer is easier or better. Just comparing my experience with the long term effects.)

Here is a small list of the side effects my thyroid cancer friends experience (I will be posting again with a more in depth look at this later): Fatigue, heat sensitivity, cold sensitivity, night sweats, hormone imbalance, early menopause, hair loss, skin changes (greasy, dry, infections, breakouts), lymphadema, sleeplessness, memory loss, short term memory problems, confusion or foggy brain, joint pain, muscle pain. Hypocalcemia, hypo vitamin D (both very serious problems). Problems with digestion. The RAI (radioactive iodine) almost all of us take causes it’s own long term problems: salivary gland damage which leads to dry mouth, tooth decay, bone loss, kidney or intestinal tract scarring and complications. One woman I know had her pancreas scarred by it and has had the absolute worst digestive problems that have required surgery and more. Dry eyes, tear duct damage, infertility. Once you take a treatment dose of RAI you can’t get pregnant or nurse for a year or it can harm the baby. Just the treatment itself is torture because you have to go off your medicine to become extremely hypothyroid (I was to the point that I couldn’t walk on my own or hold my newborn) and you have to go on a low iodine diet for 2 weeks. That is difficult when you are so sick from being off your medicine because you have to cook everything yourself. But the worst part to me is being isolated after it. We are told to stay away from adults for a full 5 days and small children or pregnant women for 7. In some other countries the times are much longer. Up to a month. When my friends who had chemo or radiation went to treatments they had someone take them and hold their hand and help them home. I had to go alone (no one can be in the car with you after) and swallow a radioactive pill and then go straight home and lock myself up away from everyone else for a week. My baby (5 mos) had to go stay with my parents for a week. It was torture for me to not have that human contact with anyone. And I got incredibly ill from the dose – I threw up for days. Imagine – you just had cancer surgery, you have been sick and emotional for weeks, and now you swallow a scary radiation pill that they bring out in a lead lined box and then they rush you out the back door and tell you to go straight home. You are sick and alone and extremely emotional (that’s what being off your meds does). And you are all alone. The radioactive iodine also gives you a higher chance of getting breast, uterine, ovarian, testicular, colon and other types of cancer. The most common side effect from the surgeries alone is vocal chord paralysis (which isn’t pretty, trust me) and parathyroid damage, nerve damage, and muscle damage.

So, let’s get beyond the side effects (this is by no means an all inclusive list) and lets look at thyroid cancer itself. Thyroid cancer DOES have one of the highest survival rates. Because we have the radioactive iodine we have good success with being cancer free one day. Thyroid cancer also has one of the highest recurrence rates. If my doctor ever classifies me as cancer free, I will still have to continue following it for the rest of my life because it is likely to come back at some point. Let’s put this in perspective: one friend of mine said “well, it’s not like pancreatic cancer that is most often a death sentence.” No. It’s not. Some people die from thyroid cancer, but it’s most often from a more aggressive form of it. The most common form is papillary and we have a good treatment rate with that. If you get thyroid cancer your chances of having it treated and taken care of are pretty high. If it has metastasized outside the neck the chances of being cancer free drop considerably – just like any other cancer. If it is a more aggressive variant (like mine) it changes your prognosis. Some thyroid cancers don’t respond well to RAI and they have to be treated with other meds or just surgically removed, or sometimes beam radiation can be used. Some thyroid cancers (like mine) mutate and stop responding to RAI. These thyroid cancers become much harder to treat as well.

One of the ways we treat our cancer is to take a “suppression dose” of thyroid meds for at least several years after surgery. I have had a lot of people assume this means I will have lots of energy and loose weight. That’s not how it works unfortunately. Being on a dose that constantly keeps your TSH in the hyper range can cause you a great deal of daily discomfort. It’s like running a car engine too hot and too fast for hours. What happens to it? It burns out or has to be shut off for a while. The same happens with us – we crash daily. We learn to dole out our energy carefully. Not spending too much energy on one thing when we know we will need it later. For me this has become a delicate balancing act. I take breaks during the day to just lie down for a good 15-20 min. If I don’t I will be exhausted by dinner time. If I know I am planning an outing with my son for example, I don’t get up and take a long hot shower and cook a big breakfast and do laundry and pick up the house before we leave. I do the least I have to and go early with my son so that by the time I have used up all my energy we can be headed home. Then I have to rest at home before attending to the normal daily things. Thyroid medications are not the same as your natural thyroid hormone. They don’t act in your body exactly the same way your natural hormone does and they have their own side effects or effects on the body – especially at the high doses we take. Mood swings, irritability, depression, anxiety, sleeplessness, digestion problems, skin problems, hair loss, memory problems, heat intolerance and more. Heart problems are one of the scariest side effects. Being on this high dose gives many of us palpitations or tachycardia. I have the latter and take a daily medicine for that. I take a daily medicine to help combat the effects of the other daily medicine I take…. JUST taking the medicine we have to take every day – especially when we have to take the higher doses – changes our life dramatically. Without the medicine we would get very sick, lapse into a coma one day, and eventually die. We literally can’t live without it.

To me, the worst part of health professionals telling me that my thyroid cancer is the good one to get is the attitude that pervades the medical community about it. First of all, I had ANYTHING but a normal case. I had great treatment once we found it and I have had the best doctors. Without them I would be dead. My first surgeon spent 5 extra hours because one tumor was wrapped around the nerves that control my mouth. He really wanted to get it out without damaging them. He was actually worried I wouldn’t be able to talk when I woke up. But I could. He did a great job. My body hasn’t reacted to the surgeries the way most people’s do and I have several permanent disabilities from them. I had 4 surgeries in 3 years and several treatments. Not to mention all the blood tests, ultrasounds, PET/CT scans and more. I am thankful that I am here to spend my life with my son and other family, but my life has changed in hundreds of small ways, and I don’t think it will ever go back. To tell people newly diagnosed with cancer – any cancer – that their road will be simple or easy does them a disservice. Do I think they should scare us, do I think they should tell us horror stories? No. But I do think they should prepare us. Prepare us that this IS cancer. This MAY change your life.

As far as the medical community’s view on thyroid cancer goes, that in itself upsets me. No one knows what to do with a thyroid cancer patient who is off their meds and comes to the ER with a very high fever. (this happened to me) Very few doctors know what is best to do in a thyroid storm or a calcium crash. In many parts of the US we don’t see an oncologist. I tried to go to the major cancer center here and they told me to go back to my endocrinologist. My endocrinologist follows my cancer and she is a good doctor. But I don’t understand why a cancer center excludes a cancer patient of any kind. I missed out on all the things a cancer center offers – financial help, social workers, psych help, family counseling, etc. because I had “the easy cancer”. When I talk to my other doctors about my health issues I have to explain TO THEM why we keep my synthroid high, why I HAVE to take vit d and calcium. I have to tell THEM why I can’t take extra dietary fiber because it affects my synthroid absorption  I have to tell THEM why birth control pills will affect my dose of medicine. It is a sad state of affairs when the medical community sees your disease as easy and nothing to worry about to the point that they have litte education about it at all unless it’s their specialty. It makes it difficult for us to get the care we need.

I want to talk about one more thing. Most of us have a PTSD reaction to doctors and testing and hospitals now. Most of the gals I know that went through the surgeries and the treatments and the trying to figure out what was wrong in the first place and the biopsies and the scans all have a very difficult time with doctors now. If the medical community (and lets face it – the world) tells us that our cancer is the easy cancer and doesn’t listen to our concerns, what are we supposed to feel? Surgery and treatments and tests alone make many people scared or anxious or affected in some ways long term. Couple that with the frustration of no one knowing what to do with us, and everyone telling us we got lucky when we got OUR cancer and it’s a recipe for disaster. Many of us had a hard time figuring out what was wrong and many of us have a hard time getting the kind of treatment we need long term. There are so many different “standard procedures” thyroid doctors follow in these cases that we don’t even know if we are getting the “normal” treatment or not. Even the isolation instructions vary from hospital to hospital after RAI. We don’t know how to judge whether our treatment is going well or not. How are we supposed to feel about doctors? Because at this point most thyca survivors I know have a hard time trusting medical professionals in general and have PTSD type reactions to even getting a regular physical.

This was a long post, and it doesn’t even cover all of what I find offensive about labeling thyroid cancer as a good cancer. It’s CANCER for the love of man, can’t we all at least agree that cancer isn’t good – no cancer is good? Please.

So, if you are a medical professional or know one, here is my advice. Simply change the dialogue. Say something along the lines of “Well, thyroid cancer IS normally one of the most treatable cancers out there, so I am happy for that for you. Still, I know, no cancer is easy or good and I’m sorry you have to go through this.” I believe it would go a long way toward helping out thyroid cancer patients.

What not to say to cancer patients.

My dear dear friend was just informed (over the phone by a nurse – ugh) that her cancer is back. After 8 LONG years of being in remission she has to fight this jerk again.

It is very difficult for me to just sit when something like this happens. However my friend lives far away and there isn’t a lot I can do this minute.

So….. I decided to write a post about things that are unhelpful to say to a cancer patient. (yes, this is just my opinion. Some people may disagree. That’s fine – they are allowed.)

1. “What doesn’t kill you makes you stronger.” First of all, this has as the first part of the statement the admission that the thing you are battling could kill you. Seriously? That’s what you want a cancer patient to focus on? Second of all, sometimes when you are going through cancer – going through the surgeries or the treatments or the tests or the waiting – you don’t feel strong. Not at all. You feel weak and vulnerable and in need of some strength from others. Or possibly in need of a day or two in bed – with no responsibilities and some funny movies and some tissues. Maybe some tuna noodle casserole. Some days you don’t want to be expected to be strong. Third of all, for me, this statement makes me want to tell “being strong” to screw off and head back to bed. Just because I’m a rebel.

2. Don’t talk about your uncle’s cousin’s brother who died from the same cancer. Or your friend who had to have chemo and was SO SO sick. Or how everyone in your family has had cancer. And died. Really, just don’t talk about death unless they bring it up. And then just listen for the most part.

3. “I’m sure you will be just fine! You are a fighter!” Thanks for the encouragement. What if I’m not sure I have any fight left? What if I’m not sure I will be fine. It feels like an empty statement. Don’t try to be overly positive. (“Well at least you won’t have to shave your legs when you have chemo.”) What would be more helpful is for someone to say “Wow. I have no idea how you must be feeling (even if you think you do). But please know am here for you to talk to. Or to get out of the house. Whatever you need.” AND THEN be there for them when they call. Listen.

4. “Let me know if I can do anything.” Cause honestly, we don’t have the energy to go around asking for help and telling you what we need. We are exhausted. We can’t begin to tell you what we need. We can’t even make ourselves a list of what we need. The best things you can do to help is this: “I am going to bring by dinner tomorrow night around 6. What sounds good?” “The gang at the office want to make some freezer meals for you. Is there anything your family doesn’t like or can’t eat?” (make sure to include some healthy foods in this – often foods brought over are fatty, carb loaded and heavy. Cancer patients need good nutrition. Add some veggies, a salad, or a nice fruit bowl for dessert.) “I can help babysit on Thursdays and Saturdays at these times. For several weeks. Could I take your kids to the park so you can rest?” or “When you have your surgery, I can watch the kids, also, the next few days so your support team can take care of you instead of feeling frazzled. Here is my number.”

5. When someone tells you that they have cancer, don’t say “My kid has had the flu all week. And you know how I hate vomit.” (yes, that really happened) “I had an ovarian cyst that put me in the hospital once. I totally know how you feel.” I would think this would speak for itself, but apparently it doesn’t. When someone tells you that they have cancer a lot of people don’t know what to say. Try not to fumble for words and just listen. Say “I’m so sorry.” Say “How are you feeling today? Do you want to talk? What is the plan from here forward? Can I go to your doctor’s visits with you?” Etc. Don’t compare, don’t assume you get it.

6. “Wow. That sucks.” Really? Cause I know it sucks. Thanks for the reminder.

7. “God doesn’t give us more than we can handle.” Really? Cause right now I feel like I have a hell of a lot more than I can handle. Not only that, but if I DID believe in the kind of God you are talking about, I wouldn’t believe he/she was sitting somewhere watching me, measuring just exactly how strong I am and giving me JUST the right amount of crap in my life. JUST THE RIGHT amount of hell I can personally handle. Letting me feel just the right amount like I have been abandoned by all of the good in the universe and that I can barely BARELY get through the day laying in bed, much less do anything else. That he knows EXACTLY where my breaking point is, and even though I think it was 2 surgeries and 2 years ago, apparently I was wrong. That image – it doesn’t help.

8. “Everything will be just fine.” Maybe it won’t. And not only that, it’s ok for people to be scared. Say “I know you are scared. I can’t imagine how you feel. I am scared for you. Do you want to talk? Hold hands? Hug? Do you want your Ipod with your “soothing music” playlist? The movie “Footloose?”

9. “My aunt has a natural treatment that CURED her cancer. No, she wasn’t ever actually diagnosed. It’s made out of dirt, dust mites and spring water. It’s only available in Italy – but it totally CURED her.” I am just going to leave it at that.

10. Don’t try to push treatments, different doctors, surgeries, different hospitals, etc. If your friend asks, tell them “this is what I think helped my cancer the most…” “this is the doctor my doctor recommended.” Right now their treatment plan is the only thing they have control over, and they need to feel confident in their decision making. I had a doctor (who I love) send me to a new surgeon. I had another doctor (who I also love) ask me to please go to a different surgeon just for a second opinion. When I said I didn’t want to, she respected that. Turns out I really should have gone to the second doctor. I saw him for the next surgery and he did the one thing that truly turned my course of treatment around. She never said “I told you so” or “You should have listened.”

11. “Oh, I heard that’s the best cancer.” or “Oh, you don’t have to do chemo? You are so lucky.” or “Well, at least it’s not _______ cancer. I know three people who died of that.” There is no best cancer. There is no best cancer treatment. (yes chemo sucks. big. so does radiation, radioactive iodine, surgery, bone marrow transplants, etc.) Everyone’s cancer journey is different, and most of us feel like our road is pretty much sucksville.

12. Don’t ask if they will loose their hair, what their new boobs will feel like, if they will have a lot of scars, etc. Honestly – they don’t know and you don’t need to.

If you DO happen to do any of these things, or worse, just stare at them in horror and avoid them for a week, the harm is not irreparable. But don’t pretend it never happened. Say “I’m sorry I acted like a moron. Can I try again? I’d like to be there for you. I was shocked, but I’d like to show you I can be there.”

The things that are helpful:

ACTION. My mom is my best example of this. If you were having a kid she packed a bag. If you were having surgery, she packed a bag. I ended up in the hospital for a week with sepsis, she packed a bag. I had a cousin who needed surgery and my aunt had something that prevented her from helping. Mom packed a bag. She didn’t ask, she didn’t hesitate. She came to my baby shower one weekend. The very next day after she left I was told I had to go on bedrest. Guess what? She packed a bag, got her work stuff to bring down, and came right back. The next day.

I’m not suggesting you move into your friend’s house or head across the country for someone you haven’t seen in 10 years (unless they ask and you can). But take over dinner. Send a pizza gift certificate. Take a funny movie. Take them out to a movie or dinner if they can go, or take it over to their house if they can’t. Send a card. Make a phone call. Plant some flowers in their planter. Do some laundry. Tell them you know a great housekeeper and you are sending her over on your dime for a couple months. (I wish I could do this for all my cancer friends.) DO something.

Listen.

Hug.

Smile.

Cry.

Follow their cues.

 

Edit: I wanted to mention one other thing. My mom was a great nursemaid. She helped me get dressed, prepared sitz baths, helped me learn to nurse, helped me dress wounds, helped me put on a bra when I couldn’t, propped me up in bed when it hurt to lay down, took care of my son and my husband, emptied drains, helped me pull out stitches that had become abscesses (with my dr’s direction). My aunt also came to help me for a week after one surgery and she has always doubted whether or not she helped me. She did. She cleaned my closets, she entertained and exercised my son, she re-potted my plant, she fed us, did laundry, took me to the store, helped me walk down the block, made sure my house was spotless before she left so I didn’t have to worry about that part of things. She made me laugh. She was kind. She was just what I needed. A breath of fresh air and lots of good energy. Everyone can help in their own ways and according to their own personalities. Never doubt that there is something you can do do help someone who needs it. What you can do might be just what they need.

On Getting a Cranial Angiogram

So….

I have migraines. I have talked about them before.

I have had a migraine for over 2 months. I have gone to the ER several times in that time frame. I have gone to Urgent Care and my doc several times. It has sucked. Bad. Pain wears you down. It just does.

I have been seeing a new pain management doctor. (I fired my neurologist after he did absolutely nothing to help the migraines and then called me a drug addict.) He gave me 2 things that have helped a little. He also gave me an appointment to do Botox next week. I waited 3 months to get in to see him and I also waited another month to get in for the injections.

I am hoping beyond hope that this will be the thing that helps. Honestly at this point if someone told me walking on coals or being hit in the head with mangoes would help I’d give it a shot. Pretty sad when you get desperate to feel normal. Or even just free of pain.

HOWEVER – at my last ER visit they decided to do an MRI to make sure I wasn’t having a stroke or something. Usually they just treat and release because we have done so many tests. BUT they felt they needed to look since it’s been so long with this particular migraine.

On the MRI there were some abnormalities in both my arteries and my white matter. The abnormalities in white matter can be numerous things. But the abnormalities in arteries can be serious.

SO, my PCP sent me to a Rheumatologist. She did a whole bunch of blood work and scheduled me for a cranial angiogram. Not wanting to go through that if it wasn’t necessary, I asked, “Do you think this is really necessary?” She said if it was her she would do it. Because the biggest thing we wanted to rule out – vasculitis – is very serious and deadly and has to be treated right away with serious meds. Ah. So calming.

SO, on Tuesday I had a cranial angiogram. Basically they start at your femoral artery. They poke a giant hole in it with a giant catheter and then run that all the way up your body IN YOUR ARTERIES to your neck. (Ok, the doc said the catheter is really smaller than the ink refill on a ball point pen. But it feels bigger.) The upper part of your neck. LUCKILY they don’t stick it in your brain like I thought they did. THEN they push some dye into your brain and they take pictures of it with a fluoroscope. I was very happy that this particular doctor believed in pain killers during the procedure and sedation. I wouldn’t have argued about having some pain killers after, but you take what you can get. I hear that some places you have to demand sedation. I wasn’t totally under. I remember a lot of it – and I remember what it felt like to have that dye in my brain. Which was hot and full and uncomfortable.

The nurse said I was a perfect patient. I don’t think anyone ever said that before. So that’s good.

When the procedure is done you have to lay flat for 3 hours and then you can sit up for 1. You can’t stand up, even to pee apparently, until that 4 hours is over. They send you home with instructions to lie down the rest of the day and take it easy for a few days.

*Apparently* so you don’t bleed to death. I mean, it is the femoral artery. It only takes a couple minutes to bleed to death from it.

When we were done the male nurse put pressure on my wound for 20 min. And I mean REAL pressure. I am not sure I could put that much pressure on someone for long if they were bleeding to death. Then the nurse checked it every 15 min or so. Then my husband was told to check it every hour at home until bedtime. These people are SERIOUS.

What they don’t tell you: It’s not the most pleasant thing, but with the miracle of modern drugs it’s not so bad either. You will bruise. Badly. Ice helps. If you don’t have a partner or friend willing to look at your privates and make sure you aren’t bleeding to death, get a good hand mirror ahead of time and have it handy – cause it’s not that easy to really get a good look down there. It’s hard to eat lying perfectly flat. However since you didn’t get to eat the previous 13 hours or so, you will want to. I did get grilled cheese, fries, and a drink with a straw to work. And my husband “lovingly” fed me dessert. Which I didn’t need. But it sure made me feel good.

Bottom line: The angiogram was clean. Which made me feel like we did it all for nothing. And kind of violated in a way. Which all procedures seem to make me feel since my big medical battle. But that’s a story for a later date.