Good Days!

These last few days have been heavenly. I have felt so good, so much like myself again. I've thought several times, "I won't go back to where I was at. I won't let myself fall from this good place." But I know better than to believe that. It's not that I don't have hope or optimism or faith. It's that I know from experience that it's not healthy for me to think that I have somehow overcome this beast. The darkness will come again, and it's better for me to accept that rather than try to deny it. So instead of thinking that I've beat this once and for all, I'm simply savoring, thoroughly enjoying, and relentlessly giving thanks for every good day, hour, and moment while this lasts.

It's days like this when I am able to remember that good days always come after the darkness. It's worth holding on through the deepest pain. I'm doing better than I often think I am. I am loved and needed by my family. I can be a mom to another child in the future. All those lies (I'm not worthy, I'm worthless, I'm failing, I'm unlovable, I'm dumb) are indeed lies, and I can't let myself believe them when they scream at me for days or weeks at a time again.

I'm in such a good place right now, and I can see how much growth and progress has taken place in my life in the last year. This is a good thing, a very, very good thing! And it will continue to be a good thing, even when I am overcome with the burdens of mental illness again.

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Finding Joy Through "Beating the Blues"

When I am depressed, I struggle doing anything.  Partly because I have no motivation or energy to be productive, and partly because there's no feeling behind anything I do.  I feel like I'm constantly wandering around with no purpose or direction on those down days.  I try to do something, but as soon as I start, I wish that I could be done and go back to bed.  I try to check a few things off of my to-do list, but that's all they are-- checks.  I don't feel happy during or accomplished after.  There's no feeling at all, except sadness of course. 

It feels like eating food and not being able to taste it, watching a movie of my life instead of experiencing it myself, or being alive but not actually living.  There's nothing satisfying about it, which eventually makes it seem pointless to even try. 

This is how I've felt the last few weeks since it has started getting cold outside, but especially this last week, because of some other circumstances.  When it started getting cold and I could feel myself slipping into a winter darkness, I decided that I needed to come up with some things that could help me "beat the blues."  My rules for these activities were that they had to be things that could bring me a feeling of accomplishment when I completed them, and they had to be things that I could find a way to enjoy, even when there's not much feeling to be felt in anything.

I got to work setting goals for myself, and this is what I came up with:

  1. Make as many crocheted nativities as people order.  Seriously, doing this has helped me beat the blues so much, because it is relaxing, it feels good to get each piece done, it makes me push myself, and I get to see the joy it brings to other people when they receive them.  
  2. Practice and learn more about photography.  Every time I take advantage of an opportunity to take pictures, it brings me joy.  I feel good seeing myself improve, and I enjoy having the chance to be creative in a way that isn't stressful for me.
  3. Work up to swimming a mile.  I have grown to love swimming in the last while since I started going to the gym.  I started out being able to only swim a few laps before feeling completely exhausted, but I have seen myself grow stronger and push myself harder to do more.  I love the feeling of accomplishment when I get done swimming farther than I thought would ever be possible and finding the power within myself to overcome the heavy weight of depression.  It feels freeing, like I have finally found something that doesn't let the depression win over me.
  4. Sew spring dresses.  I don't always love sewing, but I do love making little dresses.  Lately, I have enjoyed looking for discount fabric in the scrap bins at the store and using the cute fabrics I find to make lots of little girl dresses.  Something about making a piece of clothing and then seeing a little girl wear it fills me with joy!
I still have days where I struggle so much doing even these things, and I am learning by force how to be more flexible and patient with myself, but I am finding so much joy in doing what I can to overcome the beast that mental illness is.  I will make it through this winter, and I will beat the blues!!


That We Might Have Joy: Brad's Story

I'm Brad Jones.

I have tourettes, autism, obsessive compulsive disorder, non-verbal learning disorder, bipolar, and I am very shy.

I feel extremely awkward in almost all social settings, regardless of big group settings or small group settings. I function the best one-on-one, focused talking back and forth to just one person. I am used to being bullied directly, from a distance without even being spoken to, and behind my back in venues where I'm not present.

I'm that guy no girl is willing to date or marry, because my illnesses make 99% of LDS girls that know me or know of me consider me an embarrassment to be seen with, despite how I am high functioning and have have dramatically refined my social skills, despite still struggling in them. They see dating and marrying me as a lot of babysitting, where marrying me would be an eternal babysitting job.

I have found joy in this huge stack of problems by feeling more appreciative of the people who treat me right than if I were not having struggles.  Also, these constant struggles make me feel very inadequate, and in turn, keep me from becoming arrogant.



Ever since Saturday, I have been thinking about perspective.  Last week was so bleak and dreary every day-- rain, very little sunshine, and lots of depression for me.  I love a good thunderstorm, but days and days of drizzling rain get me down, almost without me recognizing why I feel so awful!  

All day Friday, the drizzling continued.  That evening, my husband gave me an extension tube set for our camera to allow me to take macro pictures.  The next morning, I went outside to try it out.  What would have appeared to be wet dreariness everywhere only the day before transformed right before my eyes into beautiful, delicate little beads of rain on EVERYTHING.  I could hardly contain my excitement as I took pictures of every little drop I could find.  It felt like a whole new world had opened up to me, and I wanted to spend hours capturing it.

The ability to see the world in a new way changed how I felt about the rain.  What used to be dark and gloomy turned into something beautiful and something I could appreciate.  It filled me with joy in a way that I never thought would be possible, but now it is.

Likewise, my personal perspective on bipolar disorder often includes words like "sorrow," "discouragement," "difficult," and even occasionally "unfair."  I try to find joy through it, but sometimes it feels so hard to find the good in this.  It hurts and has changed me in ways that I don't want to change.  I'm different now, and sometimes I just want to go back to how everything used to be.

But recently, some good friends and good experiences have opened my eyes to see this disorder from a different perspective.  What I often see as not being a good enough mom because of this struggle has been explained by several people as an opportunity for my daughter to learn compassion and to realize that hard things happen to everyone and that we keep going without giving up.  What I see as me not being able to keep up with any of the big or little things I used to do has become an opportunity for my husband to appreciate every little thing I am able do now and for me to appreciate his efforts to help me and my good days.  What I see as one hard thing after another in the last year, God sees as a heart that has been softened and that has been opened to the heartaches of others.  What I sometimes see as misery, God is helping me to see as miracles all around me every day!

Whenever I find myself falling into the hole of self-pity, I know that I simply have to change my perspective, which is not easily done but very worth my time.  I have to try to look through different eyes and see things the way they really are, not the way my broken heart and broken brain like to see them.  For me, striving to find joy is my surest way of changing the way things look.  It gives me the ability to see my trials as stepping stones instead of stumbling blocks.  Sometimes I have to look really hard to find joy in what I am experiencing, but it's always there and always possible to find it!


Next to Normal

Last night, we went to a musical at our local high school called "Next to Normal."  Basically, it's the story of a woman who has bipolar and how she deals with her illness and how it affects her family.  I was very hesitant going to this musical.  I doubted that bipolar could be accurately portrayed on stage, and I was somewhat worried about how I would react to seeing a musical that relates so closely to what I experience.  I wanted to go and see how such a musical would be done, but I was sure that it would have some negative consequences for me.  I didn't think there was any way it couldn't.

But I was blown away!  The acting was incredible, especially for high school students.  The plot was so well-written, and the writers were able to find a way to address some very deep and emotional subjects in a way that was not offensive or inappropriately light.  It was seriously spot-on!  In fact, my husband and I often exchanged glances during the musical when the woman with bipolar would say some of the exact things I have said about how it feels.  It was amazingly well done in every way, and I am so glad I went to see it.

I hurriedly wrote down the things that I remembered after it got done, so I want to share some of the specifics about this musical that touched my heart.  Spoiler alert!!  I share many details of the plot, so you might not want to read this if you're planning on seeing the musical.
  • Diana, the woman with bipolar, said that relaying her story to a counselor felt like telling someone else's story.  I have said that exact same thing to my husband before.  This doesn't feel like something that actually happens to people.  At least not me, right?  It seems so far from who I really am that surely it must be someone else's story, not mine.
  • At one point, Diana was going to see a psychiatrist for several weeks as he kept changing medications, dosages, and combinations.  She felt frustrated that it wasn't ever a for sure thing that the medication would help, so she felt like an experiment.  Another spot-on moment!  
  • Diana kept telling the psychiatrist about the side effects and how she was feeling.  After several weeks, she said that she no longer felt anything, at which point, he labeled her as stable.  It seems like that is the goal with mental illness often times-- get the person only to the point of feeling no ups or downs anymore, not to actually feeling good.  
  • But as happened in the play and often happens in real life, Diana missed feeling happy and wanted to go back to feeling the ups and downs as opposed to feeling nothing just so she could feel good some of the time.  She got rid of her medications without talking to her husband or doctor.  Unfortunately, I have been there.
  • At another point, her husband says that he understands, and Diana sings a whole song about how he doesn't know.  While I have had conversations similar to this with my husband about how it's impossible to really understand what it's like without experiencing it, I've also felt this same feeling repeatedly when others say that they understand how I'm feeling.  I know this is meant to be a comfort, but often, it does the opposite.  It makes me feel more alone.
  • Diana said that she didn't want to be a shadow anymore, but she wanted to actually live.  Yes, yes, YES!
  • One of the hardest parts about watching the musical was watching how the mother's mental illness affected her teenage daughter.  A couple of times, it made me tear up, and I had to remind myself repeatedly that everything is going to be okay.
  • Diana's son died when he was young, and in the musical, he was her pull to commit suicide, not actually him, but what her brain told her as if it were him.  I thought the pull of suicide was so perfectly represented.
  • Diana gives in to this pull and attempts suicide.  She is then admitted to the hospital for recovery.  The hospital part brought back so many memories of being in the hospital last December and was a very emotional part for me.  In fact, I started to cry just before the intermission started and all the lights went on.  It was great  :)
  • The first part of the play was really hard to watch.  Honestly, it felt like it was rubbing on these super painful, open wounds, and I wanted to unsee and unfeel everything from that first half.  I thought I was going to go home and cry the rest of the night because of everything I felt while watching, but thankfully, it got much better.
  • During the intermission, my husband and I talked about how impressed we were with the acting and the musical in general.  We wondered if other people in the audience were confused about what was going on, because so much of it had become familiar to us over the last year.  We both talked about what we thought would happen next and how it would end.  
  • Diana tries ECT (electro-convulsive therapy) to heal and ends up losing a lot of her memory for a time.  Her and her husband talk about whether the symptoms or the cure are worse.  This is exactly how it feels.  Every treatment option has side effects and sometimes the side effects are worse than the original symptoms, and it's so frustrating!
  • The musical portrayed a lot of marital conflict surrounding Diana's illness.  While we have had our fair share of heartaches surrounding my disorder, we have reached a really good place.  I am so thankful for my husband and for the support and love he gives me as we fight through this together.  He is an incredible gift in my life!
  • One thing that really made my heart sink was when the psychiatrist told Diana that this is a chronic illness, and she would have relapses.  That has been one of the hardest things about this diagnosis is that it won't just go away on its own, even if we find a medication that helps for a time.  But I felt comfort in the doctor and Diana's family saying that they were here for the long run and would continue to help her through her whole life.
  • In the end, I was totally bawling as the mom and daughter had a conversation about how their life was "next to normal" and that was alright.  
  • The last song kept me bawling as there was no happy ending, but they basically sang that the light would come again and good days would be ahead.  I really appreciated there not being a happy, fix-everything ending.  That might sound odd, but in reality, that's not how it is.  It doesn't just go away or improve suddenly, and I feel like that would have given a false hope for handling mental illness.  Instead, I LOVED the message found in these lyrics:
Day after day,
Wishing all our cares away.
Trying to fight the things we feel,
But some hurts never heal.
Some ghosts are never gone,
But we go on,
We still go on.
And you find some way to survive
And you find out you don't have to be happy at all,
To be happy you're alive.

Day after day,
Give me clouds and rain and gray.
Give me pain if that's what's real.
It's the price we pay to feel.
The price of love is loss,
But still we pay.
We love anyway.

And when the night has finally gone.
And when we see the new day dawn.
We'll wonder how we wandered for so long, so blind.
The wasted world we thought we knew,
The light will make it look brand new.

Day after day,
We'll find the will to find our way.
Knowing that the darkest skies will someday see the sun.
When our long night is done, 
There will be light.
Sons and daughters, husbands, wives.
Can fight that fight.
There will be light.

While I'm not sure that I can recommend going to see the Broadway version of this musical as it was made more appropriate for a high school stage and was on the border of inappropriate in some parts, I think this musical has a wonderful message and brings understanding and hope to all.


This Time Last Year...

Right now, I feel like I am constantly thinking about this time last year-- last year when all of this started, last year's Halloween, last year's birthday, last year's holiday season, etc.  Tomorrow is my 25th birthday.  25 just happens to be the median age for the onset of bipolar.  I guess I got lucky and got to experience it for an extra year  :)

Last year for my birthday, we went to a middle school musical to celebrate.  I remember sitting in my seat feeling manic and wondering what was overcoming my body for the third time in 2 weeks.  It was all so new and confusing and painful.  I wanted to just sit back and enjoy the play, but my mind was racing, my heart was squeezed tight, and my legs were shaking.  I didn't have a name for what was going on, so I sat there trying to hold it all together.  I do remember enjoying the musical, especially when the boy I taught piano was in the scene, but I also remember feeling somewhat disconnected.  I didn't feel like I was totally there.  I wasn't enjoying it as much as I usually would have.  The day after my birthday, I felt so sad.  Why wasn't I able to fully enjoy my special day?  Why did it feel like I was pretending to be happy, not really feeling happy?  

This year for my birthday, we're going to another musical, this time at the high school.  It's called "Next to Normal."  It's about a mom with bipolar disorder and how she is trying to cope and manage her mental illness.  Sound familiar?  :)  At first, I didn't want to go see it.  I mean, why would I need to see a musical about this when it's the story of my life?  Then, I worried about what would be portrayed and how I would feel watching it.  And now, I'm a mix of a lot of emotions, but mostly excitement.  I want to support this effort to speak out about mental illness, and I am so curious to see how bipolar will be portrayed on stage.

Although hitting the one year mark since this started has been way harder than I thought it would be (actually I didn't think it would bother me at all so the fact that it has been hard surprises me), things are looking up now.  Sometimes I just have to take the waves of grief as they come.  It might sound weird to say grief, since I haven't actually lost anyone, but in many ways, I feel like I lost a big piece of myself to this last year, and I'm still grieving the loss of feeling like me.  It's hard not being able to control how I feel, and it's hard that I can't make myself feel good for my birthday or Christmas, but I'm doing better with accepting that things are still good and I'm still very blessed, even though I struggle sometimes.

Just like this picture my husband made for our conference frames says, I will always be able to control how I react to the difficulties that come in my life.  And I am determined to be like Brooklyn, get up and keep chasing those ducks, even after I fall down  :)


Choosing Joy in the Beginning Winter Depression

As the weather gets colder, I find myself sinking farther and farther into depression every day.  I already know it's going to be a long winter!  Every day, I wish that I could spend all my time in bed, hibernating until spring comes again.  After I get up, I can hardly make it an hour or two before I crawl back into bed and either cry or stare blankly at the ceiling wondering why this weight is so real.  Eventually, I find the courage and strength to get up for the second, third, fourth, etc. times, but it takes everything out of me, and I immediately want to lay down again.

At the same time, every day I feel like I am ruining my child's life.  I take care of her most basic needs, but that's all I can do.  My days of trying to do fun or creative things are gone (for now).  I often wonder what kind of memories she will have of her childhood and wish that I could erase any memories of me struggling.  And yet, the older she gets, the more I know that she will soon begin to remember some of this, even when she's grown.  That hurts me more than I can describe, and I really struggle adding the "but if not..." to my prayers when asking God to take this away.  I just want it gone.

But as I pray and the painful tears stream down my face, I remember JOY.  There must be joy in this.  Where is the joy?  And then my mind is opened.  There's joy in my daughter getting older and inviting me to do the tea parties, puzzles, or movies and snuggles with her.  There's joy in people inviting us to do fun holiday things, so I don't feel quite so guilty about being a less-than-super mom.  There's joy in using my hands to create things that bring other people joy.  There's joy in using my strength to serve whenever and wherever I feel I can right now.  There's joy in finishing a workout at the gym and recognizing that I have the power in me to beat this.  There's joy in the little tiny tender mercies that I would normally miss noticing but now they seem so obvious to me.  There's joy in hearing my husband say that he's sorry that this is so hard, that he loves me, that he's thankful for my effort, and that the ways I've changed in the last year are overall for the better.  There's joy in having people ask me how I'm really doing and knowing that they care to hear my truthful answer.  There's joy in seeing how blessed I am and how my testimony is still growing stronger.  And the list could go on forever probably.

I hurt so much right now, but something inside of me tells me that there will be an abundance of joy to be found, even in the bitterness of the long winter months.  Finding joy is my choice, so I will choose JOY!

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One Year Later...

I've struggled finding the words for this post.  Last week was good, so I didn't know what to write, and now I'm feeling all the feels, and I still don't know what to write.  Haha.  I guess I'll just start somewhere and see how it ends up.

It's been one whole year, and yet here I am, and it seems like not much has changed.  In some ways, I feel so strong looking back and seeing all the terribly difficult things that I've experienced in the last year, but in a lot of ways, I feel weak and somewhat overwhelmed moving forward.  One whole year later, and I feel like I'm in almost the same place as I was when this started.  Still struggling on and off so much.  Still no baby #2.  Still not sure what can help my broken brain or when we'll find that miracle medicine.  Still not sure how to handle the most difficult days when they come.  Still not able to do even a portion of what I used to do.  Still spending hours in bed every week.  Still struggling to accept that things are just different now.  Still praying every day that my husband and daughter will somehow understand the deep hurt in my heart and know that I'm trying.

But as the tears well up in my eyes and my heart begins to sink in heaviness, I have to remember that I have made steps of improvement and progress.  I'm exercising regularly now.  I've learned how to simplify my life, ask for/accept help, and use my experiences to try to help others.  I've given my all to finding joy in the most difficult circumstances.  And most importantly, I've survived, even when that seemed absolutely impossible.

Through all the difficulties in the last year, I have seen countless miracles.  I've had prayers answered in the exact way I prayed.  My heart has been lifted by the wonderful family and friends I've been given.  I have been the recipient of heartfelt, thoughtful service that has reminded me time and time again that God is aware of me and loves me.  I have been able to come in contact with some of the most amazing people who have inspired me and renewed my desire to find joy in all things.  My experiences have been able to soften hearts and help others understand those who struggle with mental illness.  My testimony of the enabling power of the atonement of Jesus Christ has grown as He has strengthened me and enabled me to do more than I could on my own.  And perhaps the greatest miracle of all is that, because of the Savior, I'm okay and I'm still trying, and I'll keep trying as long as this lasts.

Last week, I had a few days of small struggle (small compared to the weeks before).  As I was laying in bed one day trying to find the motivation to get up, a thought came to my mind that has helped me to increase in faith and hope: "God's plan hasn't changed.  This is His plan."  It seems so simple, but this plain truth reminded me that it is my plan that has changed, not God's.  He knew this would happen, so He placed people and opportunities in my path as part of His perfect plan.  He knows that I can't do everything I used to do, and that's okay.  I'm living His plan.  He's the one that can help my sweet family understand and accept the changes that have come in the last year.  He's the one who knows what I need and knows how to help me.  He's the one who will give me the strength and courage to fight over and over and over again.  And ultimately, His plan will help make me into the best version of myself possible.

If you're reading this, THANK YOU for all of the support and love you've shown in this last year.  I never knew there would be any interest in the things I write, but this blog has grown so much, especially in the last few months, and I'm so thankful.  Any little bit that I can do to use my experience to bless another person means that these months of struggle are not a waste and have a purpose.  So thank you!  I've learned so much from each person who has reached out to me during this time, and I feel like I've learned from each of you what it means to truly serve someone in the way they need.

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I'm Back!

Yes, you read that right.  I'm back.  My nightmare of this last week and a half is over (at least it feels like that right now and I'm hoping it stays).  I can hardly believe it was so terrible, but it's done now, and I'm so ready to move on.  Several people have asked what happened to make everything so difficult, so I thought I'd write a little bit about that and the caution I learned I need to take.  So this is kind of redundant with things I've already written, but this is the shortened story of what happened. 

First, the counselor I was seeing thought I had a hormone imbalance that was causing my mood cycling, and if so, that would have been a very easy problem to fix.  After several weeks of her very strongly believing this was the case, she realized that it wasn't.  That was hard, because as much as I had tried not to get too excited or hopeful, I had.  I wanted all of this to be done and realizing it might be a lifelong battle after all was very hard to swallow.  But I kept moving forward.  Things had been getting better the weeks before that, especially since I had started exercising regularly, so I knew I'd just have to keep fighting and eventually conquer this beast.  At the same time, I was going to see our infertility specialist, and we were moving forward with our plan to get pregnant.  He wanted me to take clomid to increase my fertility and to help with an anatomic anomaly I have, so I did, even though I ovulate regularly on my own.  When I went to pick it up at the pharmacist, he told me a few of the common side effects-- headache, cramps, and mood swings.  I didn't think much of it at the time.  So what are a few extra mood swings?  I mean, it couldn't be any worse than normal, right?

I took the medication for 5 days as directed and then stopped taking it to prepare for the next step in our plan.  And that's when everything fell apart.  Just a couple of days after taking it, I started to feel AWFUL!  Like the most awful I've ever felt in my life.  It wasn't just the normal darkness I experience on a regular basis.  It was a very intense heaviness that weighed on my whole body and made it feel almost impossible to function at all.  I would get out of bed for a minute to do something and then go straight back to bed.  I didn't eat more than a few crackers or carrots for several days.  I cried for hours every day and didn't know how to cope with something so difficult, especially since I didn't know what was going on.  But perhaps the most difficult part of this time was the incessant, unremitting thought that I should die.  And it wasn't like the nagging thought that sometimes accompanies my depression that I've learned how to handle.  It was so strong, so pressing, and so serious. 

After a whole week of this kind of darkness, I finally told two friends and my husband about how I was feeling.  As I was talking to them, I remembered what the pharmacist had said.  Mood swings.  This was to be expected.  First, I felt a little hopeful that this had a cause and therefore would have an end.  Then, I felt a little bit angry that I had taken a medication that caused more pain than I ever knew was possible to experience, and it could have been avoided.  And finally, I felt like I needed help.  I had barely made it through a week of this, and it was getting worse, so there was no way that I could continue doing this on my own. 

I talked to my good friend and church leader about how I was feeling, and she kindly and forcefully told me what I needed to do to make sure that I would be okay until this got better.  She helped me set up people to be with for the whole week and warmly wrapped me in her arms to let me know that I was loved and would get through this! 

The next few days, I went to people's houses all day long until Kyle got home.  I was exhausted.  I was fighting for my life, and I was away from the comfort of my bed to lay down and rest all day.  I knew it was what I needed, but it was hard.  I appreciated the people willing to help and felt completely surrounded by love and kindness and support. 

The constant pain I felt seemed like too much to bear.  It physically hurt in my chest, and I would sometimes have to close my eyes just to remember to keep breathing and hold on.  I kept reminding myself that it would pass, even though it felt like one more minute of this kind of pain was impossible to handle. 

Yesterday, after laying in my bed crying for hours on end and feeling the greatest intensity I had felt yet, the darkness suddenly lifted.  I took a deep breath and felt relief.  It was gone-- all the heaviness, all the pain, all the struggle.  I wanted to get up, I wanted to live, and I wanted to try to be okay again.  I had made it through what would hopefully be the hardest battle I'll ever have to fight.  I did it, of course with the help of some amazing people who I have been so blessed to know. 

I still can't believe taking a medication could cause so much heartache and pain, but I have learned the hard way that I need to check the possible side effects on any medication every time and stick up for myself when it seems that something might not be a good match for what I am already facing.  It's my job to be proactive and to make sure that I am doing my part to keep myself safe and healthy. 


That We Might Help: Rhonda's Insights

To read Rhonda's story about finding joy through breast cancer, go HERE.

I’m so honored to be asked to contribute to the “That We Might Help” project. I believe that the majority of people who hear of a friend or loved one diagnosed with an illness such as cancer want to help. They may not know how or what things are helpful or unhelpful so I was asked to shed some light on that to make others more aware.

I have an aggressive form of breast cancer and have been through six months of vigorous chemotherapies and several surgeries with more surgeries to come in the next few months now that I’ve completed chemo. I hope that my words will be taken as gentle advice on how to possibly help or support someone going through a cancer diagnosis/treatment, rather than a chastisement if you have done or said things differently than what I might suggest. Any support is good support and we’ve all said things before that later we realize might not have been the best. Certainly, I’ve been told things that may have been insensitive but I do not hold it against a person when I feel their love and care. It’s always a good thing to hear a different perspective though, so we can learn and perhaps be more prepared to be the very best support possible.

The initial diagnosis period happens to be one of the worst nightmares into which a person could be thrown. There is so much testing and waiting, more testing, more waiting. The whole time period from learning I had cancer to the time when I had surgery and a pathological confirmation of my stage and treatment plan was about five weeks. That is a lot of sleepless nights, a lot of time spent trying to comfort my children when I didn’t really know what the future might hold, and many days and hours spent at appointments. It was a full-time job and then some. Had I not had an enormous amount of support I just don’t know how I would’ve managed the mental aspect of it. I had cards, flowers, thoughtful little gifts people brought by with a hug or sent in the mail, and many messages of support. Those things are what helped me get through that dark and scary time feeling supported and loved rather than just focusing on my fears. I can’t stress enough how those things made me feel blessed and buoyed up while I waited and waited some more.

Once the surgeries and treatments start is when the person diagnosed has to gear up for the fight. The fear is just out of this world and I can’t possibly convey it with words. The following are some tips that might be useful if you are wondering what specifically you can do to help:
  • Continue to send messages of support and love.
  • If the person diagnosed expresses fears of death, please do not discount it. Don’t tell them that they will be fine. You don’t know. Nobody knows. Cancer doesn’t care if you’re the strongest fighter or are the most positive person in the world. It can take the best, most determined person and completely ravage them. Instead of trying to downplay the seriousness of what they are facing, offer a hug, listen to them, ask what you can do to help alleviate some stress. I think it is human nature to want to comfort, but we need to be careful that we are honest in our comfort and that we don’t casually dismiss very real possibilities.
  • Most of us that have chemotherapy in our treatment plan will lose our hair. It’s quite easy for people who have their hair, and have no threat of losing it, to say, “It’s only hair. It will grow back.” While that is true for the majority of people (some chemo can and does cause permanent hair loss) it is not comforting. It can feel like it is being downplayed, and I promise you it’s not *just* a hair thing. It’s about so much more than hair. Our physical identity is stripped away bit by bit. First our hair, then our eyelashes, and eyebrows. It’s as if everything that distinguishes us slowly fades away. We turn into an unrecognizable image. Literally, sometimes people don’t recognize us, and we don’t recognize our own reflection in the mirror. We lose our privacy. We walk into a room, and our medical condition is announced long before anyone even knows our name. We get stares, we get averted eyes, and we get unsolicited comments. Instead of acting as if losing our hair doesn’t matter, offer to go wig shopping with them if they are interested in that. Ask if you can buy them a few head scarves. Omit those belittling words and create a positive action instead of devaluing something that is a very big deal. My sweet cousins sent me a gift certificate to a wig shop so I could pick something out that I wanted. It was a beautiful and thoughtful gift and having a wig gave me a feeling of security. I had the option of “blending in” when going in public if I chose to wear it. A sweet friend had me pick out several scarves/hats online, and she paid the bill. Another dear friend came over to cut my long hair very short just before it was to fall out. It was a kind and precious thing to do so I wouldn’t have to have to go through that difficult thing in a public salon. It also gave me a few days of adjustment time before it completely fell out. It turned such a sad experience into something lighthearted and fun. I felt incredibly blessed my friend would think to offer that for me. My new short hairdo was so cute and that transition so helpful that I didn’t even cry about the hair loss until many weeks later when my eyelashes were gone too. At that point, I no longer looked like me. I looked like a dying cancer patient. That was the worst week of my whole cancer journey and that includes the double mastectomy, being very sick, weak, and being in great pain. Please understand it’s not “just hair”.
  • Try not to place any extra or unneeded responsibilities on the cancer patient. Even something as simple as telling them to be positive can feel like a weight on them, an extra “job” so to speak. Instead, if they are feeling downtrodden ask what *you* can do to help them feel more positive or happy. Ask if going out to lunch will lift their spirits, or if having a night out could help but try not to give them added pressure. Their minds are already weighed down, their shoulders already carrying a heavy burden. Lighten it as best you can; try not to add to it.
  • Prayers offered are so welcomed and appreciated. If it’s in your power to do so, definitely offer them… and then get off your knees and take them a meal, do their dishes, offer rides for them to their appointments, and then continue to offer as time goes on. Ask the Almighty to buoy them up and then, as His servant, do something physical to help alleviate their daily stress. The fatigue and exhaustion from chemotherapy is one I have never known. You might think a meal is nothing, but I assure you that it’s huge. It’s needed. If you don’t cook, drop by gift card to a local food place, a frozen lasagna, a fruit or veggie tray, anything that doesn’t require a ton of preparation that the family can eat when they’ve had a long day. Don’t assume their church or friends or family are bringing food. Take action yourself. Yours might be the only help offered. One of our friends has brought us a batch of homemade refried beans every single week for months. Some weeks it was the only hot thing my kids had eaten for days. The appreciation for something like this is immense.
  • Instead of telling them “let me know if you need anything”, ask specifics. Unless the person is already known to call on you when they are in need, they probably won’t call on you now. It’s so very hard to ask for help. Chemo does a number on a person, and there have been times people have asked if they can do anything and my mind goes blank. Then I’ve gotten off the phone and realized we had no groceries, I hadn’t picked up my medications from the pharmacy, and the kids were eating cereal for dinner. Again. It’s not your fault; their brain is on overtime and not functioning well on the spot (it’s referred to as “chemo brain”), but it does help to specifically ask, “Can I go to the store for you?”, “Can I bring some dinner tonight?”, “Do the kids need a ride?”
  • Specific to breast cancer…if you know someone is getting a mastectomy, I beg of you to not say how lucky they are to be getting a “free boob job”. It is not free by any means, and it is not anything close to an elective breast augmentation surgery, not in recovery and not in results. It’s not even in the same ball park. Reconstruction is the most painful thing I’ve ever experienced, and it is ongoing for months and even years for some women. YEARS. It’s like equating a hangnail with a gunshot wound. Please don’t do it. A simple, “I’m so sorry you have to go through this.” is enough and is most appreciated.
  • Silver linings are in every experience we can imagine and how grateful I am that even during these past several months of hardship I’ve experienced many them. Although, I do feel like it’s a great idea to let the person with the illness find their own bright spots. Pointing out how they are going to save money on shampoo if they are bald is no silver lining. It’s no comfort. We would much prefer shelling out the few bucks on shampoo and keep our beautiful hair. There is no silver lining in the pain, physical or emotional, that we as cancer patients go through. The silver linings are meeting people who help us along our journey, having friends and family show they care, and being treated at a top-notch medical facility amongst others.
Again, I hope these tips can be helpful should you ever have a friend or loved one diagnosed with cancer. I wish that I had read something like this before, so I could have been a better support to my friends and family, but you just don’t know what you haven’t experienced. Last but not least, just don’t ghost on them. Be there in the ways you are able and provide emotional support however you can or feel is best. I know your efforts, great or small, will be accepted in the spirit intended.