The one where I wonder if there are miracles…

The other weekend I had a Sunday off. I thought about going to church, and then I realised it was Mother’s Day. I’ve spoken before about why I don’t celebrate it, and it broke my heart to see people on social media dealing with the pressure of declaring their Mum ‘the best in the world’ when they’ve been treated poorly by their mother. I also saw again friends who are in churches giving out things to all the Mums, and making a big deal about this fake hallmark holiday. Before you think I’m a totally horrible person, I did take my Mum to see Beauty and the Beast the night before. I decided instead to go out into the sunshine with my camera. I ended up wandering down the Water of Leith to the National Gallery of Modern Art. And was struck by this sculpture (for want of a better term?) and the fact that you can see churches behind it in the background.IMG_1698

The church you can see on the right, is (I think) the cathedral where every Autumn they hold a service for people who have faced pregnancy, stillbirth and infant loss. It really sucks to be part of that community on Mother’s Day in a church. I’ve spoken before about the insensitive comments I faced when I first started going to the hospital for tests and scans from my fellow Christians. I was told that the only reason I was so ill was due to my lack of faith. I was also told that despite doctors telling me I would struggle to have my own children, God would give them if I prayed enough.

Eh, what?

If only it were that simple. I had a friend who went to every prayer ministry you can imagine and they still died of cancer. I have a friend who had her sixth miscarriage this last year. I have friends that got told they wouldn’t be able to have children and later in life had a ‘surprise’ pregnancy. I know a girl who died of cancer. I know a girl who got given 6 months to live with her cancer and is still here 3 years later. 12 years ago my Dad almost died and surgeons thought they’d have to remove a huge section of his bowel – only for a few days later to find it all better with no knowledge of how that happened. 12 years ago my grandmother woke up suddenly paralysed, and died 3 weeks later and doctors had no idea how or why until they had done endless tests and an autopsy to discover she had a rare form of lymphoma.

There is no rhyme or reason to why one person lives and another dies. There is no rhyme or reason to why one pregnancy ends in with a healthy baby, one ends with a sick baby and another ends in miscarriage.

Do miracles happen? I think sometimes they do. I don’t know that we have any control over when, where or why.

Yes, it makes me sad to think I’ll likely never be part of the parenting club. I never dreamed about getting married, but I did dream about being pregnant and giving birth to babies. But I also remember the day the doctor talked to me about it, and being astounded by the peace I felt. And now that I’ve spent more time with friends who are parents I think maybe God knows exactly what He’s doing…quite frankly kids seem to throw up waaaay more than they did in the 80s and 90s and I quite like my independence. I also like sleep and to eat my tea while it’s still hot.

So let’s stop putting the pressure and the judgement on people who haven’t got the miracle they hoped for. Let’s be real and recognise when life sucks, and when we’ve had the chance to rage and cry about it…find out the good that can be brought out of that crappy situation.

And if we do get a miracle…let’s be humble and remember it likely had nothing to do with us. Be grateful, and sensitive to others who didn’t get theirs.

x

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How to walk beside someone with Mental Illness

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It is Mental Health Awareness Week. So I think this is a good quote of the week to choose (because I can’t pick the same one two weeks in a row).

When you are struggling with mental illness, you may not have the energy to lead, and you may not have the capacity to follow. What all of us need is people to just be with us and saying “I’m here, and I acknowledge that what you are going through sucks right now.”

I still follow Zach’s Mom, Laura Sobiech, on facebook and have done ever since I read her book, Fly A Little Higher. I think about the Sobiechs and the Aiffs a lot every May as it marks the anniversaries of the deaths of both Zach and Chris. The same as every Christmas I think of Oliver, and every February now I think of Kylie. Laura works for the Children’s Cancer Research Fund, and together with another Mom who has battled the conniving disease of cancer with their child they published a post today on the CCRF website called “What to say (and what not to say) to a family facing cancer“. It reminded me of a very similar post that Mark Myers wrote on his blog.

I’ve probably said several of the things on that What Not To Say list. And I’m really sorry that I have. Part of it is my overly practical logical side – years studying Health Sciences and spending waaayy too much time in the medical world caused me to learn too much. And makes me go ‘oh thank goodness it’s that type’ or inwardly think ‘there’s little hope here’. I’m trying to be better at filtering my thoughts so they don’t come out my mouth. Because they aren’t helpful.

I have a new hashtag. And it’s this: #cancersucks

However, as a friend is sharing daily tips about what to do/not to do with a friend struggling with mental illness, I realised reading that post, you could probably take that very same advice that Mark, Laura and Mindy have given…and rename the post “What to say (and what not to say) to a person facing mental illness”.

 

So What can you say?

This Sucks.

Don’t try to fix it, or make sense of the situation.

Because #mentalillnesssucks too.

It’s not the same as cancer. But like cancer there is no simple cure. There are many different types. Not every treatment plan works for every person. Sometimes it does result in death. You can think you’ve beaten it, go for years living your life only for it to come back.

I’ve been thinking of you today. 

It meant a lot for someone to send a text (which I could read when I felt able) to let me know they hadn’t forgotten me. Illness is isolating and often lonely.

Don’t ask me to make a decision

One of the things that struck me that both Laura and Mark mention were instead of asking “how can I help?” to offer something specific. I know so many times – when I was ill with CFS and when I’ve struggled on my darkest days with depression. I couldn’t answer that question. I didn’t even know how to help myself, never mind know how others could help me. But when someone text to say “I’m going to the supermarket, do you need anything and I can drop it off?” or “I could come pick you up if you’d like to go to church” (this was a godsend when I had CFS as some days I could barely walk). I could answer that with a yes or no. I could manage that! The same went for making any kind of decisions. I needed them to have a yes or no answer. And I also needed others to understand that if I had made an arrangement sometimes I could wake up and feel too awful.

Understand that I can’t plan how my illness is going to treat me on a day to day basis.

I also appreciated people understanding the nature of the beast I was fighting. One of the frustrations when I had CFS was that my immune system sucked. A simple cold that in the past I would have just carried on with life as usual would have me in bed for weeks. So there were times when my friends would let me know that they (or their kids!) had the sniffles and give me the option not to see them.

They also didn’t bat an eyelid when on good days I managed to get to church and was so exhausted by the effort that I’d have to lie down for most of the service at the back of the room. (Amusingly, I found out in later years that people thought I was ‘full of the Holy Spirit’ and that’s why I was lying on the floor!). I was there, and participating as much as I could and that was all that mattered. No big deal was made. Sometimes I sang on the worship team, but I needed a chair to sit. It meant a lot to still be able to do something I loved doing and only once did one of the pastors comment on the chair telling me it wasn’t very godly of me to sing sitting down.

We love you and we’re here for the long haul.

Know that mental illness doesn’t go away overnight. It can stick around for months and years. Usually (hopefully) there’ll be periods where it is better than others. Endurance is needed.

Meals.

When you don’t have time or energy to shop, and don’t feel like eating. A meal that is pretty much ready to go is so helpful. Healthy things (and a few nice treats) that you can snack on are helpful as sometimes if you have no appetite a big meal is hard. But we probably need to eat as it’s going to help make us better (or at least prevent us getting worse).

Encouragement.

Knowing that our lives still make a difference does help. The reason I’ve kept writing all throughout my life’s journey in good times and bad is because of the encouragement of others telling me that somehow I’ve helped/inspired/encouraged them. It gives us fuel for our continued fight.

 

Of course, everyone is different, and you might not agree with all of the above. And perhaps there are things that I’ve missed out. Please feel free as always, to add helpful tips in the comments.

And to Mark, Laura and Mindy – thank you for sharing your tips on what to say (and not to say) to families battling cancer. Though I wish you’d never had to endure watching your children go through all that they did with cancer and cancer treatments, I am thankful that you were willing to share what you learned so that hopefully I (and others) can be a better friend to those going through similar circumstances.

Quote of the Week 18: Happiness is not a limited resource

This weekend saw the TV premiere of ‘The C Word’ (the film adaptation of Lisa Lynch’s book of the same name about her battle with breast cancer). Yesterday would have been Zach Sobiech‘s 20th birthday. This weekend Carrie Bickmore used her Gold Logie Acceptance Speech to call on Australian TV personalities to wear #BeaniesForBrainCancer, in honour of her late husband who died of the disease when their son was just 3 years old, to raise awareness for the need for more funding. Today I woke up to see this post on my reader showing the launch of the Truth365 PSA on Broadway that Kylie Myers featured in. And it’s also the one year anniversary of Christopher Aiff’s death.

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Lisa Lynch called her cancer diagnosis ‘The Bullshit’, and there sure is a lot of shitty stuff going on in the world. I really don’t care if you’re offended by that language, because I feel like ‘rubbish’ doesn’t cut it when it comes to stuff like this. I have friends that are going through some really crummy, shitty things involving death and dying. And I wish that they didn’t have to go through it.

It’s not that Chris is saying that cancer is fun. It’s that even in all the crummy shittiness there is still joy to be found somewhere. And joy and happiness is not something that only a certain number of people can have for a limited amount of time.

It’s unlimited.

When a mother gives birth to another child, it’s not that she has to halve the love for her first to give the other half to the second. There’s simply more love that comes.

It’s not a limited resource.

Chris actually explains it much better than I ever could. So I will let him share his wisdom.

“The decision to be positive is not one that disregards or belittles the sadness that exists, it is rather a conscious choice to focus on the good, and to cultivate happiness and genuine happiness. Happiness is not a limited resource. And when we devote our energy and time to trivial matters and choose to stress over things that ultimately are insignificant, from that point on we perpetuate our own sadness and we lose sight of the things that really make us happy and rationalise our way out of doing amazing things.”

-Christopher Aiff, 2012, My Last Days

It is for good reason that Chris’ sister and many of his friends got that inked permanently on their skin so they’d always remember his message.

Happiness is not a limited resource. And let us choose to focus our energy on cultivating it.

Although I’d quite like us to find a cure for cancer and a cure for Cystic Fibrosis too (that would make a lot of people very happy).

1 Million Christmas Cards for Anna

A few years ago now, my friend Rebecca ran a series on her blog called ‘Careers Week’ where she asked a whole  bunch of us to write a guest post on our career journeys. I was one of her guests, and another was a college (university to the non-Americans) student called Patrice Basso. I think I’d skipped over to Patrice’s blog before that week, as Rebecca would mention her on her blog or twitter, but I don’t think it was until that week that I subscribed properly to her blog. At that time Patrice’s sister Anna was battling Ewing’s Sarcoma for the second time, and Patrice wrote so honestly and eloquently about it all. Their family friend had set up a website called 1 Million 4 Anna, and I sent up prayers.

Sadly, Anna died a few days after her high school graduation.

Anna’s legacy however continues on through the 1 Million 4 Anna Foundation – which is trying to bring smiles to children going through cancer treatments through Anna’s Closet, providing scholarships to those who want to go on to university education (because of course unlike here, in the USA many of these families will be affected by huge medical bills and university fees are astronomical) and of course, to fund research into finding treatments (and hopefully a cure) for Ewing’s Sarcoma.

Why am I sharing this with you?

Well a few years ago, Rebecca came to myself and our friend Holly (who at the time was living on the other side of the world) and asked us to help her with an idea that she had inspired by one of her patients who had died from cancer. This patient who we nicknamed ‘Robin’ had a Christmas wish which she shared with Rebecca while she was being cared for in hospital. She said to her: “if I had a Christmas wish now it would be really fun, Rebecca, if everyone in the world could just send anyone a Christmas card… it would be fun to send a Christmas card to someone you have never met. We all send our friends and family cards but not to anyone else. It would be fun to spread good will to other people as well too.”

With Robin’s family’s blessing Rebecca started Airmail Christmas, Holly and I promoted it on our blogs, and as I had the week off work I assigned all the participants random numbers and generated Christmas card exchange pairings. Rebecca has continued on the tradition, each year doing it in honour of someone connected with us through our online community. Last year we did it in honour of our friend’s mother who died of cancer that year – ‘Mama MB’.

This year, we will be doing Airmail Christmas in honour of Anna Basso.

So if you’d like to participate you can find the details over on Rebecca’s blog, where Patrice has written a little bit about her sister. The deadline for participation sign up is December 1st, and you need to be willing to pay international postage on a Christmas card (and share an address with Rebecca and one stranger who will send YOU a card)! 🙂