Life is messy

I watched the most wonderful drama on TV last night.  It was the true story of Lisa Lynch, who was diagnosed with breast cancer at the age of 28.  She simply couldn’t relate to the “cancer is a gift” bollocks, or the “you have cancer to learn a valuable life lesson” bollocks, so starting blogging about the reality of cancer which eventually turned into a book called ‘The C Word’.

I could totally relate to Lisa writing to help her cope.  It’s why I started this blog in the first place.  I just couldn’t do the forum thing, with the perky-and-positive brigade or the I-have-one-hive-and-think-I’m-dying brigade.  And I couldn’t read other blogs, where the author starting eating a wheelbarrow load of kale, raw cacao and medjool dates and was suddenly cured.  I needed a place where I could just tell my story like it is, warts and all.  Where I could rant, and swear, and be angry and be depressed……..because when you’re chronically ill you’re all of those things.  You just can’t tell your nearest and dearest you’re all of those things, because they need you to be upbeat.  To “fight”.  To get better.  They don’t need honesty – it’s just too………..well, honest.

I didn’t know Lisa’s story beforehand and as I watched her go through treatment, start to recover and become cancer free I thought to myself “here we go, yet another I-beat-fucking-cancer-story” and it really pissed me off.  Life isn’t that neat.  We don’t all “beat” our diseases and I’m fed up of feeling like I’ve failed because mine has gotten worse again lately, not better.  However, as it turns out Lisa’s story wasn’t quite so neat either and she died in 2013.  Not that I would wish that on anyone, obviously, but it makes a change to see something on TV which doesn’t have a Disney happy ending.  Because, on the whole, life doesn’t.

I’ve also read a book lately which I wanted to share.  It’s the true story of Anna Lyndsey who, in her mid twenties, suddenly becomes allergic to light.  All light.  And ends up living in a completely blacked out room.  There again, after several months Anna starts to be able to tolerate light again and I was braced for the “I beat my allergy” ending but, without spoiling it for anyone who wants to read, it didn’t quite work like that.  Having been bedridden for nearly 10 years, much of the time spent in the dark and quiet due to severe noise and light sensitivity, and now living with frightening anaphylactic reactions I could relate to Anna’s story in many ways.  The hope, the despair, the boredom, the isolation, the thoughts of ending it all and the trying to make my life still mean something.  ‘Girl in the Dark’ is available both in hardcover and Kindle download from Amazon.

These stories differ from mine in a major way though, in that both these women had hugely loving, loyal and supportive partners and families.  One particular scene in Lisa’s story found her lying in the bath, too weak to get out, and she shouts for her husband who comes charging in and rescues her.  Having been in that exact same position, I just had to lie there getting hypothermia until I finally had the strength to haul myself out of the tub where I promptly passed out on the carpet.  Having come to, and still alone, I crawled back to bed and lay there, hungry, naked and freezing, until the next morning when I had to summon up the energy to get up again, put some pjs on and make my way down to the kitchen for some toast and a hot drink.

While it’s wonderful to hear stories of people who triumph over illness, and it gives us all hope that we too will see recovery, it’s equally reassuring to hear about people whose stories are more realistic.  Who are either beaten by their disease, or who simply have to learn to live with it.  It makes me feel less like I’ve flunked as a sick person or that I’m doing something wrong. Watching Lisa go from a confident, witty, outgoing, optimistic young woman who was going to kick cancer’s ass, to a depressed, exhausted, anxious, weepy wreck was reassuring, because it’s how the story goes for a lot of chronically ill people.  It’s easy to cope with illness in the early days/months/years but as time goes on and you realize you’re back to square one and the entire battle has to be fought again, and again, and again, or when you finally get a grip on one symptom only to find another one smacks you in the gob, it gets much harder to keep your pecker up.  Life isn’t neat.  It’s unfair and messy and unpredictable and we just get through the best we can.

5 thoughts on “Life is messy

  1. Robin

    I so appreciate you posting this. I’ve had difficult times in my life – death of a child, challenges with family, and now I have mastocystosis. I can’t really complain much about the latter because it’s only cutaneous so life seems fairly normal. This all said, I’m like you in that I don’t like to see serious situations (like yours) minimized nor do I like to buy into unnecessary hype. Somewhere between the neighbor thinking she could pray over my incurable disorder and the other bloggers who act like all of us should live in a doctor’s office, I’m trying to find my happy medium. In my case, the struggles with stress brought on by family will likely be a greater threat to my physical and emotional well-being than a mast cell disorder.

    Life is messy and we’re not all “gifted” with healing, lessons learned or the happily-ever-after. Certainly this has not been my experience thus far (56 yrs). I get up each day, try to find reasons to be positive, and, as you’ve said, “get through the best I can”. This is why I appreciate your blog. It’s one of the few places I can visit to find the same honest and direct approach I use. And few would dare utter the words, “It’ll all be fine!” Truth is, it won’t so I’ve no choice but to live with all the hurt, frustration and disappointment that continues to come my way.

    Thanks for helping each of us face our reality.


  2. My Brain on Tyramine

    Yes. Thank you. I’m tired of people saying try this. Take that. Eat this. I am chronic. Get a dictionary. I would love to say it. But I don’t. I want to be better. Great post.

    Liked by 1 person

  3. Teri Scherzinger

    Wow! Did you ever hit the nail on the head with this one. I do have so much empathy for your situation, especially due to my own experience. One of my biggest fears is that my husband will “kick the bucket” before me and I will be on my own, with no energy to even shop for food.

    I am a breast cancer “survivor”, literally. Much of the time I feel like that is all I’m doing. While going through treatment, it was always at the forefront of my mind, “how do women without a partner get through this?”

    I can also relate to the fighting positive attitude at the beginning. The chemo was hell, I suspect because of my mast cell deal, which was unknown at the time. But, I was going to endure treatment and go back to normal life, nice and tidy.

    What happened was 5 years of an estrogen suppressing drug, that surely made the mast cells worse. I felt fatigue in a different way than ME. Hard to explain, just that the life was sucked out of you in a different way. The only coping mechanism was exercise, which “got the juices flowing”. So I was excercising a lot, just so I would feel kind of normal. Anyway, started having “mini crashes”, not knowing at the time what it was. Also sleep problems. Basically sleep pattern completely upside down. (Still struggling with this)

    Fast forward 5 years and we all think I’m going off the evil drug and going to be good as new. I felt good for about 2 weeks, then a downward spiral that eventually led to ME diagnosis 3 months later.

    During this time people would say “stay positive”, “I think you’re depressed”, the vibe I got was, “you’ve been sick long enough”, “you just need to buck up”. I knew the whole time there was a biology issue involved in all this. I became a relentless researcher, which led to a mcas diagnosis, after asking for a tryptase test.

    I am thankful for the cancer treatment because the tumor was very aggressive and I’m a 9 yr. survivor. Just a high price to pay. Sorry if I’ve rambled on. My brain is pretty clear today and I’m a little riled up because of your brilliant post‼️ ❤ Teri<3

    Liked by 1 person

    1. Jak Post author

      Gosh Teri you’ve had a lot to deal with. It’s fabulous to hear your cancer is in remission, though to now have to deal with both ME and MCAS is so unfair. Hugs, Jak x



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