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GUEST POST: Talking About Bulbs

June 8, 2012 By

Today we wrap up what’s been a great week of guest posts. So far we have heard from an autism parent, a woman embarking on a weight-loss journey, a mom who suffers from mental illness, and  an Asperger mom who runs. Today’s post comes to us all the way from Spain. Gati Presumida, like my guest writer yesterday, participated in the Health Activist Writers Month challenge. She has Lupus – a condition I knew nothing about until I started reading her blog. She’s not talking about her Lupus today, though. She is talking about her father’s battle with dementia.

Yes, bulbs.

Light bulbs.

You are not crazy. You read that.

I am not crazy. I wrote that.

And, as per mental health, no one is ever crazy.

Because, as crazy as it may sound, talking about bulbs for an hour was the thing that made my yesterday complete.

By the time you finish reading these lines I only hope you can agree with me on this: talking about bulbs can be the greatest thing ever.

My dad suffers a condition called Frontotemporal Dementia. Although God only knows when it started, he was diagnosed 4 years ago, when it was too late for many things.

Dementia has altered our life in such ways that you cannot imagine. However I am not going to tell you another of my “soap operas” today.

I would like you to see what I see. I would love to give you the key of perspective so that you can see how talking about bulbs can make your day.

My dad’s dementia has forced him retire 10 years earlier than what he planned. He is not allowed to have any money nor credit cards or bank accounts and whenever he goes out he gets 1000 questions afterwards so that my mum can be sure he hasn’t done any “crazy” thing like buying a new car or getting a loan on my behalf.

Although my dad can walk he feels under so much  control that he feels house bound.

He gets told off whenever he tries to help and does something. He feels useless and that’s unfair because he may have dementia, but dementia does not have him… yet.

Maybe next year things are different. But nowadays he can do so many good things! And he, nor anyone, should never feel useless.

You see my dad and see a “crazy” person you should not trust. But I see a person that is trying to fight. He knows dementia is meant to have him, but he knows it is up to him to slow the process down.

I know he can do it. That is why I bought him a e-book so that he can train his mind by reading. I ask him for help whenever I need. Not because I pity him, but because I really think he can help me. He is so wise and so capable of doing things and everything. He is worth more than anything to me.

Yesterday I sent him an e-mail asking for help. Do you want to know what he replied? “It comforts me that you think I am capable of doing anything”. It breaks my heart.

He would tell me things like “I am glad you don’t think I am crazy” every time we have a chat.

If I had an idol that would be my dad. Only because I know I would not be able to cope with dementia in the way he does.

Although he sometimes has moments in which he forget things or he does things he should not do without realizing (like buying a car), most of the time he is fully aware of his situation. He knows he is doomed to be defeated by dementia and yet he is fighting. To be honest, had I been in that situation, I would have never tried to fight. And he does. Every single day.

He fights dementia. He fights to show people he can do so many things, and that he can do them right. He really fights to show the world he is still capable of doing things.

People say my dad is crazy. That Dementia is getting worse… Just because somehow he bought a new car. While others see this as an act of dementia I see a gesture of guilt and gratitude. Because he buys that car for my brother as a way to say “thank you for giving up your life, your family, your job and everything to help me out”. I now guilt can be stronger than anything.

I constantly hear “your dad has one of those bad days” just because he forget things. I forget things all the time! Oh, so he is worse today because he doesn’t know which day it is? I rarely know what day is today! What for? My everyday is the same, so why should I bother about what day it is? I am happy being clueless about if it is Monday or Friday because whenever I got something important coming up I set an alarm to not forget. My dad does the same.

My dad’s dementia has got worse because he rumbled about bulbs for like an hour yesterday.

Really? Have you thought about his life?

He has no job, he is not allowed to do anything on his own… He feels house bound like I am.

To tell you the truth, I have one million Ph.D on stupid things. It is what you do when you have nothing to do and the internet is your only window to freedom. So, yes, if that day you need to look for an energy equivalence table in order to get a new bulb, you may take the chance and “surf” a bit deeper into the matter. Well, do you have anything better to do that day?

Oh, so you think you do? Maybe, if it is only one house bound day. But when you are in that cage for 4 years… What now?

Well, there you have it. Bulbs are great thing to get a Ph.D on. It is just a matter of perspective.

Dementia has given my family many reasons to be sad and worried about, but every time we have a family get together you only hear laughter, jokes and that funny teasing that my family knows to do so well. I love that. I treasure each one of those moments.

Maybe during those family get together you see my dad’s upset face at some point. You would probably think it is one of his dementia black-out moments.

I don’t see that. I see guilt and sorrow for having destroyed so many things, for having taken his kid’s lifes away without realizing. I know he wonders how he could not see all that coming…

My dad gets to my mums nerves if he talks about bulbs for an hour. Don’t judge her because we may not know what it is like to be 24/7 with a person like my dad. Like many parents that lose their nerve and smack their kids with apparently no reason, my mum probable loses her nerve. Dementia has altered her whole life, so I guess she deserves the right to lose her patience from time to time.

Light bulbs are not a crazy thing to talk about. I love, I treasure, each one of those “crazy” conversations. Firstly, because I don’t think it’s crazy. I understand my dad and each one of his sudden interests.

I love talking bout bulbs because it is my dad I am having that conversation with.

I will always be up for another bulb chat because I don’t know when that will finish and when dementia will have my dad. Because today he knows who I am, but I don’t know when that will come to an end. So, yes, I am number 1 fan of bulb chats.

You may think that my dad is crazy. I don’t. I see it from another point of view. I only wish people did the same. Not only for my dad, but with many other people that, alike him, have a mental issue.

As you see, Mental Health, from my point of view, is a matter of perspective. So why don’t you give it a go? I am sure you will get surprised by how things can change just with a tiny bit of perspective.

Don’t let yourself get carried away by words like dementia, bipolar or depression. Don’t focus on the wording but on the person you are talking to.

From a different perspective I am sure you will see so many things that were hidden behind those names.

Take this key of perspective I am handling to you today and I am sure you will also tell others how an hour bulb chat made your day.

To learn more about Gati Presumida, check out her website!

(Photo credit: http://www.flickr.com/photos/born2bmild/5158015580/. This picture has a creative commons attribution license.)

Filed Under: Attitude, Dementia, Determination, Father, Fighting, Gati Presumida, Guest Posts, Independence, Lupus Tagged With: , , , , , ,
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A Father, A Daughter, And Cricket

March 22, 2012 By

April 2005

It is a mild Saturday morning and I am home alone with my son. I am enormously tired: I put this down to the fact that I am newly pregnant and my body is devoting all of its energy to the growing of a new human being.

My 18-month old son is curled up on the couch with me, and we are watching TV. He has no interest in the kid’s programs, so I am flicking through the channels in search of something good.

Unexpectedly, I come across coverage of a One Day International cricket match between South Africa and England. This is a surprise because Canada is not big on cricket, despite the fact that many of its immigrants come from cricket-playing nations.

Delighted, I settle in to watch. I start describing the rules of cricket to my son and he listens intently, as if he knows exactly what I am talking about. Or perhaps he just realizes that he’s a captive audience.

The South African fielder throws the ball towards the stumps and the batsman is run out. Instantly, I am taken back to a summers’ day long ago, when my father took me to my first-ever cricket match.

February, 1992

I was 22 years old, and having gone away to university for a few years, I was now back living with my parents. I walked into the living room one day to find Dad yelling at the TV, calling someone a “damned idiot”. I looked at the screen: cricket. A sport that had never managed to grab my interest, mostly because I had never paid any attention to it. I always thought it seemed unnecessarily complicated.

On this particular day, for whatever reason, I didn’t simply tune out. I stared at the screen and asked Dad, “How does this game work, anyway?”

And Dad, thrilled to have a pupil, explained the game to me as it unfolded. By the end of that day, I was hooked. The intricacies and strategizing of the game suited my personality perfectly. The numbers geek in me loved the mathematical formulas and equations that came part-and-parcel with the commentary.

And so, when Dad offered to take me to a match the following weekend – a one-day provincial match – I eagerly accepted.

To say that the day was exciting would be a big understatement. By lunchtime on the day of the match, I completely understood why Dad got so passionate about this sport.

It was a riveting match – one of those where you cannot tell until the very last ball is bowled who will be victorious.

It’s the most basic cricket equation. Six runs to win with one over to go, and one wicket in hand. Simply translated: a run had to be scored off of each of the six remaining balls in the match, and a single mistake would mean defeat for the batting team.

It came right down to the wire. One run needed to win. One ball left to be bowled. One very shaky-looking batsman standing at the wicket. It could go either way.

Dad and I, who had spent a wonderful day together, just the two of us, held our breath and watched.

The bowler measured out his run-up, paused, and started loping back towards the batsman. He exploded in a flurry of arms and legs, and the ball flew through the air. The batsman swung and missed, and the ball went sailing past him and hit the wicket so hard that the middle stump broke.

And so the team that Dad and I had  been rooting for lost by the narrowest of margins. It was an incredibly exciting day, and now that Dad is no longer with us, it is a father-daughter memory that I will treasure forever.

For the IndieInk Writing Challenge this week, Allyson challenged me with “Take the opening line from the book you’re reading. Use that somewhere in the middle of your piece.” and I challenged Jester Queen with “Tell us about an event that forces you to abandon a belief that’s been with you all your life.”

The book I am reading is a wonderfully humourous mix of fact and fiction called “What I Love About Cricket”, written by Sandy Balfour. It opens with the following sentence: “It’s the most basic cricket equation.”

Filed Under: Cricket, Daughter, Excitement, Father, Indie Ink Writing Challenge, Special moments Tagged With: , , , , ,