There was a time

I hate the concept of dwelling on MS – as many of you know, I refuse point blank to try each of the new wonder treatments as they come down the line. Personally, I think I’d rather have MS, than spend the next five years sitting in doctors’ waiting rooms.

I have many friends that need to dwell on their MS status, it is their driver, their sole source of comfort, to think that they can keep away the creeping demon for an hour longer.

I understand.

When I was diagnosed in 2004, I lost the plot completely. No-one understood (although I was in so much denial that very few people had any real knowledge of my situation and the few that knew were busy building new lives.) Still, my head got sucked into a black hole and that knowledge has certainly changed my life direction ever since.

I lost any business focus, and ceased to wait for people as much as I used to.

I decided to look over a few more hills, cross a few more valleys.

Most of my family disappeared, most of my friends only heard that I had lost the plot. I was alone.

I wasn’t welcome at a birthday party – ‘perhaps another day?’ I understood. I saw the doors closing quickly

The next few ‘Stroke Like’ events took their toll.

I got out of hospital and went home. That’s where I nearly starved to death. If it wasn’t for the Electricity Company that came to cut off the Power, I would be dead. I had managed to get up the stairs, but a few days later, I was too weak to get down to eat.

The Power Company called an ambulance when they arrived to cut off the power, the ambulance or hospital called Police, who called the Council, who called the Salvos who fed me twice on my return home a week later.

That was the week I remembered my niece’s wedding. I sent a text, I must have missed the number, so I lost the last of my family.

Trying to shake off the ‘poor me’ syndrome was difficult – I’d never really suffered depression before and now it was closing in on me. I realized I had to get through the grief stages in order to think clearly. Logically, but uselessly, I attempted to push myself through those stages… nah… they have to progress at their own rate.

Making the decision to purchase a Motor Home was based on the idea of eating up every moment of my mobility for as long as possible. The bed was no more than 3 m from anywhere, so I could stop whenever I needed to.
I went on a one week shakedown trip, to see what I could handle and couldn’t – I came back 3 months later for 2 days before heading off again – forever.

Decisions made at this time were not always rational, by past or even later standards. They were based on survival, fear – huge amounts of fear, and an overwhelming feeling of loss.

One of the decisions was to move into an old fallen down Art Gallery in Port Macquarie – I have made better decisions.
I stayed there for 2 years, then, with mobility somewhat stabilised, I took the chance at travel.

In the US, I met Gayle, an artist I had collaborated with online. She was a friend and a person who promised not to treat me as a patient. She had worked in the medical field for many years and had met all manner of broken people.
We were inseparable.
I still felt the loss of family.

Waiting

We are in Australia, waiting for governments to acknowledge that our relationship is good enough. We are married and loss is still a big deal.

She married the baggage, the man, the past, the present and the limited future.
Needless to say, I admire her.
I miss my family.
She misses her family.
I stumble a lot and fall.
I can’t lift more than a dinnerplate without folding up like a deck chair.
Gayle gets it… most of the time.
I get shitty – lots of the time… so much wasted time… what were we all thinking?

We are out of money, out of options, don’t have a lot of places to go and it hurts.
But not as much as the amount I miss my family.

Why did they do that?
Four children – gone… did someone say something about me that I have never found out? Never a word.

I feel as though I have been in solitary confinement for long enough to satisfy any supposed crime.

I hate to think about the sadness, guilt and pain that all of them have carried around all these years.

I forgive you. Move on. I still want the best for you – whatever your decisions are.

I will never get to see you, your children, your dreams fulfilled… but there has not been one day that I have not dreamed of seeing you smile and ended up in tears.

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2 thoughts on “There was a time

  1. In the letting go…

    My heart cries for you….so much loss and ache is hard to bear….

    Your still strong voice is heard by the unintended and you are not alone…

    Like

  2. Beau, Your story is my story! Your pain is my pain! The only difference is but I have a very loving family. But it still hurts me to the core to know that I can’t be the person that I want to be for them. It hurts me to the core to know that some day I will burden them. No matter what is said, I know that I will be a burden to them. When you have an uncertain future, and the uncertain future is just from one day to another, you begin to doubt everything. You begin to doubt yourself, you doubt the people around you, you doubt your choices, you doubt your existence and you doubt the all mighty God.

    I am a fellow MS’er. I have tired several different medications. Some that I hated. Some that made it tolerable for the moment. I am on one now that helps me feel better than I have for years. I am in a wheelchair about 80% of the time. My legs are weak and my balance is horrible. I live alone and I take care of myself. I rely on family for fresh foods. I order most items off the internet. That keeps me busy trying to find the lowest prices and free shipping. I kind of make it like a game.

    Since I live alone, I am lonely. I talk to family on the phone daily. And maybe once a week one of them will come over and visit. I get out of the house once a month for my monthly infusion. Every time I get out I am amazed at all the changes in my immediate world. I feel like a fish in a fish bowl watching the world go by.

    I was priviliged enough to meet you and Gayle on your trip across the USA. And we have been able to be friends here on facebook and also on Devinat Art. You and I have been able to cuss and discuss the issues of MS. It sucks to have MS and we both know it. But … we are both hard headed red heads and we will NOT let this get us the down. We will continue to fight, even if it is from sitting down. We still have a voice. You can write about so many things in your life. I would love to read about your travels and such.

    I love you man……JOY

    Like

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