Thursday, 20 February 2014

Long Term Disability

It's going to be busy around here today. The electricians were in yesterday to do some work in my bathroom. They have to come back today to finish. The plumber was supposed to be in yesterday too, but he was delayed at another job so he will be coming in today instead. Jim will be working with the plumber during the day to get the trench drain in place. Once all that is done, and the rest of the plumbing is roughed in, we can repair the damaged gyproc on the common wall with the next apartment and then call for inspection.

Things are moving along slowly, but consistently, with my bathroom renovations. I am hoping that my shower will be in soon; I am getting tired of washing while sitting on the toilet; while the plumbing is being changed I don't even have that. It will be true luxury when the dual shower heads are in and the shower is working. It will be so nice to have a proper handicapped toilet and wheelchair accessible bathroom sink.

This is an expensive disease, something I have talked about in the past. Between wheelchair costs, truck modifications, apartment renovations and general costs, I am probably into it for somewhere in the realm of $50,000 by now. On top of that, consider my lost income due to my inability to work, and you are looking at somewhere in the are of $150,000 that ALS has taken from me so far. And it will keep on taking. I'm probably not going to live long enough to get to renovating my kitchen, and I can't afford it regardless. I will soon need a different bed, or box spring to be exact, and there will be more costs including things like medications, compression socks, and lots of smaller things. Oh, and there is always Rosa; I need housekeeping support, something else that comes as a result of ALS.

I am considering setting up a campaign to solicit donations to help me with these costs. However I feel very awkward about this. We were brought up to be self-sufficient, to look after ourselves. We were taught that to accept charity was to be in someone's debt, a poor position to be in. Welfare and "the dole" were for those who failed to plan for their life. There is a level of embarrassment to be brought so low by something I completely failed to plan for. Maybe I should have stayed at a steady job with group insurance and long term disability benefits. It's too late now, so there is no point in looking back.


  1. I looked at the GoFundMe site and it might be a good idea. I dont know about you, but for me it would be easier to ask for help from strangers, than from family and friends. Our generation was brought up on a "Dont ask for anything, dont owe anyone anything, "mentality. The generation of our children, the 80s was "get as much as you can for nothing, everybody owes me "mentality. I really like the new "Pay It Forward" movement. I , and Im sure you, have helped others in the past, not expecting a return,and now may be the time that you allow others to help you.They do it because they want to, not expecting anything in return. Learning how to receive gracefully is something we were not taught much about, and yes, it is humbling,but in your case, you dont have much choice. Allow your family and friends to shower their love on you. Its the only way they can help. Every one of us would just want to take this deadly curse from you, but we cannot.,Accept what they can do for you, even if it is just sitting listening to you.

  2. Oof! Out with the electricians and in with the plumber – How is it now? Renovations like that do take a lot of time and effort. But once everything's done, you'll be able to enjoy the comforts of a renovated bathroom. And there's nothing better than that!

    Levi @

  3. It is a very good idea to set up a GoFundMe campaign. My brother in law did a similar thing and had a lot of success with it. It is really a helpful tool to reach certain monetary goals. The thing is getting the name out there and sharing your message. Thank you for sharing this with us, thanks again.

    Tyron Tanaka @ Low And Canata