Hope for a future

-----Original Message-----From: Anonymous [mailto:anonymous-comment@blogger.com] Sent: Monday, June 27, 2005 12:01 PM Subject: [Mermel's Little Blog Cabin] 6/27/2005 12:00:28 PM

I have a question for you Michelle. You indicate that you wish to go back to school, however what would you plan on doing after this, do you plan on working? You and have already said school was too physically hard for you before, so what would be different this time? I hope you are not expecting the " stupid' taxpayers, as your friend put it to pay for this. Maybe your friend should think it was not the taxpayers would be paying his way? --Posted by Anonymous to Mermel's Little Blog Cabin at 6/27/2005 12:00:28 PM


Dear anonymous,

I am sorry it took me so long to answer your very good question? You have given me not only topics for my blog but an opportunity to answer what many people are afraid to ask thank you.

The truth is I really don’t have any guarantees about anything including the length of my life but I have to try otherwise I will never know the truth. So making this on the assumption that I will live a long-time. (and I am 37 but was supposed to be dead at the age of five) . Also the fact that I am already on the ventilator increases my odds of survival. Past experience has taught me that I learned best in an environment with other people.

As you know our society makes investments in things like it easy for children and so on. Our government has to start making investments people with physical disabilities as well instead of putting Band-Aids on the problem. When I was attending school and rehabilitation hospital there was much invested at that time in rehabilitation and self-esteem for those physical disability. Many of those people like myself when on to get jobs and led very productive lives. (some didn't but that happens in education too) Those that could not get paying jobs were involved and contributing in some fashion. Not asking for handout but an investment and the rate of people with disabilities is only going to increase. And many people don’t realize that they can have a life even with a severe disability. This is no longer the case and many people are mearly housed lately in Alberta as few programs that produce adults with disabilities who have self-esteem.

Christopher Reeve was a good example of what one could accomplish if they have excellent rehabilitation and proper supports in place. Because he had worked previously to his injury and his friends and family he was able to get adequate rehabilitation and technical aides to move on with his life this despite his injury. He may have overdid it as he died from an infection in its pressure sore which was acquired from those long hours of sitting. But he didn’t give hope to those who had none and proved what you could do with adequate supports. There is also a fine balance between health and employment which may be different for each person.

But currently in Alberta people on ventilators cannot get any rehabilitation without removing their trach first. so die attempting. And there are no education programs in place as well. I cannot go to physical labor intensive jobs so the only option is to educate myself. To be honest I would be a salary of the doctor or lawyer in order to offset a medical costs. But I am willing to put my whole heart into paying my society debt to society as best to my ability, but like Christopher Reeve I need the supports.

So I have to weigh my skills, my interests, and the reality of my situation, which I have not forgotten. I do have physical limitations but the physical limitations have given me an opportunity to spend a lot of time thinking about my options. I do have to take into consideration that I will need a lot of the supports in place even if I took correspondence. I have been working for two years to get a computer which is due to loving support of my friends and family.

My mother died in 1988 so I am well aware that they may not always be there. I have never married or have children, my father is 63 and I have one grandparent left. I have 4 siblings with their own debts who help when they can. Sometimes when people and injury or an illness late in life work in the past and gained access to compensation or pensions. This is not the case for somebody who had been disabled their whole life. I have to find a way do it myself as I do not have other resources. I’m not feeling sorry for myself I wanted to say this as many readers are not aware of this unless they have gone through similar experiences.

When I attended university in 1988 I was given a offered to pay for my courses and took a student loan instead. When I went to University I took the minimum of full time 3 w courses and used an old“Brothers” typewriter (took me hours especially fix typo..aaahh) then use a state of the art donated (not by government) APPLE II GS computer .

I’m proud to say that I paid that back out of my $300-350 over 4 years. But the government decided that $140 (deducted anything else dollar for dollar of my income.) was all I could make as working full time was not an option as my arms would give out after working.5 hours a day. I went to “Consumer Affairs” a free financial Counseling group told me my job was putting me in debt .

Despite my situation I am not a quitter, or lazy for that matter. I currently volunteer hard with 4 non-profit societies. As I currently do not have the physical stamina or enough education to earn wages high enough to support my enormous medical.

I abhor people on pity parties. As you are correct there are many people with disabilities who want to be victim and wallow in misery. Many have just given up as they have been given no hope. I want to bring some hope back to People who have given up and there are many people who live here that are palliative care and many others who are very ill do to MS, ALS, Parkinson OPD ect and do not very good prognosis’. I understand their situation.. I am so grateful that God has left me with my mind, my voice, my left index finger too type and lots of hope as many that live here don’t have any of these.

I was lucky to know of a man Who had Polio who lived 30 years in institutions. At that time people who lived on ventilators were fortunate enough to live on the university campus. He gave great things, wrote a book, worked for the government, and got married to one of his nurses. The pay for most of his nursing care now and his wife is able to help him. Meeting him when I was a teenager implanted seed of hope in my heart in me at an early age hope.

Like I said I don’t have the physical ability to support myself so I left with my mind which I’m thankful for. I however in order to have a job in which would get paid, I would first need to improve my educational skills. To be perfectly honest there is no way at this point that taking full time is possible at this point, however new technology make things that would never have been able to do before possible for me to at least opportunity to try taking open studies part-time.

My plan was to audit 2 part-time course for year including reading study material on PDF and home work . I would write down or essays but I wouldn’t get any credits either but it would be integrating myself back into routine. Its may take me a long time however. I would be trying. Nobody ever has any guarantee about anythinh. New computer technology advancements and a patient technIcal friend have opened many doors for me.

I really love working with nonprofit organizations that help advocate for other people so I plan on making my own curriculum by taking over the study to help those who need hope. Whether I suceed is in Gods hands but the important thing I that do my best. Does contributing to society have to have a $ value? Is it our right to judge others, which is something that I have to ask myself as I have occasionally failed on? Thank you anonymous for giving me the things to reflect on. This is honest. I don’t mind if you had any realist and positive ideas to help me on my journey.

Michelle