Unexpected Gifts

     I have said this before and it bears repeating here, every good thing that happens has some bad attached to it, and every bad thing that happens has some good attached.  

     As I am writing this I have crossed the one year anniversary since my diagnosis of ALS was confirmed at Sunnybrook Hospital.  Amyotrophic Lateral Sclerosis, a rare neurological disease that affects motor neurons in the brain or spinal cord that affect voluntary muscle movement.  Think of it like when you go to sleep, except in my case parts of my body are going to sleep never to wake again.  I’ve lost the use of my legs, I’m losing the use of my left hand, and my ability to speak is being impaired.  Eventually the muscles that allow me to breath and swallow will stop working.  In some cases ALS also results in frontal lobe dementia, so your two options are having a healthy mind trapped inside a non-working body, or dementia where you still are trapped inside of a non-functioning body while you have no understanding of what is going on, or the burden you are placing on your caretakers.  

     So about now you should be saying, how can there be anything positive about having ALS?  What good can possibly come from this Death Sentence?  Well let’s ponder that question and see what we can come up with.

     When given a terminal diagnosis I had a rather drastic shift on my perception of time.  Prior to the diagnosis, I didn’t give time much thought, foolishly I thought that my time was almost like grains of sand on a large beach, almost endless.  Once I received my diagnosis suddenly time became like the water in a canteen, something not to be wasted or used foolishly.  So you are wondering why is this a good thing, well it is because I have been taught the lesson of Mindfulness.  When you have lots of something it is hard not to take it for granted.  When you have something that is limited and quickly running out then you appreciate it a lot more.  You suddenly realize what an amazing gift time is.  You suddenly have the wisdom not to waste your time on foolish things.  You don’t waste your time on bad books, bad movies or with people you don’t want to spend time with.  If you want to do something and you can, than you do, no longer putting things off for some day in the future because now you know that someday may not come.  I wish that I had learned this lesson about the value of time much earlier in my life, but am grateful that I did learn it eventually and in turn  have worked much harder at enjoying what remaining time that I have left. 

     Living in Canada, or in this case Ontario I have a government run Health Plan.  On top of this I also have a benefit plan from my workplace until I am 65.  I will spare you numerous sad stories of people in other provinces, or in the U.S. who were waiting for approval for the ALS drugs and after two years of waiting they finally get the letter advising they had been approved,,,,the day before they enter a Hospice.  People who live in remote areas of provinces where they are hours and hours away from the nearest ALS Clinic, or even any medical assistance.  We are now living just over an hour from the ALS Clinic at Sunnybrook Hospital in Toronto, generally accepted to probably be the best one in Canada.  I never really understood what a gift the pubic health care system was prior to this, but I do recognize how lucky I am in comparison to so many others.

     I would guess that my ALS medications probably cost somewhere between 200 and 300 thousand dollars a year.  My benefit plan is presently paying for my drugs, can you imagine not having coverage for drugs that could possibly help you?  Where you have to decide between selling or mortgaging your home and draining your bank accounts to buy your medications or choosing to go without.  Where medical decisions are based on dollar amounts instead of what is best for you?  I am grateful for the gift of a benefit plan that allows me to take these expensive drugs in the hope that they are helping me.

     I have met so many amazing people in the medical field since the first day I attended Sunnybrook.  The entire team at Sunnybrook who compassionately care for their hundreds of patients, knowing that everyone they are caring for will eventually lose their fight,  ALS remains undefeated.  As well the nurses, ALS Society, and Community Care Team who all make this horrible disease a little more tolerable.  I am grateful for the gift of all the caring people who work hard to look after me in such a kind, caring and compassionate way.

     A disease such as ALS is expensive.  The amount of medical or assistive equipment can be prohibitive, says the guy waiting for his $32,000 electric wheelchair.  The items we have around the house are a collection of things people have given or loaned us, we have purchased new or used, or that we have been reimbursed for through my benefit plan.  There is something called the ALS Loan Cupboard where people donate used medical equipment, let’s be honest, probably after their loved one dies.  I presently have a walker, electric lift chair and an electric hospital bed all loaned to me from the loan cupboard.  The list of medical equipment I require is constantly growing and already my life would be unbearable without it, so I am grateful for the gift of all this equipment that I have access to that helps me make it through my days.

     I will wholeheartedly acknowledge that I find myself surrounded by the best possible friends.  These are friends that take time out of their very busy lives to visit, or call, or email or set up video calls.  Somehow the whole world is going on at an extremely hectic pace while my life is coasting to a stop.  Most of the world continues on riding the merry go round of life, but a few people realize something important is going on and they are here for me.  Together we exchange old memories, share embraces, shed a few tears and just generally stand by each other.  When you are travelling a dark scary path and suddenly you find a trusted friend at your side you will notice your path becomes a lot less dark and scary.  I am grateful for the gift of dear, treasured friends.

     I have my dear sweet wife Robin here by my side from sun up to sun down working so very hard to look after me.  I don’t think anyone else has someone as amazing as her, and some people are forced to go through this nightmare alone, which I can’t even begin to imagine how impossibly hard that would be. I am grateful for the gift of my loving wife Robin.

   In Canada there is Medical Assistance In Dying, also known as MAID.  If you have a terminal illness, you can fill out a form, meet with a Physician who should agree with your decision and sign off on the form.  Then a minimum of three months later you meet with a second doctor go through the process again at which time you can select a day you want to end your life.  You can change your date or back out at any time, and yes if you are wondering it is a surreal experience going through this process.  I have friends travelling the same path as I am in the United States who would have to travel to another state to end their lives, as if this process isn’t difficult enough they have to travel to a strange place hundreds of miles away from their home and friends to end their suffering.  I am grateful for the gift of living somewhere that I am treated as kindly as a beloved pet who is allowed to leave this world when their struggle to live becomes too much for them.  Leaving this world in a kind compassionate manner, surrounded by loved ones, finally able to rest after fighting the good fight.  

     So I encourage you to always remember, every good thing that happens has bad attached, and very bad thing has good attached.  So next time something bad happens to you I encourage you to look for the good.  Yes you may have to look hard, yes it may be hard to find but I assure you it is there.  Then once you find those good things I encourage you to focus on them rather than the bad things, I think that will help make your journey a bit easier.