Unless you live in a cave, or you don’t have access to newspapers or television, you’ve probably heard about all the press regarding the first stem cell treatment for people with spinal cord injuries. I wanted to blog about it b/c it is very important to me and sometimes writing things helps me release some of my emotions.
When I was injured 18 years ago (geez, was it really that long ago??), I remember wishing that I could be the last person that ever sustained a spinal cord injury (SCI). I was in the hospital for 5 months and the toll and trauma the injury placed on my family is indescribable. When I look back on those early years, I must confess that the first two years were such a blur. I could write a novel about adjusting to life with a disability and maybe someday I will, but for now I just want to touch upon how huge this news is.
To give a tiny bit of background on the stem cell situation, this company Geron (check out their site and the 2 minute video that explains what they are doing so much better than I can at: http://www.geron.com/ ), will be implanting stem cells from embryonic tissues into 10 patients with newly acquired spinal cord injuries. Geron is the first approved FDA Company which is huge! We have never advanced to human trials so this is the first step in actually seeing an end to spinal cord injuries. My feeling is that it could still be years but if we are able to say sometime in the near future that spinal cord injuries are a thing of the past, that would be belong amazing.
As most of you know, I have a wonderful attitude. Yes, I have my bad days but I try to be a positive and upbeat person. I try to appreciate everyday b/c I truly believe that life is a gift and I know what it is like to be at deaths door. At the same time, there is no denying the fact that life with a spinal cord injury is extremely difficult. Most people don’t realize that when you have a spinal cord injury it not only affects your ability to walk but your sensation and bowel and bladder function. People with SCI have normal life expectancies; however, it is the secondary conditions that occur as a result of the paralysis that kill us. Examples of those secondary conditions are pneumonia, chronic urinary tract infections and bed sores all of which I have experienced more than once.
So, what does this new therapy mean and why is it such a big deal to so many of us with SCI? It allows us to still hope. What would this world be without hope?
When I was first injured, I never went through the denial phase, at least not that I remember. Perhaps my family could tell you differently. I’ve read that when you acquire a permanent disability many people experience the same stages of death and dying (remember Elizabeth KublersRoss’ stages of death & Dying? I posted them at the end of my rant!) I definitely believe I went through most of the stages except denial. I just knew from very early on that I was not going to recover. Throughout the years, I have met too many SCIers who have lived for the day that a cure would come. I learned early on that it was better to embrace life and not live for the cure. I knew that I could still accomplish so much and that if I just cling to the hope that someday we’d all be cured, I would have never accomplished what I have. At the same time, I have always clung to that little bit of hope that maybe someday they would find a way to improve the function of those living with SCI. My personal belief is that a cure will be incremental. Perhaps a combination of many different treatments i.e. stems cells and computer chips implanted in the brain to tell the brain what to do. I always equate stem cell research to the polio vaccine. Would we have a polio vaccine if brilliant people did not do everything in their power to halt the spread of polio? I believe that you need to start somewhere and for those of us living with SCI’s that somewhere is starting! Now I know that “Rome wasn’t built in a day” but it is a milestone in the research community that definitely deserves a blog post. Whenever I write these really long and heartfelt posts I usually get no comments. Kyle thinks I’m nuts when I get to personal but my life is pretty much an open book so why not blog about it???
I know the whole stem cell thing can be controversial b/c in this particular situation they are using discarded embryos from fertility treatments. What I want to stress the most is the word DISCARDED. People, these embryos would just be thrown away. Why not attempt to use them in a productive way and hope that something amazing will come of it? Plus what better way to restore a person’s quality of life? I know the argument can be made that you are taking a potential life. My response to that is for you to go spend a day on a rehab unit with SCI patients and their families to get a feel for how their lives are being impacted by this condition.
So, needless to say I am all for human trials using embroitic stem cells and until you know someone who has lived with an incurable disease or disability you should try to put yourself in their shoes and see how the lives of these individuals and their families are impacted on a daily basis. One of my favorite quotes is, “It is better to try and fail, than to not try at all.” We have the means to pursue these therapies, and I believe we must pursue science to see what the future has in store for those of us just holding on to that tiny bit of hope.
Five stages of grief - elisabeth kübler ross
EKR stage
Interpretation
1 - Denial
Denial is a conscious or unconscious refusal to accept facts, information, reality, etc., relating to the situation concerned. It's a defence mechanism and perfectly natural. Some people can become locked in this stage when dealing with a traumatic change that can be ignored. Death of course is not particularly easy to avoid or evade indefinitely.
2 - Anger
Anger can manifest in different ways. People dealing with emotional upset can be angry with themselves, and/or with others, especially those close to them. Knowing this helps keep detached and non-judgemental when experiencing the anger of someone who is very upset.
3 - Bargaining
Traditionally the bargaining stage for people facing death can involve attempting to bargain with whatever God the person believes in. People facing less serious trauma can bargain or seek to negotiate a compromise. For example "Can we still be friends?.." when facing a break-up. Bargaining rarely provides a sustainable solution, especially if it's a matter of life or death.
4 - Depression
Also referred to as preparatory grieving. In a way it's the dress rehearsal or the practice run for the 'aftermath' although this stage means different things depending on whom it involves. It's a sort of acceptance with emotional attachment. It's natural to feel sadness and regret, fear, uncertainty, etc. It shows that the person has at least begun to accept the reality.
5 - Acceptance
Again this stage definitely varies according to the person's situation, although broadly it is an indication that there is some emotional detachment and objectivity. People dying can enter this stage a long time before the people they leave behind, who must necessarily pass through their own individual stages of dealing with the grief.
(Based on the Grief Cycle model first published in On Death & Dying, Elisabeth Kübler-Ross, 1969. Interpretation by Alan Chapman 2006-08.)
