I have been given permission to copy/paste this amazing letter from a person with MS to everyone else in her life. I had wanted to do this because the writer's experience of MS is so similar to mine (I was diagnosed in 1998 not 2003 but our symptoms vary only in that mine are thankfully, so far, a little less severe):
Dear Family, Friends, Coworkers, Acquaintances, and Small Pet:
I am writing to inform you that, contrary to what I may be telling you or what you may think you are observing, it is a lie...a falsehood that I have been perpetuating for several months now. Something I have been saying or pretending to be as a means of hiding behind what is my truth...something I have been actively trying out of desperation to cover up because of fear and a sense of vulnerability.
I have Multiple Sclerosis and I am not well. These past few months have come with a new level of loss and grief as I have struggled to manage, hide, and deal with ever-changing and perplexing symptoms of my MS. I have wanted to believe out of desperation and fear that these "changes" were simply temporary...that, as usual, I would experience new symptoms (relapse), but they would eventually go away (remit), and I would happily return to the same level of functioning I have taken for granted since I was diagnosed in 2003. It is with deep sadness I must admit to you, but primarily to myself, that this is not the case. I am slowly becoming "disabled"...a word I both abhor and one in which I am terrified to speak out loud.
I am losing cognitive abilities. Something I am far more frightened to admit or deal with than any trepidation I might experience in having a leg severed from my body. Yes, I know that sounds extreme...certainly losing a leg *should* be far more traumatic than a slow decline in one's mental capacity? But in my world and way of thinking, it is not. You see, I could learn to walk again with only one leg...and I have a second leg to carry me as well. What I do not carry spare parts for is my MIND and my ability to speak, make decisions, process language, experience regulated affect, and a whole host of other abilities each of us uses every day as a defining feature of who we are as a person.( Collapse )source