Okay – to start with the facts and move on to the figuring. New Dr. appointment goes well. I think the man actually cared – imagine that! Is in the process of retrieving all of my medical records and only asked me for a release instead of being my own courier system. I’m impressed. Reason being, he is not sure that what I have is, in fact, multiple sclerosis. It could very well be another syndrome- Devic’s disease – and have I even been tested for that?
While he’s now doing that – and hopefully calling me back with results – I’m back at home doing my own research. Unfortunately, I can’t really see usefully at this time. Both of my optic nerves have decided that they have better things to do than properly interpret my environment, and this past week the computer has become almost unbearable. (I’m writing this in mega-font…and the editing may be noticeably lacking :-/ ) But on the upside, I have discovered YouTube in a whole new way. What you cannot see, you can listen to. When you start looking up medical stuff, you end up with some GREAT lectures, that most people would consider boring. However, it is real brain food for me to listen to a researcher/doctor lecturing to a whole bunch of collegues about new findings. For those that don’t know me, this puts me back into medical terminology, which is my formal education and my passion. Especially when you got this shit coming and knocking down your door, trying to ruin your life. My sister said it well…Let’s get a name on the dragon before we try and slay it. Turns out, the Mayo Clinic has a whole symposium on rare neurological conditions, of which this Devic’s syndrome is one. I listened to several hours of it.
Long story short, it’s not great news, in that it’s way worse than MS, as I am knowing in an up close and personal kind of way. Basically, you suddenly lose your sight and legs, possibly your arms and breathing, in a matter of days, they try some of the drugs that have worked in the past,maybe swap out your plasma for some that isn’t confused about what to attack and what to leave alone, and hopefully you get better. But like MS, it will leave all kinds of parting gifts for you to cope with for the rest of your life. If you are unfortunate, you will have relapses at completely mysterious intervals that will leave you again, with consolation prizes. At some point, respiratory failure occurs. If you are lucky, you will have a monophasic type, have it once and get over it…end of story.
This is, of course, just the box. We don’t even know that this is what I have, but in the event that it is, this is the preview of what’s in the box.
But they gave me a box for my son called Duchenne about 10 years ago. And I’ve had a box called an omphalocele handed to me for my daughter 24 years ago. And both times I have refused the box and with better than expected results, so I think that’s the take I’m going to go with on this. We live in a world of infinite possibilities, and I refuse to tie up my hopes and expectations in a package of medical misery.
I do have another appointment with Wizard of MS – a highly acclaimed physician – on April 11th, so we’ll see how that goes. In the meantime, I just have to get through every day with no eyes and no legs for all intents and purposes. This is where the facts end and my figuring begins.
Through no choice of my own, I have taken my paradigm shift to a whole new set of coordinates, and I am learning a whole new appreciation for this latitude. I have been an advocate and an informed person about this whole wheelchair thing. I just never expected to be the one IN the chair. Not for any length of time anyway.
I have suddenly come to know a reality that you simply cannot know until you have experienced it in your own flesh. As walkies, we can observe, or in my case, even live with a wheelchair-bound individual. You can only sympathize and imagine what it would be like, to have the entire top half of your world disappear, as it were. I suppose that for all the times I contemplated and tried to empathize what it would be like to be in Phil’s place, I’ve had no friggin’ clue. Sitting and waiting for someone to do something for you…the inability to just reach across the counter and grab the toilet paper that is out of reach…feeling like a burden, and feeling an acute lack of a contribution to the household. Having no place to go and nothing to do but take a walk inside your own head and think…and think…and think. To feel like you are on the outside, looking in, just observing the world that you don’t feel like you are a part of anymore.
I rolled into Phil’s room this morning to wake him up and his first request was for me to scratch his head for him. Talk about a reality check for me. I suddenly felt fortunate..I was still much stronger than he is, capable of scratching my own head. And I had to excuse myself to go and cry, because I was suddenly filled with an “Oh my god” moment: How does this kid EVER wake up in a good mood? He’s not even hoping for the latest, greatest medical breakthrough to get him up and back on his feet. He is old enough to have contemplated the Valley of the Shadow, and his future walk through it, as most of us don’t do until we are much older. And yet he smiles.
And I know that part of the smile is because of me. Even though I cannot do the things I was doing a month ago, I am still a comforting presence. I’m MOM. And that will always be something.
It’s been a difficult and emotional time for us both, I think. For me, it’s realizing I’ve been experiencing a plethora of “last time”s. I remember when I realized with my last two children the very last time I breastfed them. I was so sad. And life is kind, in that we are seldom aware of the infamous “Lasts” as they occur. We get to mourn or rejoice over them at a later date when the realization catches up with us. And with nothing active BUT my brain, well…the awareness is mixed bag. There are many things that I have no idea about the future of…and so don’t think about them in terms of the last time. But there are things I know will never be the same…things I know I have to let go of. They are just not part of life on these coordinates.
Letting go is the most perplexing experience I know of to date. On the one hand, it is the hardest thing to do. On the other hand, it is utterly and completely effortless. All one must do is be still, and let go. Watch the thing that we held dear fall from our open hand into the stream and drift away on the current. And yet somewhere inside of us is a hysterical, screaming, struggling person, grasping blindly as it floats away…our fingers close up on air. And all we can do is cry. And once again…take that woman by the shoulders and let her go.
It’s hard to see other people doing my job. They don’t do it like I do. I dare say that I do it better! After all, I’ve pretty much made a career out of caring for my son and the rest of my family. What a mixed up place to be insanely grateful that they have stepped up to cook dinner – how horrifying to see something that came out of a box! What a relief to have the laundry done…but that is NOT how to fold a towel. I’ve shed tears of gratitude for those who have gotten Phil up and down…but they didn’t position his pillows the way I do, damn it. So does this make me the hardest person to live with suddenly?
A valid question to ask myself, but the answer is no. It’s all a part of the letting go thing. Will I die if I eat the Hamburger Helper my daughter made, instead of mine from scratch? No. Is the improperly folded towel still clean? Yes, it is. Is Phil still comfortable enough to sleep through the night? Yes. My priorities have definitely been shuffled, and what is truly important is rising to the top, and gratitude for the people in my life is some sweet cream.
Life has slowed WAY down for me, and is simmering down to its very essence. Kind of like moving from Chicago to New Guinea…not the same. Who knew life was still life, even in ultra-slow motion? More important still, who knew that it was okay to move so slow – in fact, that parts of life would become richer than ever? That appreciation would taken to a whole new level?
This is where I find myself today…in a relatively dark and motionless world, and it is my choice to either sit here and mourn it, or take the copious amount of time I have here and explore a bit. Life’s decidedly not over and there is much left to learn. Today I am grateful for my “classmates” and “professors”, and for those who arrived at this place before me, who are teaching me a brand new way to LIVE.
