Friday, February 26, 2010

True Confessions

I will give you
treasures of darkness
hidden wealth of secret places,
         So that you may know that it is I,
         The LORD, the God of Israel, who calls you by your name. Isaiah 45:3

I saw this verse at the end of a book I was reading this morning and ever since I have tried to grasp what treasure and wealth could possibly be mined from dark and secret places. As mentioned previously, depression is the giant ogre I am currently battling. 
Sister Theresa, who remains the embodiment for living ones beliefs, was recently revealed to have felt cut off from God for much of her life. And yet, she lived a life of faith and compassion; changing the life of countless people.
For me, who certainly isn't expecting sainthood at any point in the future, a byproduct of the one-dimensional, grey-scale world that is depression is this tooth-achey feeling that I am separated from God. That I cannot quite work up the energy to break through the fog that seems to flow between me, God, and the world. These song lyrics (by Jack's Mannequin) "I Called on Jesus, but He didn't check His phone today..." daringly put into words a feeling I haven't heard many Christians express.
This is depression, I know. It is an elephant sitting on my head, cotton wool clogging up my brain, and Marley's chains insidiously holding me down. 
Maybe the treasure of darkness is surviving it. The self knowledge that I have conquered another day. I saw the darkness and dang nabbit it didn't get me this time. And, if I am fortunate, the wealth from secret places will come from being open with my depression. Maybe someone else can relate to and even be helped by my experience.
Another aspect is not allowing my feelings to dictate how I live my life. If I did that, who knows where I would be. Probably stranded and out of gas in an old rusted out beater, all alone in the middle of Death Valley. Instead, I remain committed to tomorrow, to praise and prayer, to family and friends. The real treasures of my life.

Monday, February 22, 2010

Job Posting: Not For the Faint of Heart

I started this post last week and couldn't find the words to speak with an authentic voice. Right now, depression is kicking me in the rear end and I don't have much enthusiasm for anything. My world feels one dimensional. It is commonly misunderstood about depression that people who suffer with it will be sad and sit like a lump in the corner. I tend to put on my shiny happy face to the world and deal with it internally. I am doing all the right things to care for myself; working with a doc on meds, talking with my fabulous counselor; and most importantly, being open about my struggle. Depression is a byproduct of MS and therefore very difficult to treat.

Something I am working on is putting away the happy mask and being more authentic. Not sure yet what that will look like, but I am working on it.

To not put too fine a point on it—opting to be in the life of a person with MS takes the guts of arctic explorer Shackleton, the determination  of Joel Waul (who?), the compassion of Sister Theresa, the creativity of Alexander Calder (who?), and the humor of Gilda Radner.
What then is the role of the person with MS? My tendency is to feel obligation and guilt for the extra load of crap that this illness dumps on everyone around me. I say I am fine when I am drowning. I eat my casserole without added salt because I can't bring myself to ask for one more thing. I say I am sorry over and over to cover up the way it makes me feel to ask and ask and ask.
I am slowly coming to the realization that for those who have chosen to stay I am not in control of how they choose to react to my requests. Nor am I responsible for the choice of friends who have slipped away.
I have to stop saying I am sorry for asking for help, sorry for being in a bad mood, sorry for being sad, sorry for being sorry. My MS story includes chronic pain, pernicious depression, and cognitive and physical deterioration. And, if people are honestly willing to stick around, they are signing up for extra ordinary duty. I need help. All of the time. And it sucks to be needy.
I am trying to peel away the layers of guilt and obligation and accept that this is my life, these people have chosen to be in it and together we have a challenging journey.
So, I am not sorry - and, maybe I need to carry around a roll of quarters and ask everyone to fine me it they catch me saying it.
Thank you for choosing to be a part of my life!

Saturday, February 6, 2010

Kubler-Ross Missed a Stage or two.

Years ago a therapist suggested that with MS each decline, physical loss, pain episode and other changes in MS's bag of tricks will trigger a new, completely separate, journey through the Five Stages of grief. So, as a season ticket holder on the MS roller coaster, with its hair-raising turns and stomach tumbling twists, I could expect to live life in a never ending state of grief. 
The comforting thing about Kubler-Ross's stages are that they have a beginning and an end. That means that at X point tragedy strikes and as time and circumstances permit, one could claw their way through a process. Might take 2 months or 45 years, but it would have stages...It is difficult to put into words, for I am in no way suggesting that a singular tragedy can be tidily broken down into discrete chunks or manageable chapters. All I am trying to say is that if the supposition is true that every MS loss starts a new journey through grief, I live in a kaleidoscope of grief stages that have no beginning, middle, or end. A compost pile of denial, anger, bargaining, depression, or acceptance.
Today's Bizarro Comic shows a person having a pie fight with the grim reaper and the caption reads:
Last Stage of Grief: Comedy
What a fabulous idea, rather than being caught spinning in an infinite web of Kubler-Ross's devising, I add to and embellish as I fit. Other stages I propose are:

  • Irony {a state of affairs that appears perversely contrary to what one expects} What am I doing sitting on the floor in front of the toilet?
  • Discombobulation {thrown into confusion} where am I, how did I get here, and didn't I know how to do this, like five minutes ago
  • Phooey {disdain or disbelief} expletive, expletive, expletive, followed by childlike wonder at how quickly a glass of water can slip through a hand.
  • Droll {amusing in a strange or quaint way} keep watching me, I might do a trick-as my body moves to its own drummer, or feeling like an unwilling participant in a freak show
I will keep considering others that occur on this journey. Let me know if any occur to my friends and family who are reading along with me in this fight.

Wednesday, February 3, 2010

Roller Coaster Update

Brain, Brain, What is Brain?

Thank you, Leonardo for finally helping me see what my brain on MS looks Like! Or at least feels like...

And, thank you to everyone who has emailed and commented and prayed and helped out over the past few days. We are still here and some things are better. I am always so glad to be able to report that. Here is the latest:
  • I saw an ENT on Tuesday and, amazingly, he was knowledgeable, believed me, and told me this throat closing thing isn't going to kill me. I say that rather flippantly, but, after four years of that flitting around on the edges of my consciousness, I am over joyed. 
  • Apparently the throat spasm is triggered by a signal from my brain and if I were to pass out, the signal would be interrupted and my throat would open up. I am seeing a speech therapist to work on this and taking a new med.
  • My cough is helped by the med-but it makes me loopy. Not too surprising given my life long membership in the blonde camp. And, that the doc said only a few MS patients get loopy from this med!
  • As I suspected my intermittent nasty sounding cough isn't from sinus or throat problems. Nothing quite like having a nasty tasting numbing medicine sprayed in your nose followed by a scope. Not my favorite test, I must say.
  • So, I am tentatively eating solid food, swallowing pills and trying to let go of the fear and panic that Sunday's scary episode brought to the surface.
Again, thanks to all for the love and support. Especially my hubbie who stands by me through everything-even magically procuring an emergency appoint with an ENT for just 24 hours after he called my neurologist. 

Monday, February 1, 2010

Take a wild ride on the MS_symptom rollercoaster

Yesterday was all over the map in MS adventure-land. Started my day with too much arm pain and fatigue to make an attempt at church, later the sun came out and hubbie and I took our dog on a longer than usual walk, and after a couple hour rest, I even managed a trip to the grocery store. The kind of day that might seem normal to some, but for me was tilting more on the plus side.
In seconds that all flipped on its head. It seems that the way MS manifests itself in my body follows a simple rule: if it is odd, rare, unheard of, or untreatable then my body says, "come on in and join the party."
One of the reasons I stopped working was a diagnosis of laryngeal spasm. As simply as possible, this condition is the weakening of the nerves that control the opening that leads to the larynx. Sounds rather benign until one considers the word 'spasm.' As in sudden tightening of muscles, that, in this condition, causes coughing and choking and, rarely, causes the throat to snap closed. The doc warned me this could happen any time, any where. I was deeply scared at first, imagining myself suddenly unable to speak or breath, but after years of on and off bouts of coughing, swallowing trouble, and drooling, and no outright episodes of not breathing, I thought I had this particular annoying symptom under control.
So, back to yesterday. Manageable day, throw in a load of laundry, see about dinner, and watch a movie with the old man-no problem. As I carried an armload of socks and underwear down the hall, my throat constricted and I couldn't breath. No speech, no air, nothing. I have never been so scared. I pounded on the wall and J came running. Suddenly, my throat released and I could breath again. Seconds only, but, for me time collapsed into an indescribable jumble. J held me, rubbed my back as I coughed and gasped. Slowly, the episode faded. I had peed all over my self. Since everything seemed back to normal I went to change and clean up. It happened again. 
And again.
For the next two hours, at random moments my larynx would snap shut. It felt like the hand of a giant, no an evil imp, really I don't have the words to describe the terror I felt. 
We did the whole hospital debate. What if my throat didn't open up again. I could die. But, there is no emergency treatment for this, short of tracheotomy. I ghoulishly suggested John should go sharpen a phillips-head screw driver. Crazy as it seems-cost factors in-both the wallet and emotional kinds. 
People, even docs, don't get MS. I just couldn't face sitting in some ER, dealing with all of that crap, and having to explain and defend my illness. 
I made it through in the only way I know how: with my sweet husband by my side, calling the family medical expert, and sending out an urgent prayer request to my church family. 
I refuse to be defined by or controlled by MS. I am still clawing my way out of the web of fear that this episode caused. It is right there, a whisper of thought on the near edge of my mind: when will it happen again, when.
I coughed so hard last night that my weak shoulder slipped a bit out of its socket, J is getting to be a pro at popping it back in-so it hurts this morning. The tendons in my neck are tender so it hurts to move my head. My throat is raw and I keep coughing. I have a searing headache.
And, I have fear.