I was sitting at my kitchen table, funny that it should happen there. I have always looked at kitchen tables as a gathering place one that holds those sacred family memories, the secrets both good and bad. The laughter and the love. The tears over the homework and the dents in the table when my little one threw his spoon at me for not wanting to eat his vegetables :). Now at 3:20 in the afternoon the phone rang I answered the phone without expectation for the journey of discovery had been 5 years in coming. I had been ill and had subjected myself to more tests than I could have imagined that the doctors had available and with no answer as to why I was just not myself. I say to people that don't really know it would be helpful if I could have little note cards you know the kind you make to study for a test really stiff so you can go over them again and again? I wish that I could have those and that the day before I could know how my body is going to behave so that I could plan what my days activities should be. Ahhh to wish, to dream . . ."Hello," Hello I said, "this is Dr.---" Ohh said I I felt like a helium balloon deflating and it makes that skweeking noise. I quickly sat down at the kitchen table knowing that I would need strength beneath my knees. "after extensive study, and taking your pictures before my colleagues . . .you have MS. I will have my nurse contact you today to set you up with the necessary medications and the monthly injections." Now what does one say to these few words that now change my life FOREVER? Would thank you be appropriate? How about an explitive *%*!** ? Maybe I take it back I don't want to know, I was kidding all that time and money I have spent with you jk? I remember that I stuttered out a few questions I really don't remember the answers and then that was it he hung up and I was left with my own thoughts. Now there are very few times that I am speechless, there are even fewer times in my life that I can remember being thoughtless this was one of them. My mind was a blank for a few brief moments and then the flood started - MSSS , SSSS like I was in a long tunnel with the s repeating itself. Multiple Sclerosis I couldn't even pronounce it I know I couldn't spell it. I had researched it knowing that it was one of the options that the doctor was looking for but to really have a name now. The flood continued, death, leaving my children, not seeing them get married, not seeing my grand children be born, not growing old with my husband (turns out that wouldn't matter), not having them remember me you see if I died young I knew I just knew they would forget me. DEATH, we are all born to die I have said that a thousand times I know that I get that but to really GET IT. It stinks, I want to take my toys and go home. I don't want to die by being unable to eat without a feeding tube, unable to control my bowels or my bladder, to go blind, my good friend has become completely deaf in one ear and is quickly on the way to becoming completely deaf, unable to walk WHAT YOU SAY wheel chair bound, unable to communicate properly as cognitive impairment slows down, inability to care for my home and the costs associated with it because I cannot think clearly enough to do so, unable to bath myself, and the list goes on, usually you do not die from MS no that would be to merciful you die from something like cancer, or a secondary disease because your body/MY BODY will be/ is so worn down that with an autoimmune disease and all those cells multiplying the way they do (darn those little rascals) that the body doesn't know what to do with them except make a different disease. Hmmm, what else might I be in store for top two PAIN AND FATIGUE. Both of these are truly indescribable I will have to take a full day just to try and describe each so that I can see if any of you relate. I did not know that I could be so exhausted and still be awake, yet another curse of MS, unable to sleep due to the excruciating pain, yet so fatigued from the disease sleep would or could bring sweet relief. Then I try to stop myself thinking that this flood of thoughts is just that random thoughts that I do not have proof for yet, and that I need more evidence before I can really FREAK OUT! I look at the clock and it has only been about 15 minutes since THE CALL crazy how time can stand still. I feel so alone in my home in this moment, I am usually so at peace in my home content and happy to be here but right then I wanted company I wanted physical warmth, breath of others to know I was not dying right at that moment. My wish was granted as my husband and kids came through the door just about one half hour later I couldn't wait for a quiet moment I never seemed to be able to do that I always verbally vomit. I think that really bothered my husband. I blurted it out - the news heard round the world, my world, I have Multiple Sclerosis. "OK and we have suspected that, so we just keep on going" Now this was not the response I wanted at all! I persisted with more gory details about how I was going to have weekly shots and a nurse was going to have to train 'someone' i.e. I hoped him on giving me an intramuscular shot, i.e. very deep and painful when it hits the bone and how I was going to have to take a lot of medicines because of this disease and how it was scary and and and . . . and then he stopped me and said, "not in front of the kids" I was mad, I guess I knew that at some level but I also wanted to do it my way I had been very sick for 5 years looking for an explanation to why I was falling down randomly, why I could not cut brownies fresh out of the oven with a butter knife, why some days I would have to be sitting in bed by 3 p.m. so that my head would not roll off of my body (that is what it feels like, did you know that the average head weighs 8 pounds?), cutting back on my volunteer life, and so many other things that made me - ME. Sooo when he said not in front of the kids I was cranky because LIFE is in front of the kids all of it had played out IN FRONT OF THE KIDS, the late birthday parties, the mom doing puzzles with them in bed instead of taking them to the park, dad taking them to school plays and taking photos instead of mom the photographer going? You see as you can tell I have very strong feelings about not telling kids about a parents illness because I believe that kids well at least my kids are brilliant and they get it! All of it! My husbands philosophy was don't tell and they won't notice, shhhhh it's a secret. I know that there is good to both sides but I figured since it was my disease I got to choose? All of this took place in a matter of an hour and one-half. The reason why I chose the photo that I did is because even though to day is gloomy and raining and even though I don't know how to type without run on sentences and commas in the wrong spots:), and even though we know that LIFE IS SO SHORT, enjoy the journey. I love to photograph the simple things the things we often overlook. I see beauty all around me, one thing that happens with MS patients is that I am loosing my short term memory that will progress to my long term memory that is why I am fanatical about taking photographs anyone up for a shoot?
"DO WHAT YOU CAN, WITH WHAT YOU HAVE, WHERE YOU ARE."
--Theodore 'Teddy' Roosevelt
Mamma J
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