Just Only Judy is living a full life with Multiple Sclerosis. Her posts may be about parenting, family, working in public health, MS, the Pacific Northwest or memories of the Midwest.
Monday, February 25, 2013
The 10-year anniversary of my MS diagnosis is fast approaching. If I were an optimistic sort of person I might be thinking about all the things to celebrate as I approach this mile marker on my journey. I am still doing very well and truly do remember to count my blessings. I write in a gratitude journal nearly every day.However, I am not an optimist.I often say I’m a realist. It is my realism that allows me to recognize my pessimistic tendencies.Just tendencies mind you! Eeyore is my favorite character in Winnie-the-Pooh. “Thanks for noticin’ me….” is my favorite Eeyore line, said in a slow monotonous drawl. Yet he finds gratitude in the smallest thistle.In high school I had the nickname ‘Glum’.The Gulliver’s Travels cartoon of the 80’s featured a Lilliputian named Glum. His tagline?“We’ll never make it,” said in a slow monotone drawl…wait a minute…Glum sounded just like Eeyore!
But before you perky sorts get all agitated about my lack of optimistic enthusiasm, let’s just pause and ponder that perhaps pessimists have a place in this world. If we all walked around thinking our glass was half full, who would go find the water before we ran out? Who would place more value on the water in their glass, the optimist or the pessimist? It’s basic economics, supply and demand. Less supply equals higher value. Have you ever considered that those with pessimistic tendencies may appreciate what they do have just a little bit more than the optimist who assumes the next happy adventure, or glass of water, is just around the corner? I know that there could be a happy adventure, there could be a 100-foot drop off, or there could just be a long, long road. As a realist with tendencies, I am prepared for all possibilities. I do think I have improved from my high school years.I no longer think, “We’ll never make it”. But rather “this could be a long haul and I am likely to get hot and tired”.
Ten years ago my mother spent her January birthday in the ER with me, waiting to learn if my inability to speak signaled a stroke or a brain tumor.We left several hours later with the knowledge that it was neither. It was a few weeks before an MRI gave us more clues and yet another month until, on March 27, 2003, I finally received confirmation that the chaos of my neurological system was caused by multiple sclerosis. By then I could not drive, walk a straight line, talk without slurring or stay awake more than 4 or 5 hours at a time.My MS was making a very grand first appearance that lasted for about 6 months. Then things began to quiet down.And my journey on this long, long road began.There have been more adventures, drop-offs and side trips than I can capture here. When I hit the 5-year mark I felt good. Literature supports the notion that your first five years ‘may’ be an indicator for your ‘disease progression’. However, as I’ve continued to meet others living with MS over the years, I’ve often heard phrases like this, “I was doing really good, no exacerbations for about 12 years, then it really hit me hard”. Or “I did well with the medications for the first 10 years then they seemed to quit working…maybe my body created antibodies”. There are a variety of these phrases playing in my head, all with a time frame of 10-20 years post-diagnosis. All with the story of a steadier downward progression.
Even worse is the nagging feeling that I haven’t done quite enough. What if these ten years were the big gift?My chance to do all those things I should do while I still could? You know from previous posts that I have been trying, through my “50 by 50” list to do those things.But I also had practical things I was working on.At the time of my diagnosis I was in graduate school.I quit and eventually got a full time job with health benefits, life insurance AND long-term disability insurance. I paid into Social Security so that if I became disabled I would have an income beyond welfare to support my boys and I.An optimist might have stayed in school, might be working in her dream job right now. Or an optimist might have ended up disabled and getting $700 SSI a month for the rest of her life. Who knows?I chose the path of realism and balance as best I could.
The truth is, it’s not just that it’s my diagnosis anniversary. I have never been a fan of occasions that mark time.Birthdays (especially mine), anniversaries, New Years Eve; all not on my list of times to celebrate. They are times for reflection, with melancholy tendencies. Times of tallying up what has and has not come to pass. Times when I miss people, things, places no longer in my life. As this anniversary approaches I am finding myself in that space of melancholy and reflection. A place where my mind and body are moving a little slower. During one poignant moment of reflection I thought about my mother in that hospital room. I saw things through her eyes.Something I had never done before.I now understand the fear that she must have felt, the worry for me and for her grandsons. I have a whole new level of gratitude for the bravery and courage she showed and gave to me, for the time that she spent helping to take care of her grandsons and my house, to cook dinners, do laundry, sweep floors, go grocery shopping…the list is endless.She did not live with me, yet she retired the next year and spent nearly every weekday here, helping us to acclimate and even thrive as I learned my ‘new normals’ and found my way back to a full life. As March 27th approaches I will be more reflective, certainly waning from melancholy to gratitude, from fear to hope. For now I will end this post with gratitude for my mother, the ultimate Grandma/Nanny/Personal Assistant, who took meticulous notes to ease my mother’s guilt. Guilt for working, being tired, being cranky, being sick. I’ll share just a few of the detailed calendar entries that she kept for 4 or 5 years, until the boys were sprouting moustaches and we had to tell her to just be Grandma now!
There are entries that show her absolute love for her grandsons. Times when she was left to care for sick children. One 12-hour period contains 18 entries of Hunter’s health symptoms, meds, foods, liquids, etc. Twice she stayed behind with Andrew while I flew Hunter to Indiana to see his dad who was deployed to Iraq. Both times involved a medical crisis for Andrew, one ending in an orthopedic surgery. My mother managed to handle it and keep me calm halfway across the country! And she documented every moment. There are just plain sweet entries like these:June 9th “Hunter was quite talkative today, told me all about build-a-bear, the ages of all his cousins, tallest, etc. Chose to be driven to school, seems rested and cheerful, he just needed to sleep in.”Oct 11th: “Washed all bedding. Went to driving range and DQ. Went to canned food store and market.Did bedtime reading w/ Hunter”April 22nd: “H- 3:50 fresh strawberries, warm brownieDecadent treat for boys, top of microwave, lift bag carefully, keep level.” And the humorous ones:June 4th: “Snoopy (guinea pig) does still have poopy tangles on her rear. I can’t do the trim. Break into sweat just touching her. Too much like a rat.”Dec 4th “New instructions on how to use roundabouts, no way I’m ever getting into the inside lane.They can eat my shorts!”July 5th:In Judy’s handwriting “Tear down bedframe”.In Gma’s handwriting “the mattress became an issue, tempting trampoline. For now it’s in your bedroom” Thanks mom! “Thanks for noticin’ me”, and seeing what I needed. I would not have made it without you!