One More Year and Counting

January has held a special place in my heart for the last ten years. It marks for me one more year of life that I have survived my prognosis of ALS...woot,woot! I have made it for 17 years and could not have expected the quality of life these years would bring. I was asked why I think I have survived this long when the average life expectancy is 3-5yrs. My answer has changed over the years because I've learned so much. At first I felt it was my fighting spirit (mind over matter)but then I witnessed God's hand holding me up when I felt my spirit becoming overwhelmed. In time I added the elements of drugs(on my terms), physical exercise(the pool), research on other people with ALS and taking control of my medical care. All of these things, along with love, have kept me strong.

When I hurt my shoulder I kept my spirit, prayed, threw away the sling, refused Vicaden, insisted on a more thorough exam, cancelled the MRI and am using my arm as Ibuprofen helps me push through the pain. I'm sad to report my co-ed showers are now over but my razor burned armpits are thrilled. Dave is back at work and I'm sure he is thrilled to get time off from his PMSing, helpless, pissy wife. Caregivers are certainly a rare breed and I get chills when I realize Dave chose me along with my colorful, heavy baggage.

Dave is not a saint but if you watch him as an observer in my home he knows what I need before I have to ask. My clothes, bras and jewelry give him fits because my arms won't cooperate, my breasts pop out the bottom of my bra and he can't see the earring holes without his glasses. He knows I need to get back to water therapy so his current plan is to give up his garage and add a above ground heated pool with a ramp and no slip Astro Turf, brilliant. Even though he leaves things lying around, is not a housekeeper, still mixes colors with the darks, has not mastered the remote, yet must control it, he is still the best man I'll ever know.

Two years ago we decided to sacrifice time and the luxuries money could buy to map out a dream. A home in the mountains, near a lake. We spent one year fixing up one home to sell and one year fixing up this one to live in, putting aside money for things we wanted for our dream house. We managed to not touch our stash for two years awaiting Dave's retirement, but then the housing market hit bottom and we got stuck with two mortgages. Dave got a job after he retired so we could wait out the market, allowing us to use our luxury stash to complete our dream. After two months of living our dream Dave was still waiting on paperwork to start his new job. I knew something was up after that first week of work and Dave was not being the best communicator so I had to pry it out of him. He confessed that now he's back working he hates having to work. The dream he had for retirement was dangling before him like a carrot.

My first reaction was a selfish one because I had been waiting two years to have some fun and thought to myself, he is 50 and healthy but I'm not, no way. I got where he was coming from but I could not wrap my brain around it. When I fell Dave was off work for the holidays and it scared us both. I came very close to losing the use of my left arm. If I had torn my Rotator Cuff completely I could not be alone and would be confined to a wheelchair overnight. The doctor warned me that my muscles are too weak to protect me in a fall. We dodged a bullet that would have changed our lives drastically. He wanted to quit his job the second I fell but I never thought he was serious and I don't want to get dependent on Dave but being home alone is tough.

I've had time to think about my attitude and I came up with a marital compromise. We listed what we needed for his summer yard projects (to keep him busy), cushion for emergencies and bills (with housekeeper). We have no debt except mortgages. If we can save enough by spring/summer I could make the money stretch until the other house sells so Dave can truly retire. Dave needs to keep busy and we've managed since Oct. so I'm thinking 2008 will be an interesting year.

That's our 2008 plan and for 2009, Kauai, here we come! Plans are good to have but keep in mind they may change when you least expect it, so expect it!


Photo by Dave