As this year comes to a close, I have such mixed feelings. Tomorrow Dan and I celebrate the 25th anniversary of our first date and our first kiss. We have spent every New Year's Eve together since that first one in 1987 and every one has been special in its own way. Looking back on 2012 I have much to be thankful for and many fond memories but I think it is safe to say it has been the worst year of my life.
The year started off pretty good though January was a whirlwind of unexpected activity. Not knowing what was causing my speech and breathing problems, we decided to visit Florida for a week where I found right away that breathing was so much easier than it was at home! We were referred to a neurologist upon our return to Colorado so we decided to seek out the best and get to a place where I could breathe easier while we sought a diagnosis. This meant leaving our home, my job (which put me on medical leave), the new life we had just started six months earlier, but we did it and it all happened very quickly.
The next few months involved going through a battery of tests but I was able to walk on the beach almost every day and, while I was becoming more and more concerned about my declining speech and what it meant, I was hopeful that the doctors would find an answer I could live with. In the beginning, I still thought there would be a chance to regain my speech but as time went on I started to have doubts. I remained positive and hopeful outwardly, but I had started to suspect the answers would not be as optimistic as I originally believed. Days before I was scheduled to meet my doctors for a discussion of my diagnosis, we went on a cruise to the Bahamas where we had some fun and laughs.
I've already discussed that fateful appointment in a previous post so I'll just skip over it here but suffice it to say, it sucked on every level. Leaving the hospital that day, overwhelmed with the knowledge that ALS had invaded my body and my life but not really understanding in any detail what the experience would be for me, we were devastated and all I could think was that I was not ready to leave my boys, I was not ready to die. That was April 30th.
The next month was a complete blur since I mainly spent it in tears. By June I was ready to start looking at life again, ready to move forward and face whatever was to come with Dan firmly by my side, a spot he has not budged from which has made all the difference. The next few months we took things slow after our initial impulse to do everything I had ever wanted to do immediately. I just needed to find a pace I could move forward with, but not run out of energy from, and Dan let me take the lead while supporting me every step of the way.
I took two trips to Orlando, once in June and once in November, to spend time with people I love and try to forget about having ALS for a little while. What I learned is that ALS goes where I go but I am still me, inside and out. I still feel the need to take care those who love me and no matter how hard it is to communicate, I'm not willing to be silent. The last few months I have been finding ways to adjust and adapt to the new realities I face.
Now, with the end of the year a day away, I look forward to 2013 with both hope and trepidation for what is to come. There are special occasions I look forward to like my son's 16th birthday and our 20th wedding anniversary. I look forward to Spring and feeling the warmth of the sun as it tans my skin to the wonderful bronze color I prefer over the pasty white of winter. I look forward to the summer months when the ocean is a warm and inviting place to swim. Yet I can't help but wonder if I will be able to swim in the ocean this summer. Will I still be making any effort to speak or will I solely use sign and electronic devices to communicate? Will I be able to eat cake with Dan on his birthday? Will I get to see the second movie in The Hunger Games trilogy? Will I be able to walk to the beach to watch the fireworks next New Year's Eve?
The answers will only be revealed in time and time is never promised so I will continue to live every day like it could be my last and hope that, whenever it comes, my last is enough. However, tomorrow I will celebrate the 25th anniversary of our first date with the love of my life and we will begin another new year together. That is reason enough for me to fight back the fear and embrace the hope that 2013 will be a year of strength, medical advances, and as always, laughter and love.
I wish you love, happiness and good health in 2013!