I've been stuck on that first line. As I read it, it feels real but not entirely true. The truth is that my ALS is progressing. What that means to me is that absolutely everything I do is hard. Frustratingly hard, and it is a difficult thing to live with the knowledge that it is only going to get worse. My body feels extremely heavy, and I feel a lack of motivation and clarity in my brain from feeling exhausted all the time. The truth of the matter is that I haven't written a post because I have had a hard time finding a way to write honestly, thinking that no one wants to hear the miserable side of things, but writing only the positive does not feel truthful. I am generally a positive person, and feel best about myself if I can be inspiring to others. When I feel sorry for myself I don't feel very inspiring. And I think of the ALS heroes who never seem to give up on their quest for advocacy and a cure. Travis always tells me that what we don't see is their personal struggle. Because of course they have dark days. Miserable, self-pitying, depressing days. And that is okay, because that is our reality.
But then several of you have reached out to me, a few people I don't even know who have told me that they enjoy reading my blog. So instead of not writing, I will continue to share the bad with the good. I just can't help it, I am honest to a fault.
Travis & I had an amazing time in August in the Okanagan visiting with Kate, Malcolm, Keith, Tania, Rolo & Karma! As we had a particularly wet summer in Ottawa, vacationing in Summerland was our summer. It was above 30 degrees everyday, my kind of weather, my body works so much better when it's warm! Travis's cousin Ben came for a visit, as did my cousins Debbie & Michelle. We ate peaches, saw 54-40, visited vineyards, a lavender farm and even dared to swim in Lake Okanagan with Ogopogo! The most special part was of course spending quality time with family, before my amazing niece was to leave for University to study nursing! For more you can visit the Travel & the Gallery page of this website.
Not long after we returned from Summerland, we were blessed with a visit from Heather & Andy (of course we had too much fun 'nuff said)!
Travis's parents came all the way from New Zealand to stay with us for the month of September. We had incredible weather and a great time visiting Mosaïcanada 150. Travis & his parents went on a road trip to Toronto where they saw Rodriguez and joined the Toronto walk for ALS, while I saw Jack Johnson in Ottawa. We spent great quality time together and enjoyed every moment. Check out pics from the Skinner's time in Canada on the Gallery page.
There have been many anniversaries lately, and with that many ups and downs. September 19th was the 4th anniversary of my ALS diagnosis. Happy to still be alive, but sad as I don't want to live in paralysis. Happy I'm not there yet. Sad at what I've lost thus far. Happy that I am not alone. Sad at the loss of a future. Proud of my past.
We celebrated mom's birthday with family and finally gave her a South African Braai!
September 29th was our 8th wedding anniversary, making it 14 years together! As you are all aware, I could not do this without Travis. He is the most loving, patient, and compassionate caregiver anyone could ever hope for. But no one wants their spouse to have to be a caregiver. Travis lives with a sense of humour, an incredible work ethic and an endearing personality. As with others living with ALS, it is difficult to not feel like a burden to your person. I feel as though I no longer contribute to the household, and I cry, I cry a lot. But Travis never makes me feel like a burden. He makes me feel like his wife, and appreciates every day I stay alive for him.
October 4th was my brother Don's birthday. Taken too soon, we miss him everyday.
We celebrated Thanksgiving at Al & Jeannie's with their lovely family and again feel so grateful about the people we are surrounded by.
As our busyness slows down with the fall weather, I now have more time to spend with friends, and to plan for future travel. Though travelling has become more difficult, I'm not ready to give up on it yet!