Mental Escapes

Dear Friends & Family,

The condo would be located in a high rise building somewhere within 30 minutes of my current home. Floor to ceiling windows are a must along with a view of the city lights at night. The condo would be furnished with contemporary fixtures and clean lines. The walls would be dark and have interesting art hanging on them. There would be no family photos. The bar would be stocked with fine wine and the refrigerator empty except for bottled water and gourmet cheese. The bedroom would be a haven with a soft cozy bed and dark curtains on a timer that would let you fall asleep to the city lights then close automatically in the early morning to prevent the morning from ever coming. No one in the building would know me except for the doorman who would greet me with a smile as he opened the door. Friends would be invited, but somehow would be brought in secrecy, I don’t want anyone to know this place. It is my private sanctuary, a place I could escape the pain of the loss of my husband.

The thoughts of “my condo” filled my head for many months after Curt was diagnosed. I thought about it daily, decorated it in my head, and planned how I would escape my regular daily routine and spend a few hours or a few days there. I would read, write and sleep; all the things that I miss in the present. I felt guilty for all that was going on inside my head with my fantasy condo, but knew that mental escapes must be normal when facing what I am currently facing.

Once the condo was finished in my head, I moved on to holiday plans. Curt has always been our family’s Christmas cheerleader. He gets the decorations ready, sets the date to get the tree, puts the lights up, plays the Christmas cds, and pretty much spreads the cheer. What will the holidays be without him and all our family traditions? My mind went to work and decided for the first year or two, escaping our house and all that is familiar would be the easiest way to handle the holidays without Curt. Ever since Corbin saw a travel poster for Fiji in the AAA office, he has been wanting to go there. Maybe Christmas in Fiji would be a way to skirt out on the sadness that would be sure to fill our holidays if we were to remain home. Once again, I felt guilty for escaping the here and now with Curt to plan for a future without him. Shouldn’t my mind be focused on today and the time we have left together?

Still, my mind wanders. I look ahead to spending more time with each of the kids. Right now, my focus and energy is on Curt, he needs it most. That doesn’t leave much for the kids. I will be careful to not invade their lives or expect them to spend time with me. However, I will be more available for pedicures and workouts with Clarissa, shopping and exploring with Cayden, and walks on the beach or bike rides with Corbin. I will listen more intently and be more focused, I will encourage and support with more energy. Once again, I feel guilty, why I can’t I do this now? Why does it have to be after Curt is gone? Why do I feel so drained and unable to move?

At first I didn’t tell Curt about my mental escapes because I felt guilty. Once I told him and he assured me they were normal thoughts we began to plan together. We are currently planning to remodel our kitchen once he is gone. The cabinets and appliances are getting kind of beat up from his wheelchair and equipment. We talk a lot about styles, layout and how the kitchen will be used. He is totally supportive and has great ideas. We also talk about relationships, financial decisions, his memorial and other things that will happen when he is gone. It is a way for us to connect today while preparing for the future. It is also a mental escape from the horrible reality of the day to day struggles of this disease.

We had a great time in Oregon. My parents worked hard to have everything prepared and accessible for Curt. We stayed in the log cabin next to their property and were super comfy and cozy. We went to the movies, shopped for school clothes, dined at nice restaurants and enjoyed being together with my parents. Clarissa and my mom worked on a puzzle while Cayden and Corbin shopped for hatchets and knives with my dad. Although we were physically unable to take advantage of all the activities available in Oregon, it was a great change of scenery and good to get away as a family.

As always, thank you for praying for our family. We appreciate your love and support. We love your emails, cards and etc.!

Cindy, Curt, Clarissa, Cayden & Curt

Taco Tuesday

Dinner at the Tilted Kilt

Ready to hit the road for Oregon in the Cherry Bomb soon to be known as the Mini Can!

Dinner with Cousin Alyson, Jeanno, Erik, Dominic, Ethan, Aunt Arlene, John, and our family
 in Sacramento on our way to Oregon.
Puzzle Time!

What a view!

Curt sunning by the river!

Just relaxing!

Clarissa and Papa ready for a ride!

Our cozy cabin for the week! Thanks Steve!

It's good to be together!

Time to leave Oregon.

Back at home tonight with Larry and Debbie and Mark and a little wine!

Running - Part 3 (Same Title, Different Author)

August 2009 - Alyson, Curt, and Cindy
 We are in Oregon, so our cousin Alyson wrote the update this week...thank you, and here's from Alyson:

I am a runner. Not the best runner, not the worst, but a runner nonetheless. I never wanted to become a runner, in fact I spent most of my life trying to avoid it at all costs. My old motto used to be “I only run if someone is chasing me”. This is a little story about the healing power of running and the friendships and connections we make.

I grew up with a mom who was (and still is) a very accomplished runner. My brother and I spent many summers running in the sprinklers on the college lawn where my mom trained or playing in the sand pit designed for the long jumpers. My dad ran a little, most likely to be close to my mom, whom he once described as the most beautiful woman he’d ever seen, the only one who left him completely speechless. He was never a true athlete however, nothing like my mom. My mom, at age 67, can still beat me at a 5k with ease. I take great pride at telling everyone that she is the fittest person I know and who can easily kick my butt. I look back on these days fondly and I’m thankful to have had such an early introduction into fitness as a lifestyle.

As parents often do, my mom had hopes that I’d share her love of running and signed me up for a running club when I was around seven called the Gazelles. The team was coached by a very tall, dark skinned and leathery, soft spoken man named Gil. Gil was an amazing coach, kind and supportive but regardless of those facts, I hated every moment of running and wanted to quit with every single step. I recall throwing up before competitions, perhaps from nerves, but like all kids, I wanted so badly to please my parents. Once my parents let me quit the Gazelles, I vowed to never run again. I remained an athlete in childhood however, playing soccer, swimming competitively and riding horses. (I certainly never felt like a Gazelle or anything close to it, I feel much more like a giant wildebeest while running)

Something happened many years later around the time my sons were born and I started running with my mom. I began to love the time on the trails and as pain and breathlessness gave way to fitness, the runners high started to kick in and I was hooked. I started to sort through my problems on the trail, get clarity in my life, work it all out. I was finally glad to understand and share the joy of running with my mom, twenty years later.

I considered myself a casual runner, more like a jogger actually. I showed up at a running store one year to sign up for a Thanksgiving day race in support of a local food bank. I asked the young and lean kid working at the store if I should do the 5 or 10k. He asked what else I did for fitness and when I said I played soccer he said “oh, do the 10k, soccer players are great runners”. I went to the race that day and met and ran with a total stranger who said “10ks are a good start but you should really run a half marathon”. I signed up for the half marathon and told my mom who in turn said “honey, if you are going to train, just run a full marathon”. Before I knew it, I found myself signed up for a marathon, a goal I had NEVER considered for myself. Some people have a goal of completing a marathon on their bucket list. I had always thought it sounded like a TERRIBLE idea.

I trained for the marathon and raised money for the Stroke Association, with the funds going toward Stroke research. At the outset, I didn’t really understand the emotional commitment I was making. I knew training would be tough and the miles would be long. I knew I’d face injuries, terrible bowel issues and maybe even some rattlesnakes along the way. What I didn’t realize was that I’d also gain some amazing friends, and that the day of the race would be one of complete emotional joy.

I ran my marathon in Kona on the highway in June, with nearly unbearable heat and humidity. Just as I was really starting to struggle around mile 18, I started to talk to the man next to me who had been running silently. It turned out that he had survived three strokes and was out there running a marathon (and passing me). During our training runs our coaches had taught us a mantra to help us push through. The mantra was “I can, I will, I’m able”. The meaning of “I’m able” had been lost on me up to that point. Having always been “able”, I had taken this for granted, like many of us do. Meeting this incredible man at my lowest point in the race had transformed my perspective on illness and strength. Curt’s illness drove this home again and when I run now, I think about how fortunate I am to just “be able”.

For the past two years, my mom and friends of mine have run a local race for ALS in Curt’s honor in January. It always seems to fall on the coldest day of the month but it is great to see all of the family and friends of loved ones who have been struck with ALS out in the morning together, braving weather in honor of those they love, strangers, tied together for a common goal. Thinking of Curt helps me get through the race, particularly this past year when I was very sick. I reminded myself every time I wanted to quit that if Curt can deal with ALS, I can certainly run a few miles with a bad cold.

There are certain moments in all of our lives that leave a mark. When my father died unexpectedly in my early twenties, I was lost for many years. Running helped me find my way. I ran and ran until I found myself a little less lost. The moment I received Cindy’s email announcing Curt’s illness was another one of those marks for me. I have been coping with it the best way I know, putting one foot in front of another on the trail, hoping I can run the sadness out of my body, and when that fails, at least make the load light enough to carry.

The support of my running friends has been crucial during this time. One of my friends has a t-shirt that says “Running, cheaper than therapy” and it is so true. Every weekend my friends ask about Curt while we’re running. Some follow Cindy’s blog (and are amazed) and some ask me for updates. In between pants and groans, I tell my friends how things are going. They are all thinking of our family in their own ways, they tell me what they have learned from the Ziemke family, how their journey has changed their lives.

I am going to borrow an excerpt from a book by Kristin Armstrong to discuss friendship and running:
“Since our first mile together, whatever hill we have faced we have climbed together. We train each other in ordinary times, and we surround one another when a crisis hits. We share humor like a cold germ…we have seen each other’s strengths and weaknesses, and we know when to push and when to protect. When something needs to be said, we have earned the right to say it and have built the courage to hear it. When the ache of disappointment or loss is greater than words, we run quietly side by side and wait for God.” The last sentence perfectly describes how I feel about Curt.

Although Curt doesn’t realize it, (and might not like it since he’s more of a motor cross sort of guy), he’s a runner now too. I carry Curt with me on the trails, thinking of him, praying for him and taking joy in a physical act, realizing now after watching him suffer and become immobile that the physical ability to run is a gift unto itself. It’s on the deep trail, out in nature, in and out of the cool and dark forest, along the lake’s sandy shoreline that I think most of Curt. I like to think that I am running for him. Every 7:30 am on Saturdays, he’s out there too (on my mind), dragging butt up the hills, swearing quietly, and enjoying life’s beauty.

For Curt- I carry your heart with me, I carry it in my heart (E.E. Cummings)



The Black Cloud

Dear Friends & Family,

We came home Tuesday the 5th from a great 4th of July weekend at Lake Nacimiento when the cloud began to form. We didn't see it coming. The weekend included great friends and great memories. We boated, zip lined, indulged in hamburgers and hot dogs and relaxed. I intended to write an update Tuesday night but we got home pretty late and there was a lot of unpacking and mail sorting to do. Anyway, Wednesday night when I was helping Curt roll over in bed, his ribs kind of popped and he spent the rest of the night in excruciating pain; neither of us slept. The next morning Clarissa & I could not get him out of bed because he was in so much pain. We called the hospice nurse and she rushed right over. We gave him some muscle relaxants and anxiety medications and were able to get him into his wheelchair. This was the beginning of the black cloud. The doctor called in some heavy pain medications for Curt's ribs which caused him to spend most of Thursday and Friday sleeping in the recliner. He was feeling better by Friday night just very tired. Saturday he woke around 11:30 and there it was.....the big cloud that had been looming for the last few days. It was resting on both of our shoulders. We were both extremely sad and spent most of the day crying. It seemed as though death was in the room with us. He asked why he has been sleeping so much and if he was dying. It was hard for me to assure him that it was probably just the medications making him sleepy, because, I felt like he was dying also. The thought of Curt gone and me alone was more vivid than ever and I couldn't keep from crying or gain control of my emotions. I don't know for sure what his specific thoughts were but I know partly he feels like a burden and maybe it is time for him to "check out". We spent the afternoon crying together and also separately in different rooms. By evening I knew we had to break this crying cycle and maybe getting out of the house would help.

We drove to Torrance and walked along the Esplanade overlooking the beach. As we walked we would hear bits of people's conversations, kids excited about the sea shells they had collected, a young couple pushing a newborn in a stroller, tourists with accents speaking excitedly. The more we walked the sadder I got. Everyone there had hope, they all have futures, they are making plans and creating memories.  All we have is what.... a couple of months.... a year at best. We stopped walking and sat on the wall and stared out at the ocean. The sky was overcast and the sun was barely visible behind the heavy clouds. But, way out on the horizon the sun was shining. It was bright and gorgeous right out there beyond the clouds and overcast that we were surrounded by. Curt & I spent a long time looking at the horizon. I prayed for that brightness to break through the dark cloud and surround us. I longed for the warmth of the sun. I turned to Curt and told him that he is not a burden. I will do whatever it takes to keep him here and happy for as long as I can. I will continue to find ways to make his life easier and his days as bright as can be. We cried and hugged and walked back to the car knowing that we can do this together.

Well.....actually together with friends and family. We realized we can't do this alone. What this week taught us (or reminded us) is that we need to be busy and to surround ourselves with friends. Friends help shoulder the weight of the black cloud. Sensing our sadness, our wonderful neighbors, Mark & Kelli planned a bbq Sunday night. It was so nice to get out, to laugh and to forget about our sad week. That jump started what has been a great week so far. We have plans each night this week and it is great to have things to look forward to. We are leaving Saturday for Oregon to see my parents who are there for the summer and Corbin who has been there since June 28th. We miss him so much, but he is having a blast!

I haven't said much specifically about Curt's health lately, so here is an update. He is 100% dependant on others. He cannot feed himself, hold a cup, brush his teeth, scratch an itch or step into the shower. Luckily we have an outdoor shower which he can wheel right up to and hold onto the safety bar. He loves his showers and showering outdoors is right up his alley! As of this week he can not walk a few steps to the toilet so he has to use a commode chair. He can not stand up from his wheelchair without assistance. His speech is still slow and sometimes hard to understand but at least he can still communicate at this point. I am no longer comfortable leaving him alone for even a minute. He says his arms feel like lead so it has been difficult for him to drive his power chair. Because of this weakness he has been a little reckless, running into things, so I worry about him crashing into something or the pool. Cayden was able to adjust the control which has helped a bit. Above all the things he can't do, I am thankful that he can still smile. I love his smile and love to see him happy. He still has all his facial expressions and is as handsome as ever.

Today, a film crew from The Muscular Dystrophy Association came to our house to film Curt for the MDA Telethon set to air September 4th. They interviewed us separately and then filmed footage of us and the kids (less Corbin) doing random things. We are not the kind of people who like to be in the spotlight, but we want to support the MDA who has been incredibly helpful to our family and who will hopefully find a cure for this disease someday. I have included a glimpse of the "shoot" today through photos. You'll have to wait until September 4th to see the video!

Once again we want to thank you all for your thoughts and prayers. Thank you for helping to keep the black cloud lifted from our shoulders. Thank you for praying that we can make the most of each day and remain positive. We love you all.

Cindy, Curt, Clarissa, Cayden & Corbin

Corbin left for Oregon 2 weeks ago. My parents will remain there until September.
We miss them when they are gone! We will be joining them next week!

Thank you Mark & Kelli for a great time!
Lisa, Debbie, Larry, Kelli & Mark

Curt is being prepped for his MDA interview.

Curt and Dennis, the producer

My turn....Yikes!!!. .

Clarissa & Curt looking at scrapbooks while being filmed.

The sunshine made filming a little challenging.

I love how we both have the same look and expression.

The wanted some "lovey dovey" scenes!  OK with me!