Tuesday, November 26, 2013

My Thankfuls

I got in the car this morning and thought about Tom. Tears started to well up. The emotional pain I went through when Tom died is resurfacing as I think about what lies ahead for a Facebook friend who lost her husband recently. We share the same birthday and his death will forever be linked to it and to Thanksgiving for her. Once again I am reminded how quickly life can change. Change being the only constant in life.

My husband has been posting daily "what I am thankful fors" on Facebook for the entire month. He is not thinking of them ahead of time. He is waiting to be inspired by something that has occurred that day. Many of them have centered around me. For that I am thankful. He doesn't live in my body and can't truly experience my illnesses, but they certainly impact him and I worry from time to time that it will drive him away. That I bring him happiness is still a concept that amazes me. That I found love again also amazes me. That I am able to be happy at all amazes me. Learn from change. Adapt to the changes. 

I've lost physical abilities and I've lost people that I can never get back, but I have gained so much more in wisdom, gained the ability to appreciate what I have left and what I can still do. Living is very much worth the price I have paid and continue to pay to remain here. I make a difference by being here. We all do. We impact family members, friends even strangers. Hopefully for the betterment of us all. There is power in this. Use it wisely. 

I dropped my hearing aid, for the good ear of course, on the stone floor one cold morning last week and parts of it shattered. I managed to get an appointment at the ENT doctor's office yesterday and asked to get my hearing checked at the same time. They were completely swamped and I spent the better part of the day there. Though I had other things I planned to get done, it wasn't worth getting angry over. By the profuseness of the apologies and being told that no one had even taken a lunch break, I think other patients weren't so patient. Initially, they thought they would be able to fix the hearing aid while I waited, so after the hearing test I was put in an exam room rather than the waiting room. The door was open and the Physician's Assistant came in and sat down and introduced himself. Thinking he had some information to share, I waited expectantly. He finally said, "I just needed to take a break." I laughed and replied, "Just needed to get out of the main flow, huh?" "Yeah…so where are you from?" At that moment a favorite quote from the television show "House" popped into my head, "It's what life is. It's a series of rooms and who we get stuck in those rooms with adds up to what our lives are." I decided to take it literally. What ensued was an amusing conversation about the difference between living in Dallas versus Ft. Worth, other states he had lived in and later that his daughter was an artist living in Oklahoma City. I also learned that the power was out at their other office due to the sleet and they were funneling people here. That's why it was so crazy. They were trying to accommodate everyone they could. I hope our conversation was the break he needed. Before I left, I was talking with the audiologist and the P.A. came in, pointed at me and said, "she's really nice." Well, at the very least, I didn't make anything worse for them and I saved myself the energy it would take to get angry at the long wait. Let go of what you can't control.

I'm not sure where I had intended to go with this blog entry. It turned into a stream of consciousness kinda thing. Ultimately I guess it's about what I'm thankful for (it is Thanksgiving after all)…my husband who I appreciate dearly, my painting and writing abilities that allow me to share pieces of myself with the rest of the world, that I am still able to work and to have a job that makes use of my creative talents, my pets that bring laughter into my life, the friends and family that have been so supportive, medical technological advances that caught my breast cancer early enough to consider me cured and of course all the plasma donors who I truly couldn't live without. I am warm, safe and happy and that is so much more than many people have. It's not worth lamenting what is gone. No regrets. 

Happy Thanksgiving!

Sunday, November 10, 2013

At a Loss for Words

"Sunlit Lake Fog" • 6"x6" • Acrylic on Masonite

"Sparrow, get off of those clean pillows!"
I was in the laundry room which has shelving for clean linens, bulk item storage and a place to hang clothes temporarily as they come out of the drier–except it's become more of a second closet for me. My clothes just don't seem to make it to the bedroom.

Ed walked in and heard me chastising our cat. "Uh sweetheart, what pillows? I don't see any pillows." He's teasing me. They were in fact several stacks of towels. In my head I said towels, but that's not what came out of my mouth. I wonder if I'm losing my mind. I had already forgotten my hearing aids twice. I never forget them. I have to reread anything I write 3 or 4 times to catch mistakes. Such as typing 'booth' instead of 'books.' On multiple occasions, instead of speaking the word that I have in my head, I say one that sounds very similar, but likely does not have the same meaning. Better yet, I can't find the word I want at all until 5 minutes later when it suddenly pops into my head at which point I speak it aloud completely out of context.

So when I saw the Physician's Assistant for my oncologist on Tuesday before my infusion and he asked how I was, the first words out of my mouth were, "I'm okay, but Tamoxifen is making me stupid…(long pause)…and forgetful." He laughed and asked why I thought that. So I added "As an example, I forgot my hearing aids, so I may have trouble understanding you today." 

I had done a little research already of course and ran across a few forums where other breast cancer patients were discussing a similar experience with Tamoxifen. I never gave birth to children, so I don't have any personal experience with the "Mommy Brain" that is blamed on hormone fluctuations post birth, but I figured if this drug's job is to block hormones, then I'm likely finding myself in a similar predicament. I also keep calling our new cat she instead of he. Frankly, I doubt he cares and is just happy to be off the mean streets of Granbury and in a loving home with regular meals, but my mistake seems to bother Ed a bit, since he corrects me every time. Then I think of the TV show "The Closer." If you were a fan, you'll know why.

Josh, the P.A., is nodding his head and has a slight bemused smile on his face as he's listening to me detail my answer to the "why I think that" question. I'm trying to decide if I should be annoyed that he's finding this amusing, but determine that it actually is, a little. Until he calls me, M'aam, which does annoy me because in my head I'm still in my mid-20s. Then he confirms it. "Yeah, it's likely the Tamoxifen." The Tamoxifen that I'm supposed to take for the next 5 years! It's only been a month and I already feel like I'm going insane. FIVE YEARS…or until I go into menopause naturally. "But my job is to be creative on demand. That's a little hard to do when one's brain is in apparent hormone withdrawal," I implored. "And my obsessively detail oriented nature is one of my strongest assets." There are other drugs, but they are usually given to post menopausal women he tells me and suggests I speak with the oncologist at my next appointment with her. He actually stated another oncologist's name and I said that's not right and my brain decided for dramatic effect to completely lose the name of my actual oncologist. 

So until this gets sorted out please avoid going grammar nazi on me. Forgive me if I put my glasses in the refrigerator or if I stop in mid-sentence at a complete loss for words. If I call towels pillows and pillows towels, or if I forget something I'm supposed to do for you, a gentle reminder would be appreciated. Now I'm going to go reacquaint myself with writing lists and the wonder of post-it-notes.

Monday, October 21, 2013

Patience…how to teach your dog to shake in 10 minutes.

The mastectomy didn't just remove tissue, it has my energy level pegged firmly on empty. The lack of energy is making me reevaluate the importance of things that need to be done. The frequency of vacuuming the house or mopping the floors has definitely declined. Dogs need to be brushed and bathed and it hasn't happened. Fortunately, Ed handles all the grocery shopping and cooking. I'd likely be starving otherwise. Some things I have no choice in confronting. Going back to the day job full-time. Painting to bring in extra money to pay unexpected medical bills. My continuing antibody infusions, autoimmune issues and ongoing breast reconstruction demand time and attention as well. Sometimes I want to just curl up and sleep for 24 hours straight. I'm still working to find an acceptable balance; figuring out what I can and can't get done. It's a little frustrating. I was already living at a lower energy level than the average person and this additional hit has knocked me to the ground.

"Two of a Kind"
4"x4" Acrylic on Masonite • Unframed • $50
The pets don't understand why I haven't been paying much attention to them lately. I sit down and I'm completely covered with cats and at least one dog within seconds wanting love. I make an effort to talk to and pet any of them I see throughout the day, but I don't have the energy to play much and my patience wears thin at times and of course I feel guilty about all of it and I don't have the option of explaining it to them.

What helps the most with chores is keeping up with them before they become overwhelming. Instead of letting dishes pile up, rinse them and put in the washer as you use them. Sweep one room a day instead of all at once. Recently, I applied this same logic to teaching Archie dog to shake. Just do a little bit at a time. He is smart and wants to please me and has quite a vocabulary that he understands already, but not in the way of 'tricks.' He learned sit and lay, but these were more for our benefit in getting him under control. He was a bit wild having been a stray and didn't understand that there were rules to be followed with us and with the other animals. He has learned a great deal, but I decided I wanted him to learn shake. The rest of the dogs already knew how.

I don't like to teach my guys using food reward unless they just refuse to respond to praise alone. In Archie's case, he gets entirely too excited by food to concentrate on anything else anyway. I had to use Cheerios initially to teach him to sit, just to get him focused on me, but moved to praise quickly so that he would follow commands without expecting to get a food reward every time. This method may take longer with some animals but I believe having a dog that trusts and wants to please me is better than a dog who just wants the food.

If you have furry pets, you know it's impossible to go to the bathroom by yourself. I decided to use these little snippets of time to teach Archie. The first few lessons went like this…I would pick up his paw and say 'shake.' His response would be to immediately fall to the ground on his back in a submissive position. End of lesson. I wanted him to figure out what I wanted for himself. To think it through, so I never said 'no' or forced him to get up and try again. These lessons lasted less than 5 seconds total. 

We went through this for a couple weeks whenever he followed me into the bathroom. He eventually stopped falling down and would instead try to gnaw on my hand as I held his paw and said shake. I'd let go each time. End of lesson. Another couple weeks of this. Again, he suddenly stopped putting my hand in his mouth and instead just stood there calmly as I lifted his paw and said the command. I let this continue for about a week. 

Finally, I stuck my hand out without touching his paw and said 'shake.' He looked at my hand and then at my face intently for just a moment. I knew at that point he got it; before he even lifted his paw, you could see it in his eyes. They were smiling. He confidently and enthusiastically slapped his paw right into my hand. I praised him and we both went a little berserk with happiness. I had no idea if this would work. I had been much more conventional in training the other dogs. It was an experiment. I've continued to reinforce the shake to make sure he has it down. Yes, it took over a month for him to learn the behavior, but when you add up the actual time I spent teaching him, it couldn't have been more than 10 minutes total. You can accomplish a lot with a little bit of patience. Occasionally I forget and just need a reminder.

Monday, September 9, 2013

...and so it begins

'Twas the night before Christmas…not even remotely. Though, I will be up before dawn in nervous anticipation like a small child and I do get a couple presents tomorrow. The first is to have the waiting over and the second is to get the cancer out of my body. I suppose that's close enough.

I'm trying to decide how I feel. I've bounced up and down between calm acceptance and fear over the past few days. Sometimes multiple times a day. My fear is centered not around the actual mastectomy, but the general anesthesia, we don't always get along. I'll be having a long discussion with the anesthesiologist prior to surgery and hoping they can mitigate the negative effects it has on me. Lack of control, I'm sure, is playing a huge part in my emotional swings. It's not easy for me to let go and hope for the best without my hands on the reins. Right now I'm back to calm acceptance. I'm just ready for it to be over.

Earlier today I went to the hospital for the lymphoscintigraphy which consisted of shots of a radioactive tracer that felt like wasp stings then imaging to track the tracer to the first lymph node. This is what they will remove and test to confirm that the cancer has not spread. I had a special 'navigator' with me, a breast cancer survivor herself, to hold my hand during the procedure and and who will also see me before the actual surgery. 

"Autumn Glow" -Waving grasses and colors that calm me-
This is going to sound wrong, but when I checked my messages on Friday and had a call from one of the other support navigators asking me to call back, I actually got angry. Let me try to explain. I am not that worried about the whole breast cancer diagnosis (though the thought of surgery itself does scare me). At least with cancer you have a firm diagnosis and course of action, and most importantly, a possibility of a cure. Especially if caught early. There are distinct steps to take. There is an end to treatment. I have received informational books (more like novels in some cases), offers of local support groups and now a special support navigator. 

All I could think was where was all this support when I was searching for what was wrong with me years ago, when I was lying in the hospital often alone, dying. Even after. I had to seek out others like me. Scavenge for information. No one handed me books on how to deal with my diagnosis or or even a clue where to search for answers. Thank you internet. I joked with my infusion center 'navigator' when she handed me the first 'book' I was to receive that I've been going there for treatment for years and apparently it took getting cancer before I mattered. I WAS joking at the time, but with each offer of help, it's rubbed it in a bit more. I am truly thankful that breast cancer gets the support from the medical community that it does, but I still identify with the Zebra herd–the misunderstood, the chronic, the incurable. People relate to breast cancer. They know someone who is a survivor. People don't relate to hypogammaglobulemia or the fact that it doesn't get better. We are also survivors. Every single day for the rest of our lives.

So tomorrow morning will come. I will be at the hospital before day break and this new medical journey will begin in conjunction with the conditions that already exist and I will continue to survive. That seems to be my superpower. Survival. Can't wait to see what battle the Fates have lined up next.

Wednesday, August 21, 2013

Convertible Therapy

"Old Friends"
Water-Soluble Oils on Board
10.5" x 8" SOLD
I can imagine that oncoming traffic either laughed or thought I was insane when I suddenly threw both my hands up into the air above the windshield header. It was still a little hot, but I needed a top down day. I've owned convertibles nearly continuously from the age of 17. The love affair started with a bright blue MGB, moved to a Triumph TR-6 followed by a string of Mazda Miatas. The Miata that never left is a bright blue race package '94 model with factory white racing stripes and roll bar. I call her Shelbie. Like me, she is aging and not always gracefully. Our bodies getting used up, breaking down, turning against us. Earlier this year I sent her to a Miata specialty shop in Dallas for a heart transplant…an attempt to prolong our days together. Her engine was rebuilt and it gave her new life securing our relationship for at least a little longer. I wasn't about to give up on her.

Early in our time together we were driving down the Expressway when a car pulled up alongside. I heard a beautiful male British voice say, "Excuse me." I turned to look. A handsome young man about my own age very politely inquired (and perhaps everything just sounds more polite in a British accent), "Would you mind showing us your tits. It doesn't matter that they are small." I sped off. Not quick-witted enough to formulate a reply. We were redeemed a few year later. I was loading groceries when I saw a man hang himself out the passenger window (up to his waist), of a passing car, spread his arms wide and call out to me, "Will you marry me?" I laughed out loud. Shelbie always turned heads. 

Nineteen years have passed and neither one of us gets quite the attention we used to. I don't like to think that I am vain. I've never worn make-up, keep my hair quite long, but simple, dress nice, but not trendy, but to be honest, I guess I am to a degree. I've been dealt another blow. Breast cancer. Now I'm facing another surgery; a full mastectomy of the right side followed by radiation while still dealing with my immune deficiency and autoimmune conditions. The thought of losing something that is in no way critical to the functionality of my body is tougher to swallow than I thought. Even if they are small, I've gotten quite used to the way they look on my body. After a few days of sulking, "why me's" and "dammit, don't I get to be happy EVER in this life," I turned to my husband and said I had made a decision. "I refuse to have breast cancer." He responded with, "Good. I agree. Let's go with that." Then I burst out laughing. That wasn't quite the response I expected, but apparently was the one I needed. It was the beginning of acceptance.

I was driving home from work. Radio playing "Roam" by the B-52s. Top down. I realized I wasn't thinking about the cancer. I felt at peace. Felt happy. I was still here and determined to remain no matter how many times my body tries to kill me. I'm not giving up on me. This very moment is mine. My hands flew into the air.

Wednesday, July 31, 2013

Why You Should Mammogram Your Peaches

Unfortunately, I didn't have any paintings of peaches.
"Between the Lines" seemed the best alternate.
5"x7" Acrylic on Masonite
Thursday night I made peach cobbler. 

It may not sound like an achievement worthy of a blog post, but that's kinda the point. I love peaches and thankfully they happen to be one of two fruits (excluding tomatoes) that don't try to kill me when I eat them. In addition, I have Celiac disease, am lactose intolerant and soy allergic and haven't had peach cobbler in years because of it. I was determined to make a version that I not only 'could' eat, but would 'want' to eat. Convinced this was impossible, I hadn't made a single attempt before now. I guess having the hope of someday eating a good cobbler was better than facing possible failure and crushing the hope altogether. Watching co-workers consume copious quantities of peach cobbler that seemed to be breeding on its own at the office (it's peach harvest time in Texas), I became determine not to miss out. 

In the meantime, my brain wandered back to a new medical issue. I was waiting on the results of a biopsy and trying not to worry. Something that I'm very good at…worrying. I'd been having testing done on my heart to make sure that the tachycardia was still the same benign issue. I'd worn a Holter monitor and had a stress test done. I'd also scheduled a mammogram telling them they would want to do an ultrasound as well, but noooooo. When I got there we only did the screening mammogram and the radiologist couldn't get to it until later and they would let me know if I needed to come back. Of course a few days later I got a call back, but was unable to schedule it right away since I was still setting up heart-related appointments at the time.

Eventually, my brain went back to the task at hand. Pretty quickly I found a recipe for the filling that had none of the offending ingredients and I'd recently taken to substituting gluten-free shortbread cookie dough for any recipe that called for a crust. I cocked my head and scrunched up my nose; this seemed far too easy. I mixed up the filling. The aroma was so wonderful I grabbed the bowl, ran into the living room and shoved it under my husband's nose wanting confirmation that this was pure heaven and he agreed…and he's not even a peach fan. I poured it into a pie pan and covered the top with the shortbread dough and plopped it in the oven.

Both the Holter monitor and the stress test showed nothing new on the heart front. This was good news. I had also finally gotten to the second mammogram and ultrasound. This time the radiologist looked at the digital files while I was still there. Unfortunately, something was not right. New calcifications in really dense tissue were present. It likely wasn't anything to worry about, I was told, but to be safe, she strongly recommended it be biopsied. She laid out the case for biopsy carefully, not realizing she had me from the first sentence and the word 'suspicious' specifically. I was scheduled for a few days later. I was not too panicked at this point. A little alarmed, though, understandably.

The timer went off and my parrot, Toby, pointed it out in his personal nonsense language though I'm sure it makes sense to him. He always talks when it goes off. I checked the cobbler. It was bubbling over the sides and parts of the crust were not yet done. I was worried about burning the filling so I removed the pan and placed it on the stove to cool. It still smelled incredible. I let it cool for as long as I could stand. I grabbed a bowl and spoon and a generous helping of cobbler. I sat down in my chair anticipating greatness, but also little afraid that the smell was deceiving me. Would this be pure joy or soul-crushing disappointment? I know. It's just cobbler, but at that very moment it seemed to matter a lot more to me than maybe it should have.

Nervousness about the biopsy procedure was setting in. I hadn't had this particular test before. I have had a bone marrow biopsy and this sounded similar and was most likely the source of my anxiety. This is not a test that affords any kind of dignity. Not that I have any left. When you've been poked, prodded and handled enough on just about every part of your body you get to a point where you think you could just strip in front of anyone and not think twice about it. At least I have. 

The appointment started with an obviously rehearsed speech from a younger nurse on what to expect during the procedure and afterward. I finally had to stop her before I burst out laughing. Her inflection on specific phrases and exaggerated facial expressions made me think of bad overacting in a middle school play and laughing would likely be seen and an odd reaction at best and offensive at worst. She was compelled to finish her speech, though and I just bit my tongue. Next, the procedure room…if I imagine myself standing back and watching, the scene would be reminiscent of some medieval torture chamber. Let me paint a picture for you and let's use 'peach' as a euphemism for the offending right breast which is the source of the suspiciousness. You walk in to a small room and immediately before you is an exam table with a hole in the middle of it. You are asked to lay on your stomach and place the peach through the hole. You didn't see that coming did you? The procedure is done from beneath you. You see nothing. Padding has been placed around part of the hole to make things more comfortable…uh huh… Additional padding is placed under your head and feet to help as well…not so much. Suddenly you feel the peach being pulled and seemingly randomly moved around for an eternity. Finally, it is relayed to you that the peach isn't fitting far enough down the hole for compression. They compress the peach for X-rays and to hold it firmly in position for the actual procedure. Really? The peach may be on the lower end of average, but my God, what do they do with smaller ones. 

All padding is removed. You are asked to bend the right arm out at a weird angle and roll slightly onto your right side rather than stomach and bend your left leg up. I didn't know I needed to practice yoga for this. On second thought, Twister may have been better preparation. The hope was to get the peach lower. More tugging, maneuvering and compressing. Finally, we are in position. I am told to NOT MOVE again, at all, through the rest of the procedure. Do I need to remind you of the current contorted nature of my body and that I have a bad disc in my neck? They X-ray the peach before beginning to find the exact spot to place the hollow biopsy needle. Lidocaine time. The lidocaine injections were the worst part of the entire procedure. It hurt like hell, rather ironic for a substance whose purpose is to mitigate pain, and I had to not move, at all. I was being constantly reminded of this or they would have to retarget the area for biopsy. I was facing a wall that was about 18 inches in front of me with a colorful abstract painting on it. I didn't like it, but tried to concentrate on figuring out the artistic technique to distract myself. A nurse would periodically pop up in front of it and attempt to be comforting. She was genuine, but I wasn't very receptive. I had tears running down my face and was shaking. I was afraid my shaking was going to be an issue, it was a form of 'moving' after all and asked for a moment to calm down. Denied! "The faster the better," said the doctor. Three stabs with the needle which felt odd, but didn't really hurt and it was over. They told Ed, who was waiting in the original exam room, that I did well. I told him I was giant wuss which was much more accurate and I was handed a coffee cup filled with jelly beans like child's lollipop for a shot as a parting gift…and I can't even eat them.

What I could eat was this cobbler. I stared at it a moment and dug in. It tasted EXACTLY like peach cobbler. I exclaimed, "this tastes exactly like peach cobbler!" with a big smile on my face. Ed cracked up. Then got serious for a moment. "When most people say it's the little things that matter, they don't really mean it, but you do. It makes me happy and at the same time I really feel it here" and he thumps his fist over his heart. I felt a big awwww in my heart at that sentiment. Maybe it was okay that the outcome of the peach cobbler experiment mattered so much to me. I really felt joy in its success. There can be so much pain, physical and emotional with any illness whether chronic or not. Finding the little joys in everyday life is what is going to make that life worth living.

I still had biopsy results hanging over my head. Would this be pure joy or soul-crushing disappointment? All the text above was written before I had results. The anxiety of not knowing very much real. I have them now and the answer, like most of life, is in shades of grey. Yes, I have breast cancer. A more unusual form known as tubular carcinoma. Guess I can't break away from being a zebra. In this case though, rare works in my favor. It's slow growing, considered less aggressive and by comparing to previous films that show no sign of it, we likely caught it very early. Is it still scary? Yes, of course, but I'm mostly okay with it. Just another hurdle to overcome. Keep moving forward I repeat to myself. Forward…

…and please remember, I am not a frou-frou, girly-girl and if you send me anything PINK, I shall hunt you down...

Tuesday, June 18, 2013

Life Lessons

In the past, I would have been sad or frustrated that I couldn't hear a good third of the dialog, but instead I found myself enjoying the play immensely. It helped that Shakespeare's "Taming of the Shrew" was familiar to me. I found myself concentrating on the actors' body movements and facial expressions. The 'choreography' you might say. My lack of hearing enabled me to see the play on another level that probably wouldn't have been quite so conscious otherwise. 

I was enjoying the company as well. My husband and I haven't spent enough time 'dating' lately. I've been consumed with solo show preparation, painting in general and a particularly bad autoimmune flare. I was reminded that I thoroughly enjoy his company and that spending quality time together is so important in keeping a relationship on track. So is an appreciation of the little things. Enjoying a good meal that he cooked and his sense of humor is more important than that he left the kitchen a mess. Not taking the things he does for granted. Actually saying thank you rather than just thinking it. I know he doesn't expect that, but I do appreciate him and he won't know if I don't tell him. Assume nothing.

I'm writing this while at the cancer infusion center and watching a couple in their 50's. She's the one in the chair hooked up to the IV. He hovers, extremely attentive. Trying to anticipate any need she may have. Trying to mitigate any discomfort. He can't stay still. I see concern on his face with a touch of fear perhaps. He loves her and being proactive helps hide the fear. It allows him to feel like he has some impact in a situation for which neither have much control. Disease puts much in perspective. 

Perspective gained through time and experience. I think the harsher the experience the more it shapes you, but how is up to you entirely. I've met people who turned bitter; who can't see past their own personal pain and fear, very much like Katherine in the beginning of the play. Stuck in quicksand and sinking so slowly that they don't recognize the danger. I feel sorry for them. You can lament what is lost to you whether it's opportunity, a person or your health, but clinging to anger is no way to experience life. Anger without resolution is a living death. At some point you have to realize that this life is not fair. Random, really crappy things happen. Some people are burdened more than others. You can look back and learn. You HAVE to look back to learn, but always move forward in the end. Hopefully you can recognize what holds true importance before you face the loss of it. The trick is to remember it when the danger has passed.

In the end, Katherine finds love and respect and so have I. It's good to remind myself periodically of its true place in my life and not let day-to-day issues diminish it. I am able to see the important things on a different level, because I know what it is like to have them ripped away. I've found my joy. May you find yours.


"From a Distance"
Sedona, Arizona
Acrylic on Board
11.25" x 8.875"

This seemed appropriate. Looking at something from afar gives you a different view of of it whether it's an object, landscape or aspects of your own life.

View more work at RebeccaZook.com


Tuesday, March 19, 2013

Road Blocks

Vacations mean different things to different people. Some crave pure relaxation, some excitement. I think Ed and I were looking for a combination and over the course of the week we also learned a bit more about ourselves.  

We just got back from the mountains of North Carolina. It was actually a delayed honeymoon (married in December). I rented us a cabin in the woods with a full kitchen since eating out is almost impossible for me due to food allergies, and overall, staying in a home is much more sanitary than a hotel room when you have a primary immune deficiency. Plus we are both introverts and this certainly catered to a need for exclusion. 

Photo of me Ed took at one of the many waterfalls we photographed.

My husband loves to hike and has many stories of previous adventures. I had stressed to him from the beginning of our relationship that due to lung damage from CVID and other issues caused by my various autoimmune diseases, I was limited in what I could do. In our day-to-day lives back in relatively flat Texas I get physically tired at times, but really, the diseases don't slow me down that much. In the mountains hiking uphill was another story completely. I was shocked at the difficulty I was having. Shocked at my inability to catch my breath and at times having to stop every few steps. Ten years ago I could have sprinted through the forest like a deer and not thought twice about the thinner air or steepness of the trail. I didn't realize the full extent of the damage done. I was emotionally crushed, but tried to fight back the feelings.  

Ed had his own issues to deal with. Our plans were thwarted at every turn. Rainy Monday, activities closed for the off-season and a landslide had taken out the only road that ran completely through the National Park. In addition we had the the scary, single-lane curvy road with sheer drops that we were told was open and instead ended in a locked gate and one road closure was blamed on "Sequestration." We are still laughing about that last one. Old friends have accused Ed of carefully planning every second when it came to activities and that one little hitch would throw him into chaos and he himself admits to reacting badly to sudden changes. Our entire trip was last minute changes. 

We had a long list of waterfalls in the surrounding area that we wanted to see. Ed was encouraging as I trudged up the steep trails and steps, but his words made me feel like a 5-year old. "You can do it!" and "We can go as slow as you need." What I shouldn't need is anyone to have to prod me along with words. I'd start to get annoyed, but I knew he was only trying to help. At one point Ed looked over at me and said, "You don't look tired. You look sad." I told him what I was feeling. I was sad. Sad for everything I'd lost. Discouraged. Angry. I wanted to just sit down in the middle of the trail and cry. My pride was the only thing preventing it, barely. 

But you know what? As torturous as it was at times, I never turned back. I never gave up. I reached the top of every waterfall we hiked to. I saw amazing beauty; half frozen streams, an owl, deer and wild turkeys. We took over 2,000 photos in the course of a week and some will end up as paintings. It didn't matter that it took me 10 times longer than it should have. I didn't give up and I'm very proud of that. Ed in turn learned that he is more adaptable than he thought. The last minute changes led us on adventures we would have otherwise missed and he had no problem making adjustments on the fly. Overall it was probably less stressful not having a firm plan. We did what we wanted when we wanted and didn't need to keep constant track of the time.  

We toned it down on our last full day there. I was only up for 2 small waterfall hikes, but I don't regret any of the pain and frustration. It's just made me more determined to increase my activity level. Road blocks, whether figurative or literal, don't have to be dead ends. We were both able to create detours to get around them and keep moving forward.