Priorities

"The Sweetest Rose" Acrylic on Watercolor Paper 11"x17"

My husband, Ed, called over to me from the back door. He was standing with it open excitedly pointing at the night sky. "You have to come look!" I was sitting at my drawing table, paints open, brush in hand, just about to put paint to paper. I had crashed early the night before and was looking forward to making progress on a particular painting since I had several deadlines looming. The excitement in his voice and the little boy look of wonderment on his face quickly dispelled any notion of claiming I was too busy. I wasn't disappointed. Directly overhead was a glowing full moon with a huge "moon bow" encircling it. The largest halo around the moon I had ever seen. He ran back in to get the camera and we spent the rest of the evening working with the photos and marveling at the wonder of the natural world. 

Was the floor covered in pet hair? Was there a pile of dirty dishes in the sink? Wet laundry in the machine? Did I have a ton of work to get done? Yes, to all of this and more, but there is something that Ed and I do exactly right. Something that makes our relationship a successful one. We realize the bulk of our lives are little moments strung together and not the momentous occasions that society spotlights. We recognize in those instants that we have a choice and it's an important one. Ed wanted to share that moon with me; that moment with me. That's an honor. Say "I'm busy" too many times and he'll likely stop asking. The choice is whether to make these moments a priority when they come along. Their very nature makes them unplanned and for two people like Ed and I who have a tendency to schedule every detail of our lives, it can be a challenge to let go of preconceived notions about what needs to be accomplished that day and enjoy the moment. Make your partner a priority not an accessory.

For those with chronic illness, this point gets driven home in a way that is neither comfortable, nor convenient, but it is a valuable lesson that everyone, sick or not, would be happier living by. No one has a perfect and balanced life. No one. I sometimes wonder if it's a base code written into our flawed human genes that leads us to sabotage our happiness. Always wanting more than we currently have. When you have actual flawed genes, your priorities change and reorder and not by choice. Your body ceases to function in a predictable manner making planning difficult and often making previous life goals unattainable. Does this mean you can't be happy? Can't be in a relationship? Not by a long shot.

Over and over I am saddened by the number of marriages/relationships that I see disintegrate because one person has a chronic illness. It's so easy to blame the healthy person for leaving. How could they be so cold and uncaring? What about the vows they took? Though some people just aren't cut out to deal with chronic illness, I believe it's rarely a one-sided issue. As a person who has multiple chronic conditions that impact me on a daily basis, it would be very easy to become entirely self-absorbed and descend into pity and depression. If you aren't the sick person, you don't get it. Trust me on this, you can't. You have no real frame of reference for the soul-crushing guilt we can feel for something that we have no control over and the bitterness of what it has stolen from us. The fear that some new tragedy is looming around the corner. At some point, you have to let it go. I am all for pushing our boundaries and striving for more, but some things are physically impossible now and I just have to accept it and move on. YOU have to be happy before you can even think about sharing your life with someone else. 

Why did you get married or why are you with a particular person? Really examine the reasons. Me, I fell in love with a whole person. I love his sense of humor, his intellect, his excitement of life, his caring, gentle nature, love of animals…I could go on. But what I have to remember is that he fell in love with who I am. This relationship goes both ways. When I'm happy, he's happy. When I hurt, he hurts. I have needs and limitations because of my illnesses, but he has needs too. I have to give in this relationship as much as he does even though I have days when it takes all my energy just to get out of bed. Our relationship has to be a priority otherwise, what's the point? I must be there for him, always. I don't get to hoard my pain and say, your problems don't matter because mine are more serious. That's just not fair. It's not all about me. I have to remain open and responsive to what he needs. When he hurts, I hurt. When he's happy. I'm happy.

Just in time for Valentine's...
A while back I was contacted by author Sophia Dembling who regularly writes for "Psychology Today" and asked if Ed and I would like to be interviewed for a book she was working on. We received a copy the other day and our first date has been forever immortalized in "Introverts in Love. The Quiet Way to Happily Ever After." We are honored and I truly love my husband with every fiber of my being. Thank you for being my love and my partner in life.

Musical Interlude

I picked up the recent copy of National Geographic that was on the coffee table and held it up to my husband. The cover had an image of a planet with "Is there anybody out there?" in large block letters accompanying it. I said, "Do you know what the next thing that popped into my mind was?" I got a puzzled stare. "Just nod if you can hear me. Is there anyone home?" He laughed. Okay, it was one word off the actual Pink Floyd lyrics, but my brain continually makes associations with things that I see, read or hear with song lyrics that then get stuck in my head for extended periods of time making my relationship with music…complicated. Freeing myself from one song often just means replacing it with another. The phenomena even follows me into my dreams. One particularly beautiful repeating dream where I am wandering through the most incredible museum in existence uses Moon River from Breakfast at Tiffany's as an integral element.

"Musical Interlude" Acrylic by Rebecca Zook

Mostly I like the way music affects my emotional state. I always awake from the museum dream bathed in tranquility and find myself humming Moon River throughout the rest of the day. One song can draw me out of a bout of self pity. Music can dissipate anger or in an instant bring back vivid recollections that only seemed long forgotten. Researchers theorize that melody helps embed memories. I know I can still 'sing' the preamble to the Constitution thanks to the Saturday morning School House Rock of my childhood. These properties are being used to help dementia patients. Even those who have ceased normal communication have been known to spontaneously sing or have music noticeably calm them. 

Unlike my sisters, I never learned to play an instrument though at one time I could pluck out simple tunes on a piano and guitar, but I always liked singing. I have vivid memories of sitting on my parent's bed listening to records of children's songs and trying to imitate the lilting notes of the voices I heard of the accomplished adults singing. Then I tried adding my own melodies to the existing ones, weaving them in and out of the base rhythms. Experimenting with sound just like I'd experiment with my paints. Building neurons in the process. I still do this on my long drive to and from work. Long ago I ceased caring what other drivers thought when they saw me belting out a song; soundless from the point of view of their self contained world, but making me wonder what the neighbors thought of me swinging in the backyard and singing at the top of my lungs when I was a child.

Music activates so many areas of the brain from auditory and motor to limbic (emotion regions). One study I read years ago disputed the myth that you needed to listen to classical to reap the benefits. Whether it was Bach or Def Leppard (and I like them both), the positive benefits of music relied most on your own personal preferences. Like food and sex, music also releases the pleasure inducing chemical dopamine into our system. Another study even linked increased Immunoglobulin A with listening to music or singing and a decrease in cortisol levels which can be an indicator of stress. The net result, an overall boost to the immune system. 

My husband and I attended a live concert at a small venue recently. We had seen this musician before, but I was tickled to see the excitement of a friend who had not seen him perform and had no idea what to expect. My friend, like me, has had severe health issues throughout her life. She was in hospice at one point and not expected to make the night. Fortunately they didn't tell her that. She walked out the front door and back to a productive life. She turned to me during a break in the concert and credited music, healing music, as part of what brought her back. I believe it.

My advice. Turn off the TV for awhile, close your eyes and relax. Listen to your hearts desire whether it's Reba McEntire, Mannheim Steamroller, or Megadeath. 

Getting Past the Storm…The Not Quite Perfect Marriage

There are two well known artists that I follow on Facebook; a married couple. They are probably in their 70s now and have been together forever. When I see photos of the two of them, even though I've never met them in person, I am struck by the absolute certainty that they are still deeply in love. You can see it in their faces and in their body posture. The way one looks at the other when the other is not aware of it. They always seem to be touching in some manner. A calm energy flows between them and you can't help but be emotionally moved by it. I find myself smiling uncontrollably when I see these photos.

I told my husband that I hope we live that long and I hope that will be us. His response was that it is us now...but we haven't been together forever. We've only been married since December of 2012. You might think that leaves us still in a honeymoon phase, but when you marry someone at age 45 it's very different from being married in your 20s. It's also very different when you marry someone who has chronic illnesses. This is the second marriage for each of us. His first ended in divorce. My first ended with sudden death. When you are young and dating, you are still trying to figure out who you are. You are going to grow and change in the years to come. What you want now may change drastically 10-years from now. Ed and I already had decades of life experience, relationship experience, which shaped us and sharply defined our needs. We both knew what we wanted out of a relationship, what we had to give and found we were a good fit. That may not sound romantic, but at some point the initial physical attraction wanes and a deeper love has a chance to take hold, but only if it's built on common ground and respect.

"Hope Burns Bright" 6"x6" Acrylic $260 by Rebecca Zook

Recently in a chronic illness group, someone asked if anyone else had had a spouse leave them after they got their diagnosis. I figured there would be some of course, but was astounded by the percentage of people in this group that had that very thing happen and these weren't all newly married young people. Some had been married for 10 or more years and the spouse couldn't deal with the ways in which an illness changes the dynamic of day-to-day life. The element of uncertainty that it injects. Many refused to acknowledge the illnesses calling them hypochondriacs and claiming they could get better if they wanted to. That this was all for attention. Those who had been left had given up on finding love again. Feeling damaged and that it wasn't even worth trying. I was deeply saddened. A few people chimed in about their relationships that had survived and thrived in spite of the health challenges, but not many.

The strongest aspect of my marriage is communication. It's the cement that holds every other piece of our relationship together. It's vital, essential. Without it, we would crumble. We both have chronic health issues. There are times when one of us is unable to complete necessary tasks around the house or when we are selfishly licking our own wounds dwelling in a bout of self-pity and aren't thinking about the needs of the other person. That's a difficult state to get past. It's easy to feel sorry for yourself and the unfairness of the situation. You are hurting and exhausted and just want to curl up inside yourself and block everything out. Satisfied, at least temporarily, to merely exist. Sometimes that is all you have the energy to do. The other person feels rejected and can pull away as well to protect their own feelings. It can easily spiral out of control into resentment and get more difficult to reach out with each passing day. Not wanting to expose yourself to the potential of more emotional pain.

It's amazing what a kind word can do. Trying to understand the other's pain, without blame, offers a lifeline. A possibility of escape and can begin to pull them out of the dark void. Remember that when you are the one that is sick, you don't get to discount the people around you. They need to feel loved and taken care of every bit as much as you. They need to feel appreciated. I've found that doing things for others works wonders for my self-esteem and makes me feel like I matter. Even if it's something small. My husband shakes off appreciation and compliments, but I'm not going to stop giving them. I need to say how much what he does means to me and whether he admits it or not, he needs to hear it. When I thank him, he always says, "We're partners, right? You'd do the same for me." He says it with such conviction that I feel like we could do or survive anything as long as we have each other. He's already nursed me through 3 surgeries and breast cancer in addition to dealing with my Primary Immune Deficiency and autoimmune issues. Equal partners, that is key, with a great deal of respect for each other.

He also said, "I know our relationship isn't perfect, but it's pretty close." I think anyone who believes they has the "perfect marriage" is deluding themselves. We argue. We say stupid things to each other. We can be selfish. In the end though, we always listen to each other and more importantly, feel like the other person has truly heard us. We apologize and move forward. We share the joy in each other's accomplishments and provide encouragement. We cherish the small moments because we know all to well that you never know when they are going to be the last moments. 

More than a Simple Game of Fetch

A Boy and His Dog…"Buster Brown" has sold,
but seems appropriate for this blog entry.

(Note: I refer to Floyd as the latest dog…I wrote this before Ed brought River Dog home on Saturday.)

As a kid (and adult for that matter), I hated being forced into situations where I was unfamiliar with the other children or the activity taking place. I'd much rather sit on the sidelines and carefully watch until I understood the rules and felt comfortable engaging. Throwing me into the fire resulted in pure panic (I was good at hiding it, but inside, yes, definitely pure panic) and I'd be much less inclined to participate again…EVER. This is common in introverts.

Fortunately for our latest dog Floyd, an Australian Shepherd/Border Collie mix, both his parents are introverts. I have taken in many abandoned and abused animals from dogs and cats to parrots and even a lizard over the years and have never seen an animal as terrified as Floyd. He believes that he is about to be punished every second of the day. I do not know for sure what his first family did to him, but it was bad. I'm just thankful that once he managed to escape, they didn't want him back. I think he's an introvert by nature, but the abuse compounded it by making introversion a survival mechanism. When everything you do is wrong, it's best not to engage at all. He is gaining confidence, slowly, but has a long way to go. 

Floyd and I on his first day with us.

Floyd had no idea how to play. No idea what toys were and had to be convinced that it was okay to take a stuffed animal that was handed to him. He'd almost immediately drop it and you'd have to give it to him again. He's realized the phrase "it's okay" means nothing bad will happen. We say it a lot. Also if I hold my arms a certain distance apart stretched toward him that it means hugs. He didn't have the concept that something could belong to him. Anything he took, he acted like it was stealing, even when given to him. With the aging of our Border Collie, Ed desperately wants another ball dog. Our previous adoptee, Archie (mini Aussie and no telling what else mix), is easily distracted and prone to wandering off rather than focusing on the ball. Floyd should be a perfect playmate for Ed if we can just get him over his fears, but being an introvert, Floyd needs to learn on his own timetable, not ours. Pushing him results in not just 2 steps back, but more like a mile of regression.

We are teaching him the perennial classic game of fetch. 

Step one. 

Ed throws the ball for our other 4 dogs as they, en masse, race across the yard barking excitedly and vying to be the first one to snag the ball. Floyd watches, intently focused on the game and finally runs with them, but does not get the ball. Fortunately, Floyd loves other dogs and is not in the least aggressive, which would be understandable given his background. He's trying at this point, but doesn't seem to have the entire concept down. To be fair, with 4 dogs playing, the game isn't all that consistent. There's a lot of stealing, running off with the ball or not completely bringing it back depending on who gets a hold of it first. 

Step two. 

One-on-one time. Tossing the ball to Floyd results in the poor guy being bopped on the nose repeatedly. Adding the word "catch" before the toss seems to pin down for him what action he is supposed to take, but it's a little while before he's coordinated enough to open his mouth and get the timing right; not closing it too soon or opening too late. No one had tossed this dog ANYTHING before he came to live with us. Nearly everything a house dog should normally know by adulthood was a foreign concept to him. 

We repeat steps one and two. Then something remarkable happens. I'm sitting watching television and Floyd comes racing through the dog door from outside with the tennis ball in his mouth. He leaps onto the sofa and begins tossing the ball onto the floor, chasing after it himself, leaping back onto the sofa and repeating. He reached his comfort level with the game and not when we were actually playing it. He tried it by himself first. Something I completely understand. I got him to bring the ball to me and I tossed it a few times which he readily chased, but needed a little encouragement to return it after each throw. I was so happy for him. To see that kind of joy instead of constant fear brought tears to my eyes.  

I lived that fear as well, not due to extreme abuse, but because I was different and bullied as a result. Because I wasn't interested in girly things and would rather sit and read my books or explore the woods, climb trees and catch frogs and of course sit by myself and draw for hours on end. Fortunately, I had friends that understood and had similar interests. I couldn't have survived without them. Still, it took me a very long time to find my confidence. To realize it only mattered what I thought and that I shouldn't let other people define me. Unfortunately, it took falling into an emotionally abuse relationship and pulling myself out of it to begin to realize this. Maybe this is why I'm drawn to lost and abandoned creatures.

I want Floyd to find himself and be happy. It brings me a lot of joy to watch his progression. Yes, I do know he's not human, but that's irrelevant to me. Dogs have emotions, perhaps purer than our own. They are thinking beings and don't deserve the horrific treatment that many humans inflict upon them. 

Now I see him playing by himself with other toys in the yard. Tossing them in the air and catching. He even recently made a flying leap to catch a ball Ed threw much to Ed's surprise. We are still nailing down the details of the game with him…such as not running out the dog door with the ball when we play in the house, but I'm just thrilled that he can be happy and forget his fears, if only for a little while. 

Enchantment

Enchanted Rock near Fredricksberg, Texas

I've never been a fan of the spoon theory. It just doesn't resonate with me. If you have or have been around anyone with chronic illnesses, you are likely familiar with it. Imagine each day you are handed a bunch of spoons. They represent the amount of energy you have to expend for the day. You can't have more. Each activity that you do costs you a spoon. The goal is to make it through the day without running out of spoons. I need to define 'activity' because I'm not talking about going for a run or spending the day at an outdoor festival. Those things cost you far more than one spoon. For some people, walking up a flight of stairs, cooking dinner, running to the grocery store or even through the drive-through at the bank will cost them a spoon. Spoon theory is an effective way to illustrate to someone who is healthy what it's like to live with limited energy.

It just doesn't go far enough for me. Most people think, well, you can plan ahead what you will be able to get accomplished. That you can follow a schedule. If you take a nap you gain more spoons. It doesn't work that way. I think a better analogy is to picture yourself walking dangerously close to the edge of the Grand Canyon. You do have a degree of control, but a misstep on your part could cause you to plummet to your death. An outside force such as a gust of wind could cause you to plummet to your death. Sometimes you find yourself falling and have no idea why. See yourself walking along that edge and trying to accomplish everything you need to during your day, but always keeping the looming abyss in mind. Can you see it? Now add fog. Really thick fog, so that the edge is obscured and the abyss hidden, but it's still there. It's always there. This is what it's like to live with chronic illnesses. 

When you wake up, you have no idea how many 'spoons' are in your hand for the day. You guess at the amount of energy you have. You try to base it on how 'good' you feel that day, but anything can come along and steal the energy. Each day is different. It's the inconsistency that's the worst thing to deal with and the hardest thing for others to understand. "You cleaned the house a week ago, why can't you do it today? We had a night out planned. You were fine two hours ago, but now you say you can't go?" It becomes easier to say "no" rather that disappoint someone at the last minute. And those days that you feel as if you can do anything are a double edged sword. It's nearly impossible to not overdo it using up your energy for the next several days all at one time.

But the Grand Canyon is breathtaking. Sometimes you have to wait for the sun to burn off the fog, stand at the edge and marvel at the beauty. Then jump. Jump by choice. Throw up your hands and say, "Damn it, I'm going to do this and if I feel like crap for the next week, it was worth it." That was what I decided last weekend. My husband and I had gone out of town for an art show opening and several events were planned around it. I knew that alone was going to zap my energy. Plus, I had to risk food allergy reactions because we had no place to do our own cooking. I took extra medicine as a precaution. All the art events were on Saturday, so Sunday we were left to our own devices. It was a long drive home, but we did have some time to kill. Ed wanted to climb Enchanted Rock. I should say that Ed wanted ME to climb Enchanted Rock. It's an exposed ancient lava chamber after the volcano eroded away. It's BIG. The path is winding and uneven. There are boulders to climb over. It's also quite beautiful and I've only ever seen it from a distance. He felt like I needed a physical victory. It has been close to a year since I've tried anything dramatic along those lines.

I had mixed feelings. I wanted to do it, but I was afraid of the abyss; the price I might have to pay later. I was afraid if I made it to the top, I might not be able to get back down. I had all kinds of fears trying to stop me. Instead, I told myself I could turn around at any time. Ed said we could stop and rest whenever I needed to. More than once I felt like I was gasping for air; heart pounding. My legs felt like rubber. I had to sit down repeatedly and I truly almost gave up, twice. But with encouragement and patience from my husband, I made it to the top. 

On the way down Ed asked if I was proud of myself. I said, "No. I was a big baby about it." At least I felt like I was. I complained more than once. I expressed frustration instead of just sucking it up and shutting up. He assured me this was something to be proud of. Yeah, he's right. It is. I just hope the next time I can keep the fears at bay. I suffered some pain afterward and was worn out for a few days, but it was worth it. I got to see the beauty in the abyss and gain a new perspective...standing at the top of this giant rock. 

Questioning the Status Quo

As you can imagine, I've been through the ringer when it comes to medical testing (as have most of you). Some were simple blood draws…though up to 8 vials at a time. While other tests were much more painful. Think bone marrow biopsy and electrified probing needles. Most were just at varying levels of discomfort. A topic came up on a CVID group about knowing when to speak up for yourself when it came to testing. Most agreed that they often suffered tests in silence because they didn't want to come across as the problem patient or cause a scene. I have been guilty of this in the past. Not so much now. You can politely complain or question something that is about to be done. I recently had an experience that made me look at things from the tech's perspective as well.

Sometimes when it comes to my medical issues
I feel like grass being blown about by the wind,
but I take control where I can to calm the breeze
and regain a place of strength.

"Wildness By The Water"   7.25" x 11"
Acrylic on Masonite   $375 

I'll start with the polite questioning scenario. A week ago I had a dermatology appointment to have a new rapidly growing mole examined. It would periodically itch intensely and was changing color. Being fair-skinned, blue-eyed with a healthy dose of red in my hair and having a basal-cell mole removed in my early 20s, I was worried. The dermatologist had a young doctor following him around that day. I explained my concerns and stated that because of the immune deficiency I was more susceptible to cancers. He looked at the spot and said he believed it was a benign growth, but that if it bothered me, he could freeze it off. I paused a moment and said, "How positive are you that it isn't cancerous?" He responded with, "There are some cancers that may not look like cancer." "Hmmm, I would feel much better if we went ahead and biopsied this." He said that was fine and we did the procedure. The young doctor observed all this and started asking me questions about the immune deficiency and if my family had related issues as well. He also generously took my jacket as the dermatologist looked at additional moles on my arms and back and set it with my purse. I was thinking, I hope you retain that bedside manner as the years pass and that you understood my concerns and reason for asking for the procedure. 

At that point the nurse was handing a needle to the doctor and I said, "that's just lidocaine, right?" She said, "Oh, yes." Immediately the dermatologist said, "No, it has a little bit of epi in it. Do you have problems with that?" Not exactly. I explained I am also prone to heart racing and that it was possible the epinephrine might trigger it. So he asked the nurse to get a syringe without epi. I was glad I had spoken up. I had a phone message yesterday that the growth was indeed benign, but I don't regret having it confirmed one bit.

I also recently had my left breast examined again to check for tumors. I had a mastectomy of the right side in September. My doctor just requested a sonogram, but the imaging center insisted on a screening mammogram and then after looking at it called me back for a diagnostic mammogram before we ever got to the sonogram. The mammography tech was very nice and the policy certainly wasn't her fault, though I did question why we were doing this since it wasn't on the order. She got noticeably flustered and I felt bad. When it was all over she said to me, "I know you have been through this all before, but you were really patient." I replied that I was just thinking that this didn't hurt nearly as bad as the last time I had it done. At that point she absolutely beamed. She started telling me how she was really conscious of the psi that she was using and had done tests that showed, past a certain point, additional compression didn't improve the detail in the digital files. She really tried to make the patient as comfortable as possible. I was having a difficult time not smiling really big at her enthusiasm. I had just completely made her day with my offhand remark. I thanked her for her attention to detail and as I left the room thought about how many women must complain during the procedure. It's not pleasant. Someone is moving private parts of your body around and placing you in awkward positions. As an artist and graphic designer, I'm used to positioning models, product or a set up for a still life painting and the direction she was giving verbally or her physical positioning of me; I never once thought it odd or unusual. I do the same thing in a different setting, but I can see how just about everyone else would find it strange and feel vulnerable. I am going to make a big effort from now on to thank techs that do a good job. They deserve it.

Real or Imagined

I told Ed last night that I had rejoined a Facebook group for CVID…my immune deficiency…and that I kinda wish I hadn't. Since this one is a closed group, people are much more open about their problems and I was just about in tears reading posts. People having to choose between paying their mortgage and paying insurance and thinking their families would just be better off without them. Losing insurance means losing the antibody infusions. No one can afford them without insurance and for many it's still a struggle with insurance. Right now a major insurance company is forcing patients with a CVID diagnosis to cease treatment for 4 MONTHS in order to PROVE they still have the illness. One week past my normal infusion schedule and I'm in pain and sick. 4 months could kill a person. They are also just refusing to cover the treatments for many altogether. Insurance companies deciding treatment, not doctors. 

Then there are so many who have family, friends and spouses that think it's not real or that they are somehow causing the problem by not eating right or not taking the right supplements. They accuse them of just being lazy or stupid. People whose family members have not spoken to them for YEARS just because they are sick; because they don't understand the genetic nature of the illness or the variableness of the symptoms. The online community is all they have in the way of emotional support. Many are too sick to work regular jobs. A lot of us have secondary autoimmune conditions which are worse than the primary immune deficiency and/or have cancers. They are barely surviving. One bad illness can wipe you out financially. Imagine one that is lifelong and expensive to treat.

I want to thank my husband, my family, my friends, my coworkers and my doctors for believing. For not making me feel this isn't real and for the understanding and support. Coworkers stay away from me when they are sick and are understanding of doctor appointments. Friends insist on accompanying me to appointments to provide moral support or have lunch with me during an infusion. My husband has learned to devise meals that I can eat and are delicious. He does the vast majority of the cooking. He is also there for me when I occasionally indulge in a bout of self-pity. I appreciate this so much. It means everything. I am a strong person, but it would be so much harder without your support.

I am thankful I can still work full-time and function in the world, though I have to watch my day-to-day energy expendature. I have a great job, a creative, challenging job, that I enjoy with good benefits. I can sell my paintings for additional income. Again, something that is already a passion for me. I have a house that is paid for because my late husband, Tom, was adamant about having enough insurance to cover it if something happened to either of us. I make enough money, so that my husband, Ed, has been able to go back to college and pursue his passion and he is happier because of it. I have people that love me. I am in a much better place than so so many of my fellow zebras. I also know I could lose it all in a blink. That I am walking on a wire and doing everything I can to not fall.


The Zebra painting is sold, but appropriate since those with rare diseases refer to themselves as Zebras after this common saying in the medical community.

"When you hear hoofbeats think horses...not zebras."