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Tuesday, June 14, 2011


Back in a regular hospital room,I begin to understand what my life will be like for the next several months. After they settle me in and get me hooked up to the wireless heart monitor, the first thing the nurse does is put signs on my wall. Each sign has a medication name, its purpose and lists the potential side effects. There are 5 signs. The medications are Bactrim, Cellcept, Prograf, Prednisone and Valcyte. The potential side effects from any one or more are: tremors, high blood sugar, swelling, numbness and tingling, abnormal sensation, stomach upset/ulcer, hot flushing, increased hair growth, hair loss, sensitivity to sunlight, weight gain, blurry vision, mood swings, hallucinations, anxiety, insomnia and, of course, increased risk of infection and low blood cell counts.

Out of ICU, I finally take a good look at my incision. In the center of my chest from just below the collar bone to the top of my rib cage are neat whipstitches in and out of very red and raised skin. I immediately dub it my 'Raggedy Ann' scar. I also have the incision where they took out my pacemaker. That will be allowed to heal normally for the first time in 12 years. It hurts worse than the center one. It is painful to move, but not as painful as you might imagine. For one thing, my entire chest is numb, breasts and all. That alone is an odd feeling.

There are still two catheters in my neck, which is red, swollen, scarred, bruised and rashy-looking. There is also still a drain hanging out from below my left rib cage. It fills with what looks like a mixture of blood and water. It occurs to me that it must be similar to what poured from Jesus' side when He was on the cross. (John 19:34)

Over the next few days, a physical therapist comes in to help me with simple exercises and stretches to get me moving without ripping my incision. An occupational therapist comes into show me how to get in and out of bed safely, how to function with tremors and how to go about daily hygiene and other activities when I go home. A diabetes nurse comes to make sure I understand how to test my blood sugar, measure insulin and give myself injections. I've had to give myself injections of blood thinner before, so it doesn't seem so bad.

Even though my mind is still foggy and I feel way beyond strange, I am not drowsy. My average day goes something like this:

5:30 am   Phlebotomist comes in to draw blood
6:00 am   X-ray techs bring in the portable machine and take a chest x-ray
6:30 am   Nurse comes in to check my vitals and weigh me

7:30 am  
Nurse comes in to check my blood sugar before breakfast. If it's high, I either have to take a pill before I eat or give myself an insulin injection. The thinking is that this is something I will have to do at home.
8:00 am  
Breakfast - I am on the renal/diabetic/hearthealthy diet. Meal times are not very exciting. I'm limited on carbs/sugar, potassium and sodium. The regular menu food at Cedars is not bad. I've had it many times before. But it's hard to put flavor in food when you have to leave all the good stuff out. And I LOVE good food, so this bland diet is a struggle for me. The saving grace is that I am allowed to have some dark chocolate every day. After breakfast, the nurse comes in with my meds. She tells me what each one is and what it's for. There are about 9 pills total, two of which are HUGE and green - not fun to swallow. A
couple of meds I still get via IV.

Mom usually comes in to spend the day with me. They like to keep me sitting in a chair or trying to walk around, escorted, with a mask a gloves on if I go into the hall. At some point the nurse's aide comes to help me wash up (or Mom does) and change my gown. I'm not allowed to shower in the hospital. The danger of infection is considered too high. Just before lunch they check my vitals and my blood sugar again.

12ish       Lunch. Enough said.

At some point in the day - morning or afternoon - the parade of doctors begins.There are the transplant surgeons, the regular transplant doctors and transplant coordinators, the kidney specialist, the diabetes specialist and the infectious disease specialist. In between, Mom and I visit, watch TV and do crossword puzzles. With tremors, my handwriting is like chicken scratches. I try to sit in a chair as much as possible and move around. The IV tree makes it awkward, but I've done it before. I never nap. I'm never sleepy. Mom may nod off a little. Then she leaves early enough to miss the heavy evening traffice. I wait for Spud to arrive.

The mealtime routine commences. Spud strolls in - a highlight of my day. I usually have enough food left for him to eat some of my dinner - if he wants it. If not, he grabs something in the cafeteria.

7pm - ?   
Spud and I go for a walk in the halls. We watch TV and catch up. He leaves around 10. I watch more TV and have a little snack around bedtime. It's usually 1 am before I start to feel tired, but not really sleepy. There's that darned insomnia side effect. Or maybe it's just all the blood pumping through my body that I'm not used to. I finally turn the lights off and the boob tube and try to sleep. Here and there I doze. When I'm allowed to walk by myself, many early mornings between 4 and 5, I walk the halls. I'm usually sitting there waiting for the phlebotomist and the x-ray guys.

I was informed prior to surgery that the only way to determine if you are in rejection with a heart transplant is through a biopsy. My first one is already scheduled for a week after my surgery - as an outpatient. However, due to the kidney failure and the fact that I have a low-grade fever and scratchy throat, I cannot yet be released. They do the biopsy - going in through a veing in my neck and snipping out a little heart tissue. The following day they tell me the results are good and talk about sending me home. It honestly makes me apprehensive. I still feel fragile. As it turns out, there is still too much fluid in my drain and I still have a low-grade fever. They will keep me for awhile longer.

AUTHOR'S NOTE:  If some of that made for boring reading, it's because I wanted you to feel what it's like to be in a hospital day after day. My total stay ended up being about 3 weeks. And there are people who are there longer. If you have a friend or loved one in the hospital and you are close enough to visit at all, take an evening or afternoon out of your week and go. It will give a break to those who are there day in and day out and be a much-needed lift to the one who is ill.

Monday, April 18, 2011


It is 3 am. Spud is alone, in shock and devastated. In the waiting room, he is having a meltdown.  Not quite knowing what to do, he phones our pastor, Lorraine Coconato. He tearfully explains what is happening. She asks if anyone is with him. When he says no, she instructs him. “I will send out a mass text asking everyone to pray. You need to do the same. Let your family know and see if someone can come to be with you.” He says, “What do I do about Verna (my mom, who is at our apartment)? If I call her I have to go get her – and I’m not leaving this hospital!” She tells him he has to call her, not to worry….it will work out. They hang up and he dutifully sends out the text. Within seconds, the responses begin. Our friend, Pam: “Praying.” Yvonne, Spud’s ex-wife: “Bill and I are already up and praying.”  His tears become tears of gratitude as friends and family continue to respond.

Tanya sits straight up in bed when the text comes in. She reads it aloud to her husband, Manny. “Kidneys! You can’t live without kidneys.” Manny hops up and is getting dressed as she reads. “Text your dad I’m on my way.” Spud gets the text and has an idea. “Can he pick up Verna?” “Manny picking up Verna,” the text comes back. Spud, still emotional, calls Mom and tells her my kidneys have failed. Mom calls my brother, Mark, who gets up, jumps in his car and drives from Laguna Beach to L.A. at 100 mph. Mom is waiting in the lobby of our building when Manny arrives. She goes out, gets in the car, closes the door and says, “I hope I have clothes on.” (Gotta love my mom!) With that, they are off to the hospital.

As I go through dialysis, family once again gathers at the hospital. Numerous texts and phone calls are exchanged. My stepmom and stepsister, Della and Donna, check in from Sacramento. My best friend, Gena, awaits news in Houston. Through the miracle of the internet, prayers are literally going up for me around the world. I am blissfully unaware of all this excitement. I have no memory of my first or second dialysis.

Dr. Siegel stops by and hears the news. He scolds my family. “Why didn’t you call me? I could have been here, making sure you understand everything that’s happening.” He assures my family that kidney failure after transplant is not uncommon. “Before the surgery the pressure in her heart was 2, now it’s 7! Her body is probably in shock with that much blood flow. " They expect that my kidney function will return within a few days. In a worst-case scenario, I would need a kidney transplant as well. Everyone’s blood pressure returns closer to normal.

A renal ICU nurse named Arielle patiently explains dialysis and everything she is doing to my family. Her name means ‘sent from God’, and I believe she truly is. She attends to me with great skill and care. Sponge baths, medications, bandage changes, constant monitoring…..Arielle is patient, consistent and insistent, when necessary. She makes sure I am sitting in a chair a good part of the time, despite my lack of interest.

 We are waiting. I start to be less foggy. I really feel like I have to go to the bathroom, though I still have the Foley catheter. Another day arrives. They are planning more dialysis, but they continue to check my urine output. So do I.  It’s looking a little better. They’ll hold off on the dialysis. By the next day, it’s official. We have kidney function! There are many, “Thank You, Lord!'s"  and a collective sigh of relief heard  throughout the unit.

Once the crisis is over, they waste no time pushing me forward in the healing process. I am almost never alone in ICU. Mom and Spud are there almost every day; Mark comes often. If none of them are able, Terri, Tanya and Manny take a turn. A mom from the acting school where I work, even comes to spend time with me – and bring me dark chocolate. (Thank you, Sharon!) Ariel sits me up in my chair and, within a day, they have me walking with a walker out in the hall. My legs are shaky, but I can still move along pretty well. After a few successful trips around the ICU, they waste no time shipping me out to a regular hospital room.

Sunday, February 27, 2011


Author’s note: Most of what I am about to write, including the things that happened prior to my surgery, I do not remember. I will tell the story, as I best I can, from what my family and friends have told me. If details are missing, it is because, in the days after the surgery, to one degree or another, I was sleeping.

And so on the evening of May 5, 2010, I am at Cedars-Sinai Medical Center in Los Angeles waiting to hear when my heart will transplanted. The initial word is that it will probably be in the middle of the night. Spud, Mom and Mark are waiting with me. Finally, at around 2 am, we are told the heart will not arrive until around 7:30 am. Spud has worked all day, so he goes home to get a few hours of sleep. Mom and Mark settle in for the night in ICU. I say to them, “Let’s sing, “ and I begin IT IS WELL WITH MY SOUL. Mom and Mark look at each other thinking, “Does she know something we don’t?” It’s one of my favorite songs and, under the circumstances, I find it comforting and highly appropriate.
The next morning I am taken in for surgery. Spud is back at the hospital. He, Mom and Mark are in the surgery waiting area. After a bit, a nurse comes out to speak with another family. My family overhears her say to them: “I’m sorry, but your procedure is going to be delayed. We have to do a heart transplant.” The other family asks about the timing. The nurse says: “The heart is on a chopper about 5 minutes out.” My family knows that is my heart.
The surgery takes about 4 hours. I am taken back to Cardiac ICU. The sight of me lying there is apparently quite shocking. Besides the catheter that was in my neck prior to surgery and the standard Foley catheter in my bladder, I have the endotrachial tube in my mouth and three tubes coming out of my chest, just underneath my rib cage. There are two racks of IV’s that hold 12 bags each and they are full. None of my family or friends has ever seen anyone in that condition before. The ICU nurses busily attend to me.
Booh, my boss’s better half & a long-time family friend, has been a major supporter throughout this process. Before I went into the hospital, she planned a surprise dinner for me with all my family. It was very special. On my birthday, she gathers the family at Jerry’s for a celebration. They make a sweet, funny video to share with me later.
At some point, I begin to have moments of consciousness. I gesture at the breathing tube, wanting it to be removed. The first words I remember hearing are from my mom: “She looks flushed.” My brother answers, “No, I think she just has color.” Later on, as I begin to open my eyes, Mom again: “You slept through your birthday.”  What day is it?  “It’s Thursday, May  7.
More family and friends have arrived along the way. I am somewhat aware that people are coming in. Tanya, Terri, Manny, Lorraine….I remember seeing the faces, but not exchanges. Spud is there, of course. Always. I am conscious enough to know that everything went well. Somewhere along the way, they have apparently removed the breathing tube. I have no memory of that. I am aware, however, of plastic things around my legs that inflate every so often. They are meant to help with circulation, I’m told. I don’t think I like them that much.
On Friday, I am a bit more aware. I am able to somewhat converse. They have me sitting up in a chair and begin to give me tea and broth. Tanya, my youngest stepdaughter, and Mom are with me. The nurse brings in some beef broth. I take a sip and apparently don’t look pleased. “We have chicken, too. Would you rather have chicken?” Yes. She graciously returns with chicken broth. I am in CARDIAC ICU, so low-sodium (read: TASTELESS) broth is a given. Mom is doing her best to get me to drink some. I take a couple of small sips. I am really not interested. Mom insists. “Come on now. Have some more broth. You need to get some food in you.”  “That’s not food,” I say tersely.  Tanya smiles at the glimpse of my familiar spunk. Everything indicates I am doing well.
Family and friends all go home for the night. Spud settles into the recliner. The nurses are in and out checking on me. Spud is asleep. We are as peaceful as is possible in ICU.  With no hint of foreboding, that peace is abruptly shattered. A very intense nurse walks in and says, “Your kidneys are failing. You need to sign this form so we can start dialysis.” My hand is shaking from weakness and mediation, but I dutifully scrawl my name.

Tuesday, January 25, 2011


A week or so has passed. The test results are in and I am once again sitting in Dr. Patel’s office.  He has “good” news. I am a candidate for a heart transplant. “I am?” I said, with genuine surprise. He tells me that, aside from my heart, I am otherwise in good health and my other organs are functioning well. “But it’s not something that has to be done immediately, right?” He explains that, since my heart is not functioning well, eventually my other organs will start to fail. The ideal would be to do the transplant before that happens.

My mind is racing. I’m doing okay, I think. I may not be functioning optimally, but I am functioning. I could probably continue like this for several more years. “What if I don’t get the transplant?” The immediacy of the response stuns me as much as his words: “Six months, maybe a year.” At that moment, I go numb inside.

You might think I would schedule the surgery right there. I don’t. I’m not sure whether I should have the transplant or prepare to embrace my final year of life. I have to talk to my husband. I have to think. I need to pray – which seems to be the hardest thing to do. I try, but it doesn’t feel fruitful. I can’t seem to get a sense of what God would want for me. Husband, family and friends all seem in favor of – if not excited by – the transplant. But it is ultimately my decision and I don’t know how to make it. Then it comes to me – and I have to believe the thought is from God. Dr. Siegel has been on this journey with me for 15 years. He knows my condition better than anyone. I put in a call. It comes down to one question and one answer: “Do you think this is my best option?” He does. The decision is made.

I call the office of the Cedars-Sinai transplant team and give them my official okey-dokey. Still,  I am on autopilot, moving ahead with what I have to do, unable to assess how I feel about it. At every stage of this process, I have been completely wrong about what I thought would happen. I am again. I thought they would put me on the list and I would wait. Instead, Dr. Patel says it is best to hospitalize me quickly. So, I begin to put my affairs in order. It is a bit like knowing you are going to die. I know that it is a possibility.

I get together all the information I think my husband will need. I make arrangements for someone to cover my job for a few months. My stepdaughter, Tanya, graciously agrees to do this. I am just starting my second online college course, so I let my instructor know I will be attempting to finish it from the hospital – and that I may be interrupted by my surgery.  My husband lets his work know the coming months might be unpredictable. My mom makes arrangements to come and stay for awhile.

So, on April 28, 2010, I am admitted to the hospital. I settle in with my laptop, continuing my class work and keeping in touch with the outside world.  I am getting used to the idea that I will be “on ice” for a while. The actual sequence of events during this time is a little foggy. I have some much-appreciated visitors in my first couple of days – a couple of students from the acting school and their moms, some friends from church, and my family, of course. I think it is the second day that they tell me they will be inserting the Swan-Ganz catheter in my neck to stay until after my transplant. I knew they would be doing this. I didn’t know I would be in ICU after that. Goodbye, laptop; goodbye, outside world. My brother takes over my Facebook page and lets my instructor know I will be taking an indefinite break from class.

The day after I go into ICU the doctor tells me I am at the top of the transplant list. Because of my blood type (AB+), I am the universal recipient. My body can accept any other blood type. I also need a small heart, which apparently is an additional advantage. One of the transplant coordinators says she will be surprised if I go through the weekend without a heart. I can’t believe it could be that soon; I don’t want it to be. This is happening so fast. I need more time to adjust.

The transplant coordinator is, thankfully, wrong. I get through the weekend. The next Thursday will be my 51st birthday. I make plans to celebrate in the hospital. My doctors get the kitchen “powers that be” to agree to cook me a special meal. I am planning on having a medium rare filet mignon that I know will be my last for quite awhile. I am negotiating for a ridiculously rich and scrumptious chocolate cake. (Hey, if the chocolate cake is good enough, maybe I won’t even need the transplant. Chocolate cures everything, right?) Late afternoon the day before, the transplant coordinator pokes her head in the door. “Guess what?” she says happily. “You have a heart.”  “I do?”  “Yes. It’s a 20-year-old male,” she says. “Your surgery’s tomorrow.”  “Great.”  I gulp and smile half-heartedly. I want to be excited; I really do. I should be grateful. But all I feel is numb. “Tomorrow’s my birthday.” “What a great birthday present! Happy Birthday!”, she says. Sure…..happy birthday, I think. I guess we’re really doing this. I start calling to let everyone know.

Wednesday, December 29, 2010


Before you can get a transplant, doctors want to know all they can know about your overall health and your lifestyle. The run lots of tests and ask many questions. They also give you a truckload of information. The process requires a few days out of your life to complete. One entire day is devoted to several of the tests and an orientation process.
To find out if I was a candidate for a heart transplant I needed the following tests:
Electrocardiogram(EKG): The one where they hook you up to electrodes and print out a reading of your heartbeat.
Echocardiogram: You get hooked up to electrodes like an EKG, but they use an ultrasound wand to view and record images of your heart, its sound and your blood flow.
Chest X-Ray: They look at lung function, check for infection and assess heart size.
Lung Function Tests: They put you in a booth and you have to breathe into and out of a tube, as instructed. It probably took about 45 minutes, and it was quite taxing in my condition.
Blood Tests: They took close to 30 tubes of blood for the various tests. It actually took them two tries. My vein “dried up” after about the first 20 tubes. They test for various diseases (hepatitis, chickenpox, syphilis, HIV) and for liver and kidney function. They also do blood and tissue typing so they can find a donor who is as close a match to you as possible.
Dental Exam: A regular dental exam and cleaning to be sure there is no infection.
Left Heart Catheterization: They insert a tube into the femoral artery, which is fed up into the heart. In this case, the purpose was to make sure there were no clogs in the coronary arteries. I have had these done several times over the years for different purposes.
Right Heart Catheterization (Swan-Ganz): They insert a tube into an artery in the neck and feed it into the heart to measure pressures inside the heart chambers and the major arteries. I’m not sure of the purpose, but, at certain points, they pump a small amount of saline solution into the heart. This process enables them to determine how well the heart is functioning. I had not had this procedure before.
Since messing around inside your heart can cause arrhythmias, you are hooked up to an EKG for monitoring purposes for both catheterization procedures. They do a local anesthetic at the site and give you a mild sedative, but you remain conscious. There is the usual pinch and sting from the needles and the drugs going in. After that, you don’t feel much pain. The neck area is more tender than the groin, though. You mainly feel pressure as they feed the catheter in and some odd sensations when they are messing around inside the heart. I don’t know how to describe them other than to say it’s uncomfortable and it makes me nervous.
The doctors are usually explaining as they go, then talking to each other, maybe joking around some. I throw a little joke in if it crosses my mind, although I’m not sure I actually make sense. I am on drugs, after all.
The orientation process consists of a series of meetings about every aspect of transplant surgery and life afterward. Spud, my husband, and my mom were with me on that day of tests and meetings. As I said, it’s a truckload of information, so it helps to have more than one person listening.
 You meet with financial coordinators who explain how the surgery and medications are financed and what kind of out-of-pocket expenses you can expect. They also give you ideas on how to fund the out-of-pocket money. They have your insurance information in advance; they have researched what and how much it will cover. They give you handouts to take with you. Their projections prove to be fairly accurate.
You meet with a social worker who explains the type of care you will need post-surgery.  Their job is to determine if you have family and friends that can help you after the surgery or if you will need outside assistance. They also assess your motivation and the commitment of your support system. These factors are considered when evaluating whether or not you make a good transplant candidate. People with loving and supportive friends and family tend to have successful transplants.
You meet with a dietician who explains the type of diet you need to follow after the transplant. It is basically your standard healthy diet – lean protein, lots of vegetables and fruits, whole grains, etc. They also explain a basic diabetic diet, since some of the medications can make your blood sugar high. It is possible you may have to take medication or insulin.
You meet with a transplant coordinator – a nurse who is specially trained in transplantation. They explain everything you need to know prior to the surgery and what to expect after the surgery. They talk a lot about the precautions you have to take with food cleanliness and preparation because you will be on immune-suppressing medication. They talk about side effects from those medications. They tell you about the self-care regimen you will need to follow post-transplant. I was given a binder of information to take home and study. It was a bit intimidating, to say the least.
You meet with a transplant surgeon. He explains heart transplant surgery – the procedure, benefits, risks and possible complications. They open the pericardium, cut the aorta and pulmonary arteries, remove the diseased heart and sew in the donor heart. The average takes about 4 hours – which is less time than my first pacemaker-defibrillator surgery took! That little tidbit boggles my mind.
After this, I know more than I ever thought I would need to know about heart transplants. Everyone we speak with is very positive about having a transplant, even excited. Of course, none of them has actually HAD a transplant. Spud seems hopeful about the prospect; Mom seems resigned to what may be the only option.
I am unconvinced. I have thought about this possibility and have always thought I would just choose to go quietly. “If my heart is done, I’m done. “  Now, it’s actually being presented as a viable option, and I’m not sure how I feel.  As far as I can tell, I am not actually dying. So, really, what are the odds I’m even a candidate? This is all very interesting, but I’m certain I’m not there yet.

Thursday, November 18, 2010


After 15 years of treating my cardiomyopathy and congestive heart failure, when I told Dr. Robert Siegel my energy level seemed to be declining, he knew me well enough to know I was serious. Standard testing did not show a significant change, but Dr. Siegel did not take my concern lightly. I believe he was sent from God to take care of me all these years and to be a conduit for my ultimate healing.
After our first 3 years together, I began to have frequent episodes of atrial fibrillation, a common occurrence with an enlarged heart. Dr. Siegel referred me to an electrophysiologist, Dr. Charles Swerdlow, a leader in the field. Four pacemaker/defibrillators and MANY cardioversions later, my heart would no longer stay in sinus rhythm. The irregular heartbeat decreased my stamina to even less than before. Dr. Siegel and Dr. Swerdlow became extended family members and Cedars-Sinai Medical Center became an admittedly morbid second home.
I had lived at that level for about 3 years before that day in Dr. Siegel’s office – going along okay but seeming to have less and less energy and stamina. I had no idea that what he would say would ultimately change my life. He told me that he did not have an answer for me but that the entire transplant team from UCLA had just joined Cedars. “Transplant?”, I said. “I don’t think we’re at that point, are we?” “Well,” he said, “maybe they have some new treatment ideas. These guys are good.”  I took the name and number for the office and made the appointment.
The appointment in early March was with Dr. Patel. He had looked over my history and at my latest echocardiogram. I wish I remembered more details about that day, but all I really remember is that he suggested I go through the pre-transplant testing to see if I was a candidate. “Really?” I asked. “You’re not feeling well?” he said, his eyes questioning me. I nodded. He continued, “There’s no other treatment for your condition. You may as well get tested. What do you have to lose?”

Tuesday, September 21, 2010


I was born with restrictive cardiomyopathy of the right ventricle. It is rare and it is genetic. On my dad’s side, we lost many family members to heart problems.  That was normal. The condition has seemed to effect women worse than men. Four female cousins were diagnosed with this condition. One died at 16. One had a heart transplant in her 30’s and passed away shortly after. Her sister had a major stroke in her 30’s. Another cousin has followed a course similar to mine, receiving treatment for congestive heart failure and having an implanted pacemaker/defibrillator. That was normal.
For years I knew an earlier-than-usual death was a possibility for me. Knowing this, I still did not consider that transplantation was an eventuality. I always said, “I’ll be here as long as God wants me to be.” That’s how I felt. That was normal.       
Life before my transplant was good. Sure, there were challenges – that was normal - but it was my life. It was certainly better than the alternative. I had a loving husband and a caring family. I worked part-time at an acting school with the most flexible and understanding boss. We were involved in a wonderful church, playing and singing on the worship team, among other things. I had just started taking online college classes with the goal of obtaining a degree in psychology and doing some Christian counseling. I felt that I had purpose in life and that I was doing well overall.
Of course, every day was a struggle with fatigue. That was normal. I pushed through to do the things that were most important – or most important to me, anyway. Resting in the afternoon was essential to my routine. I would still get tired, but that was normal. I really didn’t know there was any other way to feel.  I worked, did chores and errands, spent time with family and friends, took care of church responsibilities and, in the last few months, did college course work. Every night I went to bed what I call ‘bone-tired’. At times I got so tired I cried. That was normal.
It affected my appearance. My hair was drab, my skin was pale and my lips were purple – all the time. That was normal. My legs were always bruised due to medications and had broken blood vessels. Looking back at pictures, my eyes often portrayed the exhaustion that was in my body. Spud, my husband, used to look at me sometimes and say, “You need to rest.” Other people used to ask if I was okay. I didn’t understand then what they saw or why they were so concerned. I was okay, but I did need to rest. That was normal.
Over the years, certain activities had sort of ‘disappeared’ from my life. I always liked to bowl, but I could really only bowl one game without getting tired. I love amusement parks, but the last time I went I had to get a wheel chair. Prior to that some of the rides had started to make me almost pass out. I couldn’t go shopping for very long. It just took away energy from the other things I needed to do, so I rarely went to a mall. A trip to the grocery store was draining for me. There were many things – sports, exercise - that I never attempted, because I knew I wouldn’t be able to do them. I couldn’t walk and talk at the same time without ending up panting and breathless. That was normal.
That was my life, my version of normal. What I didn’t understand was how abnormal my normal was. I couldn’t understand, because I had never experienced anything else. If I saw these kinds of things written about someone else, I would think how difficult their life must be. I would have sympathy for them and pray for God to help them in their struggle. Thankfully, that’s what other people were doing for me......