It was January 2014 that I was privileged to write my story for Jacy’s blog.
The positive response was uplifting and flattering. I had appreciated the opportunity to write my story down, and found it was quite revealing to those around me. But most of all, it was revealing to myself.
In writing it all down, I realized I spent the previous ten years of my life jumping from one crisis to another. My twenties had passed by going from knee surgery, to heart surgery, to another knee surgery, to another heart surgery, to marriage, to a pregnancy with heart problems, to being a police family, to a shooting, to depression, to a failing marriage, to another pregnancy, to moving states, to being a law school widow, to another pregnancy with heart problems, to a third heart surgery, to losing my hearing, to hearing aid implant surgery, and my third knee surgery. Along with the usual financial, educational, relationship, parenting, and career struggles of young adulthood, adding my additional issues had slowly chipped away at parts of my identity. I hadn’t realized I had lost parts myself along the way. But I think I have spent the past 18 months making my best attempt to humpty-dumpty the remaining pieces back together again.
The beginning of 2014 brought writing my story for the “My Name Is” series and my third knee surgery. The orthopedic surgeon cleaned out cartilage and arthritis and hopefully bought me some reduced pain years before I need a knee replacement.
The next while I limped around the house and worked my way back to the gym. My husband would affectionately call me a Zombie after hearing my “step-drag, step-drag” walking pattern on my bad leg. By February I was walking more normally and had hit the milestone of being 3 months out of my BAHA (bone anchored hearing aid) implant surgery. A small post had been implanted in my skull behind my right ear 3 months prior, and it was now time to see if the post had stabilized in my skull so I could attach a receiver to aid my hearing.
My visit was spent with the audiologist educating me on how to take care of the device, and warning that it can take some time to get used to it. I have to keep it in a special jar at night to prevent humidity damage, replace the batteries, and brush the post site on my head daily with a toothbrush to keep it clean too. As is frequent at my doctor visits, I was made aware of my youth as the audiologist complimented me on how great I was at taking the battery in and out of the device. Most of her patients were elderly and had lost dexterity in their hands, and had much difficulty with the small parts. Bonus for me!
I feel that with most things in life, everything is better when it’s bedazzled. Hearing aids included! So I took the liberty of attaching cute, sparkly nail stickers to it. If I had to wear a hearing aid, it might as well be cute! I would rather have it be noticed than try to hide it. Having the hearing aid itself was convenient and helpful, and kind of a fun new experience. And then the infections started.
A few weeks after my appointment with the audiologist to attach the receiver, I noticed my head implant site was beginning to hurt when I rolled onto it when I slept. It gradually got worse and my head had become nasty, crusty, and painfully infected. I took a round of antibiotics, which I don’t love. Over the next 4 months I had 6 different infections. It seemed that every few weeks it would flare up, I would get headaches, my head would be very tender, I couldn’t wear the receiver, and I would have to make another visit to the doc. I tried every natural method I could find, several rounds of different antibiotics, and even changed my diet, but nothing seemed to work long term. The doc said this wasn’t normal, but it should hopefully stop soon.
I found that adjusting to my hearing aid wasn’t just difficult for me, but was difficult for my kids too. My daughter came to me and said my hearing aid bothered her because kids at school had told her people with hearing aids were crazy. I asked her if she thought I was crazy and she said no. I then suggested she tell her friends her mom has a hearing aid and she isn’t crazy. Her fabulous reply was, “I will just tell them you are not crazy and you have one of the greatest minds in the world!”
During the 5th round of antibiotics I had a reaction to the medication. I woke up at 3 am to cuddle with my toilet bowl as I puked my guts out. This continued every 20 minutes for the next 6 hours. I have never done enough sit-ups to make my abs as sore as they were after that night! Eventually, that too passed.
During the time of the recurring infections, I was also going back to the gym. Because of my knee, I could no longer go out jogging, so my best efforts were focused on getting my leg muscles strong to support my knee and buy me time before more surgery, and also to work hard enough to prevent further heart problems.
I had taken classes at a gym years before, but I was always the girl to slip in the back and make the best attempt to go unnoticed. This time hiding in the back was no longer an option, and I became the front row kind of gal. With the loud music I can’t always hear what the instructor says, and I found I have to be close enough I can watch their lips, or just see what they are doing so I can follow them. Plus, my two youngest kids go to the gym daycare, and I need to be able to see if they come to get me to change a diaper because I can’t hear them either. Ironically, I also found that I sometimes have to wear ear plugs during class. Depending on the pitch of the music, it can make the tinnitus (constant ringing) in my bad ear worse. So I got some cool custom ear plugs that help out. They are bright red, because if my hearing aid is fancy, my ear plugs should be too!
When starting back to the gym after knee surgery, I went to cycling class first. It was recommended by my cardiologist because it can be a difficult high endurance exercise, and my orthopedic surgeon allowed it because it is low impact and helps my arthritis. It was a good way to get my strength back, but I found it provided more than that during those months of rehab and infections.
During cycling class the lights are turned off, and the music is turned up. You are in a class with other people, but it is also a time when you can feel very individual. I started to find myself getting lost in my own thoughts and emotions during class. Exercising had always been my own form of self-therapy. Running was no longer an option, so cycling was the replacement.
One day in cycling class the instructor was walking around the room. She is fun and sassy, and often teases/motivates people to push themselves. I hadn’t noticed I was pedaling my heart out and had put my head down in exhaustion. She came over and teasingly asked, “Are you praying? Or are you pedaling?” I smiled and said I was just trying to keep breathing! But after that, I realized I hadn’t necessarily been praying, but I had been getting lost in thoughts that I had spent a long time avoiding.
For some reason, being there in the dark, surrounded by the music, dripping sweat, and pedaling my heart out…it made me feel free. Free for thoughts to surface. Thoughts I had ignored for a decade. Thoughts of my cardiologist telling me I had to exercise to avoid more surgery. Replaying the moment the doc told me I could drop dead. My frustration with my hearing aid, and the ongoing struggle of infections. Sometimes I was simply furious that I felt like I was broken…so I pedaled harder. I was sad for myself that I would never be “normal” again…so I pedaled harder. Sometimes I was grateful to just be alive…so I pedaled harder. Most of the time I was pedaling harder because I was determined I was not going to let my bad heart, hearing loss, emotional scars, or my bad knee ruin my life. I started going to other types of classes too and found that you’d be surprised how many push-ups you can do when you are having crazy emotional thoughts in your head! It’s quite the motivator! For the first time in ten years I had allowed myself to actually have these thoughts. And after an hour of exercising and thinking through them-- I felt better. I was taking control of the pain and emotions I had subdued for so long. I pedaled faster because I refused to die. I refused to have another surgery. I was doing my best to refuse to let my physical ailments, personal pity party, and emotional scars control my life. It was hard, but it felt good!
My youngest kiddo turned 2 in the spring and my husband and I debated if we should have more children. I had been told that my condition of having 2 AV nodes in my heart could be worsened by hormonal changes such as pregnancy or menopause. I had also been warned that weight gain, and the ligament loosening hormones of a pregnancy could wreak havoc on my knee. It was a calculated risk with uncertain results, but we decided we would see if I could have just one more kid.
Just after we made that decision, and I had completed another round of antibiotics for my head, I spiked a fever of 103 and had severe head pain. I went to my doc, who quickly sent me to the ER where I spent a lovely day of medications and IV fluids. Luckily, it wasn’t meningitis and was just a simple virus. But I was really surprised at how many weeks it took me to really recover my strength. I felt like the physical strength I had once taken great pride in had left me, and I must have been weakened not just by the virus, but by all the challenges of the previous years.
A short while later we were pregnant. This pregnancy ended in an early miscarriage, and I was disappointed but not surprised since most people have at least one miscarriage. My husband and I briefly debated again if we should really have another child and decided to give it a few months. A few weeks later we were pregnant again, and this time it stuck.
The typical morning sickness ensued. Nearing the end of my first trimester I noticed myself getting short of breath suddenly, or a choking feeling arising in my throat. I knew it was my heart again. I started carrying my trusty Beta blocker medication all the time to treat the symptoms and got an appointment to go back and see my heart surgeon.
The cardiologist informed me there were two possible outcomes. My symptoms were something simply aggravated by pregnancy that could be treated with medication and exercise and should go away after the baby is born, or it is my heart defect acting up and I would have to decide if I wanted surgery. This surgery would be riskier than my previous ones because my extra AV node is right next to the one I am supposed to have. There is a chance they could zap the good AV node when trying to fix the bad one and that would mean a pacemaker for me, or the highly unlikely, but possible-- death. To diagnose exactly what was going on I was ordered to wear a heart monitor for the next 30 days.
The monitor was sent to me by mail, and a nice lady called to give me instructions on how to use it. I had to stick 3 gel electrodes on my left side and 1 on my right. There were wires that snapped onto the electrodes and then led to a 6 inch recording device of sorts. There was also a large cell phone/transmitter that I had to keep within 10 feet of myself at all times to transmit the recordings. At first I thought it was kind of neat, but then it got a bit annoying.
The month I wore the monitor I also got another infection on my head. Sleep was hard to come by with having to wear an ECG receiver, a pregnant belly emerging, ECG leads attached all across my body, and an infected head. Every few days I had to replace the ECG electrodes, but even with moving their placement, they began to give me bleeding and itching sores. I was quite the ornery pregnant lady that month. It was during that time I really began to feel like I was a walking train wreck. I started referring to myself as “sickly” and my husband told me I needed to stop referring to myself that way. He was right, but I wasn’t sure how to stop, because it was how I felt.
I began to feel the weight of how exhausted I was with dealing with all of it. Several unpredictable crises had occurred in my life, but I had always just moved on to the next crisis. This time, I was realizing my issues were now chronic, and something I would deal with daily the rest of my life. I knew how lucky I was to have the medicine to help me, a family that loved me, and happiness in my daily life. But I was simply tired of feeling like I was broken, and doubted it would ever get better. I was tired of seeing the doctor. I was tired of having infections. I was tired of attaching a hearing aid receiver every day. I was tired of not being able to go running. I was tired of being reminded everyday of what had occurred in the past, and the physical limitations I now had. I was just tired.
One night my husband and I were chatting about random things about the future. We spoke of where we thought we might live, what we might do, what we thought our kids might do etc. He then asked me what I wanted to do. I paused briefly, and then I melted into tears. I didn’t know what I wanted anymore. Actually, I still had deep down hopes of things I wanted, but I felt so much had been taken away from me that I simply could not believe I could ever say what I wanted again. I wasn’t unhappy with my life, but I felt my time for hopes and dreams had passed.
After that, I started dodging doctor appointments. I felt bad for my son when he got an ear infection, but was relieved I had a good excuse to call and cancel my own doctor appointment. I just didn’t want to go to another doctor, or pay another co-pay, or be told I had another infection. I was done.
I don’t have it in me to be completely neglectful, so I did keep up on my OB appointments. After my month of heart monitoring my OB enforced my going in for my cardiology follow-up. My cardiologist is a very nice, and highly sought after specialist. I have never been to his office when it wasn’t so crowded we had to sit in the hall to wait. Which is why I wasn’t surprised, and my doctor- dodging self was relieved, when I got a call that he was overbooked and my appointment would be pushed back another two weeks.
I have always had the tendency to prepare for the worst and hope for the best. I generally find keeping a positive attitude and thinking through all the possibilities can get you through most anything. I believe that ignoring problems or not being prepared for the possible bad things doesn’t help. As the rescheduled cardiology appointment approached, I began to stop ignoring reality and really think through the decisions I might have to make. Depending on the results of the ECG, I could have a few more months with heart problems that would likely subside after my baby was born, or I would have to decide whether or not to undergo a risky surgery. I wasn’t sure what I should do. In the past, I felt I had faced these kinds of decisions and doctor visits with bravery. But I was too tired for bravery. It was the first time I was broken down enough to admit how scared I was. My hearing aid, knee arthritis, and heart problems made me feel prematurely aged. I didn’t want a pacemaker. I didn’t want to die. I also didn’t want to live my life feeling sorry for myself, and I was afraid another heart surgery would push me over the edge.
A week after my 30th birthday my husband and I headed to my heart doc. As usual, we were forced to sit in the hall for nearly 2 hours waiting. When we finally got to go in, I was exhausted with anticipation. The doctor pleasantly walked in and explained I had the best case scenario. I was stunned! I was so used to the worst happening, I was blindsided by having the best outcome. He told me I could manage my symptoms during pregnancy with hydration, sleep, diet, medication, and exercise. After the baby was born, my symptoms will go away. This round of heart symptoms was not pleasant, but if I managed it well, it wasn’t life threatening. I would not need surgery. He told me I would need to continue to exercise…and exercise hard, to keep my heart in check for the rest of my life. He smiled and teasingly said he wouldn’t mind seeing me again as a social visit. But as far as my heart was concerned--I would never need to see him again. Then he shook my hand and said, “Go live a normal life.” It took all my strength to hold back the tears and utter a simple, “thank you.”
It’s hard for me to believe it was less than a year ago the doctor told me that. My fourth baby was born three months ago and I am no longer having problems with my heart. I have lost much of the baby weight, but the strain from the pregnancy and the extra pounds I still have definitely take its toll on my knee. My hearing aid post had been infection free for several months, but it recently flared up again. As a last resort, I have to take one month worth of medication and if it doesn’t work there is a chance I will need to have the post in my skull surgically removed. It’s not pleasant, but I deal with it. Most days I still go to the gym, but my time spent in crazy emotional thoughts while exercising has significantly reduced. I have faced those emotions and fears now, and they no longer haunt me.
When my cardiologist told me I could live a normal life, he didn’t really notice my hearing loss and didn’t know about my joint problems, so his definition of a “normal” life is likely different than mine. I really haven’t felt normal since I was 18 and my first cardiologist told me I was at risk for dropping dead. But I have a new normal. A new future.
Someday I would love to go on a fishing trip with my husband, own a lake house or a cabin, learn a foreign language, see my kids as happy adults, visit Europe, go on a mission for my church, have a home my kids want to invite their friends to, or just have a house that stays clean for more than 5 minutes. I love studying infectious diseases, and reading nerdy historical biographies of plagues. I dream of going to medical school, becoming a doctor, and traveling with Doctors Without Borders to help those in Africa, or maybe working with Operation Smile. I dream that knee replacement technology will advance enough I can someday run a marathon like I always wanted. The point is—I can dream again.
Sometimes difficult things happen. Sometimes difficult things happen over, and over, and over. I take a lot of pride in the challenges my husband and I have been through. And for a long time, I defined who I was as a person by what my challenges were. But now I know that there is value in not letting our challenges, past, or weaknesses be what defines us.
I have a young family that is my priority, so I don’t know if it will ever be the right time for me to get a medical education, travel, or do any of the things I dream of. But I do I know each day I will be attaching a hearing aid to my head, raising four kids, and working hard to keep my heart healthy. I will likely have a knee replacement before I am 40, and hope I get to keep my skull hearing aid implant. A portion of my time will have to be spent taking care of my chronic issues, but those ailments will not be what define who I am or what I dream of. It’s not a glamorous life, but it’s my own normal. I can now name the things I hope, and dream for. I am no longer crippled by fear of future crisis, or feelings of being forever damaged and broken. That is true triumph to me.
My name is Steph and I have learned to dream again.
*Steph, you are beautiful and amazing and so incredibly brave! Thank you for example of never giving up and for continually triumphing over really difficult things! I love you and am so honored to call you my friend :)
To read more of the amazing "My Name is" pieces, go HERE :)
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