When I was growing up, my parents taught me that I could do anything, be anything, if only I wanted it bad enough, worked hard, and never gave up. These are the lies my parents told me.
It was a hard reality when I was a young adult, and faced the truth – that what I had been taught as a child wasn’t true at all. It took me a long time to realize that it wasn’t my lack of trying, or working, of believing – it was having unrealistic expectations of life that were my greatest downfall, and my ultimate victory.
I had a great “work ethic” – I didn’t mind working 80 hours a week (at no additional pay) or earning advanced graduate degrees and certifications while working full time and having a second job. I had a professor in college who had a sign in his office. It said, “Hard work makes happy people.” I remember reading it, and saying to myself, “I’m going to be very happy, then.”
I had many jobs I liked, and many jobs I loved. I watched and struggled as each one became beyond my physical means. I was born with a disability, although we never called it that when I was a child. I had “a hip problem, and the doctors had fixed it when I was a little girl.” That was another lie my parents told me.
I was in college before I even knew that my “condition” had a name – severe bilateral congenital hip dysplasia, with complete unilateral dislocation. I was in college when I learned that I could never have children. I had just finished college when I learned that my childhood repairs would not last much longer. My mother, who I loved very much, could not bring herself to tell me these things, although she had been told these things when I was still quite young. I learned them after I was 18 and went to my first orthopedic appointment by myself. The surgeon who blurted out the part about not having children assumed I had been told long ago, but I hadn’t ever been told. He started talking about the bone spurs I had been developing, the need to go in and surgical remove some of them that were causing me pain, and how I needed to start on steroid therapy immediately so I could tolerate the pain until I was a bit older, since hip replacements (at that time) only had a life expectancy of about 10 years. To say I was stunned by this news is quite an understatement.
The doctors had “fixed me” through a series of 12 childhood surgeries, that broke my pelvis and restructured it, broke my femurs and adjust the angles, cut notches into my restructured pelvis so I had some semblance of hip sockets, and reshaped my acetabulums and misshaped femoral heads. My first surgery was when I was 18 months old. From that time, until I was 4 and half, I had to wear body casts after each surgery and retrieval procedure. When I wasn’t in a body cast, I had to wear a position brace. I could not walk or use the bathroom in either of these devices. Can you imagine being a toddler trapped in body cast after body cast? But those 12 surgeries gave me the ability to walk. It was a miracle. In my mind, I was “fixed.” If only that had turned out to be true.
What I never knew was that this “fix” would not last my whole life, and that in my early 20s, the wear-and-tear of walking as a child and teen would wear-away every part of my childhood “repairs.” I had no idea how many more surgeries were in my future, or how long each recovery would be.
Being in your mid-twenties and needing bilateral hip replacements was not an easy place to be. I had my first replacement in my late twenties, which simply wasn’t done back then. My second total hip replacement was in my thirties, after suffering an AVN which cut off the blood supply to my left hip and pelvis, causing the bone there to die and crumble away. It required bone harvesting from another part of my body, multiple bone grafts, a modular hip replacement, and months of recovery time and physical therapy. The incision for that surgery was 16 inches long!
I worked so hard throughout my life, but my lifestyle never reflected that hard work. I always had inexpensive compact cars, and I kept my cars for 15 years or so, until the engines finally just gave way. I had to give up the jobs, and careers, I loved so much, because I simply became physically unable to do them anymore. As my body declined, I simply couldn’t do the work anymore, and each time this happened, it felt like a defeat – like a failure on my part. I have to tell you, this crushed me.
But each time, I found a way to get through it, a way to survive it, and found something else I could do with my decreased physical abilities, and most importantly, I found a way to love my new job or circumstance. I had so much joy, despite my circumstances.
My medical expenses over my adult years almost bankrupted me several times, and left me without savings for fun things, like vacations, going to the theater, to concerts, to sporting events, out with my friends, or virtually to anything fun. I never had enough money to pay for my adult surgeries, x-rays, injections, physical and occupational therapy, my medications, my ongoing doctors’ appointments, etc. Before the ACA (the Affordable Care Act,) every time I changed jobs, my disability was considered a “pre-existing condition” and wasn’t covered by health insurance for the first year. My second hip replacement happened while in one of these “pre-existing condition” periods, which meant I had to pay everything myself.
That hip replacement (which included multiple bone grafts and bone harvesting) left me no choice but to sell my home to pay for my surgery and rehab expenses. This meant, when I finished recovering, I would be homeless, unemployed, and once again, without insurance.
Thank goodness a family member stepped in and purchased my house from me, and then let me live there rent-free for a year while I retrained for a new, less physically demanding career. Once I started working full-time again, I paid back every penny for that “free rent” and I made the mortgage payments on the house until I had bought it back completely. It took me 11 years to recover from that surgery financially, but I paid every penny I owed.
I have always taken great pride in the fact that I have never left a debt unpaid. By doing this, though, I lived paycheck-to-paycheck, and did without so many things. I always repeated my grandmother’s words “if you don’t have cash for it, you don’t really need it.” so many times, as I walked away from something I really wanted, but couldn’t afford. Her depression-era advice helped me to avoid debt, other than medical debt.
My money always had to go for some medical issue that wasn’t covered by insurance, or for co-pays, or for out-of-pocket, or for self-paying my own insurance premiums. It went for physical therapy, and leg braces, and rollators, and walkers, and crutches, and $8,000 annual out-of-pocket I had to pay before my health insurance even kicked in each year.
In my twenties, I worked as a therapeutic recreation instructor and martial arts teacher (I’m a 3rd degree black belt in Aikido.) I also taught women’s weightlifting, self-defense, and wheelchair weightlifting. When I was 24, that came to a crashing halt as my physical condition deteriorated, and I was unable to do these things anymore.
I got my master’s degree in education and recreation, and became a recreation specialist at a rec center. I moved up quickly to a recreation supervisor, and then a recreation superintendent. But then my right hip failed. I was out for 16 weeks having it repaired and recovering. (I had enough leave time accumulated to cover the entire 16 week absence, and even found someone who was willing to do my job while I was gone.)
About a month after I came back to work full time, my boss called me into his office and said “You no longer have the physical stamina to do this job. You can’t walk long distances, you struggle with stairs to the stage at festivals, and you can’t do multiday festival work anymore. It is your choice, you can either quit today, or we will fire you tomorrow.” (This was before ADA or FMLA, so there was nothing I could do about it.)
Sadly, this ended my twelve-year career in recreation. Physically and financially, things got much worse before they got better. After my second hip replacement surgery (which required bone harvesting and multiple bone grafts) I decided to go back to school and become an elementary teacher. It only took me two semesters to complete these classes, and then one more semester to student teach.
I worked as a teacher for 20 years, but my physical condition continued to decline, until I had to give up teaching as well. I struggled with the physicality of it for years before I had to give it up completely. Again, I blamed myself because my body was failing.
Now, after losing my mobility, battling cancer for a year and a half (surgery, radiation, chemotherapy, and brachytherapy), I also lost one third of my intestines because they were so damaged by radiation they were no longer functional. When you lose this much of your intestines, you will never have regular bathroom habits, and you can never eat normally again. To say the past 3 years have been difficult is an understatement.
I also have to take a medicine twice a day which costs more than my entire monthly early retirement payment. (I cannot survive without this medicine, and there is no assistance program that covers it.) My disability check isn’t even enough for my basic expenses (housing, food, heat and air conditioning, car insurance, internet, taxes, etc.) I also have to pay for house cleaning and yard work that I am not physically able to do. I watch each day as I have to pull money out of the small investments that were supposed to take care of me in my old age, just to pay for basic expenses and medication. Knowing I will not ever be able to work again leaves me very concerned for my future, but I try not to think about it too much, simply because it will overwhelm me if I do.
I’m also on immunotherapy, which costs over $52,000 per year. Fortunately, I was able to find a medical foundation that covers most of this expense, as Medicare doesn’t cover any of it, and without it, I am completely immobile and homebound, and in incredible pain. Immunotherapy has been life-changing for me.
So I have learned in my adult life that what my parents taught me was not true. (I’m sure they believed it was, but that doesn’t change reality.) I worked hard. I gave it my all. I paid my debts, didn’t buy things I couldn’t afford, and didn’t waste money on vacations, movies, concerts, or nights out with friends.
My spirit has been so close to broken many times, but I’ve always bounced back. I’ve always adjusted and found another way to get by. And throughout it all, I’ve found great joy in everyday life.
I don’t want you to think that even in this financial crisis, that I am hopeless. I have had so many miracles in my life, how can I not rejoice in that? I have survived countless surgeries, psoriatic arthritis, ankylosing spondylitis, a battle with cancer, loss of a large part of my intestines/colon, loss of my mobility, and being medically homebound for the past three years.
I have even come to terms with my latest diagnosis, Myotonic Dystrophy type 2 (DM2), which is genetic disorder that causes proximal muscle weakness around the shoulders and pelvis or a “limb-girdle weakness.” This form of adult-onset muscular dystrophy started when I was around 38 years old, but wasn’t actually diagnosed until earlier this year, when my GI surgeon noticed my symptoms, and had genetic testing done. For 20 years, my doctors had said my increasing weakness, stiffness, and declining mobility was caused by my congenital disability. They never even looked for another cause. It turns out, it had nothing to do with hip dysplasia or my autoimmune disease.
The clinical onset of Myotonic Dystrophy type 2 is in a person’s third or fourth decade of life (which is exactly when it happened to me,) and leads to weakness that typically affects proximal muscles around the shoulders and pelvis causing problems with climbing stairs, brushing and drying hair as well as getting out of a chair. I present with all of these symptoms, as well as the genetic marker. It explains why my mother, who also had bilateral congenital hip dysplasia, was so much more able-bodied throughout her life than I was.
I used to think I could be anything I wanted, I could fix any problem, I could achieve any goal, if I just tried hard enough and didn’t give up. Reality is much different. So many times, your spirit is willing, but your body just can’t do it. I struggled with this for most of my adult life – feeling like a failure because I couldn’t achieve it, no matter how much I tried. I’m here today to tell you that it wasn’t because I didn’t try hard enough, didn’t work hard enough, didn’t believe hard enough. I blamed myself for most of my adult life for a failure I had no control over.
To end my story, I’m going to tell you something a wonderful professor (and dear friend) told me when I was in my late twenties. He said “In the universe, there are a million things you can do, and a million things you can’t do. And in your entire life, there is only time to do a thousand or so things. You can spend your life mourning what you can’t do or enjoying what you can do. The choice is entirely up to you.”
Thank you to my friend and mentor, (the late) Dr. Charles Smith, for those amazing words of wisdom, that have gotten me through the past 40 years of challenges and joy. I wonder if he ever knew how life changing his words were. I truly hope he did.
I do try to enjoy what I can do, and not focus on what I can’t do. Sometimes, that is harder than other times, but I’ve gotten pretty good at it over the years. Life is full of joy, if you just know where to look, and to ignore the (well intentioned) lies our parents told us.
