I received the following piece yesterday from Stephanie Casey of Fountain Valley, Calif., and decided to put it up straight away (with apologies to those still waiting to see their pieces run.) Stephanie writes that only 19 months ago her dreams for her family’s future were shattered when she called the doctor to ask about a seemingly mild symptom. What struck me about the way she tells her story-beyond her courage-is her attention to the practical details. She deals with her crisis by figuring out how to make the most of what she has. Her reaction makes her story inspirational and I am really grateful that she shared it.
In January 2008, my husband and I were making big plans. Our daughter was about to turn two, and we were thinking about making her a brother or sister. We were finally looking to purchase our first home, and I was enrolling in a graduate program part-time.
Our lives were great, moving along according to plan. Then one morning, I woke up with the left side of my face numb. I wasn’t paralyzed; I just couldn’t feel the left side of my face. I blew it off for a few days. I’d had the flu the week before and I imagined it was a sinus problem. When it had not gone away after a couple of weeks, I called my doctor, and she sent me over to the ER, to make sure that I had not had a mini-stroke. As a 30-year-old woman on the pill, a stroke was not totally out of the realm of possibility. We dropped our daughter off at grandma’s at 6:00 p.m. on a Monday night, thinking we would be home by 10:00 p.m. or so. Little did we know.
At the ER I was immediately taken into a room. Apparently a possible stroke is something they don’t mess around with. We were told by a physician’s assistant that my fifth cranial nerve appeared not to be functioning, and that it was probably a sinus problem, so he was going to send me home. However, the neurologist attached to my medical plan decided to do a CT scan before releasing me. An hourlong wait and a cold scan in a big machine later, we were approached by the head of the ER. She said she was going to admit me because something had been on my CT scan and she wanted to do an MRI in the morning. We were still laughing, thinking it was a mini-stroke from being on the pill. I told my husband that I was going to have to start employing abstinence as birth control instead, and we made a joke about multiple brothers and sisters for our little girl. He went home and I settled in for the night.
After a bad night’s sleep at the hospital, I had my MRI. Then in walked the person who changed my life, my new neurologist, who dropped the bomb on my husband and me: I had multiple sclerosis. Sitting in that room, I felt like I had been run over by a train. The next week or so was a blur. I was attached to an IV steroid drip five hours per day for five days just to stop the current inflammation. (Luckily, they could do that at my home.) I began researching medications and learning about the realities of my disease. Suddenly, little problems that I’d had for years made sense. Stupid things, like a tingling foot for a week or the weird ice-water-is-being-poured-on-my-back feeling I get when I arch my back, now had an explanation. I was terrified. After a longer meeting with my neurologist, I had a prescription and some tips on managing my care.
Suddenly the large house we were looking at (brand new, in a desert-ish community, and within our price range but a longer commute for my husband) seemed like a bad idea. The average temperature there was in the high 90s for five months of the year, and people with MS aren’t supposed to get hot. The 45-minute commute was fine, but we’d be living more than an hour from my in-laws. They were our only support structure who could watch my daughter when I needed to have a steroid treatment, or was hospitalized, or had an attack.
The automatic saving plan we’d set up for college and retirement went out the window when we learned that the medication, a self-injectable nightmare, would cost $2,500 per month, of which we had to pay 30 percent, a staggering $750 per month. The plans for another baby slipped through my fingers like smoke. We can never know how long I will be healthy and able to care for my children. The average length of time for an MS patient from diagnosis to wheelchair is 15 years. I can’t see knowingly putting a child into the position of having to care for her disabled parent. We also can’t know how long I will be able to work, or what my future medical costs will be. We can only assume that they will be astronomical under the current medical system.
We ended up in a smaller house near the coast and only 10 minutes from our family-not the original plan, but we love it. We set up a home office in what would have been baby number two’s nursery, and I continue to work from home, providing me with a small steady income with health insurance. We plan family vacations in not-too-hot places that require hiking, walking, and being active, because I want to do those things while I still can. I want my daughter to remember me active and healthy. You can often find us in the early evening when the sun is going down playing soccer in the park or going on bug-hunts in the foothills. My husband has been my rock, and I am grateful for him every day. Our life is different, but not worse. I consider myself lucky. I have a relatively mild case of MS and I’m getting the best treatment possible. The most important thing, I try to remember, is that this disease does not define me or my life. I can either let it defeat me or I can let it make me a better person. I have chosen to be a better person because of it.
Stephanie Casey is a part-time data analyst and a full-time stay at home mom, living in Fountain Valley, CA. She has relapsing-remitting multiple sclerosis, and is currently in remission.
Photograph courtesy of Stephanie Casey.