Читать книгу The Marvelous Transformation - Emily A. Filmore - Страница 11
ОглавлениеTake Stock of Where You Are Now
In your journal, write briefly in response to the following questions. One or two sentences for each will suffice.
1. How easy, or difficult, was your diagnosis process?
2. For how long did you experience symptoms before you started getting answers?
3. What was it like for you when you were waiting for a diagnosis? What thoughts did you have?
4. How did you feel when you finally had a diagnosis?
5. How did your world change?
6. How do you feel, now, when you think back to that time?
The Wonderful Pieces of Divinity I Have Found
Humor is your friend.
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Appreciate the little things.
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Sometimes your mood comes down to a choice.
Do you want to be happy or sad today?
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People help you as a way of showing love when they feel helpless against your disease.
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You may not control your disease, but you control how you think and feel about it.
Therefore, you control your experience.
My road to autoimmunity is probably similar to yours or your loved one’s. I had countless environmental sensitivities as a child. Temperature changes, humidity, and barometric pressure changes affected me, as did chemicals in shampoos and detergents—even fabrics. I had respiratory infections, strange rashes, and excruciating muscle pains. I also found myself to be fairly clumsy. Aside from all those pesky inconveniences, I was a normal, physically active, energetic kid, full of life and zest for adventure. Does this sound familiar?
We had traces of autoimmunity in our family—a bit of arthritis and psoriasis—and there were various forms of cancer, but nothing so unusual as to indicate we were at higher risk than the general population.
In my second year of college, I contracted mononucleosis. Prior to being diagnosed, I was put on antibiotics, which triggered an allergic reaction that caused an all-over-body-rash the likes of which few have ever seen.
This event, the raging mononucleosis, was the final catalyst that took me from having an overly sensitive body, which made me a candidate for problems, to someone whose immune system went undeniably haywire. My immune system forgot what it was supposed to do (protect the body from germs) and went on the offensive (attacking itself) instead.
Over the next eight years, I saw numerous doctors and had many tests and various diagnoses before we settled on what they believed was the correct single diagnosis: juvenile-onset dermatomyositis.
The snippets of information I received from the pre-diagnosis doctors were big words like lupus, multiple sclerosis, muscular dystrophy, and cancer. During that time I was alternately called delusional, a hypochondriac, a liar, and an insomniac, or they said that I had only fibromyalgia—just to name a few. In the years since, and as understanding has increased, the qualifier “only” has been removed from any mention of fibromyalgia.
Have They Given You Meds, Meds, and More Meds?
I felt like a guinea pig being put on medicine after medicine to treat, or rather diagnose, the symptoms of the disease. More meds were needed to treat the side effects of the initial meds, and still more to treat the side effects of those. I saw some wonderful doctors as well as many others who clearly should have chosen a different career.
As a child I knew a woman who died in childbirth from undiagnosed lupus, so I was scared out of my wits. The prognosis for someone with lupus wasn’t good, yet I didn’t feel like I was supposed to die. The doctor my parents took me to said he wasn’t sure what was wrong with me. Possibly it could resolve itself and turn out to be minor. In any case, he wasn’t going to diagnose me because of my age.
This was hard to digest. Was it that I wasn’t ill enough to warrant a diagnosis? Or that it wasn’t clear? Was it just his way of saying he didn’t know? My stepdad would helpfully point out that the lack of definitive answers from doctors is the reason they are said to be practicing medicine.
I spent much of my twenties feeling like my head was halfway in the guillotine, waiting to be shoved all the way in so that someone could deliver my death sentence and lower the big boom.
In teaching hospitals I was poked and prodded by thirty-plus medical students who said things like, “Wow, that rash is really cool!” Never mind I was a human being, in pain, scared out of my mind, and wishing I could be anywhere but here, and have clear skin without a painful, oozing rash (a major indicator that whatever my ailment, it was in full form). Could it be fatal? Thanks so much, dear, young medical student, for telling me how cool this rash is.
Instead of saying that I just smiled and listened—and then cried when I got to my car. If you’ve ever visited a teaching hospital, you may have experienced the same sort of insensitivity. Did you find it hard to remember that they were young and immature and didn’t mean to dehumanize you? I did.
I had full-fledged doctors who, by the way, didn’t have my disease, tell me to buck up and get over it; it wasn’t that painful. How could they possibly know? They implied I was exaggerating when I said I couldn’t walk up a flight of stairs; maybe it was all depression and that I should stop looking for an excuse to be sad; or there were people much sicker than me and that I should be grateful I didn’t have a terminal disease like the person they saw in the last room.
Why did people who didn’t live my life feel they had the right to tell me how I should or should not be feeling, or how much pain I should or should not be experiencing? I wondered why these people had gone to medical school if they already thought they knew everything.
Raw Emotions During Your “Limbo” Time
If you remember the emotions you felt while going through your “limbo” time—the time before diagnosis—know you are in good company. Many, perhaps most, autoimmunity patients go through years of misdiagnoses before getting the correct one. It’s upsetting, frustrating, and scary.
What a relief it was to finally have an actual diagnosis. I wondered if it meant I was glad to be sick, but I realized it wasn’t. I was just happy to have answers so I could finally move forward.
Before and immediately after the diagnosis, my life changed dramatically. My education and jobs were affected. I was fortunate to have some understanding bosses who allowed me flexible hours, or coworkers who picked up the slack when I was exhausted. When I knew I was getting close to using up sick days, I would look for a new job; this usually happened around the six-month mark. Repeatedly.
My resume from the first couple of years after college looks a bit like hopscotch. I had five different jobs between January 1998 and April 2000, and it wasn’t my work ethic. I outwardly blamed it on needing to find myself, but my dark secret was that I was always one step ahead of being fired for absences. If it wasn’t one aspect of my illness, it was another; I started thinking I was making it up myself. I was twenty-two years old and barely able to function.
The Effect on Your Family
People talk about how chronic illness tears families apart; this can certainly be true. It is stressful to feel sick all the time, and I know how stressful it is for my husband, Scott. Even on days when he has a project due at work, I have to call him, crying about how badly I hurt and how I cannot get out of bed to make lunch for our daughter. He comes home to care for us, despite the inconvenience.
Or the days when there isn’t anything wrong except I am so fatigued that lifting my arm feels like a full workout. Scott steps in without fail and takes over everything in the house. Consider the heap of medical bills we incur every year that he somehow finds a way to manage. Even though we have insurance, with deductibles—which I’ve used up by January each year for the past eight years—we are never without an overwhelming amount of medical debt.
There are times I’m sure he would just like to come home from a long day at work to a normal stay-at-home wife and mother, a clean house, and a ready meal. I bet he wishes he didn’t have to do the dishes because my hands are too weak and sensitive to the hot water; carry the laundry up the stairs or vacuum because I am not strong enough; haul out the trash; or perform any of the dozens of chores I am unable to do even on my best day.
I watched Scott go through our two miscarriages. Yes, they were likely due to autoimmunity, as the body tries to eliminate the fetus in utero, attacking it and cutting off its flow of nutrients because the body sees it as a threat to my health. It’s hard enough for me to go through a miscarriage, but watching my love lose his children at the same time, too, and knowing it is because my body failed to carry them—there aren’t words for the pain and the guilt I feel.
Sage, our little girl, is a miracle. She is here by the grace of God, my sheer will, a dedicated high-risk prenatal doctor, my acupuncturist, and some immunosuppressant drugs. Together we coaxed and cajoled my body into holding on to her and bringing her into the world—safely.
Loved ones of people with chronic diseases take on a lot more than they bargained for. My husband knew I was sick, and he chose to love me anyway. I didn’t sugarcoat it when we were dating. I didn’t yet have a specific diagnosis, but I told him what life might be like with me. He chose to be with me anyway. He agreed to be there for me when I couldn’t take care of myself, and he lives up to that promise every day. It is not easy for me to watch him make those sacrifices.
Expect Everything to Be Affected
Even prior to diagnosis, autoimmunity played a key role in my relationships. It affects everything, from your everyday decisions to your emotional stability and trust in yourself and your partner—even your sexual relationships. A former partner would carry me up the stairs of my apartment because my hips and legs were so weak I would have had to crawl if I’d been alone. You don’t know vulnerability until you become that dependent on another human being. At the same time, you are also gifted with the beautiful opportunity to feel loved and cared for on a different level.
It can be hardest for your parents. I hear my dad cry on the phone at any health news, both good and bad. I watch my mom wrestle with worry over every little test and appointment. As a mom myself, I know how helpless my parents must feel watching their “baby” in pain and not being able to fix it. They, too, have done everything they can to help, sometimes to the point of smothering me.
Friends have played a huge part in enabling me to continue living in a way that resembles normalcy. Yet they are the first to suffer the consequences of broken promises and broken dates when I cannot go through with plans.
Autoimmunity doesn’t just happen to the person who’s blood tests, magnetic resonance imaging (MRI) tests, electromyograms (EMGs), and biopsies turn up positive for the disease. Autoimmunity also happens to families, friends, and coworkers. With this book, I want to honor not just “us” who are the patients but “us” who are the people—the community—who help us patients keep going.
I have often wondered whether death would be a merciful escape and hear this from other patients as well. Perhaps you have even been there yourself. But I promise those moments are fleeting. People around me have helped me decide to keep going in the darkest of hours, and I hope this sharing of my experiences will help you decide you can keep going as well.
What “You Create Your Own Reality” Means
As hinted at in Neale’s quote, the idea that we create our own reality has been misinterpreted to imply that if only we are strong enough, we can cast disease from our bodies through thought alone. Anyone who has suffered from autoimmune disease knows the callous ignorance underlying such claims. What creating your own reality really means is to cultivate your ability to create and take responsibility for the mental environment within which you operate, thereby ending your emotional suffering so that you can face your disease head-on—with acceptance, strength, and laughter. It is not meant to cause you guilt or shame.
When I stop feeling angry about my disease, my whole world changes. It doesn’t mean that I am physically healed or that the disease is gone, it means that I find ways to appreciate my life as it is. Sometimes I have to put “mind over matter” and be happy with my life, even if my body isn’t performing the way I wish it would.
There are ways in which my life has been enhanced because of my disease: I have become someone I like much better than the person I would have been if I hadn’t been so challenged; and I have established a deeper connection to divinity because of my experiences with this illness. Now I understand that having a shifted reality (diagnosis) doesn’t have to equate to suffering (a decrease in the quality of my inner landscape); I can choose happiness.
This book won’t heal your disease. But it will help you heal your ideas about the disease and find ways to love your body and your life, sometimes despite the disease, sometimes in celebration of it—and often through humorous reflection on it.
Creative Tips for Empowering Yourself
• While the diagnosis stage is scary, remember you are still the same person you were before. Whether your diagnosis is recent or not, remember you are not your disease; you merely have it. Say, “I am a person with these symptoms,” or “My body is healthy, whole, and happy!” By doing so, you maintain your own identity and remember that your life is not controlled by illness.
• Find one thing to laugh about today.
• Pick one thing you did today, however small, that you couldn’t do yesterday and say “thank you” to your body.
• Replace anger with acceptance and gratitude. Say, “It’s okay that I can’t do everything I want to do; I will celebrate the things I can do.”
• Repeat after me: “I can be happy no matter what is happening to my body because I am a beautiful, wonderful being, and I am alive!”
Caregiver Tips
• For any parent, spouse, significant other, or close friend, the beginning stages of diagnosis are scary—know you are an important part of your loved one’s journey.
• To be supportive of your loved one, listen to him or her, accompany him or her, be understanding, and realize you don’t have to “solve” everything to help.
• Just being there is often enough.
Create Your Own Marvelous Transformation
Take your journal and spend a few minutes reflecting on what you’ve just read. Let the following questions guide you in processing your own truth and emotionally charged experiences you may have been reminded of through reading my story. Thinking and writing about these ideas and any positive insights you have gained from this chapter will help internalize and solidify your own transformation:
1. What situation or example in this chapter resonated most with you?
2. When faced with similar situations, how do you feel, act, or think?
3. What would you most like to remember from this chapter?
4. What can you do going forward to view your diagnosis in a more positive light?
5. How do you feel, now, when you think back to the time of your diagnosis?
6. With your new perspective, how will you deal with feelings of unfairness from now on?
7. Look back at the notes you made before you read this chapter. Have your thoughts changed after reading the chapter? If so, how? What realizations are you most grateful for?
