How To Get Past Adversity, EmPower Hour for Proud To Be Latina
Changes in weather are tough on my body. With all the auto-immune diseases I have, something is bound to flare up. I find myself saying, “I don’t feel well.” “When will I feel better?” I look at others who seemingly are healthy with envious eyes. Because I have a hard time sleeping (usually due to fevers, swollen joints, aches and pains), in the morning my first thought is, “I didn’t sleep enough,” “I have so many things to do, and I’m terribly tired,” “My body aches, when will I feel better.”
I’m currently reading “Daring Bravely” by René Brown. In it she discusses how we live in a time where we see things from a perspective of scarcity—I don’t make enough money, I haven’t gotten a promotion, I don’t work out enough. Dr. Brown’s words struck me because I am constantly considering things from a point of view of scarcity. I chastise myself for all the ways I judge that I am lacking. I view the world, and my place in it, from a deficient perspective.
Talking with a good friend (thanks Nikki Kimbrough), we pondered how powerful it is to shift your perspective from one of scarcity to one of abundance. Instead of bemoaning your life, taking the time to appreciate what you have. Simply choosing to see the glass as half full, instead of half empty, can make an immense difference in how you see the world and your role in it.
As I start this new year, I am choosing to change my perspective to one of abundance—embracing what I have as enough, looking for the good in what I’m living through. Instead of complaining about my medical problems, I’m choosing to be thankful that I have access to doctors and medicine, that supportive people surround me, and that I’m alive. I have faith that even bigger and better things are coming my way.
I will be a guest on Preferred Company Radio, on Tuesday, 10/13/2015, 9:10 am EST. We will be discussing, “How a routine hospitalization put me in a coma.” Hope you can tune in, www.preferredradio.com and click on the listen live banner or in Ocean County, NJ tune into 1160 AM WOBM. Or download the free App search for Preferred Radio.
I will be a guest on the Maggie Linton Show on Sirius XM Radio on Monday, September 21, 2015 at 11 am (EST). The show will be dedicated to health issues. I hope you can tune in.
I used to love the exercise slogan, “No pain no gain.” To me it meant good things come through struggle. This motto, which I adopted, often posed a problem as I underwent rehabilitation for my brain injury. I wouldn’t take necessary breaks, or I pushed through the pain only to cause further injury. But most importantly, this motto helped me to not give up, to push until I healed from the injury, to lose the weight I gained during my recovery, and to learn how to live a happy and grateful life.
But recently I’ve been feeling like a quitter. I put on some weight after taking a long course of steroids. Because I was feeling so lousy, I made poor food choices and that only compounded the weight gain. Now I’m having a difficult time trying to lose these extra 25 pounds. I’m embarrassed in my appearance and in how I look in my clothes. I’m choosing to avoid social events, cancel outings, and I’m starting to think lesser of myself. The weight gain reminds me of a bad time in my life, making me want to avoid the whole thing.
I’m sharing this because I know I’m not the only person struggling with wanting to quit at something. If you’re feeling overwhelmed with health problems, a job search, or a bad relationship, don’t give up. Decide what you want to do, ask for help, have faith, and you will find your way through the difficult situation. Quitting is not an option. I, for one, will stop making excuses and put in the hard work that is required. I’ve done it before and can do it again.
I am a storyteller by nature. Telling good stories helped me covey my point to Assistant District Attorneys, judges, and juries when I was a criminal defense attorney and ultimately, obtain my clients favorable outcomes. It has made me popular amongst my friends because I tell funny anecdotes (at least I try to find the humor in all situations).
After the brain injury, I had to make sense of what happened to me. When I told the story to strangers or doctors, it helped me process my new life circumstances. It also helped me to see that I was somehow managing and coping even though I often felt desperate and hopeless. Yes, the story was horrific—doctors had injured my brain and body. But it was also doctors that were helping me recover. When I interacted with my new doctors, they listened attentively to my story. They didn’t stare into their computers or write in a chart, they stopped and made eye contact, acknowledged the wrong that had been done. In a sense, I stood out as a patient. I’m sure it helped that I came prepared with a “medical resume.” I took meticulous notes from all of my appointments because I knew other doctors would ask for the results. I wanted the doctors to help me get better so I provided them with as much information as possible. But I also expected them to hear my story, all of it, including how difficult it was to be living through this recovery; to have had my life stopped in its’ prime.
All patients want their stories of illness to be heard by their doctors, nurses, physical therapists, etc. I knew there was a need for better communication between doctors and patients. When I started looking to return to school, a dear friend recommended the Narrative Medicine (NM) master’s program at Columbia University. I was excited at the prospects, but realized that most of the students were already in the medical field or on their way to medical school. This didn’t deter me; I knew I could learn many things from the program and in turn, hopefully, impart them with the patients’ perspective.
My biggest take away from the NM program is that it wants to improve the health care system in general. It is doing its’ small part by helping foster better dialogue between clinicians and their patients. In the workshops that the clinicians take, they learn the broader guiding principles of NM, and then in smaller groups they practice attentive listening and close reading. They read short pieces of literature or a poem and then have a discussion. During the discussion, the participants realize that everyone’s interpretation is different, just like when a doctor hears a patient’s story it isn’t necessarily what the patient meant for the doctor to hear (we listen through our filter, our biases). After the discussion, there is a writing prompt, and the clinicians do reflective writing. We express ourselves and communicate differently through our writing than we do through speaking. It is cathartic to write and can be therapeutic for the clinicians to write about a particularly tough encounter or occurrence with a patient.
At my graduation dinner, my advisor, Craig Irvine, one of the program directors, paid me an immense compliment. He said the professors had learned from me; that I had taught them more than any other student who had gone through the program. It made me smile to realize that they had been attentively listening in class, practicing what they preached. I so enjoy facilitating NM workshops with clinicians, and I look forward to doing similar work with patients in the near future. NM helped me heal some wounds, further repair my interactions with physicians, and it empowered me with hope. I had lost this hope at the hands of doctors, but working with them, I’ve gotten it back.
As a parent who lives with multiple chronic illnesses, a seizure disorder, and other medical complications, I have had to grapple with the question of how much should I tell my daughter about my illnesses and when. This occasionally puts me in conversations over the larger question of how much should children be told about a parent’s illness.
This is a personal issue for every parent, but for Terrence and I, there was no doubt we didn’t want to lie to Isabella. One lie would lead to another and soon enough we weren’t going to be able to keep up with our lies. We decided to give her age appropriate pertinent information when it seemed most important.
For example, a couple of years ago, I had a grand mal seizure while I was out for a run. I blacked out and fell on the concrete. I had a large purple hematoma on my forehead and right eye area. I had a gash in my right knee that needed stitches. I refused to go to the ER but called my PCP and went for an outpatient CAT scan to make sure I didn’t have any bleeding in my head. When I came home, Isabella started crying when she saw me (yes, in retrospect, I should have gone to the hospital, but I have an aversion to ERs). Terrence and I had to sit down with her and explain that mami blacks out unexpectedly and since I was outside and running, the injuries were worse than normal. She already knew that I blacked out, but had no idea of what that meant. Isabella was 4 years old. I covered her eyes to give her a sense of the disorientation I felt, and told her it was like getting a horrible headache, falling immediately asleep, and not being able to control it.
Isabella could better understand what mami was experiencing when I was lying on the bed or sofa and said, “I didn’t feel well.” It worried her more not to know why I would be speaking and then suddenly I wasn’t. Like any child, she thought it had something to do with her, but of course, it didn’t; when I needed her to make less noise, it was because I felt ill, not because she was being too loud.
We asked Isabella if she had any questions, and she had plenty. We answered them the best we could. She was very worried that I was going to die, both from the seizures and from one of the auto-immune diseases (if I catch a cold, it easily gets complicated and I end up in the hospital). We got Isabella counseling and it seemed to help.
A few weeks after the grand mal seizure episode, when Isabella was still just 4 years old, we taught her how to dial 911 (specifying that it is 9-1-1 and not 9-11 so as not to confuse her). We told her to only call if she couldn’t wake me up or if I fell and hit my head and was disoriented. During this time, we talked about other emergencies, like fires or an intruder. We told her to stay on the line with the 911 operator until they told her to hang up, and that you never call 911 as a joke; they are there to save lives. Isabella was too young to remember our address but she could remember her apartment number (now, of course, she knows her full address). And I told her to tell the 911 operator or the paramedic that I have a special bracelet (a medic alert).
Isabella is now 7 and we occasionally review what to do in case of an emergency. She feels empowered with knowledge and an action plan.
When we’re out walking, running errands, or doing an activity, she will occasionally say to me, “Mami, your eyes look glazed and tired. Maybe you’re doing too much. I don’t want you to have a seizure. Let’s just go home.” It breaks my heart that she has to worry about me, but I’m glad that there are no secrets between us. My mature big girl is aware that her mami has some limitations even if I try to ignore them. That’s one more advantage of telling your children about your illness, they’ll look out for you.
We communicate through sharing our stories with others. We need to get our point across and what better way than to tell what happened to us, to explain what we’ve accomplished and what we need help with. There is a lot of research being done into how businesses can sell more through sharing stories instead of making powerpoint presentations, Zack, P.J. (2014, October 28). Why Your Brain Loves Good Storytelling. Retrieved from Harvard Business Review database. Businesses sell more if they can communicate through stories how they’ve helped their customers, how they’ve changed people’s lives.
I recently helped teach an interdisciplinary class at Columbia University Medical Center. I taught Narrative Medicine to medical, dental, nursing, occupational therapy, and nutritional education students. When we started the course, the students were shy claiming they were afraid of the course (despite their demanding workloads) and didn’t have anything to share. Once we delved into the readings and they got an opportunity to write and share their stories, both they and I were impressed with their narratives.
Their stories were compelling and interesting; they gave us (the listener) a clear picture of who the person was without the speaker having to give us their background. The stories also touched each of us in a different way, providing us with what we needed at that moment.
Being in the midst of writing about my past and surviving the brain injury, hearing these strangers’ stories gave me much needed perspective. I am always in awe of other people’s lives and background, and I get much needed inspiration when I get a glimpse into what they’ve been through. Most of my students were foreign so the narratives they shared greatly varied and were deeply rich.
Don’t be afraid of sharing your story. You never know how it can affect someone else. It may be what compels them to change career paths, return to school, try to get pregnant or adopt, or saves their lives.
The winter is my least favorite season. It causes many of the auto-immune disorders I have to flare up. During the last few weeks, I’ve had low-grade fevers, my joints have been hurting, I have a body rash, and I’ve had low energy. I had to get painful injections to the web spaces in my hands, which caused hematomas and has weakened the strength in my hands. And I’ve caught my daughter’s cold. In a nutshell, I feel like crap.
When I get like this, it slows down my productivity on my projects, and I can’t exercise like I should. I blame myself and I start feeling like a slacker, worthless, and guilty. It’s not until I see another person struggling with similar circumstances and wanting to do more than they should, that I get some perspective on my own situation.
I can only take it one day at a time; I don’t know why I let myself stress about what’s due two or three days or weeks out. I already do more than I should. Unfortunately, I can’t (or I refuse) to stay home and “rest.” Not that there’s anything wrong with it, but I rested for far too long after the brain injury while my brain slowly healed. On any given day, I take stock of what I have to get done, and I put the absolutely necessary things at the top of the list, which always entail caring for Isabella. Thankfully I have a supportive husband who has my back at every turn. I can’t imagine getting through most days without his help.
It’s when things are tough that I mainly have to remember to be grateful for what I have. I could have it worse, and I try to be mindful that things will get better. I keep my faith, and I pray for strength and health for everyone who needs it. This chronic illness journey is a tough one, filled with ups and downs (lots of downs), but I refuse to let it beat me.
I have heard plenty of “no’s” throughout my life. After the brain injury came the most devastating negations, “No you will never return to the practice of law,” “No you will never be physically active,” “No you will never have a child.”
Granted I was substantially behind the curve when I started therapy, not being able to take care of myself and being placed on about two dozen medications to stabilize my erratic symptoms. I’m sure the doctors’ denials came from a place of experience and caution. But I couldn’t accept “No.” I had overcome too much to get to where I was in life for me to adopt the doctors’ prognoses of my new life.
I worked hard towards the goals that I had (6 years of inpatient and outpatient rehabilitation), getting my legal license back and returning to volunteer work. I attended additional vestibular therapy so as to improve my balance and ultimately took up running, completing several races with the help of Achilles International guides. And although it took a year to convince the doctors and then to wean myself off my medications, Terrence and I were blessed with a healthy baby girl (Isabella just turned 7 last week).
When I was told “no,” I didn’t accept it. I kept trying, I found a new tactic, I asked for help, I kept a positive mindset, and I didn’t give up. If I have a calling to do something, if I am inspired, then I patiently keep plugging at it, while trying to have the denials “roll off my skin.” As a person of faith, I have learned to trust that God does things on Her/His schedule, not mine; that I will not be given all the answers. I am grateful to be blessed with a calling or a direction (I want to get my license back, become active again, have a child, share my story, write a book). As to the particulars of how I will get there, how the “Yes” will manifest itself, I do not know but I trust that it will come.
Believe that the “no” will turn into a “Yes.” Visualize it, be optimistic, and don’t give up. Yes, Si, Oui…you’ll get the answer you need when you need it.