Beating The Odds (On Life, Sickness and Love)

Beating The Odds (On Life, Sickness and Love)
Written by Jacqueline Taleon

I was diagnosed with lupus when I was 24. I was  a new mom with a full time job trying to balance work and life at the same time. My plate was full and the last thing that I needed was a diagnosis with an expiration date .  By the time I was 27 my lupus has snowballed into pulmonary arterial hypertension, scleroderma, mixed connected tissue disease, hypothyroidism and Raynaud's phenomenon . On top of it all my middle child was diagnosed with autism in between all this. I was completely overwhelmed with my life. I was scared , worried and confused about my situation . It took a toll on my physical activities, my marriage, my creativity and my self worth. I would look at the mirror and see a shadow of my former self and it was upsetting. 

My first 10 years was a struggle but nevertheless it gave me hope. Because my condition worsened, doctors were giving me a ton of prognosis , one after another . I was given six weeks, one year, five years tops . I didn't know whether to prepare myself for life or death and the physical suffering was unimaginable. By the time I was 29 I couldn't even go anywhere without my oxygen tank . I had bruises all over my arms because of constant blood work  .  I was miserable and angry . I was painfully aware that I was existing on borrowed time. 

Then one day I was hospitalized for heart failure . As I laid in the hospital hovering from consciousness to sleep I heard the doctors telling my husband and my mother that I might not make it through the night . Right there it hit me. I can either be dejected and hopeless and just wait for the inevitable or I can get up and push myself and make the most out of whatever time God allows me on earth . I was determined to make it work . Praying on that bed , I asked God to give me a chance to see my children grow and I swore if he did, I'd make a change of attitude.

The promise of change was not easy . I was determined to push but my disease kept knocking me down . I'd be in the hospital almost every other month like clockwork. I was on first name basis with the EMTs and 911 respondents . I had pulmonary embolism twice and was in a coma with breathing machines . I'd suffer from a violent bout with Stevens johnsons syndrome that made me blind for almost a week and looked like zombie for a good year because the antibiotic " burned" my face .  It was an uphill fight, and there were days that I couldn't even see beyond or what the future would be .  My marriage was falling apart from the pressure of my condition, my attitude and just so much unforeseen circumstances that I felt was spinning out of control. 

As I sat in my backyard one day sobbing and feeling sorry for myself , I prayed . I looked back at all the suffering, the loss, the pain . Then I realized, in spite of everything that I have gone through, I'm still here . I am breathing, living, alive .  They gave me all those dates to measure my timeline and I have surpassed it all. 

I implore everyone who has a loved one living with a medical condition. It's not easy and nothing is ever simple. Whether it's lupus, cancer, depression, autism , ADHD...The list goes on and on . And it's not only for the people around you , the person coping also needs to fathom what they are going through and it's not an easy thing to grasp for us as well . Here's a little bit of advice to both parties. I'm no expert but I only write from experience . 

    1. Educate yourself.  Just looking and judging a person on the basis of physical or mental strength or weakness is not enough . I've had people tell me or my family " she's not sick! She's faking it . She looks well in her Instagram photos." To those people who say that let me ask you a question. Do you post horrendous pics of yourself in your profiles or do you usually put your best foot forward? I have tons of sick pictures in my collection that are severely graphic and painful to look at. Do I want to be remembered that way? No I don't. I want people to look at me beyond lupus . Sorry to be so blunt but comments like that stems from ignorance and lack of respect for the struggle of people. To extend some sort of empathy ,you have to educate yourself on the nature of the condition... This Is a good lesson not just for people who have to deal with disease . Educate yourself on everything. Read the fine print and try to have a clearer understanding on situations before you open your mouth to praise or condemn . And to the one with the condition, read up . Make smart choices , surround yourself with people and information that can help you and stay away from negativity . You owe it to yourself to give your heart some peace in the midst of your fight for survival. 
    2. Forgive yourself. Those who find themselves in a situation where they have to deal with ailments are usually embroiled in psychological and physical struggles .Pain brings a lot of raw and passionate emotions. One day you are managing well, the next you are angry or screaming in agony . Sometimes you drop words or statements in the heat of the moment or feeling defensive as to why it's so hard to function normally. I've always tried to defend myself before . Always felt the need to explain why. It took me years to learn that I don't have to explain every little thing for people to understand what I am going through . Sick people are sensitive people. If you try to belittle their struggle chances are you're gonna get chewed out. I've dropped a lot of scathing words to people who have questioned my disease . Things I regret. But at the end of the day, I will always try to make amends and hope for a little bit of understanding . And I forgive myself because it frees me from hatred and self loathing . My body and mind is dealing with enough pressure . If people are just not willing to see or listen, believe them.  Walk out of their lives if you have to. You have enough on your plate than to deal with people questioning your battle.
    3. Be brave. This goes hand in hand . I always try to be brave even when I'm scared . Other times I even fake my courage for the sake of my loved ones . I try not to fall apart when I can but I also give myself allowance when fear grips . The practice of courage is a solid exercise . I take chemotherapy infusions for my disease specifically for lupus . 5 years ago this drug was not yet available so I was getting chemotherapy from cancer meds. After 8 months my body completely broke down and my blood pressure dropped drastically . I could hear the machine drop and I could feel my body shut down and some of the nurses I've gotten to know burst into tears telling me to stay awake and fight . As I slowly was starting to slip out of consciousness I heard the doctor say " Her pressure is 39/60. She hasn't passed out yet but one more drop her organs will fail." In those moments , you have a choice. Panic or self control. I remember shutting my eyes and just screaming in my head no way . Not today . Someday but not today . Prayed over myself and claimed that my body belonged to the most high and for peace to just come over me whatever the outcome may be. Instantaneously I was covered in a blanket of calm and I could hear my doctors say " Good job, kiddo . Fight this !"  I have lived to see therapy specifically for my condition . I am grateful to God and all the men and women he uses in science to help people like me. But at those moments when it counts keep your head above water. It also helps when your loved ones say you're gonna be ok . It gives us security .
    4. Love. In a world full of disease and confusion, love covers all . Love your tribe. Love your friends. Love your children, the people who are hard to care for, people on the other side of the earth who have to contend things you probably don't understand . Like MLK said, hate is too great of a burden to bear. Love conquers all... Mountains of misunderstandings; crosses borders you think that's impenetrable . It shines bright and feeds on the souls of not only the physically or mentally sick but those who are blessed with health as well.  I feed on the love of my family . It pushes me to chug along the best I can even when things get rough . 
    5. Refresh yourself and let goodness flow. Both patient and caregiver / loved one can benefit from taking a break. Stop and smell the roses once in awhile . Take time to shower your ailing friend or family member with a card or a phone call or drop a line or two to show you care. It doesn't have to be a grand display of affection . It's the little things that count . 
    6. Understanding. You don't have to feel what  I am feeling coz chances are you wont. We will never fully comprehend what goes through a person's trial but we can try to empathize by understanding what they may be going through to a certain extent . Respect the journey of a struggling person . There are no guarantees in life and someday you may find yourself in a situation where you need them to understand you too. Do not judge someone who is in need of understanding . 
    7. Humor. Praise God more often than not when I am in the ICU I am conscious . The times when I'm not and I wake up to all the heavy equipment connected to me can get daunting and downright scary. But once I'm somewhat aware I try to find humor in every situation . I'm probably the noisiest ICU patient coz I'm always cracking jokes with my caregivers .ICU nurses are assigned to you all day we are laughing all the time . Even with my visitors I try to joke around to lighten the heavy mood . Not just for them but for myself . Laughter truly is the best medicine . 
    8. Trust the process. Easier said than done because dealing with sickness is frustrating for both parties... The one going through it and the one standing by. Make informed decisions and be patient . Results are not instantaneous . 
    9. Turn to your higher power. Whatever your higher power is, turn to that. Mine, is Jesus Christ. I am a Christian and I look to God to help me fight the good fight and run the race of my life. I urge you to look beyond the physical and go to a place of spirituality and beyond. I personally believe that there is more to life than living and dying . That in a universe that is too big to fathom , you are here. You matter. Your thoughts, your being, who you are is not here by chance . Think about it . The detailed universe is running on some sort of order. Your heart beats not by probability but by intention. You are intended for greatness ;To affect the lives of the people around you and be mesmerized by the beauty of creation and your creator. 
    10. Your legacy. I am very conscious of my personal legacy now. Before I didn't really fully understand what all that meant but when you are faced with life and death situations it forces you to take a step back and truly try to think. What legacy will you leave behind? You don't have to be rich , famous or popular to leave a good legacy behind . It's the people around you that matter. The heritage you want to give to your children is what counts. To inspire them to reach for their dreams, their goals. That money is not the measure of success ; that integrity, truth and keeping it real is the goal to live a fulfilled life . To keep it together when things fall apart . To build whatever is broken . That death is inevitable but not the end . Your legacy will live on . It's your choice to make it a good one or waste it . 

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