Searching For The Sun

Written by Stephanie “Stevie” Bethel 12/27/2015 (My 37th Birthday)

Towards the end of my senior year of high school, I was diagnosed with Lupus SLE. My response to the diagnosis was not a typical response to this curious disease. I was overjoyed, felt vindicated and for a time (a short time) happy. Happy because I was free — free from the worry of knowing something was wrong with my body and no one believing me aside from my mother. For years, I was labeled lazy, a complainer and most hurtful of all and most damaging a hypochondriac. Damaging because it put in my mind my pain was in my head. Soon after my illness was diagnosed it seemed to speed into overdrive.

After the cause of my pain was given a name by a rheumatologist I was hospitalized for two weeks. The last two weeks of high school. It was hard for my 17/18 year old brain to comprehend the seriousness of a DVT (Deep Vein Thrombosis) in the back of my leg. For me it was an inconvenience rather than a major and potentially life threatening event. I wanted to attend all my senior activities. I was pissed and aggravated to have missed a senior skip day and later a senior cruise — after graduation. Reminiscent of an ending of a movie or television show I was released in the eleventh hour. Graduation was on a Sunday and I was released the Friday before I graduated. My doctors released me but were not comfortable with my discharge. I had to agree to give myself Lovenox injections a few times a day. The shots a blood thinner that would work until my pills (warfarin) by mouth had sufficiently taken effect. I would have agreed to signing a contract with the Devil if it meant I could make my graduation and have one more day of high school with my friends. I graduated without incident up until about two or three weeks after commencement. Hospitalized once again in the same hospital with another blood clot. The only thing different was the clot was in the other leg this time. This experience changed the trajectory of my life and changed me more than I realized at the time.

I went to college as planned on track but instead of attending my dream school in Maine (Bowdoin College) I attended my mother’s alma mater (Lipscomb University) in Nashville. All I wanted that first year in college was to be normal. I worked extra hard in all my classes, I studied hard and made the grades I had hoped I would my freshman year. Friends and family marveled at how well I had done managing school, campus life and my health. After that it seemed I had to keep that pace and I worked myself almost to death. My last year it all came crashing down on me. I was ready to drop out until the head of the English department arranged for me to do my classes from home and work online. This was before online classes were really a thing so quite a progressive offer for that time. I accepted this phenomenal offer and again made it to graduation — this time from college.

After college, I got a job having nothing to do with my degree in English. I avoided law school as planned due to the stressful nature of the curriculum and how rigorous I was told it would be for me. So I sought out a job with the state because I was told I would have excellent health insurance. I stumbled right into a job with Children’s Services. This was the epitome of high stress — the last thing someone with lupus needed. All these years later it is obvious to me that law school would have been the better choice.

In my mind, I was not sick. I was still in the mind set that having lupus was how I’d been delivered from years of undiagnosed pain and questioning my sanity. After several years working as a social worker it all came crashing down on me again. This after working those last few years extremely ill. It got to the point, at the end of my working career, where I could no longer drive and had to be taken to work because I was too sick. I was in a wheelchair during this time but still trying to work. My employers, who had been so supportive and as understanding as they possibly could finally told me they were going to be forced to let me go based on my attendance which was caused from being so sick. I decided to resign and at that point I feel like I resigned my life, independence and dignity. My parents moved their lives to where I was living in TN and again I was living with my parents totally dependent on them not just financially but in every way. My friends were married, getting married and having babies and I was at home living with mom and dad.

I stayed in a deep depression for almost a year. My weight soared to a scale tipping and jaw dropping 350 lbs due to medications and a constant battle with weight I have had since childhood. I was in the depths of despair. Spent days just lying in my bed, in the dark, just wanting to get to the next day to do the same thing. I wanted to die. I contemplated dying often sometimes by my own hand but mostly just wanting my disease to kill me. My mother who has always been my rock — my due north demanded I get psychiatric help. I remained resistant to the idea for years that I had a problem with the depression and anxiety. I was also resistant to the meds used to manage those issues. I was already taking so many pills and did not want anymore especially not “crazy people medications.” I had that stigma in my head that mental illness was something to be ashamed of and a weakness. My body was failing me and now my mind. Taking the pills was admitting I was crazy. This is what I thought back then until I finally realized that living under a cloud of depression when you did not have to was what was crazy.

Flash forward several years — I had a gastric bypass surgery and lost over 200 lbs. That decision came about because my weight was making my health problems more severe. I have lost the weight and my life has changed in some ways for the better but it seemed I had traded the weight for other pain. I lost my father which sent me into another depression that I am not even sure I have left to this day. I am in severe renal failure currently with an eleven percent kidney function. Now dialysis is imminent for me unless a miracle occurs before I start having the symptoms that accompany my low renal function. Over a month ago, I was released from the hospital after a twenty day stay.

I cannot truthfully remember what initially sent me to the ER. At the hospital, I learned my electrolytes were dangerously low this was the reason for my tremors and sudden uncontrollable jerks. At that time, my kidney function was at ten percent. I had several blood transfusions, a fistula placed in my left arm and a kidney biopsy — all done during that twenty day stay. The first few days I played the “poor me” song in my head day in and day out. I wondered why even keep trying? My mother stayed with me every night at the hospital as she has done my entire life. There has not been ONE time that I have stayed in a hospital overnight and my mother was not there with me sleeping in whatever furniture contraption that was in my room. I lie in that hospital bed hating myself, life and I was angry. Why? Why me?

Finally — after almost twenty years of trying to keep it positive I couldn’t any longer. I broke down crying every day, sometimes several times a day. Then one of those days in the hospital I started crying, as my routine dictated, but this day one of my nurses just held me while I cried. She told me it was alright to get the blues. She told me that I was not dealing with easy things in my life and that no one my age should be as sick as I am. I think that was the most needed hug of my life and it came from a stranger. Yes, my mother had told me those same things over and over again but I guess I felt like as my mother she had to say it. This strangers kindness, the kindness of a someone going out of their way to be compassionate started to change my perspective. It did not just change me while there in the hospital but for good (I hope). That nurse made me feel like my life had worth, meaning and that’s something I gave up believing. She gave me strength to want to keep going, keep fighting — keep living. Kindness, simple kindness was a reason to live, compassion, empathy and sympathy were reasons to keep pushing ahead. “And the greatest of these is LOVE.”

I considered my mother’s love and how deep and profound it has been in my life. My mother who had never left me and who honestly never resented having to help and support me — my mother who has always told me if she could take ALL my pain away to bear as her own she would and never regret the exchange. I considered how lucky I was to have someone there with me every night — who fought for me when I was so tired and weary. I thought about that nurses kindness and that opened my eyes to how kind everyone there at that hospital was to me. I started talking to every one that entered my room. I knew everyone on my floor. It made me feel better to return the kindness shown to me. Nurses that were not even assigned to my started to drop by my room just to say hello, check on me, see how I was and yes just listen to me cry and just hold me when I needed it.

I started capturing selfies with all the staff — nurses, techs, people that cleaned my room and brought me food. I hated and still hate my illness but I learned to appreciate what I had and what I could control. I took daily selfies of myself and posted them on Facebook with daily updates and just expressed what I was feeling. It was not always smiles most days tears but having a large group of people praying for, supporting you and sending good energy made a difference. Being loved is important but knowing how to receive love and accept love is a phenomenal thing. It finally dawned on me that people really cared about me and were not just saying it to be nice. People in my life honestly cared how I was doing, how I was feeling and truly understood it was hard being sick all the time and did not think I was a complainer or weak. People truly wanted to see me happy, well and as healthy as I can be in my lupus body. The messages, likes on Facebook, texts and calls pulled me through.

Now that I have been out of the hospital for awhile I am doing better but it is still a journey the difference now is that I understand I don’t have to walk it alone. I don’t have to be less than honest about how I feel. There are days when nothing seems to help — those days I try to remember better days will come again where I will feel strong and I am strong. All we can do is get to the next day — do all we can to see tomorrow. As in “Annie” keep trusting that the sun will come out tomorrow and there are so many beautiful people to share in that sunshine with us.

SEB 12/27/2015