Monday, August 3, 2015

Dealing With The Desolation Of Progressive Illness

I have had so many individuals question how I deal with the undeviating desolation of a progressive, and fatal illness. When bad news seems to be a constant in my life how have I not fallen into a deep, unfathomable depression. I have thought long and hard on this topic and found that the answer may have even surprised myself slightly. What I had attributed to "always staying positive" during the turmoil that is my daily existence, turned out to be almost the exact opposite. I found that I had the ability to keep my bubbly and lightheaded demeanor simply by not anticipating anything positive at all. In a nutshell, I always expect the worst and keep my expectations low. While that sounds like a heartbreaking way to live, the truth is when battling a disease like Systemic Scleroderma there truly isn't many other options. Before jumping to the conclusion that I am a pessimistic, morose individual, let me explain my reasoning:

When navigating the devastation of a degenerative illness you become familiar with phrases your loved ones, or even complete strangers may send your way. For me the terms I most received were idioms such as "Dream. Believe. Achieve.," "Always Stay Positive," and "The Best Is Yet To Come." While these expressions come with good intent, I found none of them helpful in my situation; I could not simply believe my illness away. No matter how hard I dreamed of a functioning body, no matter how positive I stayed I achieved nothing but further progression of my disease. The company around me encouraged me to stay positive and have confidence that I would receive good news from my next round of testing, so each time I was presented with poor results I was devastated. Each deficient medical result was another blow that took weeks to recover from. With this forced sunny disposition on an illness that is anything but, life seemed so bleak; constantly receiving information about the deterioration of my health when I was hoping for the exact opposite took a serious toll on my mental stability over time. I could no longer live like that -- It was time for a change.

I had, had enough of this "Dream. Believe, Achieve," perspective, it was unrealistic, and frankly counterproductive of an illness that a skilled physician had already expressed would take my life. Why would I stay positive for suitable test results when I knew they were not going to come? Why would I put myself through the torture of constant let downs? Why would I submit myself to the torment of persistent disappointment? Instead, I decided from that moment on I would prepare myself for the reality of my illness, and acknowledge the desolation it would wreak in my life. I told myself then and there that I was no longer going to hide from my reality but embrace the life style that had been thrust upon me. No longer would I cower in fear of unpleasant results or the progression of my fatal illness. I would meet these results, and new challenges head on!

While may people around me depicted this mindset as "pessimistic" I utterly disagreed. I believed wholeheartedly that my view was one of acceptance, realism, and endurance; what I liked to call "a realistic optimistic perspective." With this new outlook in place each of those negative test results, or new symptoms that developed did not knock me back for quite as long. I felt composed, calm, and prepared; I knew these results were coming and I was not surprised. I still felt the tinge of disappointment, but no longer the devastation and horrendous sadness that used to accompany my results. While yes, some days tears still flowed down my cheeks, my recovery was easier. With the full acceptance of my illness I was able to find more joy in my life and celebrate the small victories that manifested themselves; no longer in a constant state of mourning over my deteriorating health, happiness become easier to find.

I am in no way stating patients should halt their belief in miracles, or that they should abandon their hope. I myself believe strongly in the power of miracles, however, I will not put my life on hold for something that may not manifest itself in my lifetime. I plan on focusing on the now, and being ready for combat at any moment. I will fight this disease with every fiber of my being, and to do that I must be prepared; I will not be caught underestimating my enemy. I would much rather be prepared for the wreckage than live in fear of it.

I am sure this post will raise questions about my faith. If you are interested in my testimony of the Lord Jesus Christ and His hand in my life please click this link to a previous post: A Note To My Readers and read #2. I have found that many individuals state blindly, "you can be healed if you just ask." Please read through that post thoroughly before you comment on this posts, or any others with responses such as that. I have a strong testimony in my Savior and his healing powers but, His will is what governs my life, not my own.


  1. Hello again,

    I feel like! You went into my mind and wrote exactly what I wanted to hear. (Fantastic).

    I have gotten to the point where I go to the doctors by myself. because I receive SHIT!! news from the doctors at every appointment. And when a loved one goes with me, like my wife for instance she is always trying to cheer me up. But I don't want someone to cheer me up or tell me God has a plan (mom) I want someone to be angry with me. I need someone to yell FUCK!! YOU scleroderma with. I want to cry in the parking lot of the doctors office alone, and not have someone telling me it's not that bad. I just want to know the real answer. Why me? I'm a good person, a great father, a great husband, Etc. So Why?
    I'm with you Chanel. I am happy in life but I could be happier with life if we had a CURE.
    Sorry I just really needed someone to vent too.

    My scleroderma is not as progressed as yours so I feel like a cry baby cuz you are the one facing the true struggle.

    Keep on kicking ass Chanel.

    As always I enjoy reading your blogs.


    1. AMEN!! A thousand times amen to that!
      Wow, you literally got exactly what I was trying to express through this post! I am so glad there are others who feel the way I do out there battling disease! I am so glad you found your way to my blog. I always attend appointments by myself as well because I want to be emotional and soak in that bad news, not hear "Im sure it will be fine" because it definitely wont be. You are awesome Jarred! Keep doing what you're doing! P.S I love the (mom) snuck in there hahaha ;)

    2. Lol I'm really glad you enjoyed my post.
      I don't know anyone but you that can relate to my feelings and thoughts about our beauty curse lol. So when I read your blog. I can't help but throw in my 2 cents.

      I'm crossing my fingers and excited about your UCLA appointment so please keep us (fans) updated on how that goes.

      My birthday is this Friday (24yr) and not to sound to cheesy. I will add you into my birthday wish for a cure.

      P.s I call it the beauty curse because our skin is tight, smooth and shinny. don't forget to tell me happy birthday lol

    3. I will be sure to update when I see my specialist in two weeks! Ill have some big updates this weekend as well after I see my normal team tomorrow! Happy early birthday! Woohoo 24! August birthdays are the best... My birthday (24yrs) is this month as well! Twinning.

      I have heard some great "beauty curse" jokes about scleroderma! My favorite was "messed up hands... perfect boobs" lol I laughed so hard!

  2. Hi,
    I feel it is really a great great attitude and aptitude towards the life and the reality in life!
    While reading your this post , immediately stricken my mind or if i say reminded my mind of a great text i had read it from the Hindu religious scripture "Bhagavad Gita" that i would like to share with you. Taking granted your permission.

    Chapter 7 "Knowledge of the Absolute"
    Text 3 : manusyanam sahasresu kascid yatati siddhaye
    yatatam api siddhanam kascin mam vetti tattvatah
    Trans. :Out of many thousands among men, one may endeavor for perfection, and of those who have achieved perfection, hardly one knows Me in truth.

    Chapter 13 "Nature, the Enjoyer and Conciousness"
    Text 2 : idam sariram kaunteya ksetram ity abhidhiyate
    etad yo vetti tam prahuh ksetra-jna iti tad-vidah
    Trans. : This body, O son of Kunti, is called the field, and one who knows this body is called the knower of the field.

    Text 3 : ksetra-jnam capimam viddhi sarva-ksetresu bharat
    ksetra-ksetrajnayor jnanam yat taj jnanam matam mama
    Trans. : O scion of Bharata, you should understand that I am also the knower in all bodies, and to understand this body and its knower is called knowledge. That is my opinion.

    This is what i feel through your words , are really really inspirational, motivational, and must be some times thought provoking!

    Love reading your words!
    with best regards,

    May God bless u with lots of happiness and enough satisfaction in life!

    1. Thank you for those beautiful words Shyamal! :)

    2. Thank you for reading and appreciating the thoughts!

      with love and regards!

  3. I totally understand! You are not a pessimist YOU ARE A REALIST!

    I do the same thing! Why set yourself up for disappointment when you could just do the best with what you have been given?

    Jerrad, I don't bring family to most appointments either. My husband has a bad habit of only hearing the good parts because that is what he needs to hear to remain "optimistic". I am left repeatedly breaking the news to him and convincing him he misheard.


    My mom also hears a doctor recommend another surgery and then acts as if a potentially pain-relieving orthopedic surgery (i am a Polytrauma patient with Ankylosing Spondylitis and celiac btw) is something that is a last resort...and poor thing is so worried I have to ask her to leave the room so I can make a decision with my doctor.

    It is extremely difficult dealing with "caregiver fatigue". Coping with the idea of "this is my life now" sucks enough. Having to deal with people forgetting that said patient HAS NOT HAD A BREAK FROM THIS. [NOT. ONE. DAY.]


    Chanel, you are doing amazing! Your feelings are valid. If your coping mechanisms work for you, don't worry about what others think.

    Some people can't function after ONE BAD THING happens to them (hello, INTERVENTION show? Lol) and those same people would implode dealing with bad news on a regular basis! And you do it WHILE LOOKING SO DARN CUTE!

    1. You SO get me Amy! Thank for your comment girl! Made me smile so big! :)

  4. Amy,

    I can totally relate. When my wife use to go with me, it was like she wasn't even in the same room. Because what she heard the doctor say, was the complete opposite of what the doctor actually said lol. those were great argument days. Haha

    I know how you feel. I have lived with pain so long I don't even remember what Normal feels like anymore. (If only we had one day or better a life time of relief)

    I hope tomorrow is a fantastic day for you.

    P.s you can do what I do. every now and then I will tell a little white lie and tell my wife "my scleroderma is really hurting my feet or back today". "can you massage them for me?" hahaha
    Works every time. 😈😎

    1. You have a great day too!
      Lol that's sneaky! Haven't tried that, but I did have a doctor right me an rx for "Mexican coca cola and wifi on demand" while I was in the hospital recently

    2. This whole thread of comments makes me so happy! haha #spoonieperks

  5. looking forward to your next post! how are you?
    love from your fan vivia boe