Learning to Hope, Not Wish

Me and the two girls that mean the most to me at the George H.W. Bush School

Me and the two girls that mean the most to me at the George H.W. Bush School; Photo courtesy of Rosalee’s Custom Photography

“The doors we open and close each day decide the lives we live.”
– Flora Whittemore
 

Everything has changed.  Everything.  Yet it’s the smallest of these changes that tend to bother me the most, such as my once naturally beautiful nails that now crumble like carefully baked cookies, symbolizing the destruction of the life I once lived.  Things that seem so inconsequential on the outside can tear you apart from the inside.  It’s hard in the moments that feel as if you’ve lost the things you once loved and must force yourself to overcome hurdles you never asked for, just for a fleeting glimpse back, to stand in the kitchen for 15 minutes as the burning begins to forcefully set in and feel powerless to make what you once loved dearly enjoyable once more.

I often times find myself wishing.  I wish my body had waited to manifest this disease until after I finished graduate school so that the hill did not seem so far to climb.  I listen to the complaints of others and wish those were my major concerns.  I wish my treatments – the physical therapy; the medications that blur my thoughts, steal my memory, and muddle my overall cognitive abilities; and the nerve blocks – were somehow more tolerable and…perhaps even sometimes easy.  I wish evenings were more enjoyable, rather than exhausting and painful.  I wish to avoid special treatment from others, yet find myself providing internal excuses for why I’m different than others – a hypocrite that I can no longer look in the eye.  I wish for so many things, big and small, rational and irrational.

“Hope never abandons you; you abandon it.”
– George Weinberg
 

But I seem to have lost my hoping in all of this wishing.  Hope for tomorrow, hope for the milestones, hope for relief, and, most of all, hope for the future.  I’ll admit some days are easier than others, and I’ve nearly mastered hiding the pain (physical, mental, emotional) from those around me, but I have yet to master the art of pure, blissful hope.

“Most of the important things in the world have been accomplished by people who have kept on trying when there seemed to be no hope at all.”
Dale Carnegie
 

I accept my world has permanently changed, both in ways I prayed would never be seen and in ways so beautiful verbal descriptions are elusive. I fully believe this is the first step towards finding hope – the same hope I have been chasing 14 months that wriggles away from my arms not long after its capture.  Hope is here, somewhere deep inside. I can feel it, and it emerges with each accomplishment.  Though each achievement is accompanied by another milestone full of its own setbacks.

This journey requires considerable courage and self-reflection.  Sometimes this new awareness reveals alarming new character traits that I must work to amend.  I am horrified when I find myself thinking I deserve something more than another simply because of what I must overcome, fully realizing the truth that others must bear could be just as painful, if not more, than my own.  In these very moments I squash my chances for hope with my selfish wishes.  It’s a tough self-truth that I have come to realize.  Simultaneously, I have gained strength, grace, and the ability to be more objective.  There are times in life that you must take several steps backwards in order to move forward.

You may ask yourself the events that spurred this post.  The symptoms of my condition have recently magnified, and the sympathetic nerve block administered on Monday was not successful.  Few treatment options remain, at least for the moment.  Additionally, I have reached my final semester in graduate school.  The weight of working full time and attempting to finish my graduate education sometimes feels more than I can bear.

But each accomplishment brings more hope – hope that I cannot allow to be suppressed by wish and anger.  So today, to you, I vow to set aside my selfish wishes to allow more room for hope and the courage to change who I have become into who I want to be.

Hope has two beautiful daughters:  their names are anger and courage.  Anger that things are the way they are.  Courage to make them the way they ought to be.”
– Saint Augustine
 
A collage of recent photos, courtesy of Rosalee's Custom Photography

A collage of recent photos, courtesy of Rosalee’s Custom Photography

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About Journey to Optimism

I have a perfect dental record and a heart of gold. I volunteer my free time at every opportunity because I believe we can all make a small difference, and through the accumulation of numerous small differences, together, we can make a large difference in this world. I enjoy politics and public policy but not divisiveness, and I absolutely love writing.
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16 Responses to Learning to Hope, Not Wish

  1. “There are times in life that you must take several steps backwards in order to move forward”

    Beautifully written. You are an inspiration!

  2. chiquitar says:

    The less-than-attractive truths about ourselves that becoming a healthy happy person with this kind of a pain condition requires that we discover and fix is a biggie. At times I feel proud of myself that I’ve been able to learn and grow as a person so much. Then I find some new apalling thing that needs fixing =-)

    • I suppose one of the harder things to comprehend is whether these appalling things existed within me all along. I realize it’s not healthy to dwell on these thoughts, but it sure does nag at me. I keep telling myself things will get better soon, but there are days like today that soon seems so far away. Today is one of those days that I must remind myself every ten minutes that my world is not ending – in fact, it’s just beginning. But I find myself reluctant to close this door to open a new one.

  3. Erica says:

    Dear Crystal,
    Thank you for putting into words some of the very feelings that live in me. I want to be upbeat, I’m burden enough, talking about how it really feels would just bother/hurt those I love, and love me. Who wants to dwell on the pain when the pain dwells in you? This emotional struggle can well up inside of us until the act of balancing a check book can send us over the edge. (Okay, check books always did that, perhaps selecting jam for toast would’ve been a better analogy.) One thing I hold tight to, is hope. We may never see a time where we can walk, drive, paint our nails, exercise or play baseball on this earth. I may never take another step on my own in the world. Yet I’m promised that I’ll dance on streets of gold. You may never have a hug that doesn’t hurt, by someone who understands. Yet you can be assured you’ll be embraced without pain by One who’s been there. While the fire of RSD may never be extinguished for us here, it may not cross Heaven’s boundaries. We are promised eternal life and peace by the One who took everything on His back, felt our pain, and overcame death, so that we might know health and life. The Bible says “But as it is written, Eye hath not seen, nor ear heard, neither have entered into the heart of man, the things which God hath prepared for them that love him. (1 Corinthians 2:9 KJV)”. I don’t know about you, but I can dream some wonderful things.:). Call on Jesus to fill you with Hope, He loves you. The Bible promises not to give you more than you are able, He knows you are a very, strong woman.
    Thank you for your illuminating words,
    Erica

    • Thank you for your thoughtful words, Erica. I must admit, as I told my husband just this weekend, it’s hard enough to think these thoughts but to put them on paper…not just paper – the Internet – for all the world to see…I can tell you that sometimes hitting the “publish” button takes all the energy I have left, which arguably isn’t much after crying for five hours while writing the post. My husband has done so much for me in the past 14 months after all of my surgical complications that it feels so wrong to burden him with all of these feelings (while he’s preparing to defend his PhD research nonetheless). So I burden my readers. I just replied to an email from someone and let them know that I honestly spent the first 4.5 hours of my work day crying uncontrollably. I have no idea where that came from. But it obviously was ready to come out. Hope is all we have to hold onto to get us through the day…and each other. But sometimes it’s hard to find those “each others” because we are all scattered throughout the world. Thank the Lord for the worldwide web. Know I feel your pain. I take these blog posts very seriously. Some are better than others because sometimes I can’t control all of the emotions to put something coherent down. Please do not hesitate to reach out if you ever need someone to talk to.

  4. Joyce Hamilton says:

    My daughter was diagnosed two years ago with this, and your blog reminded me on how she felt. She will be turning 15 in a month and had RSD in her left arm. After going to numerous doctors to find out what was wrong with her arm, the pain had increased and her arm had locked up. She had the same determination and hope as you do..she was a goalie in soccer, and found a way to still be an awesome goalie with one arm. Two years later, going through intensive physical therapy, I am so happy to be coming upon a year of being RSD free! How much we had prayed and others as well, I would have never thought I would see her use the left arm again. She had to go through a lot of pain in physical therapy but was hope, faith, and prayer that overcame this horrible syndrome! I pray that you can overcome this as well, and keep the good inspirations!

    • I am a HUGE advocate for physical therapy – with a therapist that knows the disease. As painful as it was (and still is), it has helped so much more than any medication. It makes me so happy to hear stories of recovery because sometimes it is so easy to get wrapped into ourselves that we forget to live. Sometimes we can give up trying, but it is stories like your daughter’s that inspire us to trudge forward. Thank you so much for sharing your daughter’s story!

  5. Jim Broatch says:

    Crystal,
    I shared your blog post on RSDSA’s FB page, please visit to see the comments. Best of health, Jim Broatch

  6. Tammy Clark says:

    Thanks for writing for us all Crystal. I have had RSD for over 6 yrs now. I had to retire from my postal career of over 21 yrs.. Although I miss working I know how fortunate I am to have had a good job with great benefits which really help out now. I lost both my mom and my grandma in 2011. My marriage had been falling apart for yrs. but the RSD was the final straw. I feel so alone and more and more helpless as this condition takes away my freedom and enjoyment of life. I feel like I am merely existing most of the time these days. This pain inflicts limitations on my body. If I do what I want to do then I pay dearly for days at a time. There are so many restrictions the pain forces on me. In the beginning I pushed through the pain and didnt let it stop me but now when I wake up in so much pain that I am afraid to even move in bed. I would wish this on no one and most days if it weren’t for my 2 dogs checking in on me and loving me unconditionally I wouldn’t even bother to get our of bed. They seem to know and understand better than any humans ever could begin to process the pain and its effects.I admire your determination and endurance and pray that it continues for you. Tammy

    • Tammy, I’m a big believer that things happen for a reason, though most of the time I cannot explain the reasons. I’m also a big believer that this belief doesn’t really help in these situations. Sometimes all you can do is focus on what IS going right, what you DO love, and what you CAN accomplish – no matter how big or small. Medical complications can be difficult to comprehend to those who do not experience those complications themselves, but that should never excuse not standing with someone through them – no matter how difficult the road. And you are right. Dogs do seem to understand more. Today was a pretty awful day for me, and my three Shelties seem to have picked up on it. And all they want to do is fix it. It’s comforting. You should know that no matter what is going on in your life, there are a lot of people who want to help. And even if they cannot help, remember to take some satisfaction in their love. I have days when it’s hard to let love in, and I always have to remind myself that sometimes this love has nothing to do with pity but with an honest desire to comfort you. I may not be able to help much from afar, but never hesitate to contact me should you need someone who will listen without judgement. I may not be able to relate fully to your situation, but I do know how much you need someone to talk through all of these strange emotions.

  7. myrsdlife says:

    Crystal, after reading your post and all the coments its nice to know that there is an rsd family out there to help and encourage each other. I guess what I would have to say is keep fighting. Last weekend I almost pasted away because my kidneys failed. As you know after reading my blog I have rsd in my right shoulder because my arm was amputated due rsd and now after a heart cath I have rsd in my right leg. I have 2 spinial cord stimulators implanted which I believe everyone with rsd should a at least do the trial stimulator just to see if it would work. I am very happy to be alive and i continue to fight everyday. I hope everyone else does the same. don’t give up. Things can get worse. you have a strong support team meaning your husband which is the most important thing you can have. I know because I have the strongest wife ever who does so much for me. Keep the faith and write anytime. That goes for anyone else I have been dealing with rsd for 15 years. keep pushing foward. Scott

  8. shazzagirl70 says:

    I have just nominated you for 2 awards the Very Inspiring Blogger award and the Beautiful Blogger award. Congratulations and thank you for your blog. Please follow my link below.
    http://sharonmunday70.wordpress.com/2013/03/12/my-nominations-for-beautiful-blogger-and-very-inspiring-blogger/

  9. Joyce Hamilton says:

    Crystal,
    Even though I haven’t been to your blog for awhile, you have been in my continued prayers for healing. My daughter who had RSD that I messaged you about just celebrated her 15th birthday and remembered last year of going through our last effort of intense physical therapy. Soon she will be a year remission from RSD and always still scares me when she mentions about her arm hurting. Some of the emotions you mention in your blog is so much of what I heard from her when this horrible RSD was in her arm. How much her life had to change, and how people were not understanding of it. It is hard to explain to people or even some doctors what it is like, until you have it yourself, or know someone with it. I truly believe that you will triumph through this and you will find a healing. Don’t give up in finding another doctor or going to another physical therapist like we did. The other thing that I did with my daughter was use massage oil from Bath and Body works and started gently with a soft cloth to massage her arm, and even though it might have been painful, she said it helped.

    Joyce Hamilton
    Noblesville, IN

    • Hi Joyce,

      Thank you so much for your continued support, and happy birthday to your daughter! I cannot imagine having to learn how to deal with such an awful disease at that age. She must be quite the strong young lady!

      I actually have an exciting update to post soon regarding some of the activities I’ve been able to start. I hope to get the post up by the end of this weekend so definitely keep your eye out. And please know I’ve thought about you and her as well.

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