Wednesday, February 10, 2016

Wings of Hope

It's been quite awhile since I last updated my blog. This is in part because my health can make it difficult for me to write extensively or put my thoughts together into any kind of cohesive whole.  Mostly, though, I've held back on writing because I haven't had all that much to write about.  Being sick and bedridden for years on end simply doesn't inspire many riveting stories. :)

However, occasionally, things do happen that differ from the norm.  Indeed, I have had a few somewhat new (and even rather wonderful) experiences in recent months that I would love to share with you.  While many of these are small, ordinary type of events that most people tend to take for granted, they are things that I don't normally get to enjoy. Thus, they hold much more significance for me. 

One such new adventure resulted from a wheelchair ramp we recently placed in our garage. It has quite literally opened new doors for me and given me access to places that were previously out of reach. On days that I am well enough, I am now able to be wheeled outside for brief moments to look up at the gorgeous blue sky and see our beautiful view of the Rincon mountains in the distance.

A new view

Currently, I can't go beyond the garage door and venture further outdoors as I am unable to sit up for more than a few minutes and the bumpy gravel can be a difficult ride for me.  But I am not about to complain. It's been a wonderful change of scenery.  When you have been primarily confined to one or two rooms for over a decade, getting a glimpse of an alternate view for even a few minutes can feel quite liberating.

The ramp has also helped to fulfill another long-held wish of mine.  One of the innumerable things I've missed in all these years of illness is the opportunity to gaze at the night sky. I can occasionally see the moon and a few stars twinkling from beyond my bedroom window, of course, but the view is always partially obstructed by the branches of my mesquite tree.  And while I used to be a night owl prior to falling ill, my health often now forces me to end my day before the sun has even had a chance to set.

However, this winter, while the days are short and night descends over the desert a bit earlier than usual, my parents have more than once wheeled me outside to gaze up at a brilliant display of sparkling stars.  It took my breath away to see all those glittering little diamonds scattered in the darkness.  It is the first time I have been outside during evening hours in 15 years.

Looking up at the stars

I don't know anything with certainty, but seeing the stars makes me dream.”
-- Vincent Van Gogh

I am hopeful that, with the help of the wheelchair ramp, I can continue these new little adventures of mine on a regular basis.  Perhaps, if I am well enough, I may even be able to lie outside in my front yard sometime this spring.  It would, I believe, be a little easier for me than our backyard patio, which has some obstacles to get through that can often cause a setback.  If this new set-up works out, my fingers are crossed that it may make it possible for me to lie outdoors more often, and without as much penalty.

Something else I have missed in all these years of confinement is the wide array of colors you see in the daily experience of simply being out in the world -- in gardens and art museums and in the simple variety and vibrancy of nature.  In an effort to add some of those lively colors back into my life, my mom now makes sure that I always have flowering plants in my room to brighten my days.  I love watching them burst into form, all radiant and iridescent, as if in celebration of their own beauty.

Purple Orchids

White Orchids

Yellow Daisies

In addition to these daisies and orchids, a dear friend of mine sends me a new amaryllis plant each year for the holidays.  I have several whose bulbs are just now beginning to sprout, and I look forward to getting to see their beautiful display of blossoms in the coming weeks.

This Christmas, I was also given a few of those adult-geared coloring books that are so popular right now.  As long as I am careful to pace myself and not overdo, I find they can be a fun way to pass the time when able.  Here's a dragonfly I finished a few weeks ago that I thought came out decently, at least compared to some of the others I did. :) I clearly don't have much artistic talent, but it's nice to feel I am doing something even slightly creative.  It's another way for me to add some color to my world.

Dragonfly

As always, the birds and wildlife also bring me a little beauty each day.  While this doesn't technically count in my list of "new experiences," it wouldn't be a proper update without including a few of my favorite photos of my more recent window visitors -- from the usual finches, woodpeckers and doves to the slightly less common black-chinned hummingbird and Cooper's hawk.

Bird Visitors (click to enlarge)

Another recent treat was getting to have my annual (always far too brief) visit with my best friend and her two daughters over the holidays.  Due to my health, any interaction I have must regretfully be kept to a minimum (generally less than 10 minutes or so) in order to avoid a lengthy setback.  However, thanks to very careful pacing, this was one of the first years in quite some time that I wasn't crashed prior to the visit, and it was nice to be able to interact even just a tiny bit more than usual.  I especially loved getting those precious hugs from her sweet children.  Her youngest, my goddaughter, always comes back into my room for an extra hug before they leave, which never fails to make me smile.

And now for my most exciting news of all!  

I've mentioned previously that, unfortunately, my fiance also suffers with severe ME.  Jim's been sick for over 30 years and is wheelchair and mostly housebound.  Due to our health, our relationship has been forced to remain long-distance. Until this past January, it had actually been eight years since we'd been able to see each other.  However, by some small miracle (and with much help from both our families), Jim was recently able to find a way past the many obstacles to fly out and visit with me! I still can't quite believe it really happened.

Together again at last!

Always so sweet, Jim brought me a rose and some chocolates

In order to help pull this off, one of Jim's brothers kindly offered to fly out from CA to PA and join Jim in his flight here to Arizona (and then back again for the return flight home).  This assured that someone would be there to help Jim through every step of the journey in case he needed additional assistance or encountered unexpected issues.  Jim also flew first-class (and had a reclining wheelchair) so that he could lie mostly flat for the entirety of the flight.  My parents, of course, were also extremely accommodating and went out of their way in order to make the visit as easy and comfortable for both of us as possible.  In addition, Jim's parents helped tremendously by caring for him before and after the trip.

I am beyond grateful to all who so graciously offered their assistance and support to make our visit happen. I'm most especially thankful for Jim, who bravely fought through so many hurdles and risked his very health for us to be together.  I don't have the words to describe how remarkable it was to be able to see him again after so many years apart.  Despite how sick we both were, every moment we got to spend with each other was pure joy.

Of course, I miss him terribly now that he's back home, but I feel so fortunate to have such wonderful, new memories to hold on to and cherish.

My time with Jim gave me a newfound sense of hope. Admittedly, there was a part of me that wondered -- without a cure or a new potential treatment -- if I would ever see him again.  Our health has been so poor over these last many years, and research for this disease continues to be sparse and lacking in much immediate promise.  However, Jim's visit was a reminder to me that, even in the midst of unending struggle, dreams can and do still come true.  Undoubtedly, while my body remains confined by illness, my heart, mind and soul can still find ways to soar.

It is on those wings of renewed hope that I forge ahead with even greater resoluteness, knowing that, despite everything, many more moments of joy, love, beauty and wonder await me.

8 comments:

  1. Am always excited to see a new post from you! I waited until after breakfast, so that I could read every word. Is a wonderful update that keeps hope alive. That is for sure. Am so happy to see how you had an early Valentine's 'gift' delivered. Making new memories to cherish and reflect on are so vital to our well being. From the east coast of the Atlantic, sending a big hug and thank you, Laurel, for sharing your world w/me.

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  2. Dear Laurel what an inspiration you are. I am so pleased that you have had some small pleasures you are often in my thoughts as I enjoy better health and try to advocate to bring awareness wherever I can.
    One day science will show the way and doctors will listen. xxx

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  3. So glad you were able to have such moments of joy!!

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  4. Laurel, I'm so happy for you- that you were able to enjoy a few different perspectives of the beautiful outdoors. And what a beautiful and amazing thing it was that your fiancé could visit you! Thank you so much for sharing your wonderful news. I have followed your blog for many years, and am thankful that Jody has alerted me to this latest one. I continue to amazed at your tenacity and ability to find joy in the midst of this illness. Love and hugs to you, Snez.

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  5. Laurel, I'm so glad you are getting to go outside and be in the presence of the stars and see the mountains from a new perspective.

    I love those coloring books; your dragonfly is absolutely beautiful. :-)

    The picture of you and Jim makes me so happy; what a wonderful partner for you to have in this journey. My sincerest hope is that someday in the not at all distant future you two are able to journey more closely together so his visits aren't so few and far between.

    I'm so happy to see a new post from you. I love you & miss you. xoxoxo

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  6. Laurel, What a remarkable woman you are. Thank you for sharing this.

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  7. Awh, bless you Laurel! I have just started to reading your blog as somebody with CFS/ME myself and I honestly love it! It sounds like you're going through such a rough time with it at the moment but you can do this! I have just started blogging about my CFS/ME journey which can be found in the link below!

    Keep up the fight! Followed you on Bloglovin'!

    Love, Cat xxx

    http://catsrecoveryjourney.blogspot.co.uk/

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  8. Laurel, I meant to comment when you posted this - so sorry I didn't manage to, I've been really foggy lately. I wanted to say how pleased I was for you that you have been managing to get outside for a little while, and also that Jim was able to get there to visit you. I hope you keep getting more and more moments of colour in your life.

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