Hope is a big word

I spent the afternoon today with a couple girlfriends.

I'd wanted to go to the spa, where I could get some much needed pampering, and lie in the sunshine next to the pool. They are two really great girls, always happy to go with the flow, very supportive, and always a good time. Getting them motivated to get out of the house and focus on an outcome can be a challenge though. We'd talked last night about spending the day at the spa, and again this morning confirmed our plans.  I got dressed up and packed my bag this morning. I really could use a good massage and envisioned the day wearing a plush robe with cozy slippers curled on a lounge next to a firepit.

By the time we got out of the house it was much later in the afternoon than I'd expected, and not really worth the money anymore to head to the spa. The treatments are expensive, but worth it if you can make a day of it and enjoy the facilities. So instead, we drove around for a while, searching for some sunshine, and ended up crashing a garden party at a fancy hotel.

We had a conversation about hope, that started when one friend recited an Emily Dickinson poem:


"Hope" is the thing with feathers—
That perches in the soul—
And sings the tune without the words—
And never stops—at all—

And sweetest—in the Gale—is heard—
And sore must be the storm—
That could abash the little Bird
That kept so many warm—

I've heard it in the chillest land—
And on the strangest Sea—
Yet, never, in Extremity,
It asked a crumb—of Me. 

I'm not going to be able to re-create the conversation, but it was striking. Like a snap-shot that perfectly captured why it I feel so alone sometimes.

They started talking about how great it is that hope is ever-present, that bird in our soul that never stops singing. I disagreed, saying that hope is delicate and fragile and requires constant attention. The hope that I know takes so much energy to cultivate.

We talked about despair, the opposite of hope. They felt that it was despair that required the emotional energy.

Starting this blog was a manifestation of hope that had been so elusive for me. Being able to envision my "Someday", one that included a family, took me a long time. For nearly a year after our diagnosis I felt no hope. There was no bird. The song had stopped.

Finding hope for our future again has taken a lot of work on my part. Kind of like a garden that I have to plan and tend to, that takes time to grow, and needs the right nutrients and water and sunshine. I've worked so hard to regain a sense of hope and nurture it. Whereas despair takes energy, I have to give huge amounts of energy to maintain hope.

I don't know if they understood what I tried to explain. It was actually a depressing conversation. I hadn't realized how depressing I might sound to the people around me. But this is how I feel.

Wikipedia defines hope as a belief in a positive outcome related to events and circumstances in one's life. Hope is the feeling that what is wanted can be had or that events will turn out for the best.

I want so much to believe that our circumstances will turn out for the best, and intend to keep nurturing that idea.

How do you maintain and nurture hope on this journey?

Resiliancy

I've been working hard to build my resiliancy so that I am prepared for the road ahead of us. I think that I am generally a happy positive person. I like to have fun, I smile a lot, I try to always see the best in people. I've had periods of my life where anxiety and depression took over, but I've always bounced back. 

The Merriam-Webster Dictionary defines resilience as:

1 : the capability of a strained body to recover its size and shape after deformation caused especially by compressive stress2 : an ability to recover from or adjust easily to misfortune or change

I've always thought about resiliancy being like a rubber band that is stretched but then snaps back to normal. The thing is that its hard to snap back when other things keep stretching me, and the things that are stretching me are changing my original shape. It also feels like rather than an acute 'snap', it is a long slow process. I am resilient, but it has become a constant state of being that requires my constant attention. 

Mayo Clinic's website lists the following tips to improve resilience. 

Working on your mental well-being is just as important as working on your physical health. If you want to strengthen your resilience, try these tips:

• Get connected. Build strong, positive relationships with family and friends, who provide support and acceptance. Volunteer, get involved in your community, or join a faith or spiritual community.

• Find meaning. Develop a sense of purpose for your life. Having something meaningful to focus on can help you share emotions, feel gratitude and experience an enhanced sense of well-being.
• Start laughing. Finding humor in stressful situations doesn't mean you're in denial. Humor is a helpful coping mechanism. If you can't find any humor in a situation, turn to other sources for a laugh, such as a funny book or movie.
• Learn from experience. Think back on how you've coped with hardships in the past. Build on skills and strategies that helped you through the rough times, and don't repeat those that didn't help.
• Remain hopeful. You can't change what's happened in the past, but you can always look toward the future. Find something in each day that signals a change for the better. Expect good results.
• Take care of yourself. Tend to your own needs and feelings, both physically and emotionally. This includes participating in activities and hobbies you enjoy, exercising regularly, getting plenty of sleep and eating well.
• Keep a journal. Write about your experiences, thoughts and feelings. Journaling can help you experience strong emotions you may otherwise be afraid to unleash. It also can help you see situations in a new way and help you identify patterns in your behavior and reactions.
• Accept and anticipate change. Expecting changes to occur makes it easier to adapt to them, tolerate them and even welcome them. With practice, you can learn to be more flexible and not view change with as much anxiety.
• Work toward a goal. Do something every day that gives you a sense of accomplishment. Even small, everyday goals are important. Having goals helps you look toward the future.
• Take action. Don't just wish your problems would go away or try to ignore them. Instead, figure out what needs to be done, make a plan and take action.
• Maintain perspective. Look at your situation in the larger context of your own life and of the world. Keep a long-term perspective and know that your situation can improve if you actively work at it.
• Practice stress management and relaxation techniques. Restore an inner sense of peace and calm by practicing such stress-management and relaxation techniques as yoga, meditation, deep breathing, visualization, imagery, prayer or muscle relaxation.

I have what I call my Toolkit. All the things that I have in place to support me and help me get through this journey.

• My lover and our communication with each other.
• This blog journal and the wonders of writing.
• My sister, mom, and bestie who know everything and love me so much.
• This online community and the ability to read your stories and know that I am not alone.
• My happy pills.
• My wonderful therapist.
• My emergency happy pills for especially trying times.
• The Resolve group I recently found.
• Nail polish to keep my fingers and toes beautiful.
• Pilates - that I really need to go to more often.
• Permission to cancel any plans at any time for any reason.
• A boss who is supportive and understanding.
• A job that is rewarding and challenging and flexible and has meaning.
• my puppy and kitty who are so soft and cuddly.

I also have so much to be grateful for. So much. No matter how low I feel, I always come back to the many things that I have to be thankful for. And while I think that having that perspective is important, I feel like it is important to experience the feelings that I am having at any point on this journey. There is a balance. The feelings I am having are real and valid, and I want to honor them. However I don't want to take for granted any of the many wonderful things in my life. 

One of the most wonderful things in my life is my bestie. I met her when we were in second grade. Our family moved in to the house next door to her. I 'met' her as she was escaping through her bedroom window. We became best buddies that day and have been besties ever since. I LOVE her and I LOVE her family and they LOVE me. She kept me company yesterday while I wallowed on the couch. Her adorable little daughter flirted with me and offered me so many sweet hugs.  She is a wonderful mom and I love being around her and her babe. I want to tell her about this blog, but I am hesitant to open it up to others in my real life. ML is the only one who reads it, but in the spirit of strengthening my support system, I think it could be a good thing.  I almost told her yesterday, but stopped. What do you think?

For the time being, this someecard says it all:

(check out Katie's post for more postcards, and a good laugh.)

SA Next Week

Oh my gosh, I think I might have actually blushed when I saw that someone had submitted our upcoming SA to LFCA. Thank you for such a kind and thoughtful gift. Really, I wish I could give you, whoever you are, a great big hug.

So, yeah, SA is scheduled for next Wednesday. One week from today. It's been taking up more and more space in my brain, but I can't quite figure out what I think or feel. The only thing I know is that I want to line up all of my support systems so that I can experience any disappointment, but then bounce back. I don't want to crash into the bottomless pit of sadness and despair that caught up with me last time we got bad news. I can't do that again.

In some part of my brain I don't expect that we'll ever get good news. ever.

And in another part of my brain I am so hopeful that I 'joked' about a miracle for me last month.

The doc gave us a 50/50 chance that this FSH therapy could, in theory, result in sperm production. He explained that even if it was successful, there probably wouldn't be enough sperm to spill into the ejaculate and would still require surgical extraction and ISCI.  But the thing is, this is an experimental treatment. Its not like the doc has seen/heard of more than a couple cases like this in his entire career. So really, anything is possible, but it is not a proven treatment, so it is more likely than not that this SA will be negative.

And if it is, I want to grieve, then move on.

So, to make it all a little more complicated, or possibly a blessing in disguise, we are leaving for 10 days of vacation immediately following the deposit next Wednesday. We'll be departing on a 12 hour road trip  with my lover's best friend and a hitch-hiker acquaintance. So we'll get a call with the results while sitting in a car with two, for the purposes of this kind of news, strangers. I'll probably cry, and they won't know why. But they are boys and probably won't ask.

I'll bring my xana.x and have it handy in case my emotions start to get the better of me. and I'll have my love, right there with me (way better than drugs!). I'll paint my nails, which for some reason makes me feel good. and I'll have my laptop, so I can write. Writing has been the most incredible therapy. It is an outlet for the pain, a place to put it where I know it will be safe and where I can deal with it in smaller chunks. I'm meeting with my most awesome therapist tomorrow and I'm sure we'll come up with a few more tools to pack in my little resiliency toolkit.

So, yeah, I've not wanted to think about this, and have put off writing about it. Apparently I needed the LFCA push :) Regardless of the results next Wednesday, I feel your support and love. and it really means a lot to me.