Saturday, July 6, 2013

I Wonder If I Can Do This Forever

Warning: If you have a high opinion of me, you may no longer have that by the time you get to the bottom of this post.

I worry sometimes that I won't be able to do this forever.

There, I said it.
Maybe it's brave to admit that, I don't know.
I do know that it's scary.

Last Friday, when I was leaving work, the sun was shining so bright. I had planned on going grocery shopping, but the sun was calling my name.

I called Michael, "You want to go to the beach?" He told me he was wearing jeans. Translation: That would mean I'd have to transfer him to the bed, change him from jeans to shorts, transfer him back to his wheelchair. Eh, I didn't want to go to the beach that bad.

So, I did the responsible thing, I went to the grocery store. I came home. He was exhausted, so I got him in bed, then I got in bed, and we slept. Saturday morning, I woke up sad. But, I went to Crossfit, and the day got better.

Wednesday night, I didn't have to work because that was July 4th for me. On my way home from work Wednesday morning, the sun was shining. So, I call Michael, "You want to go to the beach?" He told me he was wearing jeans. I cried in the car. I miss being spontaneous. I wish my back didn't hurt, and that I had endless, boundless energy and/or I didn't have to do those transfers. So, I did the responsible thing, I took the SUV to Jiffy Lube and got the oil changed and the tires rotated. I came home, and we went to bed.

That night, we woke up, I got him up. Made dinner. We ate. I watched two episodes of Dateline, then I was tired, so I figured I'd listen to my body and take a little nap. I woke up 8 hours later.

I made plans to hang out and ride bikes with a good friend that I haven't seen in a long time - for Friday morning. I was really looking forward to that.

Thursday night, I come downstairs to get meals ready and head to work, Michael is wearing shorts. "I'm ready for the beach," he says. My heart sinks. Oh, yeah. So, I send a message and cancel plans with my friend. She understands, of course, and we set that up for next Friday morning.

I fix meals, make sure he has everything he needs for the night, then when I'm pulling out of the driveway on my way to work - I cry my eyes out.

Sometimes I feel suffocated. The guilt is the absolute worst. It sucks that I have to do extra stuff for him. But it sucks majorly worse when I don't want to do those things, because that makes me feel like a horrible person.

Then, I spiral out of control. And here come the negative thoughts: What am I doing? Why am I doing this? It could be so much easier. It should be so much easier. I hate this. This isn't fair. I want a break. I deserve a break. Wait, no I don't. I love him. This is worth it. He would do it for me with a smile on his face. Why am I such a jerk? Why am I happy one second, and devastated the next? I'm crazy. I'm tired. Tired of it all. No one knows how I feel. I want to go to sleep. I want to keep driving. I need to pull it together. God, are you listening? I'm jealous. I feel awful. I should want to hang out with him. But it's so much work and I don't want to do anything extra. I'm tired of it all. I can't do this forever. What have I gotten myself in to? I'm not strong enough. I'm certainly not sweet enough. I can't do this. Someone else could do way better at this than me. I miss the simple life. I need a break. Ok, I'm at work now. I need to focus.

My commute to work is about 15 minutes, and this was all done in tears, listening to the Nashville soundtrack.

Work was fine. It's a great distraction, because I love work.
I didn't want to come home Friday morning. My emotions were all over the place.

Yay! We were going to go to the beach. My ultimate favorite thing to do. I absolutely love everything about the beach. Boo! I have to do all those little extra things that come with having a quadriplegic husband and taking him to the beach, and making sure he doesn't get too hot, and making sure there is parking, and not being able to go down to the water to lay out because the planked walkways only go so far in that particular spot.

I was battling in my head the whole time we were at Whole Foods getting lunch, and getting to the beach. My plan was to get him all set up with water, sunscreen, his Kindle, etc. then I could sit down. By the time I sat down in my beach chair, I was a mess. Tears leaked from behind my big sunglasses.

And he came to my rescue. I didn't deserve it. I was being bitter and nasty and pushing him away, but he held my hand, stroked my hair, and promised me that it would be okay. He gets tired of it all and wonders if he can do it forever too. He promised me that we can. That we can do this forever. That we love each other deeply.

He read me quotes from a book he is reading like this:

"The moment you accepted [him] as your husband he became God's choice for you." (Roanoke, Angie Hunt)

"Love is a decision, my dear, and today you have both made it. Trust God to do the rest." (Roanoke, Angie Hunt)

And just like that, the tide turned. Deep breath.
We are going to be okay. No, it's not easy. But, I can do this. One day at a time, right?
And it was a good day. The breeze was perfect at the beach, so he didn't get too hot. I napped in my beach chair. He took a walk and I had a little bit of quiet, alone time. I went down to the ocean by myself, and dipped my toes in the cool water.

We came home, realized we forgot to pick up his prescription, and he hoofed it up to Wallgreens to get it himself. Because that's the kind of guy he is.

Oh, this life I lead. It is an interesting experience, to put it lightly. He is the source of my worry, my fear, my exhaustion. But without him, there's no way I could endure all of it. It's crazy to think of it like that, but it's so true.


Unknown said...

This doesn't change opinion of you! It makes me understand and appreciate the strength that BOTH of you have. If you can wake up everyday and appreciate life, i can do the same.

Jaimie L. Moore said...

Our minds are too alike. Sending love and virtual shot of strength to get through the overwhelming moments. After tears and doing "the responsible thing" -- there will always be days at the beach, even though it may not feel like it.


Cheri said...

Sometimes you read my mind and couldn't have said it better myself. By the time we went to our 4th of July pool party I was already exhausted just by getting ready. I am 55 so you're going to be fine Dana. But I do think a little Hoyer life would really help you and your back out! Deep breaths!

Unknown said...

I love how real,honest,& vocal you are about your thoughts! I've been having the same thoughts.

Unknown said...

I love how real,honest,& vocal you are about your thoughts! I've been having the same thoughts.

Unknown said...

Afraid my wife feels the same way. Actually, I know she's feeling a lot of it. Especially lately. It sucks being a quadriplegic. It sounds stupid but sometimes it sucks even more that we've found great women like you to love us because you have to see us at our worst and do the work of a nurse. Some days none of it is fair. Not for either party. Keep going strong. You know we love you guys!

EyesofBlue said...

You are real, you are raw and you are awesome! If you didn't have these real feelings I would be worried. Thank you for putting them into words and giving other families that care for loved ones the courage to feel and soldier on.

awoodman4ever said...

Half of the married couples in America will end up divorced and it is not because of quadriplegia. Marriage is just difficult. To question your marriage only makes you human, I think. Instead of focusing on the negative aspects (we all have them after all), it is much better to focus on the positive. God brought you two together for a reason. Being married to a quadriplegic is difficult, but so is trying to lose weight! But you don't give up - you stick to it.

Trina said...

I just love you. Thanks for your beautiful words, and taking us to the beach with you.

Trina said...

I just love you. Thanks for your beautiful words, and taking us to the beach with you.

Shilyn said...

You put in writing the EXACT thoughts I have some days. We are much older than the two of you, and my husband has only been a para for 5 of our 41 married years, but the frustration, anger, fear and yearning for our old life never quits...or so it seems. Because of my age I also wonder if it will ever end, and by the time it does...will I be too old to do anything but sit on the porch in a rocker? And then the guilt comes flooding in, for he, too, would do these things for me. I loved him before and I love him after, but where did normal go? Where are the golden years we read about? And then we have a
good day with no bladder or bowel issues, no spills, no clothing changes, etc., etc. On those days I thank the Lord that he is still here, and I am not alone pondering his demise. No one understands this lonely road we walk daily until they have been in our shoes. Dear girl, do not feel guilty or think we might dislike you. Anyone in our shoes UNDERSTANDS those scary thoughts! Here in Illinois we are hangin' in and hangin' on to each other!

Unknown said...

I am honestly relieved to read this most recent post by you. I completely understand. I love my husband, I am mean - I whole heartedly 100% LOVE my husband but some days the SCI just gets the best of me. He's been injured almost a year and I wonder when I will stop mourning our old life. I break down and sob at least weekly. I try not to do it in front him because I know it would just make him feel worse, but sometimes I just can't hold it back anymore. It's so comforting to know that I'm not the only one who feels this way. It's a battle every day. You and all of the other "quad wives" that I have met are amazing. Our husbands are amazing. It really is a wonderful community. Thank you for such honest posts like this. Nobody understands this life and these feelings any better than we do. I'm giving you all the virtual hugs I can :-)

MrSCItruth said...
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Jamie said...
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Mike Ritter said...

Recently Dana removed a comment by somebody who gave her grief for this post. Just wanted to reiterate that we are in this TOGETHER. As a husband with a disability I am reminded constantly of the limitations I bring to our marriage. We went into this with rose-colored glasses and soon met the overwhelming realities. Is my wife perfect? A saint? No. But she's passionate and hard-working. When she's committed she's committed.

Let nobody think for one moment we aren't in this together. We are as strong as any team on the gridiron or the ice and fight just as hard. And just the same come after my wife behind the cloak of some anonymous pansy-ass profile you'll get deleted. Just because my wife doesn't want to get me riled up and going after you.

Nobody messes with my all-star!!!

Unknown said...

Don't hold back Mike. Tell that peckerhead how you really feel.

Love you both.

Moya Gray said...

Dana - and Mike - I can't tell you how much I appreciate your post today. It completely reflects what I felt last week.

May I suggest that we caregivers get together for a Caregivers Vacation? I think we could all look forward to something fun with people who understand us!

Barbara said...

Such an inspiration and thought provoking. What can I say. May Blessings abound in your life above and beyond you could ever have expected.

Just came over from Cheri's. Barbara

Unknown said...

I just happened to stumble upon this blog, and I've been reading with tears in my eyes. My husband has a C7 injury, and today has been one of those not so good days. It helps so much just to know there are others out there like me, who feel the way I do sometimes. Blessings to all of you!

Unknown said...

Thank you is all I can say. My husband is a c-4 quad and we can so relate. There are so many emotions involved with this new lifestyle. Thank you for your honesty! God bless

Unknown said...

I can only imagine what it is like to have a para husband. I read this with my ADD daughter and 3 other kids in mind. It is how I feel about them some/most of the time. I know it is Gods plan for me to be their mommy however, I wonder If I can. Again, I know it is not the same AT ALL, but it makes me feel a little more human to know others feel this way about their family, no matter the reason.

Unknown said...

Thank you for this. We are 7 months out from my husbands C3 and T4 injury and have only recently brought him home. I'm so glad I found your blog!

Nichole Gustafson said...

I know this is an old post but I just stumbled on your account and want to thank you for your honesty! I don’t know a lot about you guys yet but my husband is a C5 quad and we’ve been together 14 years (married for 7 now) and I still Wonder at the unending feeling of it all and the overwhelming exhaustion of caring for someone else with these extra needs and limitations. Thank you for your vulnerability and honesty!! Would love to get connected with more couples in our situation

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