I really hesitate these days to post on my down days. I am not sure if it is that I don’t want to document my fears and have to read about them in the future, or that I just simply am afraid to verbalize them. Maybe it is that I want to keep things happy on the blog, and not constantly be bringing out the sad face clown. But…….. if I don’t post this, it feels a bit like lying….like “Oh look at our fabulous sailing day! Life is so sunny and peachy keen”.
We had a fabulous Saturday, then on Sunday Bill was sick. Vague sore throat and a bit nauseated. A virus no doubt. The kids have had it. I had a touch of it. There was just something else there that I couldn’t put my thumb on. He was withdrawn and short tempered…..completely normal behavior for someone who does not feel well. I just know him, and knew there was more to the story.
On the stroke syndrome front, his symptoms have been very, very minimal, coming and going much less frequently and with less intensity. In fact, it has been months since he has felt the tingling etc. This has been so wonderful, and his mood has been so fantastic. He has been really, really happy and it shows in his face and interactions with us.
He was different on Sunday and that is why I knew there was more to him being sick than just a little virus.
On Monday the kids went to school and Mia to her Nannies, so Bill and I had some quiet time together. I sat next to him on the couch and asked him to tell me what was wrong. He said the tingling was back pretty bad, and he just didn’t feel well. Still a virus, but with some stroke residual mixed in. He immediately said he had no headache, because he knew I was going to freak out, thinking he was having another stroke.
Folks, I am really, really tired of being scared. I am tired of burying him in my mind several times each week. I am sick and tired of imagining my life without him. I photograph him like it could be the last ones I ever take of him. (sob) I take pictures of him to remember every line on his face, the color and kindness of his eyes. Photos for my children to cherish.
This week it will be one year since Bill had his migraine stroke. I know that what happened has led us down a wonderful path this year, and I am so very grateful for every, single second of it. Please don’t take this as a “I wish it had never happened” rant, because I am so over that. God has shown us the some of the “whys”, and I understand the path so far.
It is the future that terrifies me. Sometimes it feels like the floor has just suddenly dropped out from under me and I am left with that empty feeling in my stomach. That fear. That feeling, welling up inside of me, that makes me cry, shake and feel as if I cannot take one! more! minute of it. I am on day 3 of that state of mind.
The worst part is that I really don’t have anyone to talk to about it. Sure, Bill and I talk, but it is kind of hard to tell him that I am scared he is going to die ( I do, because we are very honest about everything, but who wants to hear that when they are feeling bad?) He is already under enough pressure trying to hide the fact that he is feeling bad and worried himself. He doesn’t want me to get like this, so he just gets quiet. I have known this man for almost 20 years, and the saying “one flesh” for us is quite literal. It is like a sixth sense for me. I just know when something is off.
As for my friends and family………Some people just don’t get it and it makes me feel so alone, like I am screaming into a void. Bill is walking around, going to work, sailing, surfing. He goes to Scouts with the boys, and rides his bike 60+ miles each week. Seeing is believing, and what they see is a well person. I get the same thing over and over again….”Things could be so much worse”, “Look at the positive of all this”, “I honestly don’t understand why you are so worried”, or my favorite “I have never felt like that…maybe your faith needs some work”. Then there is this one: “Fear is not of God”……no it is not. It is human to fear, and I am human. I fear for the future. I fear spending any part of my life without Bill by my side, experiencing it with me. My faith in God is not based on Bill surviving this ordeal…faith will not keep him from dying. My faith in God is in knowing that whatever happens, God loves me, when I am strong or when I am shattered and in grief.
Then, there are those who get it. Those who have faced fear head on, and continue to face it to this day. Those who have lost, and then found joy again, only to struggle with waiting for that next damn shoe to drop and take away that joy. I thank you from the bottom of my heart for listening to me…just plain listening…..and for getting it.
Another close friend suggested that I write down all of my fears, then burn it.
I think deleting it into a cyber void will work the same. So, in that spirit, I will take this post down in 24 hours.
She also suggested that I keep a journal and fill it full of plans for the future. Plans that include Bill. A future that carries us, together, into our 50′s, 60′s, 70′s and 80′s.
This is what I hope for. This is how I see my future…………..I see Bill and I on a sailboat, in the Caribbean, celebrating our 40th wedding anniversary. There might even be surf boards lashed to the deck. Certainly there will be frosty glasses filled with margaritas. Our faces will be tanned, with deep lines etched near our mouths from years of smiling and happiness. I see his soft hand in mine, and the light in his blue eyes burning into mine…….I am in love, and will be until the day I die.
What a touching and personal post. Thank you for sharing so openly. It’s a blessing to many.
I just found your blog tonight and read this post. It caught my eye since I have a daughter who is terminally ill. I know that caring for a sick and dying child is different than having your husband in that situation but it is still heart-wrenching. My daughter was born with congenital heart defects. She has undergone 5 heart surgeries, strokes, blindness, paralysis, lung bleeds and so many other severe illnesses and complications. For years I have heard the same comments by people who don’t get it… but I do. I appreciate your honesty and I’m glad you didn’t take down this post. It is actually uplifting. I sure could feel the love you have for your husband. It’s wonderful.
My thoughts and prayers are with you.
Nancy
oh jody. that sounds so scary and uplifting at the same time. post what you want. this is your place. but know that you are really so damn inspirational. amazing you are.
How lovely it is to read of a wife’s true love, dependence, and admiration of her husband when the t.v. and internet are full of demeaning relationships. We know we are not promised tomorrow. I, too, have many of the same thoughts about my husband.
Thank you for sharing your pain. I appreciate it when people are honest about their fears because so often in life people hide. When you hide your fear it actually hurts you and others even more. Of course nobody wants to be a “whiner” but you are far far from that. You have a real issue in your life, and I think that those people who tell you to work on your faith can honestly just go you know where. The God I know has not put us on this earth to only know joy. We are here to experience God’s love and our love for each other. That does not mean that we get a life without great suffering. You have great suffering and you have great love. There is no way around that. It just is, and thank you for sharing your feelings and your fears.
There are so many unknown’s in life. When one of those is your husband’s health, I can understand how you must feel. I hope that he starts feeling better soon, and that the two of you can get some answers and reassurance for the future soon.
Beautiful post…..
Your love for your husband is an inspiration. ((HUGS))
Oh, Jody. You say it so well. I haven’t been exactly there but I feel that I understand, and I’m thinking of and praying for you and Bill.
I get it. (((Hugs)))
You DESERVE to spend 40+ years together.
Hi Jody,
I just can’t believe it’s been almost a year since Bill’s stroke.
I understand your fears of course, but I can totally visualize you two celebrating your 40th out there on that sailboat!
Great heartfelt post that speaks to so many of us!!
((hugs))
Hi, Jody,
I don’t know if you remember me from the clubfoot list way back when (Joy, mom to Rose and now Iris, Spencer, and Grant), but I found your blog awhile ago. I have enjoyed reading about and seeing your beautiful family.
Your post about Bill was poignant and lovely. I think acknowledging and exploring the “bad” or down days is just as important as embracing the good days.
I can’t say that I have a similar situation, but I’ve had similar feelings about my youngest. He was born in 2005 with spina bifida/hydrocephalus and other stuff. He’s had multiple surgeries, and I always feel a bit watchful. I have more pictures of him, I think, than my first three combined. He looks and appears okay to many, but under the surface there are things I’m always watching for.
Wishing you and Bill many, many more years together.
There are not words to say what I felt when reading your post. I wish you both many, many more years of love, laughter and margaritas– together.
Jody,
My heart goes out to you. I can’t say I know what you are going thru, but what I can say is I am going to be praying for you during this, and pray that you will continue to be so wonderful!
(((huggs))) to you and yours.
I understand as best I can – living with a chronic illness is somewhat similar, people keep saying “you must be better – you look great!” or “You can’t be hurting, you look fine.” etc etc. You are right – there are so many people who just don’t get it.
I’m here to listen if you ever want to phone chat.
I love your friend’s idea of the journal of plans for the future. You and Bill have a wonderful bond, and I am so glad you can celebrate that!
What a lovely testament of the love that the 2 of you share.
For all its sadness there sheer volume of love that you feel for this man is so evident especially in your moments of fear.
In 60 years when you think back to this date may you still have a pair of shoes to share
I really love when you write about how in love you are with your husband. All to often you hear wives constantly complaining, and its wonderful to see your love for Bill shine so brightly. My thoughts & prayers are always with you ((HUGS))
(((HUGS)))
I can’t even not imagine being able to celebrate our 40th wedding anniversary. The alternative seems so sad. Bill is doing what he can to stay in good health and you are doing your very best to appreciate every moment of your life together. May it be a long one
Hugs to you Jodi. My heart, thoughts, and prayers ARE with you.
Hugs to you Jodi. My heart thoughts and prayers and with you.
Recently found your blog and find it lovely…and I must share that I understand fully what you feel. I’ve had a rough two years with my own husbands health and it’s still a daily struggle and has affected our lives in SO many ways. BUT- God is good. God amazes me in the way He gives us our “little life lessons” through these nerve wracking, gut wrenching incidents..but by His grace I get through. And so will you.
Blessings,
Sarah
Sweetie— you shouldn’t feel bad for feeling what you feel. You’ve all been through so much…and continue to. I doubt very much that you’ll EVER be comfortable again, where your husband is concerned.
“There are times when fear is good. It must keep its watchful place at the heart’s controls. There is advantage in the wisdom won from pain.â€~~Aeschylus…ancient greek playwright.
Hang in there and just feel.
Hugs…
The title of your post sums it up really well. Even thinking about losing your one true loving is heartbreaking.
Oh, I hope I will never be one of those who ‘don’t get it’ when a friend is in need.
Jodi– This post is just as much a part of who you are as all the happy posts. In fact, the intensity of the love you and Bill share is even stronger here. It is beautiful.
When my father died suddenly, I had people tell me how lucky I was to get him as long as I had. Then they would proceed to tell me about their story, or the story of someone they know who lost their loved one in an even more tragic way. Those stories never once helped me feel better. They never once made the feeling of losing him too soon go away.
When I think of losing my husband, it is like stepping into my own personal mental hell. And I get that w/o having had to face an illness with him as you have with Bill. You have so much to feed those fears. That you fight it so well and do not let them consume you is so strong of you.
Thank you for sharing this side of your thoughts. I hope Bill is ok and the symptoms ease quickly.
((HUGS))
sorry – meant for that to say JUST a symptom
How very real this is to read. I especially appreciated your thoughts on faith and fear not always being a symptom. Thank you for joining in!
Jodi, thank you for publishing this. You have a beautiful family and so much to be thankful for. Live each day at a time, you have such a positive attitude and that will keep you going even through the down times. I’m sending a big Minnesota hug down to Texas.
You described the isolation you are feeling very cognizantly. Blessings & prayers that your wishes for the future will come true.
Jen
That people don’t get it is exactly why you should leave this post up!
I get it. I know that fear and you have touched my heart in an amazing way today. Thank you for adding your link to Woman to Woman and sharing this story. I know there must be others who need to read this. Will you leave it up for a little longer?
“A man who fears nothing is a man who loves nothing.” Hugs from me, too.
Hugs
mary