“Being deeply loved by someone gives you strength, while loving someone deeply gives you courage.” ~ Lao Tzu
Deep down I have a constant drumbeat of pain. I know it’s mental but I can’t ignore it. It’s like an everlasting ach. So powerful I feel hollow inside. And I’ve spent years trying to fill that emptiness. I’ve hunted down all the soul saving faces I could find. I’ve consulted with preachers, ministers and nuns. I’ve talked to guru masters, witch doctors and faith healers. I’ve hired yoga teachers, psychiatrist and social workers. But none of them have helped. My quest has become a vain pursuit that temporarily satisfied my void with insubstantial solutions.
I finally looked up to the sky and silently said, “God, please! Help me!”
I always thought my prayer hadn’t been answered. I’m now realizing, I did receive help. My relief was hiding in plain sight. And has been with me since my doctor’s words altered my life.
The answer is, you.
Every time MS pulls me down the rabbit hole, you jump in with me. You hold my hand while I walk on the edge of madness. Sometimes I’m so afraid I can feel the fear caught in my throat. Trying to choke the life right out of me. But whenever I’m in that unsolicited dance with the devil, you always cut in.
When my pain is holding me captive. Trapping me in a dark place. Blocking all the exits. You constantly break through to find me and bring me to the light. When my world is on fire, you put out the flames. When everybody ran away. You remained. When I suffered. You reassured. When I weep. You dry my tears.
I sometimes wonder could I do the same. Would I be there for you like you are for me? Could I watch as a chronic progressive debilitating disease ravages your body?
I can only hope I would, because you do for me.
Love is fragile. And I must admit, your love scares me. What happens if I lose it? I know caring for me can be hard and leaving is so easy. But you choose to stay. I don’t know why. But you do. You have every reason to leave. Look at me. I’m weak. I’m helpless. I’m broken. But yet you stay. You always stay.
Whenever we are alone, I hold you tight. So tight, sometimes it hurts. I often wonder if this will be the last time we are together. The last time you touch me. The last time you kiss me. The last time you love me.
But it never is. You just continue to show affection. And it’s the only thing that really keeps me going. I actually use that love to escape every once in a while. It helps to free me. It lets me dream of better times. I am empowered by it. It gives me hope. Hope for my future and hope for a cure.
I guess when I meet God, everything will become clear. But until then, I believe in my heart you were sent to save me.
This disease is so very hard to live with alone. So I want to say thank you for being there and showing me how to love despite MS.
What a beautiful, beautiful note and acknowledgment of someone so special. I think while reading it I feel a little bit in love with your Tommy too!! : )) I also am blessed to have a partner and husband who has been there for MS, RA, SS, Fibro….and I don’t believe he is leaving. Even now when we are selling some assets (thank God we had them) due to my not being able to work any longer and being denied my insurance. I feel so badly and so guilty but he reminds me day in and day out that I didn’t ask for this and we are in it together forever.
Your blog is beautiful…thank you.
JoAnn
I was thrilled to read your entire story. It is nice to see that those of us with MS are not alone! I just started my own blog on the subject. I find that talking about all of this helps me to deal with the everyday changes that I experience. I am a mother of 3 and I have not been able to work for the past 8 years or so and that was a huge blow to my ego. My partner is wonderful and helps in every way he can and I often think he has no idea how much he is appreciated by myself and my kids. I am happy to see that you are dealing with this positively, in my opinion that is the only way to be! Thank you for your insight!
I just recently found your blog through reading Jodi’s blog. I also live in Louisiana. I am currently in the process of testing and diagnosis, doctors are leaning towards MS and I have lots of health and mobility issues right now. I have been with my husband since I was fourteen years old and we have been married for almost 20 years. We have three daughters, 15, 13, and 6. The hardest part of all of this is letting them take care of me when it has always been me taking care of them. Sometimes I feel like it would be fairer for me to just drive away so they could continue their life without this horrible disruption. Your words in this post are my exact feelings towards my own precious husband. I could not have written it any better. I’m so glad to have found you! 🙂
I was diagnosed just under 5 years ago and am recently divorced. I am also a single parent. MS is a very hard, lonely journey to take alone, especially as the parent of a very moody, angry, emotional teenage boy. Those who have someone in their corner should definitely count their blessings.
Dear Amy
I am so sorry to hear about your situation it brings tears to my eyes. MS is such a complex disease and can be so difficult to endure. You are in my thoughts. Stay strong and do something nice for yourself today.
So powerful and emotional. And I understand your words so much. My husband and I got married 3 months before my diagnosis. I told him if he left I would understand, that it wasn’t what he signed up for. He’s been my strength!!! Your words are incredibly beautiful and so are you. God Bless you.
Thank you for letting us peer through a crack in the window of your life. Much love and hugs to you and yours
I Will call you soon
HI Nicole, My husband has also been by my side through this ms journey. Like Tommy, he is with me through thick and thin. I remember we went shopping and he was getting scooter together for me. Someone was curious and wanted info. Her daughter was diagnosed with ms. She said her husband took off immediately. As you said, it would be so easy to leave with this situation, but they stay. We are so very Blessed. Thank-you for always writing such inspirational, informative and always interesting posts. Always know you have helped so many of us by putting it out there. God Bless
Love lights up the room whenever I see you two together. This is lovely – thanks for sharing this inside look.
Nicole ,
I am elated to see such a happy couple where love conquers MS! I love the song, “All to Jesus, I surrender , all to him I freely give .” God Bless You and your humble spirit . Your blog gives me hope in this daily struggle .❤️
Hi Nicole,
I’m grateful to have met you and Tommy in January and to witness the care he gives you, it’s clear that he does so out of love. Stay strong, and keep moving, I’m still running to help raise awareness of MS and funds to help find a cure! Keep it real as you always do and I’m on track to run the #Chicagomarathon on October 11, 2015 for the finishmsillinois team.
Your Friend,
Tim
#MSRunnerDude
You are indeed blessed!! I was married for 37 years. I found out I had MS in 2008 although I knew it long before that. My ex-husband could not handle it and I am only marginally disabled!! He had an affair and left me for a younger woman who “he had more in common with” two years ago!! He would never admit it, but was the MS!! I have since met an awesome man who loves me for who I am!! We are getting married soon and he treats me like I am the most beautiful woman in the world. I am looking forward to the future instead of fearing what it will bring!!
Donna, congratulations! hanging in there.
Beautiful Nicole- thank you..
After I posted my comment I realized it sounded weird. I meant, thank you for writing such a beautiful post..
Your posts always validate me, Nicole. I honor your honesty and thank you for being so candid with us. I tell my 15 yr old daughter, that I’m sorry, a lot. I tell her I’m sorry for every occasion that MS takes my ability to perform those every day life things that “normies” (aka healthy folks) can do. I say that I’m sorry to my friends as well. But they know that its my illness. My X left me, but I’m glad he did, because he wasn’t compassionate. I learned that he was not a supportive person. He personalized my disability and disease. He was the wrong person to have on my team. I often reflect on a past post of yours where you kept telling your husband that you were sorry, and he told you to stop apologizing for having MS. Now, that girl, is a team mate, a loyal man and you are worthy of being loved by that man.
I am so thankful for your blog. I, too, echo Melissa’s comments. My husband and I have been married for 36 years which have lately been a struggle because I tend to ask for a lot! Trouble is, my brain works faster than my body, to which most people with MS can probably relate… I try daily to adhere to the passage in James 1:2-4 where is says “Consider it all joy, my brethren, when you encounter various trials, knowing that the testing of your faith produces endurance. And let endurance have its perfect result, so that you may be perfect and complete, lacking in nothing.” Difficult! Much easier said than done!!
Blessed.
What it must feel like to be taken care of instead of feeling like a burden. Your husband is a very special man. My husband tries but bitches and complains every day about how much he has to do. I get so sick of it on one hand, does he think I wanted this for him. Did I ask for MS. Then on the other hand I try hard to understand what he has to go through but it’s hard. I would give anything to be normal able bodied again and do it all myself.
I was so touched by this. It is so beautifully written.You are blessed to have such a caring and wonderful husband by your side.My husband is wonderful also. I feel so blessed to have him.May God continue to bless you to share your gift with others.
Harriett
What a beautiful tribute to your Tommy. I often think the same way, and I’m glad you put those thoughts to words!
Hello Nicole. My name is Jonathan, but most people call me Johan. Diagnosed with 2ndryMS in 2012, quitting work in 2014 due to MS, I spend some time on the internet and have been following your blog for some time. Very Impressed I am. Thank you for blogging. Just wanted to say hello, introduce myself, and stop with the voyeuristic stalking. Thanks again.
JE
This made me cry Nicole. Yes some days feel so hopeless. Hang in there with that angel by your side.
Lovely and powerful post Nicole. I can relate, as I’m fortunate to also have an angel. Remember that it works both ways! Thank you for sharing, and continue to take care.
So beautiful. Thank you.
Nicole,
I have never commented on your post even though I read it every week. I know when people make the comment I am about to make, it turns others off to them. I really don’t know why. I care about you, and so I will make it.
Jesus Christ — my Savior — he is what you are looking for. He is the friend that sticks closer than a brother. Seek out Jesus — the new life you find will help you to make sense of your current circumstances. I hope you understand my concern for you.
While I can appreciate your concern, telling others what to do and/or how to do it (“he is what you’re looking for”) is often – NOT helpful. Rather I would like to hear how your faith is helping YOU deal with your circumstances.
Not all are christian, nor want to be. I’m glad that it’s working for you. In future, it would be more helpful to hear what works for you, instead of acting like a bible-banger. Please stick with your own experiences instead of telling others what they need to do. Many of us already have several people in our lives who are eager to tell us what to do.
Nicole, you have brought tears to my eyes. Today’s post is heartbreakingly lovely. God Bless You Both!
Sharlene
Wow Nicole, that is a powerful piece of writing. Of course he won’t leave such a beautiful person.
God bless you. Nicole.
So nicely put.
I have an angel too.
Take care my friend.
Faye