“The walls we build around us to keep sadness out also keeps out the joy.” ~ Jim Rohn
There is so much anguish in my soul that I can’t seem to think straight. I long for my past, I distress about my present and I am scared of my future. MS stings me with every heartbeat. It’s a physical sensation that courses through my veins. It’s like living in a world that’s on fire. Constantly changing. Unexpected mishaps are the norm. Luckily the physical pain comes and goes but the reality of my sorrowful circumstance is always there.
After every exacerbation, the psychological grief burrows into my consciousness and stays for weeks. It’s those times when I am in so much emotional distress I wish everyone in the world could feel my pain. I become stuck on vengeance even though no one as done me wrong. That’s because the disease makes me angry and that’s a shame. I have a loving heart but because of MS, all of that has changed. The closeness of MS tends to manifest hateful thoughts in my mind. Sucking all the oxygen out of the room. Making the air thin. So much, it’s hard to breathe.
Most times, I don’t know where the MS ends and I begin. I don’t even remember what it feels like to live without symptoms. So I just live in the pain where there is no space between the grief of the disease and the joys in my life. They’ve become so intermingled that even during happy events, I feel a little pain with the pleasure.
And because I don’t complain very much and mostly have a positive attitude, people say I’m brave. But I know the truth. I’m not brave. My silence is not bravery. It’s fear. Fear I will never be who I once was. And even more terrifying, I have a fear of my reality.
When I see my reflection in the mirror, sometimes I turn away. I try to shield my eyes from the truth. That’s when the anxiety takes over. It keeps those evil thoughts burning inside of me as my veins run red hot with fear.
And when I feel that pain, I tend to retreat inside a dream world. I hide inside my mind, in a room, behind closed doors with the drapes drawn. I spend my days on my knees, peaking through a keyhole trying to catch a small view of my old life. Waiting for MS to let loose the hold it has over me.
But even when the curtains are closed, the fear still seems to get inside my head. It’s so relentless. It stalks me. When I try to hide, it follows me. Circling over me like a buzzard. Waiting for me to fail, so it can mock me. No sympathy, just snickers and judgment. It controls me. It keeps me so afraid, if you stand next to me, you can feel my pulse beating. You can hear my heart pounding and screaming for help. And if you look closely, you can see it in my eyes. My eyes show my anguish. That’s where the truth is. Where nothing can hide. And even as my sanity hangs on the fringe, I know I must stay strong while facing that hard truth everyday.
You have to know, I hate thinking this way. It’s just that MS is always there. It’s so real. If only I could get some space, just a little breathing space.
I’m sorry it’s been so long since you’ve heard from me. I just regained access to my AOL account this week after being “hacked in December. I’ll update my email for you and want you to know how much I appreciate all you do and how you keep it real! Ironically I’m writing from my hospital room as I have experience my first relapse after being diagnosed with RRMS 10+ years ago. I’m doing much better and will email some of the details to you because I’m still getting tested for othe things as well yet it appears I have a cyst in my liver now as well.
I just wrote to encourage you and I know you are a warrior so keep fighting and #KeepMoving.
Hi Nicolle x. Your words made me cry in the best possible way. I have never been able to find the right words to explain to loved ones how I feel and I just keep up with the usual “am fine, all ok, am coping blah blah. Your post was so eloquent yet brutal in its honesty. I thank you for that. Also all the others who have replied. It is amazing how knowing it is not just you that feels this way can comfort, reassure and bolster your confidence to ‘just keep swimming’ and find a way to live our lives well xxx.
I couldn’t say it better. I have been sick my entire life, I have been in pain each and every day. I thought one day life would give me a break, instead I was diagnosed with MS. And now, I will never be free. You are not alone and never will be. All of us will keep on fighting.
“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars” – Khalil Gibran
I wish I was as eloquent as you Nicole. I hope today is a grand day for you and the little MS demons bugger off for a bit. Stay strong!
For pain I have found trigger point shots helpful. The TENS unit is also helpful but not lasting.
The mental anguish is cured by acceptance but also by knowing that you are not alone.
I keep in mind that there are so many other individuals having a first day of a neurological disease including MS.
After 30 + years I think I have started to incorporate the this, that and the other thing into my day which can always interrupt fun or just a normal routine. I was yelled at by a godmother who has not visited me in 30+ years (she has promised and promised…) for not having the health to drive 500 miles round trip in one day this past Wednesday for my mom’s birthday. (Eye’s, recovering from the flu, back pain and that monster fatigue is understandable to some.)
I am focused on only the positive as best I can muster this year. I am fearful of the creeping lesion load so I decided to ask for as much help as I can to avoid negativity. That is one tactic. My other tactic is to help others as much as I can without being intrusive. I think that gives the immune system a boost. I would like a service dog for a third tactic but I have little Roisin (Irish for ‘Little Rose’) always willing to amuse me and see the bright side. (She is 3 going on 6 months in behavior – she a clown like kitty.)
I hope the day after you wrote what we all feel was a helluva lot better Nicole!
I hear you Nicole! I have found trigger point shots helpful. The mental anguish is cured by acceptance but also by knowing that you are not alone, there are so many other individuals having a first day of a neurological disease. I am focused on only the positive as best I can muster this year. I am fearful of the creeping lesion load so I decided to ask for as much help as I can to avoid negativity. That is one tactic. My other tactic is to help others as much as I can without being intrusive. I would like a service dog for a third tactic but I have little Roisin (Irish for ‘Little Rose’) always willing to amuse me and see the bright side. (She is 3 going on 6 months in behavior – she a clown like kitty.)
Nicole you definitely aren’t alone. This disease sucks so much more than what anyone without it can understand. February 8 will be 3 years since I watched my entire right side of my body go into paralysis in a matter of minutes. After extensive physical, occupational, & speech therapy for 8 weeks I was “well enough” to pretend to be normal again and go back to work in a cubicle 40 hours a week. I’m single, and now my hope for marriage and children is pretty much gone. I’m not being negative, just realistic. The only thing that makes me slightly happy is when it is dark, cold, and/or raining outside, because I know everyone else is sitting inside like me. I dread spring & summer, which is the exact opposite of how I used to be. I hate MS – the gift that keeps on taking.
When I read your post anon, I thought “Oh my, this person must be reading my thoughts and feelings” especially about summer and nighttime. I’ve been dealing with this damn disease for over 35 years and it unfortunately doesn’t get any easier. At least we have each other so it doesn’t seem to be such an alone walk.
This is such a wonderful reminder and inspiration of why I am doing in Multiple Sclerosis. I shared the blog with my students and staff. They are very moved, too. Thank you for helping us to put a “human face” to what we do.
My blessing, thoughts and prayers,
Nicole all I can say is WOW ! Your words ring so true. Not much I can add for comments as it has already been said. Thank you for taking your time to blog and to share with all of us.
I can’t add any more to what you have written. The terror and the desperation for just a decent moment; a brief reprieve from this hell….I can relate more than I can possibly express. Please try to take joy in the little things, for me it is the only thing that makes life bearable.
Ditto Nicole, ditto.
What a powerful blog entry Nicole. I am so sorry that pain – physical and emotional – has become such a large part of your life. You are a beautiful woman and I am grateful that you are my friend. All I know is that you are an inspiration to me and how to live life no matter what.
It is okay to be scared. It is okay to be angry. It is okay to be mad. All of these are valid emotions to have – especially since you are living with the horror of MS all the time. I only hope that you still have times that you experience joy, happiness and love. (even if it is mixed with pain) Hold on to that. Thank you for being you.
Nicole, do you listen to podcasts? If not, it would be a great idea to download some for your iPhone. My favorite is “Joni and friends.” You probably already know her story, diving accident at 17 years old which left her a quadriplegic. She is a true inspiration to me every day-Monday through Friday that is-!
Love sharing your blog. Reflections on many mutual experiences breeds great camaraderie among those of us with MS… keep on keeping on! It’s all we can do!
Thank you for saying it.
I really feel the pain that you feel, because I feel it too everyday. People think I’m brave too, and really positive. What they don’t see is the inner dialogue that I have with my body, and my mind every day. I question them, I ask them why. Of course there is no satisfactory reply. So when I’m about as low as I can go, something or someone catches me, and stops me falling. This time it was my keyboard. Tapping out and trying to create melody saved me this time. I would like you to know that this blog has also saved me several times Nicole. I have been reading but never posted before, but I was so moved by your current blog I had to say I understand and you’re not alone.
Your experience is as real as real gets. MS doesn’t exist. It’s just the name we give our symptoms.
We all search for a “why.” For specific reasons, “why” what’s happened to me has happened to me and why my life got put into a blender and it was so comfortable and now it’s over.
My own medical caregivers say this and many such things go into the category “Yeah, this crap happens sometimes, and boy does it suck.” Knowing the specifics doesn’t ameliorate that particular truth. And not being able to change things doesn’t make them easier to deal with… see above under “suck.”
So what is there to do? Live. Breathe the air. Look at flowers. Make tea. Listen to music you like. Ask a friend to come talk to you. Call a friend who can’t come over (out of state or whatever reason). Sometimes “just listen” is precisely the care someone else needs, and in giving, we receive.
You are redolent with perception and eloquence. There is beauty in you, that the MS Experience can’t touch. Screw the symptoms. Be beautiful. It’s your nature. So… just live. Which is quite challenging enough, for us here on this little world, MS-accessorized or not.
you are good For me.
Thank you for your wonderfully written, and poetic, piece.
It hurts to read this as it rings so true with me, although after fifteen years MS has become a dull background noise. But there are days when it drives me into a hole of depression and pain. I’m fortunate that I’m retired so can choose my distractions – like writing fiction or playing fantasy games.
Sending you love and blessings.
You speak for all of us. And so eloquently. I can only quote a man who had every reason to feel afraid and somehow rose above it, Nelson Mandela:
The brave man is not he who does not feel afraid, but he who conquers fear.
That was so powerful! Thank you for having the courage to put into words how many of us feel most or all of the time. My prayers to you.
My heart breaks for you! Please know that you are not alone! 🙁